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Case Study 3 – Palliative and End-of-Life Care

Click here to review the draft palliative and end-of-life care – interactive case study..

The following case vignette provides key concepts that could be considered when developing a plan of care for a patient who may require a controlled substance to manage their health concerns. As with any clinical situation, there are many patient variables that must be considered, including comorbid conditions, social determinants of health and their personal choices. You may choose to include different or additional health history and physical examination points, diagnostic tests, differential diagnoses and treatments depending on your patient’s context however this case vignette focuses on the aspects relevant to controlled substances.

Danny Kahan NP-Adult, specialty is palliative care Joshi Kamakani – 70 year old male with metastatic prostate cancer June Kamakani – patient’s wife Kelli Kamakani – patient’s 40 year old daughter

Danny is reviewing the patient history outside the house or in the car before visiting the patient.

Joshi Kamakani is a 70 year old retired engineer that the Palliative Care home care team and I have been looking after at home for the last two months. Joshi was diagnosed with inoperable prostate cancer three years ago and has been treated with ablative hormone therapy. Six months ago, Joshi started to have pain in his hips. His oncologist ordered a CT scan and found he had metastases in his ribs, pelvis and lumbar spine. Joshi and his wife June had a meeting with the team at the cancer centre and decided not to go ahead with any further cancer treatment. Our team has been involved since. June called me yesterday and asked me to make a home visit. Joshi has been having more pain this week and has been spending most of his time on the couch. He cannot get around without assistance and is very fatigued.

Joshi’s past medical history includes hypertension and reflux. He is taking Predisone 5 mg PO BID, Leuprorelin Depot 22.5mg IM every 3 months, hydrochlorothiazide 25 mg daily and pantoprazole 40 mg daily.

For pain, Joshi takes Morphine slow release 100 mg q12h and has not needed additional medication for breakthrough pain so far.

Takes place in the home. Patient is seen reclining on couch in first floor living room. Wife and daughter present.

Danny rings the doorbell and June lets him in.

June: Hi Danny. I’m so glad you’ve come.

Danny takes off his coat and shoes and walks into the living room. Kelli is sitting with her father who is covered up with a blanket on a couch in the main living area – he is awake but obviously drowsy. He smiles at Danny and holds out his hand. Danny shakes it a sits down in a chair opposite.

June: His pain killers just are not working any more – he’s uncomfortable when he is resting and it’s worse when he has to move around. It’s been happening for the last few weeks. He hasn’t had a fall but he is unsteady on his feet – especially soon after he get up. Joshi: I tried some acetaminophen from the drug store a few days ago but it really didn’t work. Kelli: Danny, you have to do something. He’s so uncomfortable. Danny: OK let’s talk about this a bit more. Joshi, were you sleepy after we increased the morphine 2 weeks ago? You were at 80 mg for each dose and now you are at 100 mg. Joshi: I was a bit sleepy for a few days and I had a bit of a weak stomach but that is gone now. I am a bit constipated though. Danny: when did you have your last bowel movement? Joshi: 4 days ago. Danny: OK we will have to address that today. I’d like to use the scale that I used at our last visit, it’s called the PPS, to assess your level of activity. ( Edmonton symptom assessment scale and Palliative Performance Score). Your PPS is 40% – last time I visited you were at 60%. June: yes, he is definitely having more trouble. I think the pain is preventing him from moving and that’s just making everything worse.

Danny: Joshi, your pain interference score tells me that the pain is severely interfering with your activity and I see that you are rating your current pain at rest at 6/10 and at 10/10 when you move. When I examined you, I did not note any changes from my last visit except for some new swelling over your left hip. June: Yes that’s where it is most sore – and before you ask, I am not going to the hospital for an xray. Kelli: Why can’t you just double his dose?

The user cannot advance until they have selected the correct scenario.

for this scenario: If the patient is to achieve pain control by using breakthrough doses, the NP can add up the total 24hour dose of routine and breakthrough doses and increase the morphine SR to incorporate the additional requirements. A dose of morphine 10-15 mg every 2 hours as needed could be added. For example, if Joshi used an additional 40 mg of breakthrough morphine and his pain assessment supported effectiveness of this dose with no adverse effects, the NP could increase the morphine SR to 120 mg BID. It would be important to continue breakthrough dosing in the face of this progressing palliative pain problem. [also link to other therapeutic options for pain) for this scenario. It is generally preferable to increase a baseline dose on the basis of PRN dose usage. A 50% increase without understanding the patient’s requirements may lead to an increase in adverse effects like drowsiness. Select another option. for this scenario. There is no evidence the morphine is not working, rather the dose may be inadequate. Given that opioids have no ceiling dose, the morphine dose may need to be increased. Opioid rotation is usually required when someone is having toxicity from their current medication or when dose escalations and breakthrough use continue and pain is not managed. Select another option. for this scenario. There is no evidence to support the use of two similar opioids (like morphine and hydromorphone) simultaneously as regular doses. Select another option.

Danny [THINKS]: I will also add a bowel regime to address Joshi’s constipation and provide an order for a PRN anti-nauseant like metoclopramide or ondansetron. Joshi and his family will need to have education about the timeline of the peak benefit of the change in the regular dose, keeping track of PRN use, proper use of breakthrough medications (before care or any activity that causes pain), any other interventions we can include to help with his pain including adding other medications.

June: Danny, can I speak to you in private for a moment? June and Danny move to a private area of the house. Kelli and Joshi remain on the sofa. June: Danny, I have some concerns about having extra medication in the house and I need some advice on how to deal with this. My daughter had a real problem with drugs when she was in high school. She had to have treatment and as far as I know, she has been clean for the past 2 years. I have talked to her about having medication in the house and she tells me she’s not tempted but I really want to be sure we don’t have any incidents. I trust my daughter but I do worry that some things are beyond her control. Danny: Well June, it is always a good practice to have a plan for safe storage of medications. Here is some information about where you can purchase a locked box. I recommend you keep a key and have the hospice nurse take the other and have it numbered and controlled at the hospice office for the use of the nurses that care for Joshi. In the meantime, keep the medications in a place that you and Joshi can monitor and please keep a count of the medication in the containers and continue to write down when medication is given. June: Thanks Danny – I don’t want my daughter to think I don’t trust her. This should help.

Two weeks later – Danny is back in his office reviewing Joshi’s file with a Nurse Practitioner student…

Follow-up case question by Danny.

Student: Next up is Joshi Kamakani for review… Danny: Well, I’ve just been to see Joshi and his family. It has been two weeks since we increased his dose of morphine SR. We also added a neuropathic pain agent to help with his pain which has made him a bit more drowsy. He continues to take 20-30 mg breakthrough morphine/day and I noticed today that he has some myoclonus. Joshi’s pain is still in the moderate range with activity and now nausea is a problem.

Opioid rotation and opioid equianalgesia from NOUGG (McMaster Guidelines).

Danny: I think a rotation of opioid is the next step. Student: What medication should Danny consider and at what dose?

Answers:

–

Danny: Joshi is using 270 mg oral morphine equivalents per day. To convert this dose to hydromorphone, the medication I have chosen to rotate to, we multiply by 0.2. Morphine 270 mg x 0.2 = 54 mg hydromorphone/day. We will want to convert 60% of the total daily dose so 54mg x .6 = 32mg. I want to give Joshi the new dose in a slow release form. It is most practical to provide Joshi with hydromorphone SR 15mg q12h and also provide him an additional 2-3 mg of hydromorphone immediate release for breakthrough pain. Providing him with the breakthrough dosing will be sure Joshi can have additional medication to help him until we are sure we have a stable, effective dose in 48-72 hours.

to be faxed to Joshi’s pharmacy for the following:

A copy of Danny’s finished prescription is displayed once the viewer has had an opportunity to try writing one themselves.

Learning Outcome

This interactive case study covered the following information:

Opiate Titration
Opiate Rotation
Pain Assessment
Assessment of adverse effects
Safety Assessment
Collaboration
Family centred care

Nursing General
Clinical Specialties
Cancer & Palliative Care Nursing

Case Studies in Palliative and End-of-Life Care

ISBN: 978-1-118-70470-7

Wiley-Blackwell

Case Studies in Palliative and End-of-Life Care

Margaret L. Campbell

The book is organized into three sections covering subjects related to communication, symptom management, and family care. Each case is presented in a consistent, logical format for ease of use, highlighting key evidence-based concepts including the case history, care setting, diagnosis and prognosis, assessment, treatment considerations, and family support.

Margaret L. Campbell, PhD, RN, FPCN is Associate Professor – Research in the Office for Health Research at the College of Nursing at Wayne State University in Detroit, Michigan.

Includes more than 35 cases covering a range of palliative and end-of-life care subjects
Emphasizes care of the family as well as the patient
Easy to follow, structured format for each case
Written by experts in the field

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Palliative Wound Care

Case studies.

Walsh, Anne ANP-BC, CWOCN, ACHPN

Anne Walsh, ANP-BC, CWOCN, ACHPN, is Visiting Nurse Service of New York Hospice & Palliative Care.

Address correspondence to Anne Walsh, ANP-BC, CWOCN, ACHPN, Visiting Nurse Service of New York Hospice & Palliative Care ( [email protected] ).

Patients with advanced illness may present to palliative care or hospice with unmanaged symptoms that may be exacerbated by the presence of a wound. The wound can be a constant reminder to the patient and caregiver of the underlying illness. Distressing symptoms such as wound pain, odor, bleeding, and/or excessive exudate may impede the patients' ability to spend quality time with loved ones when they need them the most. Although patients may present with wounds of varying etiologies, the most common wounds seen in this patient population are pressure-related injuries. However, there is a shortage of both wound and palliative specialized clinicians. Telehealth and the use of other technology can be a way to address this shortage. This will grant access to a broader number of patients to ensure appropriate wound care plans are in place to meet the goals of care. Although wound healing may not always be possible in this patient population, having access to specialized wound and palliative experts can improve the quality of life for patients and their caregivers.

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Clinical Journal of Oncology Nursing
Number 6 / December 2022

Clinical Oncology Nurse Best Practices: Palliative Care and End-of-Life Conversations

Kellie Spine

Anne Skwira-Brown

Deanna Schlifke

Background: Clinical oncology nurses (CONs) support and guide patients and caregivers by encouraging open dialogue and using effective communication skills. Palliative care (PC) and preparing for the end of life require that CONs apply experienced communication skills that are focused, nuanced, and helpful.

Objectives: The aim of this article is to review communication methods and competencies, which can contribute to a best practices foundation for PC-focused conversations with patients and caregivers.

Methods: Expert CONs provided case studies and responded to clinical scenarios, which illustrated and highlighted communication competencies as applied to PC-focused conversations.

Findings: To establish communication competencies applied during PC-focused conversations with patients and caregivers, CONs can develop, enhance, and apply timely and effective communication skills in clinical oncology practice. To build a foundation for PC-focused communication competencies, nurses can access PC and communication skill resources, including mentoring by expert interprofessional practitioners from PC teams.

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Earn free contact hours: Click here to connect to the evaluation. Certified nurses can claim no more than 1 total ILNA point for this program. Up to 1 ILNA point may be applied to Care Continuum OR Psychosocial Dimensions of Care OR Quality of Life. See www.oncc.org for complete details on certification.

During all phases of the illness trajectory of a patient with cancer, clinical oncology nurses support and guide patients and their caregivers by encouraging open dialogue and using effective communication skills. For nurse, patient, and caregiver conversations about palliative care and end-of-life decisions, nurses can apply advanced communication skills, addressing illness complexities, patients’ and caregivers’ stresses, and patients’ life review with existential insights (Kwame & Petrucka, 2021; Moore et al., 2018; Wittenberg et al., 2018).

By example from the following case studies and accompanying scenarios and responses, three expert clinical oncology nurses applied their seasoned communication competencies to real-world palliative care–focused conversations (Brown et al., 2010). The case studies that follow include having conversations with patients about advance directives, relaying emotionally packed information to family members, and managing conflict among family members about treatment decisions.

In addition, in Figures 1–5, communication skills applied to palliative care–focused conversation scenarios include the following situations: how to provide clinical care when a patient’s caregivers are anxious, how to handle patient questions about prognosis, what to do when a nurse disagrees with a physician-established plan of care, when and how to introduce the concept of palliative care to a patient and caregivers, and when and how to discuss hospice with a patient and caregivers.

As best practices supporting difficult and often intimate conversations, the case studies and accompanying brief scenario conversations in this article illustrate how a clinical oncology nurse can initiate and continue conversations with patients and their caregivers about palliative care and end-of-life transitions and decision-making (Berg et al., 2021; Wittenberg et al., 2018). It is worth noting that nurses may have different ways of initiating or continuing ongoing conversations; all of these have merit and can be effective.

Based on the communication skills highlighted in Figure 6 and palliative care conversation resources (see Figure 7), the content of this article contributes to a scholarly based clinical foundation about palliative care–focused conversations. In addition, these case studies and scenario responses can serve as an initial guide for clinical nurses new to clinical oncology practice, as well as for veteran clinical oncology nurses who seek to refine their communication skills in the context of palliative care (Berg et al., 2021; Moore et al., 2018).

Case Study 1: Discussion With the Patient About Advance Directives

Kellie spine, msn, rn, ocn ®.

Ms. J is a 45-year-old woman with a history of ovarian cancer. She completed treatment two years ago and was considered to be in complete remission. Since then, she has continued to follow up with her oncologist. She recently started experiencing headaches. She called and notified her oncologist of this new onset of symptoms, and she was scheduled to come in for a clinic visit.

During Ms. J’s clinic visit, she was evaluated by her oncologist. No other neurologic abnormalities or signs of recurrence were noted during her assessment. The oncologist ordered MRI of the brain. The MRI revealed a mass, and Ms. J was scheduled back at the clinic to discuss the findings. The oncologist explained to Ms. J that the mass was indicative of an ovarian cancer recurrence with metastasis to the brain.

The oncology nurse, who knows Ms. J well through her initial treatment and follow-up visits, notes that Ms. J does not have an advance directive in place and wants to discuss this with her during this follow-up visit.

The nurse knows that Ms. J is divorced and has three adult children. During her initial treatment, Ms. J’s children were all involved in her care, but the nurse recalls disagreements among the children when it came to decisions about Ms. J’s care. The nurse is concerned that with her recurrence, Ms. J could eventually experience mental status changes that would deem her unable to make decisions about her care.

The nurse has worked in oncology for many years and has unfortunately seen too often that discussions about advance directives with a patient do not happen at all or are brought up too late. Although the nurse knows that discussions about advance care planning can feel uncomfortable to initiate, she is aware of the negative impact a delayed or avoided discussion can have, which can be overwhelming for patients and their family members when decisions feel rushed. Therefore, the nurse decides she will initiate the conversation about advance directives at this visit. She knows that all the members of the healthcare team play a vital role in discussing goals of care but feels that she has the knowledge and a good rapport with the patient to be able to effectively start the conversation (LeBlanc & Tulsky, 2022).

The nurse will use the PAUSE method to help her in discussing the topic of advance directives with Ms. J as follows (VitalTalk, n.d.):

U: Understand

The nurse asks Ms. J how she is feeling hearing about her cancer returning. The nurse offers to answer any questions she has right now and asks if Ms. J needs any support in sharing the news with her children; the nurse offers to talk with any of her children to explain what her treatment plan going forward will look like. Ms. J tells the nurse that she first will talk to her children but that they will likely have more questions; Ms. J would like to give them the nurse’s contact information to better explain the plan of care. Ms. J states that because there are three children, she will have her oldest daughter, Susan, be the contact person so the nurse does not have to discuss the same information with each of them individually.

The nurse says to Ms. J, “Because you mentioned Susan as the point of contact and we are going to be coming up with a plan of care for your recurrence, I wanted to take some time during your visit today to ask if you have thought about who you would want to make medical decisions for you, if for some reason you were not able to. Discussing this topic is something we like to do with all of our patients with a new diagnosis, and with brain involvement, there is a possibility you could become confused. Would you want Susan to be that person?” The nurse knows that normalizing the discussion will make opening up this discussion easier.

Ms. J pauses for a few seconds and says she is not sure. The nurse continues, “Having an advance directive is a way to ensure that your wishes related to your care are carried out. Have you heard of an advance directive?” Ms. J says she is not familiar with advance directives. The nurse goes on to explain to her that when someone does not have an advance directive, healthcare decisions fall on the next of kin, which in Ms. J’s situation would be her children. Because there are multiple children, ideally they can reach a consensus, but if they are not able to, decisions would be based on the majority of her children. The nurse explains to Ms. J that it can be very difficult for families to agree, which may cause delays in care and conflict among family members.

The nurse says to Ms. J, “There are different types of advance directives, but they commonly include a living will, which indicates your wishes regarding your medical care, such as whether you want to receive life-prolonging measures, artificial nutrition/hydration, or cardiopulmonary resuscitation, or donate organs. A power of attorney identifies the person you want to make medical decisions for you, should you be unable to.”

Ms. J expresses she does not want the potential burden of her medical decisions to fall on her children and requests more information on how to initiate an advance directive. Ms. J says, “I am not ready to make any decisions today, but I appreciate you bringing up the conversation because it is not something I had thought about before.” The nurse responds, “I understand that there is a lot to think about and you will need more time and information.”

The nurse prints out a handout that her facility compiled with resources and information on advance directives for Ms. J. Included on the handout is contact information for a social worker who could help facilitate completing an advance directive as well as how to access advance care planning documents to complete, which are available online for each state (CaringInfo, 2022). The nurse also explains to Ms. J that the facility has a palliative care team that can be consulted to help clarify goals of care. The nurse provides a brochure about the palliative care team that outlines the members of the team, including a physician, nurse practitioner, chaplain, social worker, and psychiatrist.

About the Author

Kellie Spine, MSN, RN, OCN ® , is an inpatient oncology nurse educator at the University of Louisville Hospital in Kentucky. The author takes full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships. The article has been reviewed by independent peer reviewers to ensure that it is objective and free from bias. Spine can be reached at [email protected] , with copy to [email protected] . (Submitted June 2022. Accepted August 22, 2022.)

Case Study 2: How Am I Going to Tell My Kids That I Am Dying?

Anne skwira-brown, aprn, aocnp ®.

Mary is a 63-year-old bookkeeper who underwent surgery and chemotherapy for colon cancer. Treatment-related neuropathy and fatigue complicated her ability to continue working. She was in the midst of filing for disability when she developed pain, nausea, and weight loss. A computed tomography scan showed ascites and liver metastases. After recovering from a paracentesis and inpatient management of nausea and vomiting, she returns to see the medical oncology team with her three adult children to discuss a return to chemotherapy. “She’s a fighter,” they agree as they consider her past cancer treatments and her life as a single mother. After her family members leave the room, the RN, Ella, returns with printed information about the new chemotherapy regimen. Mary looks sadly at the RN and asks, “How am I going to tell my kids that I am dying?”

Although this question sounds cognitive, it is filled with underlying emotion. Ella is alarmed by the question. She sets the patient education materials aside, pulls up a chair, and makes visual contact with Mary. An important starting point for serious illness conversations is to align with the patient by acknowledging the emotions first (Center to Advance Palliative Care [CAPC], 2019a). Not certain what to say next, Ella pauses. Although silence can seem awkward, it can provide a moment for the nurse and the patient to gather their thoughts.

In this situation, Ella remembers the following NURSE acronym (VitalTalk, 2019) and starts with naming and exploring:

U: Understanding
R: Respecting
S: Supporting
E: Exploring

The patient’s question is intimidating; however, a desire to be empathetic yields the following simple statement: “That sounds like a really hard thing to be thinking about.” Instead of telling a patient how she feels, Ella floats a hypothesis (VitalTalk, 2019) as follows: “You seem sad.” Pause. “And maybe scared?”

Ella does not have to be correct about the emotion but can remain open when asking questions or making statements. For example, dismissive statements such as, “You do not have to worry about that now,” or opinions such as, “Your children do not seem ready to hear negative information right now,” are not helpful. Just as importantly, after making an empathetic statement, it is important to pause, wait, and listen. A pause may be the most important way to follow an empathetic statement so that the patient has time to hear it, respond to it, and benefit from the conversation (Sheehan, 2018).

Mary cries and describes fear and anger about cancer recurrence. She feels weak, tired, and sick so that she cannot possibly “fight.” The question, “How will I tell my children?” is an emotional cue that belies her underlying worries. A gentle inquiry such as, “Tell me your concerns about talking to them,” can help the patient explore her feelings and can help the nurse to understand the patient’s perception of family coping before offering advice (CAPC, 2019b). Through her tears, Mary admits that she feels guilty that she will no longer be able to protect and provide for them. In addition, she is heartbroken that she will not be able to see her grandchildren as they grow.

At that point, the initial conversation ended. The patient felt heard and supported. Ella and her team worked to become a trusted source of information and support. At a subsequent visit, the nurse practitioner asks the patient for permission, as follows: “So that we are all on the same page, would it be OK to ask some more questions about your children’s understanding of your illness?” Mary admits that she has sheltered them from bad news because they seem to get mad, stop listening, and say that she is giving up. She explains that she is not afraid of dying because of her strong faith.

Mary does not want to have a formal meeting with her children because it seems too stressful. The nurse practitioner encourages her to consider other ways that she can talk to each of them on an individual basis. Helpful phrasing may include the following: “Getting prepared will help you to talk with them. Would you like to talk about how to do that?” (CAPC, 2019a). Initially, Mary does not want to talk about death directly, but she is willing to talk to her children about working out ways to prepare for the worst-case scenario of getting sicker.

Over time, Mary shifts the notion of fighting not to mean battling the cancer but instead to mean fighting for her kids. The family discusses a plan for where she will move when she gets sicker and how they will manage some of the financial issues. Although her children do not share similar views about faith and prayer, Mary talks about the confidence and peace that her faith provides her. They begin to acknowledge how it gives her strength and courage as she faces the worst-case scenario.

Nurses can expect to be caught off guard by surprising or hard questions from patients and caregivers. Instead of an immediate attempt to find a right answer, this case study emphasizes the power of pausing and finding a way to make empathic statements. Patients often need a chance to reflect on how they are feeling or how they may resolve difficult health issues. Using tools, such as the NURSE acronym, can provide reminders to nurses (those new to practice or those with many years of experience) of the types of statements that can help respond to emotions (VitalTalk, 2019).

Anne Skwira-Brown, APRN, AOCNP ® , is a nurse practitioner at Essentia Health Duluth Clinic in Minnesota. The author takes full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships. The article has been reviewed by independent peer reviewers to ensure that it is objective and free from bias. Skwira-Brown can be reached at [email protected] , with copy to [email protected] . (Submitted June 2022. Accepted August 22, 2022.)

Case Study 3: Patient and Family in Conflict to Continue Treatment

Deanna schlifke, bsn, rn, ocn ®.

J.M. is a 91-year-old man with a history of benign prostatic hyperplasia, renal insufficiency, gross hematuria, and recurrent urinary tract infections. J.M. has a past medical history of congestive heart failure, coronary artery disease, and cardiac catheterizations. J.M. is a retired real estate agent and lives at his beach home with his wife and grown daughter.

Secondary to his multiple episodes of gross hematuria and urinary tract infections, J.M. had a cystoscopy, which revealed a bladder tumor; in 2020, he underwent a transurethral resection of the bladder tumor. From pathology evaluation of the tumor, J.M. was diagnosed with muscle-invasive squamous cell carcinoma of the bladder. Many complications arose after this diagnosis. He experienced a cerebrovascular accident on holding his anticoagulation medication for his upcoming bladder procedure, which required hospitalization. J.M. was treated with radiation therapy in combination with IV 5-fluorouracil/mitomycin C and pembrolizumab. Despite completion of treatment, in May 2021, J.M.’s chest computed tomography scan revealed large amounts of pulmonary metastasis. J.M. started on an IV antibody–drug conjugate, enfortumab vedotin, and completed four cycles with a significant decrease in his pulmonary metastasis. J.M. was recently hospitalized for recurrent hematuria and gastrointestinal bleed and had a Watchman left atrial appendage closure device placement and transcatheter aortic valve replacement. During this admission, J.M. was given multiple blood transfusions.

J.M. continues to follow through with his appointments and treatments, but he expresses to the nurses that he is extremely fatigued and that he just wants to relax and spend as much time with his family as he can. He explains to the nurse that he feels that all these nonstop appointments, tests, and treatments are not the way he would like to spend the last chapter of his life. However, he feels that he will be letting down his wife and daughter if he does not continue with the chemotherapy treatments.

J.M.’s daughter, Karen, is a nurse practitioner, and she would like to continue her father’s chemotherapy treatment despite the decline in health status. Karen has arranged for a caregiver to come to the home for 24-hour care for her older adult mother and father. The caregiver takes J.M. to and from his appointments, tests, and treatments, because often Karen is working or home with her mother. Karen is single and does not have any children. Because of J.M’s current plan of care, many nurses caring for him were feeling a sense of moral distress and had reservations about initiating difficult conversations with the family. Because of these clinical staff reservations, the RN and oncologist have a conversation and discuss the need to set up a meeting with J.M. and his family. In preparing for this meeting, the oncologist refers to the Institute for Human Caring (2017) and follows the Serious Illness Conversation Guide.

A meeting is set up for the following afternoon with the oncologist, RN, social worker, patient, wife, and daughter. The Serious Illness Conversation Guide is used as a tool to assist in starting the crucial conversation with the patient and family.

When the physician asks J.M. about his understanding of his illness, the patient explains that he is “tired and approaching the finish line.” J.M. states that his most important goals in his plan of care are to spend time at home with his wife and daughter, rather than continuing with his chemotherapy appointments that are only, in his view, “wasting valuable time.”

Karen and J.M.’s wife are engaged in the conversation. Karen expresses that she is apologetic for failing to consider her father’s true feelings. She states that she is surprised with herself for not beginning these important conversations with her father at the time of his diagnosis, particularly because she is a healthcare professional.

Avoiding these emotionally intense conversations in the beginning may appear to help one cope, but this could lead to moral dilemmas if palliative and end-of-life discussions have not begun, particularly when urgent decisions are necessary. Moral or ethical dilemmas can result in an unpleasant problem or situation for one in not knowing what to do or if they made a right choice. J.M. was placed on palliative care, discontinued his chemotherapy treatments, and is relieved to be spending time at home with his family.

Deanna Schlifke, BSN, RN, OCN ® , is a nurse manager in the Cancer Center, Breast Center, and Infusion Center at Providence Saint John’s Health Center in Santa Monica, CA. The author takes full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships. The article has been reviewed by independent peer reviewers to ensure that it is objective and free from bias. Schlifke can be reached at [email protected] , with copy to [email protected] . (Submitted June 2022. Accepted August 22, 2022.)

Implications for Nursing

Toward providing patient- and family-centered care and improving the patient experience, oncology nursing care includes addressing the patient’s physical needs, providing psychosocial support, and connecting with patients and caregivers on a relationship-based, emotional level. In addition, based on an evolving or established relationship with a patient and their caregivers, the oncology nurse can serve as a trusted source of information and a guide to problem-solving and decision-making.

Integrated into all stages of the patient’s treatment and care, oncology nurses have opportunities to interact in ways that help promote understanding of treatment or no-treatment options and decisions about care. Issues related to goals of care may be particularly difficult to work through as patients near the end of life.

By building and refining communication skills, nurses can interact with and support patients and caregivers, clarifying the plan of care and encouraging a productive decision-making process. As members of interprofessional care teams, nurses can be mindful of previous patient–provider conversations, being congruent with the patient’s care plan. For example, in conversation with the patient, nurses can provide consistent prognostic information to the patient and caregivers, complementing previous conversations they had with members of the interprofessional care team, particularly physicians and advanced practice providers.

As illustrated by the case studies and scenarios in this article, nurses are advised that it takes time to build communication skills to apply to palliative care–focused conversations. Many situations involving palliative care conversations can occur on a regular basis, but not every issue needs to be addressed directly or immediately.

Toward building and refining communication skills to call on during intimate, difficult conversations, nurses can model their own approach to conversations by incorporating behavior and language used by clinical nurse experts and members of palliative care teams. Nurses can also further their competencies by accessing pertinent resources (e.g., communication skills, advance directives, POLST, living wills).

This compilation of case studies and scenarios provides examples of how expert clinical oncology nurses approach palliative care and end-of-life conversations focused on transitions and decision-making. As evident by the breadth of approaches, clinical oncology nurses individualize and differentiate their methods of conversation, depending on the patient’s situation, the topic of conversation, and the patient’s and caregiver’s responses. There are different ways to initiate and continue these crucial conversations.

Over time as a competency of providing palliative care, clinical oncology nurses can build and advance these communication skills so they are timely and effective, supporting patients and their goals of care. Being comfortable and confident with initiating crucial conversations comes with skills, patience, practice, and experience. Supporting a foundation of communication competency, nurses can access palliative care resources, including mentoring by expert interprofessional practitioners from palliative care teams.

Ellen Carr, PhD, RN, AOCN ® , is the editor of the Clinical Journal of Oncology Nursing at the Oncology Nursing Society in Pittsburgh, PA. The author takes full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships. The article has been reviewed by independent peer reviewers to ensure that it is objective and free from bias. Carr can be reached at [email protected] . (Submitted March 2022. Accepted May 17, 2022.)

Berg, M.N., Ngune, I., Schofield, P., Grech, L., Juraskova, I., Strasser, M., . . . Halkett, G.K.B. (2021). Effectiveness of online communication skills training for cancer and palliative care health professionals: A systematic review. Psycho-Oncology, 30(9), 1405–1419.

Brown, R.F., Bylund, C.L., Gueguen, J.A., Diamond, C., Eddington, J., & Kissane, D. (2010). Developing patient-centered communication skills training for oncologists: Describing the content and efficacy of training. Communication Education, 59(3), 235–248.

CaringInfo. (2022). Download and complete your state or territories’ advance directive form. https://www.caringinfo.org/planning/advance-directives/by-state

Center to Advance Palliative Care. (2019a). Communication skills: Delivering serious news. https://www.capc.org/training/communication-skills/delivering-serious-n…

Center to Advance Palliative Care. (2019b). Communication skills: Discussing prognosis. https://www.capc.org/training/communication-skills/discussing-prognosis

Institute for Human Caring. (2017). Serious illness conversation guide. https://bit.ly/3zQD4Lm

Kwame, A., & Petrucka, P.M. (2021). A literature-based study of patient-centered care and communication in nurse–patient interactions: Barriers, facilitators, and the way forward. BMC Nursing, 20(1), 158. https://doi.org/10.1186/s12912-021-00684-2

LeBlanc, T.W., & Tulsky, J. (2022). Discussing goals of care. In J. Givens (Ed.), UpToDate. https://www.uptodate.com/contents/discussing-goals-of-care

Moore, P.M., Rivera, S., Bravo-Soto, G.A., Olivares, C., & Lawrie, T.A. (2018). Communication skills training for healthcare professionals working with people who have cancer. Cochrane Database of Systematic Reviews, 7(7), CD003751.

Sheehan, K. (2018). The power of a pause. Pallimed. https://bit.ly/3hijAZC

VitalTalk. (n.d.). PAUSE talking map. https://www.vitaltalk.org/guides/pause-talking-map

VitalTalk. (2019). Responding to emotion: Articulating empathy using NURSE statements. https://www.vitaltalk.org/guides/responding-to-emotion-respecting

Wittenberg, E., Reb, A., & Kanter, E. (2018). Communicating with patients and families around difficult topics in cancer care using the COMFORT communication curriculum. Seminars in Oncology Nursing, 34(3), 264–273. https://doi.org/10.1016/j.soncn.2018.06.007

Bridging the gap: standardizing orientation to improve vacancy and turnover rates of ambulatory oncology nurses, incorporating music therapy with acupuncture in managing cancer pain at an acupuncture practice, a case for caution: patient use of artificial intelligence.

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Palliative Wound Care: Case...

Palliative Wound Care: Case Studies

Journal of Hospice and Palliative Nursing

February 2022, Volume 24 Number 1 , p 15 - 21

Earn 2 Contact Hours

home care , hospice wound care , palliative wound care , wound care

Walsh, Anne ANP-BC, CWOCN, ACHPN

Article Content

Although wound healing may not always be possible in the patient with advanced illness, there is much we can do as clinicians to alleviate patient and caregiver suffering. Kelechi et al 1 report that 47% of patients referred to hospice present with wounds, with up to half of those being pressure-related injuries. Jakobsen et al 2 found a pressure ulcer/injury incidence of 17.3% in cancer patients admitted to hospice. Other wound etiologies often seen in this patient population include malignant wounds, skin tears, vascular ulcers, Kennedy terminal ulcers, 3 autoimmune-related wounds such as bullous pemphigoid, and, more recently, COVID-19-related skin changes, to name a few. 4 Tilley et al 5 report that 14% of advanced cancer patients in the United States present with malignant fungating wounds. Skin tears are also commonly seen in the palliative and hospice patient population, especially with the older adults, because of risk factors such as age-related skin changes, mobility issues, medication side effects, and impaired nutrition. 6 The wound is often a reflection of an underlying disease entity such as with venous leg ulcers in the setting of advanced heart failure and lower extremity edema. See Figure 1 for a snapshot of typical wound etiologies consulted on by the certified wound, ostomy, and continence nurse practitioner (CWOC NP) during a course of a month at the author's home hospice facility.

FIGURE 1. Snapshot of typical monthly wound etiologies seeking consults at the author's hospice.

Wound healing may not always be possible because of several factors including advanced disease, multiple comorbidities, poor nutrition, poor tissue perfusion, advanced age, and frailty. 7-10 Palliative wound care shifts the focus from healing to symptom management and uses an interdisciplinary team approach to address the whole person. This includes psychosocial and spiritual elements in addition to addressing the physical symptoms to improve the quality of life for patients and caregivers. The distressing wound symptoms may include pain, bleeding, odor, pruritis, and/or excessive wound exudate, which can lead to anxiety, embarrassment, and social isolation. It is important to set realistic expectations to avoid disappointment when wound healing may not be possible. Examples of this include, but are not limited to, a malignant wound where curative treatment is no longer appropriate or with a gangrenous limb where the patient is not a candidate for surgical intervention to restore the blood flow. 8

Caregivers may feel overwhelmed and have a sense of guilt if their loved one develops skin breakdown despite meticulous care and need the support of the whole team including the CWOC nurse/NP. The development of skin breakdown may reflect skin organ failure due to intrinsic versus extrinsic factors as the patient nears the end of life. 9-11 The skin being the largest organ of the body may fail along with other organs such the heart, lungs, and kidneys. It is important to keep the wound dressing regimen as simple as possible, so that more time can be spent with loved ones than on complicated wound care treatments. As Dr Beers 11 points out, less is more.

There may, however, be limited access to both specialized wound clinicians and specialized palliative care clinicians, and telehealth may be a way to increase access to these services. 12,13 The use of telehealth became more prevalent than ever during the COVID-19 pandemic. 14-16 Telehealth allows prioritization of necessary in-person specialist wound care visits. This includes visits to provide bedside sharp debridement, where appropriate, to quickly palliate symptoms of odor and excessive exudate that may result from the presence of necrotic tissue. Other necessary in-person visits may include assisting with complicated ostomy/fistula pouching situations and supporting overwhelmed caregivers and clinicians new to the field. Telehealth also allows for more timely consults while reaching a broader number of patients to ensure appropriate wound care plans are in place to meet the goals of care.

The telehealth consult can be initiated by sending wound pictures via secure emails or text messages to the wound specialized clinician, or the clinician may evaluate the wound in real time via platforms such as Zoom, FaceTime, and WhatsApp while other interdisciplinary team members are at the bedside.

Technology is also a way to put the necessary educational tools in the hands of the generalist clinician providing wound care to the frail patient with poor healing potential. The palliative wound educational gap prompted the author to launch a wound app. The app is currently named "Palliative Wound Pro" (with consideration of renaming it simply "Wound Pro" for it to be more inclusive). Although the goals of wound care may be different, the same general wound principles apply to all wounds. The wound etiology is addressed where feasible, and a clean, moist wound bed is maintained to increase the healing potential. An exception to this is dry, intact eschar in the frail patient with a poor healing potential. The dry eschar is considered a "protective shell" and is maintained dry to avoid opening it up. 17 The app is currently available as a free resource for clinicians to access wound care treatment options. It provides an overview of 8 wound etiologies commonly encountered in the palliative care and hospice patient population. It offers wound picture examples, wound treatment and symptom management options, case studies, documentation guidelines, and more.

The following 5 case studies demonstrate a palliative approach to wound care in the patient with advanced illness receiving home hospice care. These consults were completed via a combination of in-home CWOC NP visits along with telehealth consults initiated by the nurse, nurse practitioner, or physician visiting the home. These case studies demonstrate both healing in the first 3 case studies and improved symptom management in the last 2 case studies where healing was not possible, because of factors mentioned previously in this article.

CASE STUDY 1: SACRAL PRESSURE INJURY

A 96-year-old widowed woman with New York Heart Association class IV heart failure and multiple comorbidities, including diabetes mellitus type 2, hypertension (HTN), atrial fibrillation, and a chronic unstageable sacral pressure injury, presented to the hospital from a local nursing home because of heart failure exacerbation, pneumonia, and anoxic respiratory failure. Because of her heart failure exacerbation, multiple infections, worsening sacral pressure injury, and a decreased functional status, she was referred for hospice services. The patient and her daughter preferred her to return to her home of 60 years for end-of-life care. She was mainly bedbound and required total care. She enjoyed music therapy as provided by a volunteer.

The hospice intake nurse contacted the wound, ostomy, and continence (WOC) NP for an initial consult via FaceTime. The sacral pressure injury was considered an unstageable pressure injury because of the presence of necrotic tissue obscuring the full depth of injury. Her daughter was concerned that there was an odor.

The initial recommendations were to cleanse the sacral wound and periwound thoroughly with a wound cleanser spray, pat dry, and apply quarter strength (0.125%) sodium hypochlorite solution-moistened gauze to the area of necrosis. This was suggested to promote debridement of the necrotic tissue and to manage the odor by decreasing the microbial count. 18 Sodium hypochlorite solution is made from diluted bleach and has been used since World War I. 18 Wound cleanser sprays make it easy to thoroughly cleanse/irrigate a wound. The nozzle delivers the right amount of pressure to give the wound/periwound a good cleaning, without being too forceful, particularly if there is a cavity present. An alcohol-free skin barrier wipe was recommended to protect the periwound. Gauze was used to pad over the site, and an absorbent, waterproof, gentle silicone foam dressing was recommended to secure the dressing. This was completed 3 times weekly and as needed if it became soiled and was recommended short-term until the wound contained less necrotic tissue.

The WOC NP scheduled a home visit, within a few days of her hospice admission, to perform conservative bedside sharp debridement of the remaining necrotic tissue with patient/caregiver consent. The goal was to further palliate the symptoms of odor and excessive exudate. The patient was premedicated an hour before the visit with morphine 0.25 mL (5 mg) orally with good effect. The primary dressing was then changed to a calcium alginate 2 times weekly and as needed to manage the moderate amount of exudate and for its hemostatic properties due to bleeding episodes reported. 17,19

After a few weeks of using the calcium alginate, the exudate amount decreased, and the wound treatment was changed to a hydrogel 2 times weekly and as needed to maintain a moist wound bed to increase the healing potential. This was used until the wound healed. Once it healed, the caregivers were encouraged to use a moisture barrier agent to the site with incontinent care and to continue to offload pressure to decrease the risk of a recurrence. As the wound characteristics changed, the treatment was changed (see Figure 2 ).

FIGURE 2. Sacral pressure injury.

Pressure injury prevention measures were continually reinforced to address the underlying etiology. This included placing a support surface on her bed (a group 1 support surface was used; eg, an alternating pressure pad overlay). She was not receptive to an external catheter to manage her urinary incontinence. In addition to the nursing and medical staff, the interdisciplinary team included a physical therapist, a social worker, a spiritual care counselor, the registered dietician, a volunteer support, and a home health aide. The patient and her daughter appreciated the support from all the team members to make home hospice possible for her.

CASE STUDY 2: RIGHT ARM SKIN TEAR

The patient was an 81-year-old married woman with small cell lung cancer, coronary artery disease, and vascular dementia. She was a retired teacher and enjoyed her spouse reading to her. During her months on hospice, she developed a mass behind her right ear that continued to grow and developed skin tears at her extremities. The skin tears at her arms were described as "opening and closing." The skin tear shown here was reported as occurring when a family member was assisting her from the bed to the chair and she bumped her arm (see Figure 3 ). The patient and caregiver agreed to discontinue her oral aspirin 81 mg taken daily because of the extensive bruising at her skin and bleeding from her wounds. This symptom was very frightening for them, and the burden likely outweighed the benefits of aspirin at this stage. Both the patient and her son became anxious as they saw her skin bruising easily and the episodes of profuse wound bleeding. It had become a constant source of worry for them. Furthermore, although they understood she had been taking aspirin for many years as a preventative measure for a cerebral vascular accident and myocardial infarction, they preferred to discontinue it to decrease her bleeding risk.

FIGURE 3. Right arm skin tear.

The skin tear was cleansed gently with a wound cleanser spray and patted dry, the partial skin flap was approximated where possible, and a petrolatum gauze with bismuth was applied to the site. This was covered with an abdominal pad and secured with a gauze wrap twice weekly. This dressing was chosen for its nonadherent 20 and antibacterial properties and because it could be left in place for several days. Meticulous skin care was reinforced. Bumper pads were provided for her hospital bed side rails to decrease the risk of further injury. Her skin tear went on to heal, and the malignant mass bled less. She was very spiritual and felt great solace with regular spiritual care support. Her son felt less anxious and more able to cope with her illness, seeing her more relaxed and at peace.

CASE STUDY 3: VENOUS LEG ULCERS (BILATERAL LOWER EXTREMITIES)

The patient is a 95-year-old widowed woman with New York Heart Association class IV heart failure, HTN, and extensive osteoporosis. Because of decreased functional status, worsening heart failure, renal failure, chronic nonhealing bilateral lower extremity venous leg ulcers, and increased frailty, she was referred to hospice. Her symptoms included pain at the wound sites exacerbated with wound care and dyspnea with minimal exertion. She was receiving supplemental oxygen 3 L/min via nasal cannula as needed for shortness of breath. Her legs were edematous (about 3+ nonpitting edema). Because of a typical low blood pressure of 88/60 mm Hg, she was unable to tolerate increasing her diuretics despite the edema and bilateral pulmonary crackles. Methadone 2.5 mg (0.25 mL) orally twice daily worked well to manage her pain and dyspnea. Her son lived out of town but visited and called frequently. She had a 24-hour live-in aide as she became more debilitated. She enjoyed pet therapy as provided by the volunteer department. She always had dogs, and this brought her tremendous joy to be able to interact with the therapy dog.

Wound cleanser spray was used to cleanse the lower extremity wounds and periwounds, and ammonium lactate lotion was used to her dry skin. Initially, a calcium alginate was used to the sites for increased absorbency along with abdominal pads secured with a gauze wrap. A tubular compression bandage was applied over the dressing from the base of her toes up to about an inch below her knees for light compression therapy. This was used to manage the edema, to increase the healing potential, and to decrease the risk of cellulitis while avoiding sending excess fluid back to her heart and exacerbating her heart failure. This treatment was performed 3 times weekly for a few weeks. Compression therapy is the standard of care for the treatment of venous leg ulcers when tolerated. 21

On a follow-up CWOC NP visit, honey wound gel was added for its antimicrobial effects and to promote autolytic debridement of the yellow fibrin slough tissue at her right leg ulcer as the area had become tender. Over time, as the exudate decreased further, the primary dressing was changed to a petrolatum gauze with bismuth twice weekly, which is also antimicrobial but nonadherent now that the exudate amount was minimal.

The wounds and the edema decreased greatly during the course of about 2 weeks. She was not open to podiatry services for nail care. Meticulous skin care and the importance of ongoing compression therapy, as tolerated, were reinforced because of the high risk for cellulitis with the presence of edema. Her wounds went on to heal, and this treatment helped keep her as functional as possible in her home (see Figure 4 ).

FIGURE 4. Venous leg ulcers.

CASE STUDY 4: RIGHT FOOT GANGRENE

The patient is an 88-year-old widowed man with advanced Alzheimer disease, atherosclerosis, type 2 diabetes mellitus, HTN, renal failure, and peripheral vascular disease with gangrene to his right foot. He had 1 daughter who was very devoted. He was referred to hospice from a certified home care agency for end-of-life care. His daughter wanted comfort care per her father's known wishes and refused an amputation. Initially, the right great toe and right fifth toe were gangrenous, but over time as the disease progressed, it included all his right foot toes and his instep. The area was painful with wound care as noted by nonverbal cues and had a faint odor at times. Pain was managed with oral methadone 2.5 mg twice daily and oxycodone/acetaminophen 5/325 mg administered 2 to 3 times daily for breakthrough pain.

The wound treatment had been daily application of silver sulfadiazine cream to the gangrenous toes. This was discontinued to avoid converting the dry gangrene to a wet gangrene from the application of a moist agent, which would promote autolytic debridement (use of the body's own natural enzymes). Instead of this, a drying antimicrobial agent, povidone iodine, was used to paint the necrotic tissue to decrease the microbial count. 17 The area was gently cleansed with a wound cleanser spray, or if any odor was present, 1/4-strength sodium hypochlorite solution was used to cleanse the affected areas. It was then covered with abdominal pads secured loosely with a gauze wrap 2 times weekly. This regimen worked well in managing the odor and keeping the necrotic tissue intact. His daughter also wanted to trial a course of antibiotics to see whether it would help the odor and slow the disease progression. He was initially tolerating aspirin 81 mg daily orally as an antiplatelet agent in the hopes of improving the blood flow. Although the disease progressed despite the interventions, the distressing symptoms were managed at home through the support of the interdisciplinary team until his death a few weeks later. The CWOC NP consults were completed both in-person and via secure texts sent by the nurse visiting the home (see Figure 5 ).

FIGURE 5. Right foot gangrene.

CASE STUDY 5: LEFT ANTERIOR AND POSTERIOR MALIGNANT CHEST WOUNDS

This patient is an 82-year-old single woman with endometrial cancer diagnosed about a year ago. She underwent a hysterectomy and received chemotherapy at that time. Her comorbidities included type 2 diabetes mellitus and HTN. She was alert and oriented x3 and tried to maintain her independence as much as possible. She was a retired accountant and took pride in being very organized. Her sister was her main caregiver, and the local chaplain was very supportive. She had volunteered in her church for many years after retirement. She had a recent hospitalization for wound bleeding, and at that time, her aspirin was discontinued. She had been receiving certified home care agency services for wound care, but after this hospitalization, she was referred to home hospice. She presented to hospice with extensive chest cutaneous metastases from the endometrial cancer. She denied pain, but she and her caregivers were distressed by the odor and bleeding. The WOC NP provided both in-person and telehealth consults. The wound care was initially to cleanse with wound cleanser and apply abdominal pads daily.

With the initial WOC NP consult, the treatment was changed to gently cleanse with wound cleanser spray or hypochlorous acid solution as needed odor, pat dry, and apply a petrolatum gauze with bismuth to the sites to prevent adherence to the friable tissue. This was recommended as the current dressing was adhering and causing bleeding with dressing changes. A skin barrier film was recommended to protect the periwounds. Abdominal pads were recommended as the secondary dressing, and a gentle silicone tape was suggested to secure the dressing 2 times weekly and as needed (she was not interested in a mesh net dressing retainer). Less frequent dressing changes were suggested to decrease the risk of bleeding and potential pain with dressing changes. Metronidazole 1% spray was ordered to the site as needed for odor management with dressing changes with good effect. 17,19,22 For the bleeding, oxymetazoline nasal spray, off-label, was sent from the hospice pharmacy to apply to the site as needed for bleeding with dressing changes. 17 It works as a vasoconstrictor within approximately 10 minutes and lasts up to 12 hours. Because of several areas of bleeding and the potential for burning pain with the use of silver-nitrate sticks, this option was chosen. The odor and bleeding improved, but over time, there was some strike-through exudate soiling her garments. The treatment was then changed to a silicone foam dressing with silver for increased absorbency and odor management twice weekly and as needed. The WOC NP also considered a calcium alginate, a hydrofiber, or a chitosan-based gelling fiber with silver for odor management, hemostasis, and increased absorbency. The patient wished to trial the silver foam option first when samples were shown to her. This regimen worked well for her and her caregivers. With her family around her, she was able to maintain her independence at home until she passed away peacefully 3 weeks later (see Figure 6 ).

FIGURE 6. Left anterior and posterior chest/shoulder malignant wounds.

In conclusion, although patients with advanced disease and wounds may present with poor healing potential, there is much we can do as clinicians to ease the suffering that may be brought on by wounds. Although the same general wound principles apply to all wounds, the goals of care may differ when it comes to palliative wound care. Although there is a scarcity of wound and palliative specialized clinicians, educational technology in the hands of the generalist clinician is one way to empower them to care for these patients. Telehealth is another effective way for specialized clinicians to reach a broader, underserved population, in addition to serving as a resource for colleagues to provide wound consults and the education necessary to meet the goals of care.

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3. Ayello EA, Levine JM, Langemo D, Kennedy-Evans KL, Brennan MR, Sibbald RG. Reexamining the literature on terminal ulcers, SCALE, skin failure, and unavoidable pressure injuries. Adv Skin Wound Care . 2019;32(3):109-121. doi:. [Context Link]

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6. Strazzieri-Pulido KC, Picolo Peres GR, Goncalves Faustino Campanili TC, Conceicao de Gouveia Santos VL. Incidence of skin tears and risk factors: a systematic literature review. J Wound Ostomy Continence Nurs . 2017;44(1):29-33. doi:. [Context Link]

7. Mahmoudi M, Gould LJ. Opportunities and challenges of the management of chronic wounds: a multidisciplinary viewpoint. Chronic Wound Care Manage. Res . 2020;7:27-36. doi:. [Context Link]

8. Vickery J, Compton L, Allard J, Beeson T, Howard J, Pittman J. Pressure injury prevention and wound management for the patient who is actively dying: evidence-based recommendations to guide care. J Wound Ostomy Continence Nurs . 2020;47(6):569-575. doi:. [Context Link]

9. Pittman J, Beeson T, Dillon J, et al. Hospital-acquired pressure injuries and acute skin failure in critical care. A case-control study. J Wound Ostomy Continence Nurs . 2021;48(1):20-30. doi:. [Context Link]

10. Solmos S, LaFond C, Pohlman AS, Sala J, Mayampurath A. Characteristics of critically ill adults with sacrococcygeal unavoidable hospital-acquired pressure injuries: a retrospective, matched, case-control study. J Wound Ostomy Continence Nurs . 2021;48(1):11-19. doi:. [Context Link]

11. Beers EH. Palliative wound care: less is more. Surg Clin North Am . 2019;99(5):899-919. doi:. [Context Link]

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14. Mahoney MF. Telehealth, telemedicine, and related technologic platforms. Current practice and response to the COVID-19 pandemic. J Wound Ostomy Continence Nurs . 2020;47(5):439-444. doi:. [Context Link]

15. Engels D, Austin M, Doty S, Sanders K, McNichol L. Broadening our bandwidth: a multiple case report of expanded use of telehealth technology to perform wound consultations during the COVID-19 pandemic. J Wound Ostomy Continence Nurs . 2020;47(5):450-455. doi:. [Context Link]

16. Ratliff CR, Shifflett R, Howell A, Kennedy C. Telehealth for wound management during the COVID-19 pandemic. Case studies. J Wound Ostomy Continence Nurs . 2020;47(5):445-449. doi:. [Context Link]

17. Brinker J, Protus B, Kimbrel J. Wound Care at End of Life: A Guide for Hospice Professionals . 2nd ed. Montgomery, AL: Optum Hospice Pharmacy Services; 2018. [Context Link]

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Co-creating possibilities for patients in palliative care to reach vital goals--a multiple case study of home-care nursing encounters

Affiliation.

1 FOU nu, Research and Development Centre, Jakobsbergs sjukhus, Järfälla, SwedenDepartment of Medical and Health Sciences, Faculty of Health Sciences, Linköping University, Linköping, SwedenDepartment of Palliative Care Research, Ersta Sköndal University College, Stockholm, SwedenSchool of Health and Caring Sciences, Linnaeus University, Kalmar, SwedenDepartment of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, SwedenDepartment of Health Care Sciences, Ersta Sköndal University College, Stockholm, SwedenDepartment of Nursing, Gjøvik University College, Gjøvik, NorwayStockholms Sjukhem Foundation, Research and Development Department, Stockhom, Sweden.
PMID: 23336338
DOI: 10.1111/nin.12022

The patient's home is a common setting for palliative care. This means that we need to understand current palliative care philosophy and how its goals can be realized in home-care nursing encounters (HCNEs) between the nurse, patient and patient's relatives. The existing research on this topic describes both a negative and a positive perspective. There has, however, been a reliance on interview and descriptive methods in this context. The aim of this study was to explore planned HCNEs in palliative care. The design was a multiple case study based on observations. The analysis includes a descriptive and an explanation building phase. The results show that planned palliative HCNEs can be described as a process of co-creating possibilities for the patient to reach vital goals through shared knowledge in a warm and caring atmosphere, based on good caring relations. However, in some HCNEs, co-creation did not occur: Wishes and needs were discouraged or made impossible and vital goals were not reached for the patients or their relatives. Further research is needed to understand why. The co-creative process presented in this article can be seen as a concretization of the palliative care ideal of working with a person-centered approach.

Keywords: case study research; home care; nurse-patient interaction; nurse-patient relationships; palliative care.

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Nursing case management in the palliative care: Scoping review

Liliana Mota Portuguese Red Cross Northern Health School, Oliveira de Azeméis, Portugal
Ricardo Melo Portuguese Red Cross Northern Health School, Oliveira de Azeméis, Portugal
Carla Silva Oncology Portuguese Institute, Porto, Portugal
Fernanda Príncipe Portuguese Red Cross Northern Health School, Oliveira de Azeméis, Portugal
Henrique Pereira Portuguese Red Cross Northern Health School, Oliveira de Azeméis, Portugal
Margarida Alvarenga Oncology Portuguese Institute, Porto, Portugal
Sérgio Soares Portuguese Red Cross Northern Health School, Oliveira de Azeméis, Portugal

Background & Aim: Palliative care is of vital importance for the quality of life of the person who benefits from it. Nursing case management provides useful tools for optimizing the care that is provided, thus being an important resource for improving them in an area as complex as palliative care. This study aimed to map scientific evidence on nursing case management in the context of palliative care.

Methods & Materials: Scoping review was done according to the eligibility criteria suggested by Joanna Briggs Institute: population (adults who benefit from palliative care), concept (studies in which nursing case management is implemented), and context (studies in the palliative, hospital or home care). The research was conducted in CINAHL (via EBSCO), MEDLINE (via PUBMED), COCHRANE, Scielo, LILACS, and MedicLatina databases; grey literature was researched in RCAAP, DART-Europe, and OpenGrey. Previously published studies in Portuguese, Spanish, English, and French have been included without any temporal limitation.

Results: We included ten articles in the review. Nursing case management is focused on health services management, the centrality of patient/family care, and the case manager role.

Conclusion: The studies included have low evidence levels and a limited sample size. The optimization of resources and services, the greater availability of time for the provision of care, and the satisfaction of the person and family with the care were highlighted. The role of the case manager is highlighted, proving to be very important throughout all the nursing case management.

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Stepped Palliative Care for Patients With Advanced Lung Cancer : A Randomized Clinical Trial

1 Massachusetts General Hospital, Boston
2 Harvard Medical School, Boston, Massachusetts
3 University of Pennsylvania Abramson Cancer Center, Philadelphia
4 Duke Cancer Institute, Durham, North Carolina
5 American Cancer Society, Atlanta, Georgia
Original Investigation Association of Early Palliative Care With Survival and Place of Death in Patients With Lung Cancer Donald R. Sullivan, MD, MA, MCR; Benjamin Chan, MS; Jodi A. Lapidus, PhD; Linda Ganzini, MD, MPH; Lissi Hansen, PhD, RN; Patricia A. Carney, PhD; Erik K. Fromme, MD, MCR; Miguel Marino, PhD; Sara E. Golden, MPH; Kelly C. Vranas, MD; Christopher G. Slatore, MD, MS JAMA Oncology
Original Investigation Effect of Perioperative Palliative Care on Quality of Life in Patients With Cancer Rebecca A. Aslakson, MD; Elizabeth Rickerson, MD; Bridget Fahy, MD; Brittany Waterman, MD; Rachel Siden, MA; Kathryn Colborn, PhD; Shelby Smith, MS; Mae Verano, BA; Isaac Lira, BS; Caroline Hollahan, BS; Amn Siddiqi, MBBS; Kemba Johnson, CCMA; Shivani Chandrashekaran, BS; Elizabeth Harris, BS; Richard Nudotor, MD; Joshua Baker, BS; Shireen N. Heidari, MD; George Poultsides, MD; Alison M. Conca-Cheng, MD; Allyson Cook Chapman, MD; Anna Sophia Lessios, MD; Laura M. Holdsworth, PhD; Jillian Gustin, MD; Aslam Ejaz, MD; Timothy Pawlik, MD; Judi Miller, AIA; Arden M. Morris, MD; James A. Tulsky, MD; Karl Lorenz, MD; Jennifer S. Temel, MD; Thomas J. Smith, MD; Fabian Johnston, MD JAMA Network Open

Question Is stepped care, with palliative care visits occurring only at key points in patients’ cancer trajectories and using a decrement in quality of life (QOL) to trigger more intensive palliative care, an effective model for delivering palliative care to patients with advanced cancer?

Findings In this randomized trial of 507 adults with advanced lung cancer, patients assigned to stepped palliative care had significantly fewer palliative care visits and reported QOL scores at week 24 that were noninferior (adjusted mean, 100.6 vs 97.8; P < .001) to the QOL scores of patients assigned to an early palliative care model with monthly visits after diagnosis.

Meaning Stepped palliative care is an effective and more scalable means to deliver palliative care to improve QOL for patients with advanced lung cancer.

Importance Despite the evidence for early palliative care improving outcomes, it has not been widely implemented in part due to palliative care workforce limitations.

Objective To evaluate a stepped-care model to deliver less resource-intensive and more patient-centered palliative care for patients with advanced cancer.

Design, Setting, and Participants Randomized, nonblinded, noninferiority trial of stepped vs early palliative care conducted between February 12, 2018, and December 15, 2022, at 3 academic medical centers in Boston, Massachusetts, Philadelphia, Pennsylvania, and Durham, North Carolina, among 507 patients who had been diagnosed with advanced lung cancer within the past 12 weeks.

Intervention Step 1 of the intervention was an initial palliative care visit within 4 weeks of enrollment and subsequent visits only at the time of a change in cancer treatment or after a hospitalization. During step 1, patients completed a measure of quality of life (QOL; Functional Assessment of Cancer Therapy–Lung [FACT-L]; range, 0-136, with higher scores indicating better QOL) every 6 weeks, and those with a 10-point or greater decrease from baseline were stepped up to meet with the palliative care clinician every 4 weeks (intervention step 2). Patients assigned to early palliative care had palliative care visits every 4 weeks after enrollment.

Main Outcomes and Measures Noninferiority (margin = −4.5) of the effect of stepped vs early palliative care on patient-reported QOL on the FACT-L at week 24.

Results The sample (n = 507) mostly included patients with advanced non–small cell lung cancer (78.3%; mean age, 66.5 years; 51.4% female; 84.6% White). The mean number of palliative care visits by week 24 was 2.4 for stepped palliative care and 4.7 for early palliative care (adjusted mean difference, −2.3; P < .001). FACT-L scores at week 24 for the stepped palliative care group were noninferior to scores among those receiving early palliative care (adjusted FACT-L mean score, 100.6 vs 97.8, respectively; difference, 2.9; lower 1-sided 95% confidence limit, −0.1; P < .001 for noninferiority). Although the rate of end-of-life care communication was also noninferior between groups, noninferiority was not demonstrated for days in hospice (adjusted mean, 19.5 with stepped palliative care vs 34.6 with early palliative care; P = .91).

Conclusions and Relevance A stepped-care model, with palliative care visits occurring only at key points in patients’ cancer trajectories and using a decrement in QOL to trigger more intensive palliative care exposure, resulted in fewer palliative care visits without diminishing the benefits for patients’ QOL. While stepped palliative care was associated with fewer days in hospice, it is a more scalable way to deliver early palliative care to enhance patient-reported outcomes.

Trial Registration ClinicalTrials.gov Identifier: NCT03337399

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Open access
Published: 14 June 2024

Small Steps, Big Vision: using multi-stage qualitative research to develop a grab-and-go guide to support utilisation of the Ambitions for Palliative and End of Life Care framework

Erica Borgstrom ORCID: orcid.org/0000-0002-1009-2928 1 ,
Joanne Jordan 1 ,
Una St Ledger 1 &
Claire Henry 1

BMC Palliative Care volume 23 , Article number: 151 ( 2024 ) Cite this article

Metrics details

The Ambitions for Palliative and End of Life Care is a national framework for local action in England co-produced by over 30 partners; little research has been conducted on how the Framework is received and used. This study sought to examine and support how people understand, interpret, and implement the Framework.

A multi-stage qualitative methodology involving four stages of data collection: (1) case study interviews, (2) focus groups, (3) interactive workshops, and (4) Evidence Cafés. From initial interviews, ongoing thematic data analysis informed the design and focus of subsequent stages as part of a process of knowledge transfer.

A practical resource to support service provision and development was produced; a grab-and-go guide called “Small Steps, Big Visions”. It focuses on the eight foundations in the Ambitions Framework, with additional guidance on collaboration and partnership working, and sharing learning. Each foundation is presented with a ‘what’ (definition), ‘ask’ (prompt questions), and ‘examples in action’ (drawn from case studies).

Conclusions

Research can contribute to policy implementation to advance palliative and end of life care. The engagement and input of those responsible for implementation is key.

Peer Review reports

Introduction

Originally released in 2015, the relaunched Ambitions for Palliative and End of Life Care: a national framework for local action (2021–2026) (“Framework”) [ 1 ] provides a vision for palliative and end of life care (PEOLC) at the local level throughout England. Developed in collaboration with over thirty cross-sector partners, the Framework sets out six Ambitions, accompanied by a set of Foundations that identify what is needed for their realisation (Table 1 ). Although not mandated policy, the Framework is incorporated into the PEOLC Guidance for Integrated Care Boards (ICBs), reflecting their statutory duties under the Health and Care Act (2022) [ 2 ]. The Framework is accompanied by a self-assessment tool [ 3 ], which can be used to self-assess provision against the Ambitions.

Editorials [ 4 , 5 ] and blogs [ 6 , 7 , 8 ] have endorsed the Framework and examples of its use are documented [ 9 , 10 , 11 ]. However, research evidence is limited. Barker’s work [ 12 , 13 ] with professionals involved in PEOLC policy development demonstrated appreciation of the Framework in pulling together various policy strands and providing a direction for local-level service development. However, its understandability was questioned, and concerns raised regarding the Framework’s limitations as non-mandatory guidance, as well as potential to increase inequalities nationally. Our recent survey of PEOLC providers [ 14 , 15 ] found a similar pattern of understanding. Although the Framework was endorsed as a validation of the importance of PEOLC and statement of excellence in provision, uncertainty over how this excellence might be achieved was evident. In addition, concerns were raised that differential uptake of the Ambitions would exacerbate local-level inequalities in provision. Our survey [ 14 , 15 ] also demonstrated a clear desire from practitioners for support to help address identified challenges, particularly concerning implementation of the Ambitions.

The difficulty with implementing policy and guidance in health care is well documented [ 16 , 17 ]. Firstly, implementation is a complex process, especially when a wide range of stakeholders operating across different settings are involved [ 18 ]. Secondly, the large number of policies and guidance that practitioners need to embed can create challenges. In the late 1990s, it was noted that clinicians were ‘inundated by a tidal wave of guidelines’ [ 19 ], and the volume of PEOLC policies and guidance has grown nationally and internationally since the early 2000s [ 20 , 21 ]. While some of the health services research literature focuses on the development and implementation of evidence-based guidelines (see for example [ 22 , 23 ]), our interest is in documents – like the Framework – that are viewed as guidance for service development and practice. Such documents can have an ambiguous role in healthcare as they are not formal policy, nor are they protocols for patient care (unlike evidence-based guidelines). Boundary objects – an artefact or practical resource that facilitates the sharing of ideas across social worlds, such as that involving policymakers and practitioners– have been identified as having the potential to transform knowledge and practice [ 24 ] including in PEOLC [ 25 ]. It is also recognised that successful implementation can be supported by a toolkit, which can include boundary objects that help explain what people are supposed to know, how they can do things differently, and to see how the change may fit with their organisational context [ 26 ]. There is, however, very little existing literature on how to develop such objects; the focus tends to be on guidelines or best practice (see for example [ 27 ]), or on the development of toolkits for specific clinical interventions [ 28 ].

To meet the desire for support with the implementation of the Ambitions Framework and building on our previous mapping survey research, we undertook a multi-phased study, which examined how people interpreted and used the Framework [ 29 ]. The study led to the development of a practical resource (a Grab and Go Guide, “Guide”), designed to help users to identify and undertake action in pursuit of the Ambitions. Footnote 1 It was beyond the scope of the study to build a full toolkit for Framework implementation; additionally, there are some existing resources hosted on NHS England. Instead, we drew on the findings of our study to deliver a boundary object that provided additional support with implementation. This article describes the process through which this object (Guide) was developed and discusses the implications for research, policy and practice. As such it does not report detailed findings from our multi-phased study; these are reported elsewhere [ 29 ].

This was a four, inter-dependent staged qualitative study (see Fig. 1 ). Developing toolkits is a multi-staged process involving multiple methods and stakeholder engagement [ 28 ]. Since we were aiming to only create one object (limited due to resource constraints), we adapted the toolkit development resource produced by the University of California Berkeley School of Social Welfare (CalSWEC) [ 26 ]. CalSWEC describe a 9 step process to develop an implementation toolkit: investigate, define, engage, assess, plan, transfer learning, evaluate, consider policy impact, and consider fiscal impact. Although designed for Human Services, others have also adapted the resource for healthcare contexts [ 28 ]. Our use of the CalSWEC process was driven by the data collected during our study and is described below. All data collection was online via MS Teams; with consent, sessions were recorded and auto-transcribed before being anonymised. The study ran from April 2022 to March 2023; data collection was undertaken between May 2022 and January 2023. Ethical approval was received from the Human Research Ethics Committee at The Open University (HREC/4304/Borgstrom).

Study Design

The study team was not involved in the development or relaunch of the Framework. The team is interdisciplinary and is made up of two social scientists (EB, JJ) and two nurses (USL, CH). EB has been researching English PEOLC policy and guidance since 2010. JJ is experienced in evaluating PEOLC services and engaging a wide range of stakeholders for knowledge exchange. USL has specialist expertise in healthcare professional education as well as researching professional’s experiences of service provision. CH has over 30 years of experience in clinical, managerial and quality improvement within the NHS and third sector, as well as PEOLC policy-making and implementation on a national scale. Collectively, the team brought insights from their respective disciplines and experiences to inform the study design and the design of the object (Guide). Regular team meetings were held to discuss ongoing data collection and analysis, and were supported by an advisory group which included academics, PEOLC service providers, and members of the public (as representatives). This combination allowed us to foreground focusing on research and practice gaps in the study as they emerged within the wider recognition that no evaluation of the Framework had been done to date, and to question ‘what is useful in practice’ as a driver for both the design and focus of the study research stages, as well as the development of the final object (Guide).

Stage 1 involved 17 in-depth case study interviews with participants who had used the Framework in local service development. Participants were identified from the previous mapping survey [ 14 , 15 ] and/or invited by the research team, purposively selected for diversity in terms of locality, setting and type of work undertaken. Interviews were selected for the case study component to enable participants dedicated, confidential time to discuss the Framework, their service/practice, and other issues they considered relevant to implementing policy/guidance or service development. Using a semi-structured guide, discussion focused on how the Framework had been used, issues involved in doing so, and the impact of activity undertaken. Where available, interviewees provided written material capturing their use of the Framework (e.g. education slide decks used in training, or local strategy documents). Data analysis followed a dual deductive and inductive process. Deductively, we used the core question “What do the data suggest for how the Framework is being implemented, and what are the key issues involved?” as the point of entry into the data. Inductively, we interrogated the data for what they were suggesting in relation to our guiding question, using a three-step process. This process involved: an initial categorisation of the data according to their essential content; comparing the different sections of the data created through step one to identify how they connected; and, expressing this connection through the development of overarching themes and sub-themes. Analysis was undertaken by two members of the team (EB, CH) who collaboratively reviewed all interview transcripts. Based on this process, we identified four major themes and attendant sub-themes: (a) major theme – how implemented (sub-themes: why the chosen focus of work; activity undertaken); (b) major theme – challenges and opportunities (sub-themes: how resolved or capitalised on; to what effect); (c) major theme – outcomes achieved (sub-themes: impact; how measured/identified); and (d) major theme – perceived implications for use of the Framework (sub-themes: requirements for implementation; how use of the Framework related to other areas of service provision).

Stage 2 involved four focus groups, organised by ‘role’ – service managers, service providers, commissioners, and members of the public. Participants ( n = 2–8; 21 in total) were drawn from the broader constituency of those involved in PEOLC, irrespective of whether they had used the Framework or had been selected for a case study interview. Stage 1 had provided us with understanding and experience from those who had directly engaged with the Ambitions Framework. Now, we wanted to create an opportunity to open up the conversation to others whose knowledge and experience were also relevant. We used homogenous focus groups to bring together groups of people with shared ‘location’ in terms of service provision and development within an interactive forum in which they could discuss, confirm and challenge us as researchers and one another. We used the themes identified in Stage 1 in the development of a semi-structured focus group interview guide. The guide facilitated discussion of issues that Stage 1 suggested were relevant, enabling participants to consider these issues according to their respective roles, responsibilities and priorities. We were careful to encourage participants with little or no experience of Framework implementation to offer their perspectives and for all participants to be able to raise issues not directly prompted by our questions.

Invitations were circulated to previous participants (with a request to disseminate), on social media, and where possible in relevant PEOLC networks/newsletters. Discussions lasted no more than 90 min. Analytically, we used a deductive approach, interrogating the data in terms of how it aligned with the thematic framework generated in Stage 1, but strategically taking account of new issues or variations on issues already identified. Areas of consensus and divergence in the group conversation were analysed closely to understand why they mattered to participants; areas of divergence enabled us to identify different understandings of the Framework and implementation. Analysis was undertaken collaboratively by the four members of the research team through discussion. This analysis showed overlap with what we had found in Stage 1 in terms of overarching themes, broadening the content of these themes (new sub-themes were developed) and capturing new perspectives on the constituent issues. For example, the theme of “challenges and opportunities” was expanded to include the ‘language and order of the Ambitions’, both of which could be experienced as ambiguous, leading to uncertainty about what constituted relevant work and if and how it should be prioritised. The theme of “perceived implications for use of the Framework” was consolidated; in Stage 1 participants had talked about their use of the Foundations set out in the Framework in their implementation activity; Stage 2 participants also highlighted the value of using the Foundations as they provided a tangible statement of activity relevant to the Ambitions.

By the end of Stage 2 we had accumulated an extensive body of evidence. At its core, this evidence showed acknowledgement of the Framework to advance the quality of PEOLC, identified areas of work considered particularly important, and revealed opportunities and challenges in progressing relevant activity. Our aim for Stage 3 was to move to consideration of how these areas of work and attendant opportunities and challenges might be addressed. To that end, for Stage 3, we structured it the data collection around four areas of work that had been consistently prioritised and led to questions about further implementation by participants in Stages 1 and 2: 1) sharing learning, 2) strategy, self-assessment, and measuring progress, 3) partnership working, and 4) notions of community in the context of PEOLC. Each area became the focus of a themed workshop (each with between 10–18 participants; 40 individuals in total). Recruitment for Stage 3 followed the recruitment strategy adopted for Stage 2. Individuals could attend as many workshops as they wished; some attended more than one, but no one attended all four. After initial provision of information on workshop aims, structure and content, a semi-structured guide facilitated discussion on key issues relating to each area. These included: relative importance of the area in terms of enabling Framework implementation; how it might be progressed; and, opportunities and challenges in doing so. Where relevant, participants shared examples of practice. Following the workshops, the research team met to review the findings. To enable us to move towards the development of an object, analysis of Stage 3 data differed from Stage 1 and 2 to prioritise a focus on facilitating implementation through an object. To do so, we interrogated the evidence by asking three key questions of it: ‘what is working well for services with regard to implementation of the Framework’; ‘where are there still barriers to implementation’, and ‘what could support further implementation’. As we undertook the review, we explicitly considered the evidence from Stage 3 in relation to that generated in Stages 1 and 2, looking for overlap, dissonance and implications for how implementation could be further progressed.

The review highlighted four key issues. Firstly, broad consensus around the value of the Ambitions Framework as a statement of high quality PEOLC and aspiration to advance service provision according to the values it enshrined. Secondly, wide variation in knowledge of, and confidence in ability to undertake action to advance, the Framework. Even where participants were knowledgeable, many reported not knowing where to start or how to progress. In part, this was linked to a perception of the Ambitions as important in setting out core principles and values for service development, but lacking a clear steer on how these might be translated into action. Some had used the Framework’s self-assessment tool; although the tool was considered practical for identifying gaps in service provision, participants found it difficult to use, especially when mapping more than one service. Moreover, once gaps were identified, how to address these gaps presented entirely new challenges, such as relevant action to take and how this action might achieve desired goals, given issues like limited resources, variable stakeholder buy-in and system-level priorities.

Thirdly, that focusing on one or more of the Foundations (rather than the Ambitions themselves) helped foster a sense of relevant action, often working towards the realisation of multiple Ambitions. As indicators of relevant areas of work to be addressed, the Foundations could be used as ‘levers’ for action, for example, when developing business cases or in the commissioning process, in ways that the Ambitions, as aspirations, could not. This approach was considered even more productive given the Foundations’ relevance to wider health and social care goals. Action taken in respect of the Foundations could therefore directly address the Ambitions within the wider system of working.

Finally, the importance of, and appetite for, sharing of practice and mutual learning across Ambitions-related work. Participants repeatedly asserted the value of knowledge exchange, to gain insight into the sort of action that might be taken, and how attendant opportunities and challenges might be addressed. In this context, they considered participation in the focus groups and workshops undertaken as part of our data collection an important source of learning. There were repeated requests for opportunities to continue this learning, to enable the development of knowledge pursuant to implementation.

Using this evidence, it was apparent that an object to help bridge the gap between the Framework and action that might be taken in response would be of value. Object development formed Stage 4 of our work, outlined below.

Stage 4: Developing the object (Grab and Go Guide)

Preliminary work.

The team used the insights from Stages 1–3 to help shape the focus and content of the object in four essential respects. Firstly, guidance on activity relevant to the Foundations; these offered a tangible focus for activity. Secondly, guidance on collaboration and partnership working, and sharing learning; these had emerged as priorities in respect of all action taken to progress the Foundations. Thirdly, the need to be as explicit as possible, whilst avoiding overly prescriptive guidance; it was important that users could see the possibilities for action in the context of their local service setting and priorities. Finally, how best to pitch content; at this stage, we were aiming to create an object relevant to the broad constituency of people (professional and non-professional) involved in PEOLC.

Using the CalSWEC categorisation of tools, we identified that a ‘definition tool’ would be beneficial as that would enable us to focus on defining the Foundations, adding information about sharing learning and collaboration, and keep the object relatively short. Definitional tools seek to explicitly define key aspects needed for implementation, including describing meanings and providing examples of implementation actions [ 26 ]. Development of the object also took into consideration existing Ambition Framework resources to avoid duplication. The decision to develop a short document was informed by evidence gathered in Stages 1–3 about how participants felt exiting resources were lengthy. Additionally, we were cognisant of the pragmatic need for a concise document, recognising how it may be used in busy day-to-day practice [ 30 ].

Based on the requirements identified, we developed the document using a three-part structure for action – ‘what, ask, and example in action’ – for each Foundation and for both collaboration and partnership working and sharing learning. The structure reflected our theoretical approach to supporting users to understand, interpret, and implement, all of which had been prioritised by participants throughout data collection, and are recognised as key components for implementation toolkits [ 26 ]. ‘What’ aids understanding by describing relevant activity, thereby unpacking its potential for action. ‘Ask’ is a series of prompts, which encourage users to think about (or interpret) what this potentially means for them in terms of their service and action, considering relevant activity already taken, to be progressed, or initiated.

When populating the ‘what’ element, we based content on participant stated need for clarity and inclusivity. The same approach informed the content of the ‘ask’ element, which reflected participant descriptions of the sorts of issues they had confronted, and associated questions they had asked themselves. The ‘Examples in Action’ were drawn from case studies collected during Stages 1–3, provided to illustrate a range of possible action, rather than examples of ‘best practice’ (since case studies were not evaluated). Adopting the ‘what, ask, and examples in action’ approach, we sought to create a tool that enabled people to access knowledge (often tacit) about each Foundation within their local-level context. Provisionally, we called our object a ‘Grab and Go Guide’, reflecting its succinctness and action-orientation, and used the title ‘Small Steps, Big Vision’ to link into how people thought about implementation in practice.

A draft of the Guide was shared initially with the study’s advisory group for feedback on the format adopted, language used, and examples provided. Feedback helped to refine the definitions, prompt questions, and examples provided. Resulting changes focused particularly on two components of the guidance: ‘co-design’ and ‘those important to the dying person’. Overall, refinement resulted in more consistent coverage of each of the Foundations and associated action.

Evidence cafes

We used the refined Guide during two Evidence Cafes [ 31 ], each with 6–15 participants and lasting two hours. An Evidence Café is a structured workshop designed to facilitate the process of translating research into practice by collecting different views on evidence and suggested outputs. They provide participants with an opportunity to explore how research can inform their practice, whilst also providing researchers with practice-based insights. Evidence Cafes are structured around one or more discussion objects rather than presentations to encourage knowledge exchange– in this study, the object was the Grab and Go Guide.

The aim of the Cafes was two-fold: (a) to garner comprehensive feedback on the draft Guide, on the basis of which final amendments could be made and (b) collect additional data on issues relating to use of the Guide. Recruitment followed the same approach as for Stage 3. Participants included: health and social care providers, commissioners and/or end of life care area leads, those in policy-oriented roles, and members of the public. Ahead of both Cafes, participants were sent the draft Guide, alongside information on the topics for discussion on the day, to give them time to read and reflect. On the day, a preliminary presentation of evidence from Stages 1–3 established the context and rationale of the focus for discussion – the draft Guide. Discussion then focused on the Guide and its potential use in practice. Participants were asked to provide feedback on: intended audience, intended use, content, format, and additional issues. To maximise opportunities for input, discussion was conducted in facilitated break-out rooms and participants could also provide asynchronous feedback via email for up to a week after the Cafes. Group facilitators took notes and reviewed the transcript to identify feedback relating to all aspects of the Guide and comments on potential use, as well as limitations. Overall, the response to the Guide was extremely positive; participants were able to readily discern its relevance to practice. The following sections provide detail on feedback received.

Audience and intended use

We asked if and how the Guide should be targeted for a particular audience. Although participants prioritised a need for commissioners to use the Guide, specific targeting was opposed on the grounds that a necessary focus on systems-level issues would render it less relevant for other audiences. Nor did participants consider the Guide to be useful as a service user-facing document, as this would require content to be very service specific. Rather, the consensus was for the Guide to have general relevance and utility for those working within health and social care settings, relevant across education, reflection and action around the Framework.

Content and format

Participants recommended explanatory content to include descriptions of terms and concepts, examples, and explicit direction in the form of prompts for consideration. A concentration on clinical activity was eschewed, in favour of guidance regarding intersectional and inclusive approaches. Overall, participants endorsed the Guide’s focus on the Foundations, with the ‘what, ask, action’ format considered a useful structure for facilitating appreciation of the possibilities for relevant work. They found the Guide’s overall style and language both encouraging and enabling. Some participants noted a helpful alignment between the focus on Foundations and the guidance given to ICBs. Two further suggestions were made: that the Guide be made available in both digital and print format and that it enables user input, so that examples could be edited/added to reflect local level priorities.

Additional topics

As outlined above, during development of the Guide, we added two elements – collaboration and partnership working, and sharing learning. Some participants viewed these as implicitly underpinning the eight Foundations and questioned the need to include them as separate elements. Others found them useful, as reminders of their value in supporting relevant action and how they might be fostered. Participants were divided about our labelling of these elements as ‘foundations’; although considered a fundamental basis of (or ‘foundational’ to) action, on balance, a distinction between these elements and the ‘Foundations’ as set out in the Framework was preferred.

Recommendations for further engagement with the Framework

Participants suggested other ways to further engagement with the Framework. Some stressed the value of using the Guide in teaching workshops and discussions, especially to help people understand the Framework and potential mechanisms for realising the Ambitions. Others felt that awareness raising of the Framework was required using, for example, webinars, case reports, and an app. Although the current availability of relevant FutureNHS resources was noted, as a password-protected space, participants highlighted their relative obscurity and exclusivity.

Based on the feedback from the Evidence Cafes, we made several key decisions concerning the Guide. Firstly, we kept the intended audience wide, to enable its use by different audiences and in a range of settings. Whilst this may limit the Guide’s impact on specific user groups, core relevance is maintained and the Guide can be used according to different roles and responsibilities. Secondly, we retained content on collaboration and partnership working, and sharing learning, but removed any reference to them as ‘foundations’. Thirdly, a graphic designer worked with us to ensure the guide could be both printable and digital, with embedded hyperlinks. The Guide has a version with copyright license that enables re-use and adaptations with attribution; in this version the prompts and examples are not pre-populated, allowing users to adapt it for their purpose. The final Grab and Go Guide – “Small Steps, Big Vision can be accessed on Open Research Online (ORO) https://oro.open.ac.uk/88013/ . Here we provide an example of its content (Fig. 2 ).

Grab and Go Guide exemplar

The past thirty years have seen increasing prioritisation of policy as a key component of PEOLC development [ 32 , 33 , 34 , 35 , 36 ], even where national policy exists [ 37 , 38 ], progress in PEOLC provision has been shown to be limited [ 39 , 40 , 41 ], calling into question the role of policy in driving development [ 37 , 42 ]. A key issue is the extent to which policy is implemented as intended, with a small body of evidence demonstrating the complexities and challenges involved; Whitelaw et al. critically discuss a range of issues that challenge the role of policy in palliative care development [ 42 ]. May et al. [ 43 ] show how limited resources and competing priorities within both the PEOLC care sector and wider health care system hindered the delivery of Irish national policy. Barker et al. [ 44 ] identify challenges to the implementation of United Kingdom (UK) care policy operating at the micro (e.g. patient preferences and priorities), meso (e.g. inadequate resource allocation) and macro (e.g. lack of integrated system working) levels.

The findings of our work add to the limited evidence-base concerning the relationship between policy and PEOLC development. They align with this evidence, suggesting that a linear process from the setting of policy to outcomes cannot be assumed [ 37 ]. We show that, in addition to the complexity of the context into which the policy is introduced, implementation can be stymied because of the policy itself. In the case of the Framework, although the Ambitions are endorsed as valid statements of ‘ideal’ PEOLC, their high-level character problematises implementation. An agreed ‘vision’ is set out, but action that might be taken to realise that vision is not. As others have noted, “the likelihood of implementation where policy simply rests on normative ideals is questionable” ([ 39 ]; p.89).

In our case, the crux therefore rested on two requirements: (a) proving a roadmap that moves the Ambitions, as normative ideals, to action that might deliver on these ideals. and (b) doing so in ways that fit with the realities of health care provision and working. Our Guide meets these two requirements. In terms of a ‘roadmap’, it unpacks the Foundations, breaking them down both conceptually and practically, therefore helping users to identify relevant action to be taken. Since human knowledge is context-specific and often tacit in nature [ 45 ], the ‘ask’ prompt encourages users to consider their own settings and priorities of care provision, thereby facilitating access to this tacit knowledge and understanding. The value of doing so was confirmed throughout our data collection; participants had difficulties realising how work already undertaken or being progressed connected with the Framework.

In terms of accommodating the ‘realities’ of care provision, we needed to strike a careful balance. PEOLC has been described as a ‘wicked’ policy area [ 46 ], characterised by complex interdependencies and beset with changing, even contradictory, requirements. Throughout the multiple stages of our data collection, participants communicated a strong sense of sometimes feeling overwhelmed by this complexity. However, the Guide can and does not seek to ‘solve’ all of this complexity; indeed as Lindqvist et al. [ 32 ] point out, discrete solutions are not readily available. Instead, it focuses on local-level potential to take small steps, with relatively simple, action-oriented messages. The value of ‘action oriented’ messaging has been demonstrated elsewhere in the policy research field [ 47 ]. As a high-order document, the Framework lacks such explicit messaging, something that was repeatedly highlighted as a deficit by our participants. While it does provide some direction in the form of the Foundations as expressions of areas of relevant activity, it cannot speak directly to the multiple, diverse contexts of such activity. It is here that the Guide ‘steps in’ in the form of explanations (the ‘what’) and prompts (the ‘ask’ and ‘examples in action’). We deliberately framed the examples of action as experience , as distinct from research findings, reflecting the preference for experience ‘over’ research that has been identified within the knowledge transfer and exchange literature [ 48 ]. Moreover, we did not include detailed case studies as examples of possible action, in recognition of the difficulties that can be experienced in the transfer of knowledge across different organisational and practice settings [ 45 ].

Strengths and limitations

One of the strengths of this study is the process through which the object (Guide) was developed, foregrounding an understanding of implementation in practice before creating an object to support implementation and then obtaining feedback on the object. A limitation of this approach, however, is that it relies on the perspectives of those who participate. Since participants were self-selecting, we do not know what would support those who did not attend or express an interest in the Ambitions Framework.

Evidence Cafes are an established method of knowledge exchange with embedded data collection, typically involving a specific item or object, around which discussion coalesces [ 31 ]. Developing the Guide as the discussion object enabled us to share research findings – such as the usefulness of focusing on Foundations, case examples, and the themes of sharing learning and collaboration – and to gain feedback on the object. Whilst such events tend to be held face-to-face, the online format with facilitated breakout rooms worked well, since we kept participant numbers low and pre-shared the object via email. Participants were also able to provide feedback via email after the event, which enabled flexibility in response and prolonged engagement. A limitation of the method is that its success depends on who attends; the number of commissioners, as well as professionals working in social care, was low. Finally, we are unable to comment on the extent to which the Guide is being used; positive feedback does not necessarily translate into uptake in practice.

Our extended programme of work helps redress a lack of evidence explicitly connecting policy instruments to practice outcomes [ 39 ]. It has produced valuable insight into how policy is made sense of and has contributed towards the implementation of policy (the Ambitions Framework) that has been consistently upheld as a positive instrument for service development [ 4 , 5 , 6 , 7 , 8 ]. The use of Evidence Cafes enabled the creation of a tangible object, already rooted in participant understanding and experience, that could be further refined on the same basis. This was vital for creating a resource that is more likely to be used by the intended audience(s).

Availability of data and materials

No datasets were generated or analysed during the current study.

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Acknowledgements

The authors would like to thank all participants, the funders, and the editors and peer-reviewers.

This work was supported by Marie Curie (grant MCSGS-21–602).

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EB lead the funding application, project, and drafting of this article. CH, JJ, USL and EB all contributed to data collection and analysis; CH, EB, and USL created the grab and go guide content. CH, JJ, USL edited the manuscript and all authors approve the final version.

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Prof Borgstrom leads Open Thanatology at The Open University, an interdisciplinary research group for the study and education of death, dying, loss and grief across the life course. All authors are part of this group.

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Borgstrom, E., Jordan, J., Ledger, U.S. et al. Small Steps, Big Vision: using multi-stage qualitative research to develop a grab-and-go guide to support utilisation of the Ambitions for Palliative and End of Life Care framework. BMC Palliat Care 23 , 151 (2024). https://doi.org/10.1186/s12904-024-01466-8

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Published: 11 June 2024

Benefit finding among family caregivers of patients with advanced cancer in a palliative treatment: a qualitative study

Yuanyi Song 1 na1 ,
Min Wang 2 na1 ,
Meina Zhu 1 ,
Na Wang 1 ,
Ting He 1 ,
Zhihui Shi 1 ,
Mengye Chen 1 ,
Tian Ji 1 &
Ying Shen 1

BMC Nursing volume 23 , Article number: 397 ( 2024 ) Cite this article

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Metrics details

Benefit finding is the search for positive meaning from traumatic events, such as cancer. It can help caregivers have a positive experience in the caregiving process, relieve negative emotions, and reduce caregiving stress. The aim of this study was to explore benefit finding among caregivers of patients with advanced cancer in their palliative caregiving journey.

An exploratory qualitative design of phenomenology was used. Semistructured interviews were conducted with 19 caregivers of palliative care patients with advanced cancer. The Colaizzi 7-step analysis was used to analyse, summarize, and extract themes from the interview data.

The study identified five themes of caregiver benefit finding in the caregiving process: personal growth, strengthened relationships with patients, adjustment and adaptation, perceived social support, and perceived meaning in life. Most caregivers reported a closer, more dependent relationship with the patient, and only one caregiver did not report any positive changes.

Conclusions

Caregivers of palliative care patients with advanced cancer can have positive experiences in their care. Healthcare professionals should focus on supporting caregivers and helping them find positive experiences to cope with the challenges of caregiving and improve their quality of life.

Peer Review reports

According to 2020 data, there were 19.29 million new cancer cases and 9.96 million cancer-related deaths worldwide, and the incidence and mortality of cancer are increasing rapidly [ 1 ]. With advances in cancer treatment, palliative care provides comprehensive care for patients with advanced cancer, aiming to control symptoms such as pain, improve the quality of life for patients and family caregivers, preserve dignity and comfort, and positively affect the disease process as much as possible [ 2 ]. Benefit finding refers to seeking positive meaning from a traumatic event such as cancer [ 3 ]. It is the identification of benefits in the face of adversity and plays an important role in the cognitive process of adapting to adversity, a positive change that involves aspects of spiritual growth and a healthy lifestyle, an adaptive response to an adversarial situation [ 4 ].

Informal caregivers (spouses/partners, family members, close friends, etc.) play a crucial role in providing daily care and support to individuals with advanced cancer [ 5 , 6 ]. To meet the palliative care needs of people with advanced cancer, physical, psychological, spiritual, communication, decision-making, and financial issues may be addressed [ 7 ]. Caregiving is a complex and ever-evolving task. As the disease progresses, the caregiving burden gradually increases, often resulting in anxiety, depression, and fatigue among caregivers [ 8 ]. Nonetheless, positive psychology shows that caregivers can also experience positive changes, such as personal growth and closer relationships with others [ 9 , 10 , 11 ]. These positive meanings have the potential to enhance patient-caregiver interactions [ 9 ], redefine the meaning of life, and strengthen interpersonal relationships and self-perception [ 12 ].

The physical and mental health of patients and caregivers are interdependent and mutually influential [ 13 ]. Caregivers adapt to the stress caused by cancer by evaluating and adjusting coping mechanisms [ 14 , 15 ]. Benefit finding can assist caregivers in actively adapting to their role [ 16 ] and alleviating negative emotions and psychological distress [ 17 ]. Some studies have demonstrated that caregivers experience positive changes associated with the disease [ 9 , 10 , 11 ]. However, research on caregiver benefit finding in advanced cancer patients remains limited, and few studies have assessed caregivers during palliative care. Therefore, we interviewed caregivers of palliative care patients with advanced cancer to explore their positive experiences and benefit finding in the process of care, to improve the quality of care, and to inform intervention strategies.

Using an exploratory qualitative design of phenomenology [ 18 ], we aim to explore the positive experiences of family caregivers of advanced cancer patients in palliative care, delving into the benefit finding they experience from it. The data were collected from February 2023 to November 2023. We adhered to the Standards for Reporting Qualitative Research checklist for our reporting [ 19 ]. The Medical Ethics Committee of Zhongnan Hospital of Wuhan University approved this study (2022127). Given the vulnerability and sensitivity of the caregivers involved in palliative care, this study strictly adheres to ethical principles to ensure the legality of the research and full respect for the rights of the caregivers. Before the interviews, the purpose, methods, and potential risks of the study were explained to each caregiver, and their informed consent was obtained. At the same time, we have promised to respect the caregivers’ right to withdraw from the study at any time. To ensure the privacy and security of the caregivers, strict measures have been taken to anonymize the data, preventing the leakage of personal information. The interview data is securely stored on encrypted devices. Additionally, our research team possesses professional counseling skills and can provide necessary support and comfort during the interviews to ensure that the caregivers’ emotions are properly cared for.

Participants

The purposive sampling method was used to select the family caregivers of palliative care patients with advanced cancer in the oncology ward of a tertiary hospital in Wuhan as our study subjects. The inclusion criteria included being aged 18 years or older and being the primary caregiver of palliative care patients with advanced cancer during hospitalization. The caregivers were able to communicate and understand, and all participants signed the informed consent form. The exclusion criteria included the presence of psychiatric conditions, employment status, and other major stressful events that had occurred recently. The sample size was determined by the principle of data saturation, and 19 caregivers were ultimately included in this study. All participants provided informed consent and signed the informed consent form.

The interview guide was developed based on the research purpose and the review of existing literature and optimized through pilot interviews. The final interview outline was as follows: (a) Can you describe your experience of caregiving? (b) What difficulties did you encounter in caregiving and how did you overcome them? What support did you receive? (c) How has caregiving affected your own body, life, and family? What positive changes have occurred? (d) How has the way you relate to your patients changed? (e) What things in life are most important to you now? (f) Do you have anything else to say?

The interviews were conducted by specialty nurses who were learning and training in qualitative research methods before the interviews to ensure a standardized interview process. This study was conducted in the inpatient oncology ward, with one-on-one interviews taking place in quiet, private rooms designated for communication. Additionally, considering the convenience of the caregivers, telephone interviews were also conducted as part of the study. The purpose of the study was explained to the participants consent was obtained, and the interviews were audio-recorded throughout. The demographic information of the participants was collected, and interviews were subsequently conducted. The interviewers encouraged participants to express their thoughts and feelings deeply by listening carefully and following up with questions appropriately, and carefully observed and recorded the nonverbal messages, including tone of voice, intermittent pauses, facial, expressions, and body language. Leading or suggestive language was forbidden and any doubts in the interviews were clarified on time. Each interview lasted approximately 40 to 60 min and was adjusted accordingly based on the specific situation of the caregiver.

Data analysis

General demographic information was collected from caregivers, utilizing frequency and composition ratios for description. Within 24 h after each interview, the audio recordings of the interviews were transcribed verbatim into text, and the information was double-checked after transcription completion. The interview transcripts were imported into Nvivo 12.0 software for coding. The Colaizzi 7-step [ 20 ] analysis method was used for data analysis. ① The researchers repeatedly and carefully read all the interview materials of caregivers, to be fully familiar with and understand what caregivers provide. ② The data are analyzed word by word, to identify and extract the relevant, important, and meaningful statements relating to the result of the benefit finding. ③ Code recurring ideas within the text, and develop general statements or explain their meanings. ④ Group similar themes and descriptions together, comparing them repeatedly to identify and extract similar ideas, thereby forming a foundational framework for the benefit finding of caregivers. ⑤ Coordinate each theme closely with the research content, extracting original statements from caregivers and providing detailed descriptions. ⑥ Compare similar themes and descriptions repeatedly, distinguishing and extracting similar viewpoints to form the basic framework of caregiver benefit finding. ⑦ Present the generated thematic structure to the caregiver for validation and feedback to ensure the accuracy of the results. Text transcription analysis and coding were independently conducted by two researchers. Subsequently, the codes were compared and cross-analysed. Any disagreements were resolved through discussion within the research group until a consensus was reached. For example, if two researchers hold different views during the coding stage or understanding of the topic, we will reach a unified understanding through discussion.

A total of 19 caregivers participated in the interviews, one by telephone and the rest face-to-face. The average age of the patients was 54.37 (12.74) years (range: 30–82 years). The average time to cancer diagnosis was 3.58 (3.06) years (range: 1–12 years), of which 17 patients (89.5%) had metastases. The average age of the caregivers was 53.89 (14.55) years (range: 29–82 years). Most provided care for their spouses (36.8%), followed by their parents (26.3%) or children (26.3%), and a few were their sisters (10.5%). Additional details are provided in Table 1 .

Qualitative findings

The thematic analysis revealed five main themes and fifteen subthemes reflecting benefit finding of caregivers (Table 2 ).

Theme 1: personal growth

Serving as a caregiver.

In role change, the caregiver recognizes the importance of caregiving after the patient’s illness and takes the initiative to take on caregiving tasks and household chores.

“I treat her better than before. In the past, when we were running a pig farm and working together, I did not feel she was that vulnerable and did not pay enough attention to her. Now I do not let her do anything and just play mahjong every day. ” C12. “She used to always take care of me and care for the family. Now that she’s sick, I take care of her as much as I can. ” C9.

Enhanced familial responsibility

During the caregiving process, the caregiver becomes more deeply aware of his or her family responsibilities and subsequently becomes more actively involved in family life, collaborating to maintain harmony and happiness within the household.

“I’m more mature, have a stronger sense of family responsibility, and am family-centered except for work, where mom is most important.” C14. “I have come to understand the significance of fatherhood. While having children does not guarantee security in old age, we can still end up overwhelmed by their dependencies. Nevertheless, it is crucial to fulfill our duty towards our children, as they have been entrusted to us.” C15.

Initiating assistance

In the face of family difficulties, one of the caregivers expressed the selfless act of stepping up and offering help without hesitation. This selflessness is an important force in providing support.

“I will still step up to the plate when my relatives face any kind of trouble.” C7.

Theme 2: strengthening relationships with patients

Pleasant companionship.

The majority of caregivers reported harmonious family relationships during the caregiving process, highlighting the strong emotional connection and support they provide to their loved ones.

“I am in good health and can take good care of her. We have been getting along well over the past two years of treatment. There has always been a mutual understanding, and despite occasional friction, I can be the first to admit mistakes.” C2.

Increased intimacy

Caregivers spend more time with the patient, support and encourage each other, develop closer relationships, and increase the patient’s reliance on the caregiver.

“During the few years that I have taken care of her, I have done my best. She is also very understanding of me, worried that the physical demands of caring for her might wear me down. She will take care of me, remind me to pay attention to my health, and we are there for each other during hospital stays.” C6. “She underwent surgery in 2012, radiotherapy in 2015, and targeted therapy in 2023, and she is becoming increasingly dependent on me. She wanted me to accompany her throughout the treatment. In this life, we are sisters, but in the next life, we might not be. When she came to Wuhan for treatment, I accompanied her throughout.” C7.

Warmth and strength

Caregivers demonstrated selfless love, valuable companionship, and personality shifts in caregiving. They all express positive coping attitudes, perceive benefits in the face of adversity, and provide mutual support to face challenges together.

“Despite the great internal pressure, the back pain, and taking care of patients at night, I still insisted on giving all my love to my daughter and treating my sick daughter wholeheartedly without any complaint.” C1. “In the past, both my mom and dad worked outside and we usually spent little time together. However, now I have the opportunity to be with them more often, and I am especially happy to spend time with my mother.” C3. “I used to have a bad temper, but now I always defer to her.” C12.

Theme 3: Adjustment and adaptation

Energetic response.

When faced with the difficult situation of a family member with a serious illness, the caregiver adjusts to the pace of the treatment, adheres to the treatment with resolute determination, has trust in the healthcare team, and maintains a positive mindset.

“She has been sick for 13 years and has grown accustomed to it. My partner always says we do not have enough money for hospital treatment. I always encourage her to keep going because the doctors have not given up yet.” C6.

Despite the pain and anxiety associated with treatment, caregivers remain hopeful, valuing the current effects of treatment and the quality of life, and are not overly worried about the uncertainty of the future.

“We are interdependent, just want to get better soon. Our mentality is very positive there is nothing to worry about. We are not facing any major challenges, nor are we overwhelmed by any burdens. ” C12. “Before radiotherapy, I was very anxious about the patient’s condition and distressed that the patient was suffering from the disease. After radiotherapy, the treatment was effective and the pain was under control. While there is a possibility that the disease could recur, it’s something we can address when the disease can recur. There’s no need to worry about what may happen in the future.” C2.

However, some caregivers also reported that finding enjoyment in shifting their focus can help alleviate negative emotions and reduce caregiving stress.

“I often find joy in the face of adversity. Whether I’m playing cards or watching others play, I find time to go out, relax, have fun, forget my worries, and avoid crying at home.” C4.

Strengthen belief

Belief is a critical spiritual force that serves as the driving force and solid support for both patients and caregivers, instilling confidence in overcoming the disease.

“My daughter cannot live without my care, so this belief forces me to prioritize my health. Having cared for patients over the years, I seem to appear younger than my actual age.” C1. “I feel like we have a great task and an enormous responsibility on our shoulders. He can only rely on us. We cannot give in we must stand by his side and fight his cancer.” C10.

Patient factors

The patients themselves are resilient and optimistic, enduring the pain of illness and treatment yet remaining upbeat. The caregivers profoundly influenced and sustained hope and faith, alleviating the caregiving burden.

“I accompanied her through surgery, radiation, and chemotherapy. My mom is very optimistic and strong, and I felt comfortable being there for her without much stress.” C17. “She suffered a lot. Radiation and chemotherapy were difficult. I never heard her complain once. She was particularly resilient.” C18.

Theme 4: perceived social support

Family support.

Most of the caregivers reported feeling warmth during the patient’s illness with filial piety from their children and varying degrees of kindness and support expressed by relatives, friends, or neighbors.

“After she got sick, relatives, villagers, and friends showed great concern and helped us. I felt the warmth of their support. ” C9. “When we were in financial trouble, her mother would give us some money to use.” C5.

When the caregiver is providing hospital care, other family members take the initiative to undertake household chores, care for children, parents, and other obligations, and offer encouragement and support to the caregiver.

“I suffer from hepatitis B and severe fatty liver disease, and I spend all my time taking care of my mom. Fortunately, my family is very understanding and supportive, and my exceptionally kind in-laws assist in taking care of my son and daughter. They constantly encourage me to take good care of my mom. ” C3.

Social support

A case where a caregiver was supported by the company by approving a caregiving leave with no loss of pay.

“Leave from work does not affect pay the unit is still very humane.” C13.

Some caregivers mentioned that insurance, health insurance, and commercial insurance provided financial support and increased the patients’ chances of treatment and prolonged survival.

“I bought commercial insurance before she got sick, and it paid out 180,000 million RMB.” C1. “My mom has precision poverty alleviation health insurance and would not spend much on medical treatment.” C19.

Theme 5: perceived meaning in life

Cherishing companionship.

Faced with the uncertainty of life, caregivers cherish the present moment, do not worry too much about the future, and live with a positive attitude.

“I have to face the reality. I hope that I can live a good life and spend more time with my mother in a limited time.” C14.

Enhance health awareness

Caregivers can better understand the importance of good health, take the initiative to seek health-related knowledge, and pay attention to medical check-ups. The concept of seeking medical treatment should be changed, and medical treatment should be sought promptly if one feels uncomfortable. In addition, they are healthy and can take better care of patients.

“Both she and I value our health more. In the past, when I went to the hospital for examination, she would be very upset and say that I was making a mountain out of a molehill, being too worried and timid. Now she will take the initiative to ask me to have an examination.” C9. “Taking care of my mom has made me feel that my health is so important that I will be more conscious of my physical state and focus on weight management.” C14.

Maintenance of crisis consciousness

Caregivers purchase commercial insurance for themselves and their family members to respond to unknown risks, avoid potential financial losses, and receive timely protection in the event of an accident.

“Enhance the sense of crisis by purchasing commercial insurance for all family members.” C19. “At the same time, I have got commercial insurance for my dad. I hope that if there are any accidents at home, the financial piece will not be on us. ” C14.

Praying for well-being

Throughout the patient’s life, the caregiver is acutely aware of the patient’s significance and articulates their good wishes, hoping that the patient will recover or prolong his life, as well as wishing that the family and friends around him or her will be free from difficulties and frustrations.

“It is most important that mom is doing well on her treatment and is not resistant to medication, and I hope she can live a little longer.” C14. “May the loved ones around me be free from hardship and frustration.” C7. “Mom’s good health is the most important thing, but at the moment, it is no longer possible. In that case, it is crucial that she remains happy. In addition, truly, if she eats one more bite of food, I will be overjoyed.” C3.

Another caregiver hopes that a certain anticancer drug can be used in medicine as early as possible so that more people can afford it, and patients can be given more chances to treat their disease, control it, and prolong their lives.

“I hope that anticancer drugs will be included in the medical insurance plan as soon as possible.” C1.

In addition, only one caregiver reported that she did not experience any positive impact, that the patient’s personality had changed since she became ill, and that she was forceful, and assertive, and had difficulty getting along with the patient.

“She is looking at things with increasing difficulty, her mood is good one moment and bad the next, you never know when she might explode. My mom and I are very considerate of her, but she cannot seem to appreciate it. She is very dependent on me, and at the same time, she has a lot of dissatisfaction and resentment. ” C16.

This study explored the caregivers’ perceptions of benefit finding in palliative care patients with advanced cancer. Five themes were identified: personal growth, strengthening relationships with patients, adjustment and adaptation, perceived social support, and perceived meaning in life. The majority of caregivers reported benefit finding in the caregiving process, with only one caregiver not reporting any positive impact. This emphasizes the importance of providing psychological and social support to caregivers to help them better cope with their challenges and informs the refinement of palliative care support systems.

Cancer, as a major traumatic stressful event, has traditionally been studied mostly focusing on the negative emotions it triggers [ 21 ]. However, the Revision of Stress and Coping Theory [ 22 ] has brought positive emotions into the study of stress processes, and it reveals the coexistence of positive and negative emotions in coping with stress. Positive emotions help to restore physical, psychological, and social coping resources, and they produce positive coping processes, including seeking benefits.

The results of the study showed that caregivers experienced personal growth in caring for advanced cancer patients in palliative care, similar to the findings of Mei et al. [ 23 ]. Caregivers not only gained disease-related knowledge and skills [ 24 ] while assuming caregiving responsibilities and duties but also experienced the pleasure and satisfaction of companionship [ 25 , 26 ]. In addition, by reevaluating their values taking the initiative to assist others, and embracing a role as someone who is needed, caregivers elevate their sense of self-worth and infuse their lives with deeper meaning [ 27 ]. However, caregivers may experience negative psychological changes, such as anxiety, insecurity, and helplessness, while dealing with challenges. Therefore, while promoting the growth of caregivers, it is necessary to seriously consider ways to effectively ease their burden and stress, such as enhancing the social support system, offering tailored support, and attending to their mental well-being. During this process, caregivers can achieve self-growth and cognitive improvement during the caregiving process while maintaining their physical and mental health, thus better supporting and caring for patients.

During the caregiving process, spending time together significantly strengthened the emotional bond between the caregiver and the patient, resulting in a more intimate and dependent relationship, consistent with the study by Mosher et al. [ 11 ]. Family caregivers bear a variety of physical, emotional, social, and economic burdens [ 28 ]. Enhanced relationships and enjoyable moments together foster unity, understanding, and mutual support within the family, thereby improving cohesion and well-being. Therefore, prioritizing communication and interaction among family members is crucial for enhancing cooperation, and problem-solving skills, and continually strengthening the caregiver-patient relationships.

Research has shown that caregivers’ perceptions of benefits are closely related to their positive coping styles. Consistent with the findings of Li et al. [ 29 ], positive coping mechanisms can contribute to the level of benefit finding. Optimistic caregivers are more likely to view the caregiving experience in a positive light, which ultimately leads to a greater sense of benefit [ 30 ]. Furthermore, emotional catharsis, as a form of positive coping style, can effectively alleviate stress and negative emotions. In China, the low-income population and precise poverty alleviation healthcare policies provide financial support for patients. Caregivers perceive that social support can provide them with more resources and assistance, making it easier to identify benefits and opportunities—a perspective that contrasts with the Pascoe [ 31 ] and Kangas [ 32 ] studies. However, there are still inadequacies in the social support system in our developing country. To address this, the government is actively optimizing resource allocation and enhancing policy implementation. For instance, the implementation of medical care for major illnesses and preferential policies on personal income tax can alleviate the economic burden on families resulting from medical expenses. Additionally, the government is actively promoting the development of medical alliances and strengthening collaboration between communities and medical institutions to provide caregivers with more convenient and efficient medical services. Furthermore, the study highlights the need for improved communication between patients, caregivers, and healthcare providers to ensure that caregivers have access to crucial healthcare information [ 33 ]. It is essential to enhance communication, provide relevant resources, and encourage proactive decision-making in healthcare. The acknowledgement of social support aids individuals in adopting positive and beneficial coping styles [ 34 ]. The active search for benefit finding in the face of adversity is more likely to lead to social support, which can improve one’s ability to cope with challenges and enhance adaptive capacity and psychological well-being. With the combined efforts of government, society, and individuals, we can establish a more comprehensive social support system, providing caregivers with increased support and assistance.

In the course of caregiving, caregivers gain profound insights into the fragility and resilience of life, by reevaluating its meaning, which is key to reducing their stress levels [ 35 ]. They proactively adjust their lifestyles and devise coping strategies to navigate psychological and social challenges, ultimately finding meaning and deriving benefits from it [ 36 ]. Additionally, they remain vigilant to potential crises, purchase commercial insurance, and schedule regular medical check-ups. However, in the palliative care stage, most caregivers have a vision of prolonging the patient’s life, alleviating their pain, and improving their quality of life. These experiences and understandings are helpful for caregivers to better cope with difficult situations and maintain a positive attitude.

Benefit finding has been found to be an effective strategy for coping positively with stress [ 37 ], and it is vital to maintain a positive mood, which relieves stress, enhances well-being, and improves physical and mental health [ 31 , 38 ]. By strengthening the confidence of nurses and providing social support and resources, the burden of caregiving can be reduced [ 39 ]. Cognitive stress management [ 40 ], music therapy [ 41 ], group psychoeducation [ 42 ], expressive writing [ 43 ], and meaning-centered psychological interventions [ 44 ] have been proven to improve the level of benefit finding for caregivers, enabling them to gain positive influence from their caregiving experiences. These measures help reduce caregiving pressure and maintain positive attitudes among caregivers, thereby providing better support to patients.

Study limitations

This study collected data through individual interviews, but this method has limitations. Primarily, the subjective nature of interviews can lead to respondent selection bias, which may affect the universality of research findings. Additionally, all the interviewees were from the same region and ward, which means that they might face similar circumstances and challenges, leading to similarities in their caregiving experiences. Therefore, limitations in the types of cancer diseases among the patients also limit the transferability of findings. This study uses a qualitative approach with the primary aim of gaining insight into the human experiences of a specific sample, thus the conclusions may not apply to broader populations or environments. In the future, studies should be considered in different regions and cancer types to address these limitations. It is also important to assess the extent of the caregiver’s benefit from the care using a mixed-methods research approach. This could help us explore the mechanisms behind this phenomenon and guide the development of effective interventions.

Clinical implications

This study explored the phenomenon of benefit finding among caregivers of palliative care patients with advanced cancer, identifying five major themes that demonstrate the positive impacts that caregivers gain from their experiences with caregiving. These findings provide a valuable foundation for further research into carer benefit finding. The research findings can provide a basis for developing effective interventions targeted at caregivers to further support them in their work of caring for patients. By providing consistent support and assistance, people can enhance their coping abilities, improve their quality of life, and enable them to play a more active role in caregiving.

In summary, this study highlights the benefit finding of caregivers among caregivers of palliative care patients with advanced cancer in a variety of areas, including strengthening their emotional connection with the patient, redefining their meaning of life, personal growth, and improving their coping skills. Cancer care is a long-term task, and the positive impact of caregivers—an integral part of the treatment chain—is often overlooked. Therefore, future research should pay more attention to the long-term impact of caregivers’ benefit finding.

Data availability

No datasets were generated or analysed during the current study.

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Acknowledgements

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We would like to thank all participants in our research group. This research was supported by the Clinical Nursing Research Project Fund of Zhongnan Hospital of Wuhan University (LCHLYJ202203).

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Yuanyi Song and Min Wang are co-first authors.

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Department of Breast and Urological Oncology, Department of Radiation and Medical Oncology, Zhongnan Hospital of Wuhan University, Wuhan University, Wuhan, Hubei, China

Yuanyi Song, Meina Zhu, Na Wang, Ting He, Xu Wu, Zhihui Shi, Mengye Chen, Tian Ji & Ying Shen

Department of Thyroid and Breast Surgery, Zhongnan Hospital of Wuhan University, Wuhan University, Wuhan, Hubei, China

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Y. S., Y. S., M. W., M. Z., N. W., Z. S., and M. C. designed the research. Y. S. and M. W. designed the interview outline and participant materials, which were revised by M. Z., T. H., and T. J. Interviews were conducted by X. W. and Z. S. Under the supervision of T. H., T. J., and M. C. Y. S. and M. W. encoded, analyzed, and interpreted the data. Y. S., Y. S. and M. W. drafted the manuscript. Y. S., M. Z., N. W., M. C. and T. J. revised it critically and provided final approval for the submitted version.

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Correspondence to Ying Shen .

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Song, Y., Wang, M., Zhu, M. et al. Benefit finding among family caregivers of patients with advanced cancer in a palliative treatment: a qualitative study. BMC Nurs 23 , 397 (2024). https://doi.org/10.1186/s12912-024-02055-z

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DOI : https://doi.org/10.1186/s12912-024-02055-z

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The World Health Organisation and palliative care stakeholders recommend that healthcare workers are educated in palliative care. Provision of high-quality palliative care is fundamental to nursing practice. However, caring for palliative care patients and meeting family needs is challenging without appropriate knowledge and experience. Palliative care education and clinical skill development for undergraduate student nurses is a priority to ensure graduate nurses are equipped with the knowledge and skill to deliver safe and competent care.

A scoping review guided by Arksey and O’Malley’s framework was used to identify undergraduate student nurses’ palliative care education and preparation. A comprehensive literature search of five electronic databases and grey literature were conducted from January 2002 to December 2021. The aim was to review the empirical evidence and ascertain how undergraduate student nurses’ palliative care education is organised, facilitated, delivered and evaluated. Screening was performed independently by two reviewers against eligibility criteria with meetings to discuss included papers and form a consensus. Data was extracted and related to palliative care undergraduate student nurses’ education, educational model, methodology, key findings, and recommendations. Analysed and summarised data was mapped onto the four key review questions (educational models utilised, methods used to assess effectiveness, facilitators/barriers and gaps in the literature).

34 papers met the criteria for this review. The review highlights that undergraduate nursing palliative care education is more evident in high income countries. Limited and diverse published research existing in low- and middle-income countries. Educational models utilised were theoretical and experiential learning and educational process, early integration and multiple learning methods which were highlighted as facilitating factors. However, crowded curricula, lack of palliative care clinical placement expertise, difficulty providing clinical placement, timing and delivery of palliative care and difficulty responding to simulated environments (manikins) were perceived barriers. Nevertheless, palliative care education can increase knowledge, positive attitude, self-confidence and adequate preparation of undergraduate student nurses.

This review highlights that there is limited research regarding the timing and delivery of palliative care principles and practice in undergraduate student nurse education. Early integration of palliative care education impacts upon students perceived preparedness for practice and positively influences their attitudes to palliative care provision.

Internationally, nurse education has and continues to experience radical change in response to societal demands and professional requirements and standards. The move from medical task-oriented care to individual person and family-centred care at all stages of the lifespan is reflected in the education models that underpin the art and science of the nursing profession [ 1 ]. Focusing on palliative care is an essential part of nursing education and it is important for undergraduate student nurse to gain knowledge on palliative care to improve the overall quality of healthcare [ 2 ]. The need for palliative care education has been well documented by the World Health Organisation [ 3 ] and supported by the International Council of Nurses [ 4 ]. This need highlights that we require undergraduate student nurses to be appropriately educated to have the necessary knowledge, skills and attitudes to be able to provide palliative care across all healthcare settings upon graduation. Palliative care encompasses:

“ the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end-of-life. It aims to improve the quality of life of patients, their families and their caregivers” [ 5 ]

The elimination of serious health-related suffering includes the various health conditions or severe illness that are most likely to generate a need for palliative care. Health-related suffering is considered serious when it compromises physical, social, spiritual, and/or emotional functioning, and when it cannot be relieved with professional intervention. The goal of palliative care is to prevent and relieve suffering, and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies [ 5 ]. The alleviation of suffering is an essential function of nursing [ 6 ] and caring for a patient that requires palliative care and meeting the family’s needs is challenging without appropriate knowledge [ 7 ]. Educational and clinical training requirements for undergraduate student nurses in palliative care is a phenomenon that must be considered globally. A limited but growing number of schools of nursing programmes include palliative care content in their undergraduate nursing curricula [ 8 , 9 ]. In addition, consensus conferences and position statements have been developed to outline and define the attitudes, knowledge and skills involved in palliative care [ 8 , 9 ].

While in 1967 Cicely Saunders [ 10 ] made a seminal contribution to palliative care philosophy and practice there has been a slow gradual growth and development of palliative care education. Before the 1990s, the palliative care educational needs of nurses were often overlooked in traditional nursing education settings [ 6 ]. Post 2002, there has been a great focus and emphasis for the need of palliative care education within undergraduate nursing programs. This focus and development can be linked to the priority and definition given to palliative care by the WHO [ 11 ]. Following the WHO definition in 2002 many palliative care programmes have been integrated in nursing curricula in the Western world. Palliative care educational programs that have been described typically consist of multisession training programs that incorporate attitudinal discussions and provide core knowledge and skills practice. According to the WHO policy on palliative care education, it is expected that palliative care education would be embedded in all nursing programs, but this remains unrealised in some schools of nursing [ 9 ]. Teaching palliative care within undergraduate student nurse education is seen to improve holistic, compassionate, individualised person and family-centred care [ 1 ]. Therefore, there is a need to investigate how palliative care education is embedded in undergraduate nursing curriculum, what is being taught, how it is delivered, and how undergraduate student nurses are prepared for clinical practice. Furthermore, as compassionate, competent and holistic care are at the core of nursing, knowledge of palliative care concepts is a fundamental expectation of graduating nursing students [ 12 ]. The shared theory of palliative care [ 13 ] suggests that to be competent in providing palliative care one requires sufficient knowledge and as competence influences performed interventions this translates to patient outcomes. This relationships between knowledge, competence, and patient outcomes provide a clear rationale to address the aspect of undergraduate nurses’ palliative care education. While reviews have been conducted within undergraduate nurse education, they have focused on educational interventions [ 14 ], effects of simulation [ 15 ], modes of delivery/teaching strategies [ 16 ] and death education [ 17 ]. In addition, this work was pre-1994 [ 17 ] and between 1984–2012 [ 16 ], 2000–2013 [ 14 ] and 2011–2016 [ 15 ]. Thus, there is a need to map the literature to identify undergraduate student nurses’ palliative care education and preparation for their practice as a registered nurse. This paper addressed this need through reviewing the literature from 2002 to 2021 representing the 20 years since the WHO 2002 definition of palliative care.

Due to the broad nature of palliative care and nursing education, a scoping review methodology was employed. This allowed for the presentation of a broad synthesis and mapping of the available evidence which is not limited by study quality or design [ 18 ]. This was an interactive process where each step was returned to and advanced during the process [ 19 ]. Consequently, utilising a scoping review assisted in identifying the current body of knowledge and existing gaps in the literature [ 20 ]. Through the systematic and transparent synthesis of the evidence, a rigorous map of the findings is presented in order to highlight the extent and nature of the literature, identify gaps and make recommendations [ 21 , 22 ]. The Arksey and O’Malley [ 18 ] framework was adopted for this review and the authors incorporated recent scoping review methods updates [ 21 – 23 ].

The framework utilises a five-step process:

identifying the research question,
identifying relevant studies,
study selection,
plotting the data, and
arranging, summarising and communicating the outcomes

The aim of this scoping review is to scope and map the literature to identify undergraduate student nurses’ palliative care education and preparation for practice.

Identification of research question

Step one of Arksey and O’Malley’s [ 18 ] framework and to meet the aim of this review, the focus is on the following questions:

What educational models are utilised within palliative care undergraduate student nurse education?

What methods have been used to assess effectiveness of palliative care undergraduate student nurse education.

What facilitators or barriers have been reported relating to the success/failure of the models of palliative care undergraduate student nurse education?

What gaps in the literature exist on preparation within palliative care undergraduate student nurse education?

Identification of relevant studies.

In step two of Arksey and O’Malley’s [ 18 ] framework to capture the broad scope of palliative care literature, a broad range of keywords and MeSH terms were used within the search [ 18 ]. The search strings were developed and agreed by the review team (AD/RR/OD). A search strategy ( Table 1 ) and inclusion criteria guided the review, and the search was conducted across five databases MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Academic Search Complete, PsycINFO and Cochrane Library. An additional search was conducted for grey literature (International Clinical Trials Registry Platform Search Portal) across nursing and palliative care websites. The search was conducted from the 01-01-2002 to the 10-12-2021. The search words were used in ‘title’ and ‘abstract’ searches utilising Boolean operators ‘OR’ and search strings were finally combined using Boolean operators ‘AND’. All citations were exported to Endnote Library 2021 (Clarivate Analytics, Pennsylvania, USA) for duplicates to be identified and removed (AD/OD) and exported to Rayyan (Qatar Computing Research Institute) for screening and voting to occur (AD/OD).

	Search terms
S1	Nurs* OR education OR under-graduate OR undergraduate OR under graduate OR pre-registration OR bachelor OR diploma OR preregistration OR pre-registration OR pre license OR baccalaureate OR (MM “Nursing+”) OR (MM “Students, Nursing”)
S2	palliative care OR terminal OR life limiting OT life-limiting OR life threatening OR dying OR (MM “Palliative Care”)
S3	program* OR programme* OR education OR prepar* OR train* OR teach* OR (MM “Education+”) OR (MM “Education, Nursing+”)
S4	S1 + S2+ S3

Study selection

For the third step of Arksey and O’Malley’s [ 18 ] framework papers were screened in Rayyan independently by two reviewers to identify papers that meet the selection criteria ( Table 2 ). Then, the full texts of the remaining studies were retrieved and screened against the selection criteria. Papers that met the selection criteria were included in the review.

Inclusion Criteria	Exclusion Criteria
Published between 01-01-2002 and 09-12-2021. This is to accommodate palliative care definition by WHO, 2002.	Papers published outside the search timeframe.
English language	Languages other than English.
Undergraduate palliative care education delivered by higher education institutes.	Continuing professional education modules or postgraduate programme/s or in-service training or hospital training programme/s
Papers with mixed samples but possible to extract data pertaining to undergraduate nursing education.	Papers where it is not possible to extract data pertaining to undergraduate nursing education.
All study types and grey literature.

Mapping/plotting of data

The fourth step of Arksey and O’Malley’s [ 18 ] framework involved mapped the existing literature in terms of nature, characteristics and source of evidence [ 24 ]. In accordance with Arksey and O’Malley’s [ 18 ] process, this stage involved extracting summaries from each paper in a data extraction table ( Table 3 ). The data extracted from each paper pertained to the author, year, title, country, aim/focus of the paper, educational model, methodology, key findings and recommendations for undergraduate nursing palliative care education and practice. The extracted data supported the mapping of data onto the review questions and to meet the aim of the review.

Author(s) Year Title Country	Aim/Focus	Educational model	Methodology	Findings	Recommendations
[ ] Alt-Gehrman, (2017) Education provided for nursing students about end-of-life care. United States of America.	To determine what is provided to undergraduate nursing students regarding EOL.	Conceptual framework not evident. Year of students’ program: Undergraduate nurses. Facilitation not evident. Delivery by lecture, simulation and experiential methods.	Literature review. 2000 to 2017 14 papers Themes generated.	Multiple methods of education delivery have shown to increase nursing students’ knowledge about EOL care, and a positive attitude can affect the care delivered at EOL.	Recommendation for education and practice not evident.
[ ] Bassah et al., (2014). A Modified systematic review of research evidence about education for pre-registration nurses in palliative care. United Kingdom.	To examine educational approaches applied to pre-registration palliative care nursing education and their effectiveness.	Conceptual framework, year of students’ program and facilitation not evident. Both didactic and experiential educational strategies either as a discrete course or embedded in other specialty nursing courses.	Modified Systematic review. January 2000 to December 2013. 17 papers. Method of analysis not evident.	Lack of competence and confidence in providing palliative care.	There is need for pre-registration student nurses to be educated in palliative care, prior to entering the professional practice. Suggestions are made for the development of preregistration PC education in resource poor countries.
[ ] Birkholz et al., (2004) Students’ self-identified learning needs: a case study of baccalaureate students designing their own death and dying course curriculum. United States of America.	The paper describes a class of honours nursing students who identified their own learning needs and developed a course on death and dying.	Conceptual framework not evident. Year of students’ program: Three-year course baccalaureate students. Facilitation by guests’ lecturers, religious leader, ethicist, social worker, counsellor, psychotherapist, morticians, nurses, physicians, lawyer, caregivers, and classmate from a different culture. Delivered through classroom didactic and experiential approaches.	Ethic approval not evident. Qualitative study Non-probability sampling. 17 female junior and senior baccalaureate students. Data collected through class summary.	Students gained more knowledge in helping patients, families, and themselves in end-of-life care related issues.	Nursing students recognised the need for adequate EOL education that is both didactic and experiential.
[ ] Carmack and Kemery, (2018). Teaching methodologies for end-of-life in undergraduate nursing students. United States of America.	To explore current strategies, compare findings to that of previously published results, and determine whether progress has been made in the interim.	Conceptual framework, year of students’ program and facilitation not evident. Delivery strategy face-to-face instruction, clinical or practicum experience, online teaching, simulation and interprofessional education.	Literature review. January 2011 to May 2016. 22 papers.	Preparedness and implication on practice not evident.	More attention should be paid to clinical and online education outcomes. Future research into the efficacy of EOL teaching strategies should include an intervention, rather than rely on survey. Future studies should focus on a single intervention or include enough for comparison or intervention groups. Use of standardized tools in future research.
[ ] D’Antonio, (2017) End-of-life nursing education. Past and present. United States of America.	Focus on the history, development, and teaching methods of EOL care and offers recommendations for future education.	Conceptual framework and year of students’ program not evident. Facilitation is by nurse educators and expert guests’ lecturers. Delivery methods include lecture, seminar/ small group format, role-play, videos case studies, and visits to local hospices and/or terminal patient visits and online format.	Papers discusses the historical development of EOL teaching model.	Preparedness not evident. However, implication on practice: Debriefing and analysis of the dynamics occurring during the scenario are an important component for students when simulation is used.	Education in EOL care should include nurse externships, tailor-made orientations, and thoughtful selection of expert mentors and preceptors.
[ ] Davis et al., (2021). Integrating the ELNEC undergraduate curriculum into nursing education: lesson learned. United States of America.	To describe the benefits to schools of nursing of adopting the ELNEC UG curriculum, discuss the barriers faculty have faced regarding adoption, and offer schools strategies to help them overcome such barriers.	Conceptual framework, year of students’ program and facilitation not evident. Paper summarized some educators experience of using online platform interactive technology and designed to support faculty with and without palliative care expertise.	Ethical approval not evident. Descriptive design. Documentary review. Findings from respective schools was by formative evaluation processes.	Integration of undergraduate ELNEC throughout nursing education had enhanced undergraduate student nurses’ comfort in providing end-of-life care as new nurses. Early integration impacted student perceived preparedness and attitudes positively.	Comprehensive palliative care education must include not only didactic components, but practice-based experiences as well. Best practice to integrate PC course is to engage key faculty stakeholders, offer palliative curriculum as an independent course, utilise clinical preceptors and clinical experiences to include debriefing of the content in the clinical conference time.
[ ] Davis et al., (2020) Development of a new undergraduate palliative care knowledge measure. United States of America.	To describe development and psychometric evaluation of a new palliative care measure.	The Shared Theory of Palliative Care guided the theoretical foundation. Year of students’ program: junior and senior pre-licensure baccalaureate students. Facilitation by palliative care educators. Delivery not evident.	Ethical approval not evident. Exploratory descriptive design. The Undergraduate Nursing Palliative Care Knowledge Survey (UNPCKS) used to assess primary palliative care knowledge of students. Data analysed by exploratory factor analysis. Intervention: shared Theory.	Preparedness and implication on practice not evident.	To address desirability and acceptability of adopting UNPCKS, future research should examine the burden of time imposed on both faculties to administer as well as for students who already experience much testing.
[ ] Downing, (2006) Palliative care education in Uganda. Uganda.	Aim not evident. Focus is on palliative care practice and institutions providing palliative care education for healthcare teams in Uganda.	Conceptual framework N/A. Year of students’ program, facilitation and delivery not evident.	Discussion paper.	Preparedness and impact on practice not evident but discussion stated lack of knowledge about palliative care amongst nurses.	Education and care go hand-in-hand with training in palliative care is one way to break down some of the barriers of lack of knowledge.
[ ] Eltaybani, (2021) Palliative and end-of-life care education in prelicensure nursing curricula: a national survey in an Arab country. Egypt.	To identify what PEOL care education is delivered to undergraduate nurses in Egypt and the teaching strategies used to deliver this education. To assess the feasibility of using online surveys in nursing research in Egypt.	Conceptual framework and year of students’ program not evident. Facilitation by nurse educators. Delivered by lecture pedagogy teaching strategy, clinical field practice, and group discussion respectively.	Ethical approval by administrative authorities and Research Ethics Committee of the Graduate School of Medicine, University of Tokyo, Japan. Cross-sectional survey. Random sampling. 88 nurse educators in the faculties of nursing. Data collected using online survey.	Preparedness not evident. Students can be exposed to meaningful learning opportunities in medical-surgical and intensive care units in local hospitals and health centres that provide care to patients with serious, life-threatening illnesses.	Evidence-based program is recommended to guide the development of PEOL care discrete and sufficient course contents for nursing students. Utilization of simulation using high-fidelity mannequins is also perceived as an effective teaching strategy. Training nursing educators) on maximizing the use of high-fidelity simulation to teach PEOL care may help to overcome the scarcity of specialized PC institutions across the country.
[ ] Ferrell, (2018) An Innovative end-of-life nursing education consortium curriculum that prepares nursing students to provide primary palliative care. United States of America.	The paper describes the development and implementation of an innovative online nursing curriculum that prepares students with essential primary palliative nursing knowledge and skills.	Conceptual framework not evident. Year of students’ program: Pre-licensure students. Facilitation by palliative care nurse leaders. Delivered through case studies with critical-thinking reflection, brief videos demonstrating key palliative nursing skills, and 2 to 3 nursing licensure examination style questions woven throughout. Students are required to complete a 10-question quiz with nursing licensure type items.	Discussion paper.	Students have primary palliative care contents in their curricula and felt more prepared to care for patients and families, especially at the EOL.	Faculties are encouraged to see it as a privilege to educate future nurses in palliative care so they can provide high quality primary palliative care.
[ ] Ferrell et al., (2016) CARES: AACN’s new competencies and recommendations for educating undergraduate nursing students to improve palliative care. United States of America.	An historical manuscript and CARES document that focuses on content areas that should be included in palliative nursing education.	Conceptual framework, year of students’ program and facilitation and delivery not evident.	Historical documentary review.	Student preparedness and implication on practice not evident.	PC nurse education content should be integrated into a fundamentals / introduction to nursing course in which topics such as pain, comfort, communication, and care of the imminently dying patient are covered.
[ ] Glover et al., (2017) An experiential learning approach to primary palliative care nursing education: the comfort shawl project United States of America.	The paper focus explains students’ participation in numerous experiential learning activities during the Comfort Shawl.	Conceptual framework and year of students’ program not evident. Facilitation: teacher led. Delivery: experiential activities, including touring the local hospice care centre and retirement community.	Discussion paper.	Preparedness and impact on practice not evident.	Clinical experiences in palliative care are vital to supplement didactic learning.
[ ] Goode et al., (2019) Person-centred end-of-life curriculum design in adult pre-registration undergraduate nurse education: a three-year longitudinal evaluation study. United Kingdom.	To explore student evaluation of end-of-life care learning within a three-year undergraduate adult nursing degree programme.	Conceptual framework Scaffolded approach. Year of students’ program: Third-year nurses. Facilitation not evident. Delivery is by pedagogical approaches to encourage problem-based learning, facilitating role play and exploration of audio-visual resources.	University ethics committee approval. A longitudinal quantitative approach containing open and closed questions. 336 Third-year students. Intervention: scaffolded approach.	Students identified growth in their practice, confidence and preparedness to deliver person-centred care in end-of-life-care. However, they requested for more use of scenarios, communication and practical application in year one.	Ensure structured and scaffolded learning across programmes of study. Learning experience impacts on both professional practice and personal life requires appropriate consideration during the planning of teaching students. Involvement of voluntary and independent sectors, primary and secondary social care provider in planning and delivery of EOL education.
[ ] Heath et al., (2021) Preparing nurses for palliative and end of life care: a survey of New Zealand nursing schools. New Zealand.	To explore teaching content, organisation, delivery, assessment and clinical learning opportunities in palliative and end-of-life care in undergraduate nurse education in New Zealand.	Conceptual framework not evident. Year of students’ program not evident. Facilitation by academic nurses with contributions from other professionals. Delivery by lectures, tutorials Clinical placements (generally of 1 week or more), case-based teaching, simulation and patient presentation / interview.	Ethical approval not evident. Quantitative descriptive cross-sectional study. 13 academic leads out of 18 educational institutes participated. Quantitative–online cross-sectional survey.	Palliative care is included in undergraduate teaching.	Need to address the time demands within curriculum to meet all criteria. Lack of clinical placements and inconsistencies needs to be addressed. Specific palliative care assessment should be incorporated into programmes.
[ ] Henoch et al., (2017) Undergraduate nursing students’ attitudes and preparedness towards caring for dying persons: a longitudinal study. United Kingdom.	To describe the development of nursing students’ attitudes toward caring for dying patients and their perceived preparedness to perform end-of-life care.	Conceptual framework not evident. Year of students’ program: Third-year nursing students. Facilitation not evident. Delivery by simulation.	Ethics approved by the Regional Ethics Committee, and the head of nursing program of each institution. A longitudinal study of 117 nursing students participated and completed the Frommelt Attitude Toward Care of the Dying Scale (FATCOD).	Simulation was said to adequately prepared student nurses for EOL care. Structured palliative care course influenced students’ ability to be clinically competent.	There is a need for the palliative care component to be at least five weeks in length for it to have an impact. Communication reflection, and interactive exercises are recommended to help student nurses more prepared for the care of the dying patients.
[ ] Hjelmfor et al., (2016). Simulation to teach nursing students about end-of-life. United States of America.	To increase the knowledge about end-of-life care simulation in nursing education by describing and evaluating the delivery of simulation when teaching third-year nursing students about end-of-life care.	Conceptual framework not evident Year of students’ program: 3 year nursing students. Facilitation is by nurse tutors. Delivery by simulation.	Ethics not evident. Students gave verbal consent. Ethnography observation of 60 students in eight group sessions. Data collection by audio and video recorded.	Majority of the students expressed the usefulness, realistic and a good learning opportunity to handle challenging communication from patients and family members.	There is need for the faculty to bring in tutors who are nurses with a vaster experience and competence in palliative care to take part in the simulation sessions and the debriefings, to bring a greater knowledge of palliative care into nurse education.
[ ] Jacono et al., (2011). Developing Palliative Care competencies for the education of entry level baccalaureate prepared Canadian nurses. Canada.	To contribute to knowledge about generating national consensus-based competencies, and to disseminate the competencies.	Conceptual framework, year of students’ program, facilitation and delivery not evident.	Ethics N/A Multiple consultation of symposium and consensus building process. Sample: directors from 8 faculties of Canadian Schools of nursing, palliative care, physicians and social worker representatives. Consultation survey via telephone and email.	Preparedness and impact on practice not evident. Barrier identified include an already crowded program. Lack of PEOLC expertise among faculties. Difficulty providing appropriate clinical placements.	Recommendation for education and practice not evident.
[ ] Jianga et al., (2019) Attitude and knowledge of undergraduate nursing students about palliative care: An analysis of influencing factors. China.	To investigate undergraduate nursing students’ knowledge about and attitudes toward palliative care and analyse their influencing factors.	Conceptual framework, year of students’ program, facilitation and delivery not evident.	Ethics committees of the Universities approval. A descriptive research method that used cross-sectional survey. A stratified random sampling method used to select 1200 undergraduate nursing students from four medical universities.	Knowledge about palliative care among Chinese nursing students was insufficient.	The study suggested that additional PC training and medical universities should set up an individual palliative and EOL care curriculum for nursing students as early as possible. It was recommended that religious beliefs should be honoured and integrated.
[ ] Johnson et al., (2009) Nursing the dying: a descriptive survey of Australian undergraduate nursing curricula. Australia.	To gain some insights into the relative adequacy of Australian undergraduate nursing programmes to prepare nurses to deliver care to the dying patient.	Conceptual framework N/A Year of students’ program not evident. Facilitation by registered nurses from the palliative care clinical setting and delivery is by didactic lecture format, experiential strategies and formal lecture.	The University Ethics Committee approval. A descriptive survey study. 36 Deans of nursing and midwifery schools. Survey through email.	Preparedness and impact on practice not evident.	Behavioural aspects of caring for the dying, and urgent attention of relevant theoretical content in sufficient depth combined with teaching strategies that promote critical reflection in undergraduate nursing programmes is essential to be embedded in the curricula.
[ ] Karkada et al., (2011) Awareness of palliative care among diploma nursing students. India.	To identify the level of knowledge and attitude of nursing students towards palliative care who are future caretakers of patients, which helps to make recommendations in incorporating palliative care concepts in the nursing curriculum	Conceptual framework not evident. Year of students’ program: Third year diploma nursing students. Facilitation and delivery not evident.	Administrative permission obtained from the principals of selected schools. A correlative survey. Cluster sampling method. Verbal consent obtained from the study participants. 83 third-year diploma nursing students. A cross-sectional correlative structured and validated questionnaire survey and cluster technique.	Majority (79.5%) of third year nursing students surveyed had poor knowledge on palliative care but they had a favourable attitude towards palliative care. Preparedness and impact on practice not evident.	PC aspects such as patient-centred communication, ethical issues, decision making at the EOL, whole person care and interdisciplinary work are important and can have a lasting impact on future health practice. To be a competent student nurses need to be prepared to take care of the terminally ill patient at the grassroot level through home visit.
[ ] Kirkpatrick et al., (2017) Palliative Care Simulation in undergraduate nursing education: an integrative review. United States of America.	To explore the effects of simulation-based learning experience on nursing students’ preparation to delivery palliative care.	Conceptual framework, year of students’ program and facilitation not evident. Delivery via simulation (high-fidelity simulators/role play/actors). Roles assigned (active, observer etc). Observer checklist used for debriefing sessions.	Integrative review. 2011 to 2016. 19 papers. Emerging themes.	The use of live actors and role play were effective in increasing student knowledge and self-efficacy. Students can find it difficult responding to a manikin and are more engaged when a person enacts the patient role. Presence of family members and multicultural and spiritual traits enhanced the realism of the simulation. Simulations increased confidence, communication skills, reassurance, understanding of the complexity and priorities of palliative care principles.	Learning more realistic when use standardized patients. Debriefing affords the opportunity for reflection, feedback and learning. Theoretical frameworks to underpin palliative care nursing education required.
[ ] Knopp de Carvalho et al., (2017) Educational process in palliative care and the thought reform. Brazil.	To know the contributions of the educational process in Palliative Care during the undergraduate level for the professional action of nurses in the care of patients at the end-of-life.	Morin’s Theory of Complexity. Hologrammatic principle of complex thinking. Year of students’ program and facilitation not evident. Delivery by reflection on issues.	Ethics approval by Research Ethics Committee. A qualitative approach. Purposive sampling. Data collected from 13 participants (7 newly trained nurses and 6 nurse tutors) through a semi-structured interview.	Educational process in a PC education has contributed to preparing students for the care of terminally ill patients.	It is critical that education is oriented toward building awareness that all PC components are important and need to be involved in care. It is important to use relevant therapies to relieve their signs and symptoms.
[ ] Li et al., (2019) Undergraduate nursing students’ perception of end-of-life care education placement in the nursing curriculum. China.	Aim not evident. Focus is on strategy to evaluate students’ opinions on the placement of end-of-life care education within the curriculum and their experience of having received ELNEC training previously throughout their program.	Conceptual framework not evident. Year of students’ program: Bachelor of Nursing Science students. Facilitation not evident. Delivery by film observation simulation experiences, companion programs, specific assigned readings, role playing, and journaling/writing for reflection.	Ethics approval of the institutional review board. Mixed method teaching evaluation study. A 12-question survey used mixed methods to evaluate 37 students’ opinions.	Preparedness and implication on practice not evident. However, study revealed that students’ attitude toward death and dying can be improved through education.	EOL education at the BSN level should be informed by students’ previous knowledge, preparation, and clinical practice exposure. EOL care contents required focused curriculum planning. A constructivist educational model and reflective teaching methods were recommended for earlier-stage students. Incorporating simulation into the nursing curriculum is better than classroom instruction only.
[ ] Lippe et al., (2017) Students preparation to care for dying patients. United States of America.	To examine the differences in student outcomes regarding EOL care within and between subgroups of nursing students in a single program.	Content, Input, Process, and Product (CIPP) Model. Year of students’ program, facilitation and delivery not evident.	Study approved by the university’s institutional review board. An exploratory, descriptive, observational study design involving cross-sectional surveys. Sample: five sub-groups of nursing students in a BSN program. Intervention: Content, Input, Process and Product (CIPP).	Students experience positive changes in knowledge and attitudes regarding EOL care as they progress through the curriculum.	It was recommended that education is important to prepared nursing students to provide safe, competent, evidence-based, compassionate care that facilitates individuals experiencing a peaceful death.
[ ] Lippe and Carter (2015) End-of-life care teaching strategies in prelicensure nursing education. United States of America.	Focus on characteristics of end-of-life teaching strategies and their impact on student educational outcomes	Conceptual framework N/A. Year of students’ program: Prelicensure nursing students. Facilitation and delivery not evident.	Integrative review. Timeline not evident. 14 papers. Method of analysis not evident.	Nursing students benefit from receiving end-of-life care education in their prelicensure curriculum.	Better quality nursing research on effective teaching strategies in end-of-life care nursing education is needed to ensure that all students receive sufficient education to provide safe and effective care to dying patients.
[ ] Mason et al., (2020). A multimodality approach to learning: educating students in palliative care. United States of America.	To examine the effect of educating nursing students utilizing an interactive, multimodality palliative care class that focuses on palliative and end-of-life care.	Kolb’s Experiential Learning Theory Year of students’ program and facilitation not evident. Delivery by lectures, games, simulation, small group discussions, computerized learning modules, readings, and reflection (this includes assignments on students’ observation experience and an analysis of a palliative care case study).	Ethical approval from internal review board. Pre and post-test experimental design. Sample includes undergraduate and graduate level nursing students newly enrolled. An electronic survey via Qualtrics was used. Palliative Care Quiz for Nursing (PCQN) used quasi-experimental design to evaluate knowledge before and after the palliative care class. Intervention: Kolb experiential learning theory.	Preparedness and impact on practice not evident. However, Pre-test results demonstrated a lack of knowledge, attitude, and comfort level palliative and EOL care among the students. While post-test demonstrated improved knowledge of palliative care and symptom management strategies.	Emphasis on symptom management plus additional practicum hours through a combination of clinical and simulated experiences would help improve student comfort and competency in palliative care.
[ ] Mazanec et al., (2019) educating associate degree nursing students in primary palliative care using online elearning. United States of America.	Focuses on the development and implementation of an innovative online nursing curriculum that prepares nursing students with the essential primary palliative nursing skills needed by graduation.	Conceptual framework, year of students’ program, facilitation and delivery not evident.	Discussion paper.	Preparedness and implication on practice not evident.	Need for overall curriculum revision to accommodate the six one-hour online modules. Students should be given the opportunity to debrief about the sensitive content by integrating rich discussions into clinical conferences.
[ ] O’Connor, B. (2016) CARES: Competencies and recommendations for educating undergraduate nursing students preparing nurses to care for the seriously ill and their families. United States of America.	Aim not evident. A documentary paper that emphasises the essential statement grounded in the mandates for educating nurses in quality, safe, and interprofessional team-based care.	Conceptual framework, year of students’ program, and facilitation and delivery not evident.	Ethics N/A Documentary review. A roundtable of expert nurses and other health care professionals to stimulate scholarly dialog and recommendations on the care of patients at the end-of-life.	Preparedness and impact on practice not evident.	Embedding agreed competencies in the undergraduate curriculum, will empower future nurses to be leaders in advocating for access to quality palliative care and to compassionately promote and provide this essential care.
[ ] Pereira et al., (2021). Nursing education on palliative care across Europe: results and recommendations from the EAPC taskforce on preparation for practice in palliative care nursing across the EU based on an online-survey and country reports. Portugal.	To describe current undergraduate and postgraduate nursing education across Europe. To identify the roles that nurses with different palliative care educational levels have in palliative care. To assess the uptake of the EAPC 2004 Guide in the development of palliative care nursing in Europe.	Conceptual framework, year of students’ program, facilitation and delivery not evident.	Ethical approval from EAPC board of directors. Descriptive research involving an online survey. 135 expert nurses from 25 countries.	Preparedness and impact on practice not evident. Study is on the EAPC 2004 document on palliative care nursing education used in many countries to foster and influence the development of palliative care nursing education.	It was recommended to focus mainly on fostering the use of the EAPC 2004 guide on palliative care education and implementing policy measures to ensure recognition and certification the specialty in all European countries. Further research and policy initiatives are needed to better relate required nursing competencies with teaching contents and hours in undergraduate and postgraduate programmes.
[ ] Ramjan et al., (2010) Integrating palliative care content into a new undergraduate nursing curriculum: the University of Notre Dame, Australia—Sydney experience. Australia.	To describe how palliative care content has been embedded throughout the three-year University of Notre Dame Australia, Sydney (UNDA) undergraduate nursing degree.	Conceptual framework N/A. Year of students’ program: Three- year undergraduate nursing curriculum. Facilitation by palliative care teaching expertise. Delivered by virtual lectures, tutorial, and face-to-face clinical scenario, clinical practice units, and clinical placements, theoretical and experiential learning.	Discussion paper.	Preparedness not evident. There was limited research about the timing and teaching of palliative care content in undergraduate courses.	Palliative care undergraduate nursing learning needs are best addressed through a multifaceted approach, conducted over several weeks, with a mix of didactical methods and exploration of multiple themes which are integrated with practical experiences and then reflection.
[ ] Robinson, (2004) End-of-life education in undergraduate nursing curricula. United States of America.	To discuss the importance of including EOL content in nursing curricula.	Conceptual framework, years of students’ program, facilitation and delivery not evident.	Quantitative study. Ethics and sample N/A. Data collection: A survey conducted.	Many nursing curricula are already crowded and faculty feel ill prepared to teach EOL education.	EOL competencies be incorporated into existing nursing courses
[ ] Thrane, (2020) Online palliative and end-of-life care education for undergraduate nurses United States of America.	To describes the development and delivery of an undergraduate level online nursing elective course in palliative and end-of-life care offered through a large public university.	Conceptual framework not evident. Year of students’ program: baccalaureate students. Facilitation by instructors. Delivered by an innovative learning strategy through an asynchronous online format that uses discussion, reflective essay, assignments, difficult conversation, serious games, readings, short taped lectures, and multi-media content.	Discussion paper.	Both the instructor and the students felt that the course was a success.	To cover all concepts in modules throughout the curriculum, a standalone course like the one covering specific palliative and end-of-life content should be required in all baccalaureate nursing programs
[ ] William et al., (2021) Global Initiation of palliative nursing education to improve health crisis preparedness. United States of America.	To first provide an overview of palliative care and its importance in serious illness care. To describe how the consequences of COVID-19 require a palliative care perspective using the U.S.-based National Consensus Project (NCP) Clinical Practice Guidelines for Quality Palliative Care readily applicable to the global arena.	Conceptual framework, year of students’ program and facilitation not evident. Delivery by online curriculum or as a hard copy.	Discussion paper. Timeline, number of papers reviewed and method of analysis not evident.	Preparedness and impact on practice not evident. However, Review of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care and use of educational exemplars highlight opportunities for improving palliative nursing education in academic and clinical settings.	Provision of universal palliative care is ethically mandate for all health systems. Nurses worldwide must be equipped through education to ensure the delivery of palliative care at primary and specialty levels. Global curricular integration of palliative care is needed urgently to properly prepare nursing workforce and provide holistic, person-centred care for patients and their families throughout the continuum of care.
[ ] Wilson et al., (2011) An Examination of palliative or end-of-life care education in introductory nursing programs across Canada. Canada.	To assess, describe, and compare PEOLC education across Canadian undergraduate nursing programs.	Conceptual framework, year of study and facilitation not evident. Delivery by lectures followed by small group discussion, and case study as the teaching/learning strategies.	Ethics approval obtained from the Research Ethics Board. A descriptive/ comparative data analysis using SPSS. 35 Nursing schools/ Faculties across Canada. Survey via email.	Preparedness and implication on practice not evident. Lack of time in the curriculum was the most frequently cited followed by a lack of clinical placement or practice options and a lack of knowledgeable teachers.	Educators are encouraged to have a more in-depth understanding of the needs of dying persons and their families. Death education should be included in introductory nursing programs and it need to be more emphasized in the future.

Abbreviations : AANC–America Association of Nursing Council, ANOVA- Analysis of Variance, BSN- Bachelor of Science in Nursing, CIPP- Content, Input, Process and Product, EAPC- European Association of Palliative Care, ELNEC- End-of-Life Nursing Education Consortium, EOL- End-of-Life. FATCOD- Frommelt Attitude Towards Care of the Dying Scale, IPE- Interprofessional Education, PC- Palliative Care, PEOLC-Palliative and End-of-Life Care, PCQN- Palliative Care Quiz for Nursing, SPSS- Statistical Package for Social Sciences, STATA- Statistical Software UG-Undergraduate, UNDA- University of Notre Dame Australia, UNPCKS- Undergraduate Nursing Palliative Care Knowledge Survey.

Arranging, summarising and communicating the outcomes

The fifth and final stage of Arksey and O’Malley’s [ 18 ] framework involved summarising and communicating the findings. A total of 34 papers was generated representing 10 countries in this scoping review. The papers are summarised and communicated under the study characteristics and the four key objectives identified in step one of the review processes. To support this process the data is mapped and charted within each reported section to present a clear and succinct summary of the data.

The search of the databases and grey literature generated 18,243 results of which 18,235 originated for the five databases and 8 from grey literature searches. 7,696 duplicates were identified and removed and the remaining 10,547 papers went forward for title and abstract screening. Following title and abstract screening 10,498 papers were excluded leaving the remaining 49 papers going forward to the full-text review stage. The full text review process identified 34 papers that met the inclusion criteria and the reasons for the 15 excluded papers are reported in the PRISMA flow diagram [ 58 ] ( Fig 1 ). This review is reported in line with the Preferred Reporting Items for Systematic Reviews and Meta-analysis for Scoping Reviews (PRISMA-ScR) ( S1 Checklist ) [ 59 ].

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Object name is pone.0286678.g001.jpg

From: Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021;372:n71. Doi: 10.1136/bmj.n71. For more information, visit: http://www.prisma-statement.org/ .

Characteristics of the studies

The screening process generated thirty-four papers that met the inclusion criteria from ten countries and more than a half 56% (n = 19) were from the USA. Papers in this review comprised of fourteen secondary data papers, thirteen quantitative papers, four qualitative papers, and three mixed-methods papers ( Table 4 ). The quantitative designs varied, using descriptive, observation, exploration and quasi-experimental designs. Three of the thirteen quantitative papers utilised standardised survey tools: Undergraduate Nursing Palliative Care Knowledge Survey (UNPCKS) [ 30 ], Frommelt Attitude Toward Care of the Dying Scale (FATCOD) [ 38 ] and Palliative Care Quiz for Nursing (PCQN) [ 49 ]. The four qualitative papers utilised qualitative descriptive design [ 26 ], ethnography observation [ 39 ], qualitative approach and semi-structured interview [ 45 ] and consensus-based design [ 51 ]. One of the three mixed-method papers utilised a longitudinal quantitative approach and thematic analysis to analyse qualitative data in response to open ended questions [ 36 ]. The second utilised a consultation survey via telephone and email, and a consensus-based comment and national approval process for data analysis [ 40 ]. The third paper used a 12-question survey that utilised mixed-method approach to evaluate students [ 46 ]. In addition, within the discussion/opinion papers one utilised reflective essay and assignment [ 46 , 49 , 55 ]. One utilised 2 to 3 nursing licensure examination interwoven throughout the course and a 10-question quiz with nursing licensure type items [ 33 ]. A third utilised an observer checklist in debriefing sessions [ 14 ] to evaluate learning outcome.

Country	n =	Paper
United States of America	n = 19	[ – , , , , – , ].
United Kingdom	n = 4	[ , , , ].
Canada	n = 2	[ , ].
Australia	n = 2	[ , ].
China	n = 2	[ , ].
New Zealand	n = 1	[ ].
Egypt	n = 1	[ ].
India	n = 1	[ ].
Brazil	n = 1	[ ].
Uganda	n = 1	[ ].

Quantitative	n = 13	[ , , , , , – , , , , , ].
Qualitative	n = 4	[ , , , ].
Mixed-method	n = 3	[ , , ].
Discussion/opinion	n = 14	[ , , , , , – , , , , , , ].

The sample size of the quantitative papers in this review consists of the undergraduate student nurses, nursing schools/faculties, nurse educators/experts, academic leads and deans of nursing schools. Surveys included 15 national nursing faculties [ 29 ], 35 nursing schools/faculties [ 56 ] 88 nurse educators and 135 expert nurses [ 32 ], 13 academic leads and 36 deans of nursing schools [ 37 , 42 ]. However, other papers did not reference the number of respondents [ 30 , 48 , 49 , 53 ]. Student sample sizes within the quantitative papers spanned from 83 third-year diploma nursing students [ 43 ] to 117 third-year nursing students [ 38 ] and 1,200 undergraduate nursing students [ 28 ]. Within qualitative papers sample sizes spanning from 13 participants (7 newly trained nurses and 6 nurse tutors) [ 45 ] to 17 female junior and senior baccalaureate students [ 26 ] and 60 third-year nursing students in eight group sessions [ 39 ]. The mixed-methods papers had sample sizes of 336 year-three student nurses at one university [ 36 ], 37 bachelor of nursing students [ 46 ] and 8 faculties of Canadian schools of nursing [ 40 ]. The samples represented in this review were characterised by a wide range of ages, nursing programs and ethnicities with degree program students as the majority in representation.

Four educational models were identified in this review and the conceptual or theoretical framework underpinning the palliative care education approach was evident in 5 papers and students’ year of study evident in 12 papers ( Table 5 ). Within the papers reviewed, the facilitators delivering the palliative care education were evident in 11 papers and educational delivery strategies in 22 papers ( Table 6 ). While a broad range of educational facilitators are identified it is recommended that palliative care education should be facilitated by experts [ 25 , 32 , 39 , 57 ] and that experts are needed for high-fidelity simulation to enhance knowledge in palliative care and mentor students [ 32 , 44 ].

Education model	n =	Paper
Palliative care (PC) education.	N = 16	[ , , , , , , , – , – , , ].
End-of-Life Care (EOLC) education.	N = 11	[ , – , , , , , , , ].
Death and dying education.	N = 4	[ , , , ].
Palliative and End-of-Life care (PEOLC) education.	N = 3	[ , , ].

Share Theory of Palliative Care	n = 1	[ ].
Kolb Experiential Learning Theory	n = 1	[ ].
Scaffolded approach	n = 1	[ ].
Morin’s Theory of Complexity Hologrammatic Principle of Complex Thinking	n = 1	[ ].
Content, Input, Process, and Product (CIPP) Model	n = 1	[ ].

Third-year nursing students	n = 3	[ , , ].
Junior and senior baccalaureate students. Baccalaureate students. Third year baccalaureate students	n = 3	[ , , ].
Pre-licensure nursing students	n = 2	[ , ].
Bachelor of nursing students undergraduate nurses	n = 2	[ , ].
Third-year diploma nursing students	n = 1	[ ].


Nurse educators/tutors	n = 3	[ , , ].
Academic nurses with contributions from other professionals	n = 1	[ ].
Clinical instructors	n = 1	[ ].
Palliative care nurse leaders	n = 1	[ ].
Teacher led	n = 1	[ ].
Nurse educators and expert guess lecturers	n = 1	[ ].
Palliative care teaching expertise	n = 1	[ ].
Registered nurses from the palliative care clinical setting	n = 1	[ ].
Guests’ lecturers, religious leader, ethicist, social worker, counsellor, psychotherapist, morticians, nurses, physicians, lawyer, caregivers, and classmate from a different culture	n = 1	[ ].

Both didactic and experiential	n = 3	[ , , ].
Simulation	n = 2	[ , ].
Online platform interactive technology	n = 1	[ ].
Lecture pedagogy teaching strategy, clinical field practice, and group discussion.	N = 1	[ ].
Lectures, tutorials clinical placements, case-based teaching, simulation and patient presentation/interview.	N = 1	[ ].
Online curriculum or as a hard copy	n = 1	[ ].
Lectures, games, simulation, small group discussions, computerized learning modules, readings, and reflection	n = 1	[ ].
An asynchronous online format that uses discussion, reflective essay, assignments, difficult conversation, serious games, readings, short taped lectures, and multi-media content	n = 1	[ ].
Pedagogical approaches to encourage problem-based learning, facilitating role play and exploration of audio-visual resources (simulation)	n = 1	[ ].
Case studies with critical-thinking reflection, brief videos demonstrating key palliative nursing skills.	N = 1	[ ].
Film observation simulation experiences, companion programs, specific assigned readings, role playing, and journaling/writing for reflection.	N = 1	[ ].
Face-to-face instruction, clinical or practicum experience online teaching, and simulation	n = 1	[ ].
Lecture, simulation and experiential	n = 1	[ ].
Lecture, seminar/ small group format, role-play, videos case studies, and visits to local hospices and/or terminal patient visits and online format (simulation).	N = 1	[ ].
Experiential activities, including touring the local hospice care centre and retirement community	n = 1	[ ].
Simulation (high-fidelity simulators/role play/actors).	N = 1	[ ].
Lectures followed by small group discussion, and case study	n = 1	[ ].
Lectures, tutorial, and face-to-face clinical scenario, clinical practice units, and clinical placements, theoretical and experiential learning.	N = 1	[ ].
Reflection on issues	n = 1	[ ].

Only 4 papers in this review highlights the evaluation of learning outcomes. The first paper utilised 2 to 3 nursing licensure examination interwoven throughout the course and a 10-question quiz with nursing licensure type items [ 33 ]. The second paper utilised an observer checklist within debriefing sessions [ 14 ]. The third paper utilised an assignment on student observation experience and case study analysis of a palliative care case study with pre and post-test [ 49 ]. The fourth paper utilised a reflective essay and assignment [ 55 ]. Within this review, palliative care education was deemed effective if it resulted in positive learning outcomes for students and 15 papers highlight effectiveness which was identified through knowledge gained, self-confidence and adequate preparedness ( Table 7 ).


Highlight opportunities for improving knowledge through palliative nursing education in academic and clinical settings	n = 1	[ ].
Post-test demonstrated improved knowledge of palliative care and symptom management strategies.	N = 1	[ ].
Both the instructor and the students felt that the course improved knowledge and was a success	n = 1	[ ].
Multiple methods of education delivery have shown to increase nursing students’ knowledge and positive attitude about EOL care	n = 1	[ ].
The use of live actors and role play were effective in increasing student knowledge and self-efficacy	n = 1	[ ].
Students experience positive changes in knowledge and attitudes regarding EOL care	n = 1	[ ].
Nursing students benefit from receiving end-of-life care education in their prelicensure curriculum	n = 1	[ ].
Majority of the students expressed the usefulness, realistic and a good learning opportunity to handle challenging communication from patients and family members.	N = 1	[ ].
Students gained more knowledge in helping patients, families, and themselves in end-of-life care related issues	n = 1	[ ].

Early integration impacted student perceived preparedness and attitudes positively	n = 1	[ ].
EAPC 2004 document on palliative care nursing education used in many countries to foster and influence the development and preparedness of students for palliative care nursing education	n = 1	[ ].
Students identified growth in their practice, confidence and preparedness to deliver person-centred care in end-of-life-care	n = 1	[ ].
Students have primary palliative care contents in their curricula and they felt more prepared to care for patients and families, especially at the EOL	n = 1	[ ].
Simulation was said to adequately prepared student nurses for EOL care. Structured palliative care course influenced students’ ability to be clinically competent	n = 1	[ ].
Educational process in a PC education has contributed to preparing students for the care of terminally ill patients	n = 1	[ ].

What facilitators/barriers have been reported relating to the success/failures of the models of palliative care undergraduate student nurse education?

Within this review nine of thirty-four papers reported a wide range of facilitators that contributed to the success of the models of palliative care undergraduate student nurse education. The educational process was highlighted as a means of preparing students for care of the terminally ill [ 45 ]. While early integration was highlighted as enhancing and impacting undergraduate student nurses’ comfort and perceived preparedness [ 29 ]. Multiple learning methods have been shown to increase knowledge and positive attitude of undergraduate student nurses towards the provision of palliative care [ 54 ] and clinical exposure to meaningful learning opportunities with patients experiencing serious life-threatening illnesses facilitates learning and enables change of attitudes [ 32 ]. A structured palliative care course [ 38 ] and the use of palliative care documents and guidelines to facilitate the success of palliative care education within the undergraduate student nurses’ program were seen to influence students’ ability to be clinically competent [ 52 , 56 ]. In the last decade, the use of simulation and analysis of scenarios has assisted to prepare students [ 38 ] and a key element within the simulation was debriefing which allowed for analysis of the dynamics occurring during the scenario [ 25 ].

Within this review, several factors acted as barriers to palliative care education were evident specifically the issue of a crowded curricula and the lack of time in the curriculum [ 40 , 53 , 57 ]. This lack of time and crowded curriculum is compounded by the lack of palliative care expertise [ 40 ] and the difficulty in providing clinical placement [ 57 ]. This results in educators and students feeling ill prepared to deliver palliative care education or feel adequately prepared for future practice [ 40 , 54 ]. Furthermore, there is limited research about the timing and teaching of palliative care content in undergraduate course [ 44 ] and students can find simulations using manikins difficult [ 47 ]. These factors limit undergraduate student nurses in developing the cognitive skills required for effective palliative care clinical decision making [ 44 ].

In this review there is evidence of disparity and lack of research in low-middle income countries. Also, there is evidence specific to undergraduate student nurse palliative care education preparedness, barriers and implications for practice in this review. From the educational aspect, there is a lack of integration of palliative care philosophy and conceptual framework [ 44 ], crowded curricula [ 53 ], lack of nurse educators and expertise to teach palliative care within nursing faculties [ 40 , 53 , 57 ] and timing and teaching of palliative care [ 44 ] were evident from the empirical studies in this review. From a clinical practice perspective there are difficulties in providing clinical placement [ 57 ] and responding to manikins presents difficulties [ 47 ] and these barriers warrant further investigation. Hence, there is a need for further and continual research and publications in many areas of palliative care education.

This scoping review draws together the research literature on undergraduate student nurse education and preparation for palliative care. The focus of papers identified in this review were on palliative care education (sixteen papers), end-of-life care education (eleven papers), death and dying education (four papers) and palliative and end-of-life care education (three papers). These are specific terms used for people living with life-limiting conditions that require palliative care depending on the stage of their illness or condition. The papers reviewed highlight that palliative care undergraduate nurse education is evident in both high-income countries (twenty-nine papers 85%) and in low- and middle-income countries (five papers 15%). Notwithstanding, the impact of globalisation and the effect the internet and technology has on influencing and sharing information world-wide, it is evident from this review that there is a lack of published research from low- and middle-income countries or collaborative palliative care education or research between high and low- and middle-income countries. This is important as the highest proportion of adults in need of palliative care are from low- and middle-income countries and where palliative care still developing and is primarily limited to urban areas [ 60 ].

In discussing the review question (a) What educational models are utilised within palliative care undergraduate student nurse education? This review highlights that theoretical and experiential learning go hand-in-hand in palliative care education and training [ 38 ]. This review identified five conceptual frameworks for palliative care education see Table 5 . Utilising frameworks in education provides a fundamental structure to explain human behaviour towards learning [ 61 ]. Educational models are the philosophical foundation of any overall approaches and beliefs about learning, instruction and content through providing meaning and direction [ 62 ]. However, there was no evidence of integration of palliative care philosophy with the conceptual frameworks identified in this review. The use of a conceptual framework to deliver palliative care is a valuable tool for nurse educators to structure education and serves as a standard for practice because many educators/teachers continue to find values and benefits in using learning styles concept that are applicable in different situations. There is likely to be a conceptual framework which is appropriate in one situation and not in another. Therefore, there is a need to be clear which palliative care educational models and the methods are beneficial and appropriate to use. Following which it is important to investigate the conceptual frameworks appropriates and fit with palliative care philosophy to facilitate, deliver and evaluate palliative care education for undergraduate student nurses.

Discussing the review question (b) What methods have been used to assess effectiveness of palliative care undergraduate nurse education? This review highlights that palliative care educational programs facilitated by an expert multi-disciplinary team through a series of course contents that are both theoretical (classroom) and practical (skills practice in a simulated setting with anatomic models) is most effective and promote better preparation of undergraduate student nurses. For palliative care education to be effective it must result in positive learning outcomes for students [ 63 ]. Within this review effectiveness was identified through knowledge gained, self-confidence and adequate preparedness and is in line with other research [ 41 , 64 ]. Key within palliative care education is assessment of learning as it determines whether the learning goals are met. Well-designed assessment methods provide valuable information about student learning and identifies what was learned, how well and where they struggled [ 52 ]. The assessment methods identified in this review seem limited when compared to palliative care philosophy and educational contents. Hence, there is a need for further investigation of assessment methods that identify learning, preparedness, competence and outcomes in practice. In some incidents funding is required to determine the effectiveness of palliative care learning outcomes especially in low- and middle-income countries.

Discussing review question © What facilitators/barriers have been reported relating to the success/failure of the models of palliative care undergraduate student nurse education? It is evident that palliative care education is facilitated by a multidisciplinary team that includes nurse tutors, palliative experts, expert guest lecturers and other professional experts. Both theoretical and experiential components develop students’ knowledge, skills, and attitudes. Additionally, palliative care education is being delivered using single or multiple strategies in the classroom, online and in a simulated environment/skills development laboratory, where students continue to practice key skills and demonstrate attitudes in a supervised clinical setting.

The use of blended learning that works together to develop students’ knowledge, skills, and attitudes is evident in this review. Educational processes which organise and systematise patient care [ 45 , 52 ] and early integration [ 29 , 46 ] enhance and impact undergraduate student nurses’ comfort and perceived preparedness. Multiple learning methods have shown to increase knowledge and positive attitude of undergraduate student nurses towards the provision of palliative care [ 54 , 65 ] and clinical exposure to meaningful learning opportunities facilitates learning [ 32 , 66 ]. Structured palliative care course influence students’ ability to be clinically competent [ 38 ] and the use of palliative care documents and guidelines facilitates the success of palliative care education within the undergraduate student nurses’ program [ 6 , 7 ]. In addition, within the last decade the use of simulation and analysis of scenarios has assisted to prepare students [ 38 , 63 ] and a key element within simulation is debriefing which allows for analysis of the dynamics occurring during the scenario [ 25 , 67 ].

What is evident from this review and the wider literature is that palliative care education requires careful planning, selection of appropriate teaching methods and learning materials, developing a course schedule and planning for student assessment [ 27 , 68 ]. In addition, palliative care educational programs typically require a period of study, allowing time and opportunities for students to develop essential competencies that encompass essential knowledge, skills, values, and positive attitudes [ 69 ]. Therefore, palliative care undergraduate student nurse education should start early in the program and it is crucial for nurse educators to carefully define the core knowledge that students must achieve at each level of their academic program [ 7 , 29 , 46 ].

However, to achieve the delivery of palliative care education within undergraduate nursing programs a balance has to be achieved to offset the barriers of a crowded curricula and the lack of time in the curriculum [ 29 , 40 , 53 ]. This lack of time and crowded curriculum is compounded by the lack of palliative care expertise [ 40 ]. and the difficulty in providing clinical placement [ 57 ]. These result in educators feeling ill prepared to deliver palliative care education and students feeling inadequately prepared for future practice [ 70 ]. Furthermore, this review highlights that there is limited research and agreement about the timing and teaching of palliative care content in undergraduate course [ 44 , 71 ] and simulation presents difficulties for students [ 47 , 72 ].

While a broad range of facilitators are identified within this review [ 25 , 29 , 39 , 57 ] it is recommend that palliative care education be facilitated by experts to enhance knowledge in palliative care and mentor students particularly for high fidelity simulation [ 73 ]. The absence of expert facilitation may limit undergraduate student nurses development of the cognitive skills required for effective palliative care clinical decision making [ 44 , 74 ]. Therefore, there is a need for guidance and support for both educators and students in simulation laboratory [ 75 ]. To support nurse educators responsible for designing undergraduate student nurse course contents expertise and training should be both theoretically and practically to adequately prepare students for practice.

Discussing review question (d) What gaps in the literature exist on preparation within palliative care undergraduate student nurse education? The evidence from this review highlights the disparity and lack of research in low- and -middle income countries. Research efforts build the science of nursing education through the discovery and translation of innovative evidence-based strategies. Therefore, there is a need for nurse educators, researchers and experts in the field of palliative care in low- and -middle income countries to be involved in rigorous research in the teaching-learning process and outcomes at all levels of nursing education. From the educational perspective, this review highlighted the integration of palliative care philosophy and conceptual framework, crowded curricula, the lack of nurse educators with expertise and delivery timing of palliative care education as areas for further consideration and investigation.

Given that palliative care education improves students’ knowledge and increases their preparedness, further research is warranted into the correlation of palliative care philosophy and the conceptual framework to underpin undergraduate student nurse education. From a practice perspective the difficulty in providing clinical placement needs consideration and investigation. To address placement issues there is a need to consider and improve on the limited clinical placement on specialist unit, large number of students scheduled for placement at the same time and short length of placement that may negatively impact the opportunities for clinical experiences in real patients care situations. In addition, family/client involvement in palliative care education and placement provision needs to be addressed in the context of future service provision and the rights of people with life-limiting illness concerning choices that affect their lives. This needs to be considered in terms of how undergraduate student nurses will meet the professional training and educational standards requirements upon graduation. The consideration of a hub and spoke model could be one way to of bridging this issue and utilising family placement as a learning environment for students for preparing them for their future role as a registered nurse [ 76 , 77 ].

Limitations

While this review used precise, transparent methods based on study and reporting guidelines by Arksey and O’Malley [ 18 ] no quality appraisal was conducted as the focus of this review was to update and map the evidence. Thus, this paper only offers a descriptive account of available information and there was no patient and public involvement and there are opportunities for engagement, potentially following published guidance on stakeholder involvement in systematic reviews [ 78 ]. In addition, papers in this review were limited to only five databases which may have affected the inclusion of low- and -middle income countries and the inclusion of secondary data can be seen as both a strength and limitation.

Conclusions

This scoping review illustrates the evidence on palliative care education in preparing undergraduate student nurses for practice. The evidence identifies a wide, varied and expanding range of educational models, facilitation and delivery strategies currently in use. It is evident from this review that undergraduate student nurses require palliative care education in order to produce nurses with the graduate capabilities to deliver high-quality palliative care and to better meet the needs of an ageing population and rising consumer expectations. However, it is suggested that the integration of palliative care education contents requires focused curriculum planning to ensure clarity and cohesion in the content delivery method that is interactive and flexible involving application of different teaching strategies to minimise gaps and overlaps. While effectiveness of palliative education is important as it increases students’ knowledge, improves their attitudes and prepares them to provide palliative care, future research needs to measure application to practice. Furthermore, future research needs to detail the content delivery method, assessment and evaluation method clearly.

Supporting information

S1 checklist, funding statement.

The authors received no specific funding for this work.

Data Availability

IMAGES

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Journal of Hospice & Palliative Nursing
Journal of Hospice & Palliative Nursing (JHPN) is the professional, peer-reviewed journal for nurses in hospice and palliative care settings. Focusing on the clinical, educational and research aspects of care, JHPN offers current and reliable information on end of life nursing. Feature articles in areas such as symptom management, ethics, and futility of care address holistic care across the ...
Palliative Care for the Seriously Ill
Palliative care is interdisciplinary care (medicine, nursing, ... controlled trials and case-control studies of palliative care interventions to date have shown reductions in patients ...
Integrating Palliative Care into Nursing Care
It is also important to remember that interdisciplinary collaboration among primary and specialist palliative care providers—an essential aspect of palliative care delivery 1 —often occurs over time and attends to patient needs across care settings (see A Palliative Care Case Study). To help nursing students to learn with, from, and about ...
Case Studies in Palliative and End‐of‐Life Care
Index (Pages: 309-311) Case Studies in Palliative and End-of-Life Care uses a case-based approach to provide students and practitioners with an important learning tool to improve critical thinking skills and encourage discussion toward improving experiences for patients and their families. The book is organized into three sections covering ...
Serious Illness Discussion in Palliative Care—A Case Study Approach in
Medicare's new focus on end-of-life care has driven nurses and other clinicians to re-examine when advanced care planning should begin, and serious illness discussions should be conducted. This article will address barriers to, cultural influences on, framing of, and documentation of serious illness discussions using a case study approach.
Nursing's role in leading palliative care: A call to action
Palliative care aims to alleviate the suffering of patients with life-limiting illness while promoting their quality of life. In this call to action commentary, we review the ways in which nursing care and palliative care align, describe barriers to nurses engaging in palliative care, and provide specific recommendations for nurses involved in education, training, and administration to assist ...
Lessons learnt: examining the use of case study methodology for nursing
Drawing on examples from nursing and palliative care studies, this paper clarifies case study research, identifies key concepts and considers lessons learned about its potential for nursing research within the unique and complex palliative and end of life context. ... Bainbridge D, et al. (2011) Health system characteristics and quality of care ...
PDF End-of-Life Nursing Education Consortium (ELNEC)
The End-of-Life Nursing Education Consortium (ELNEC) project is a national and international education initiative to improve palliative care. Since 2000, ELNEC is a collaboration between City of Hope, Duarte, CA and the American Association of Colleges of Nursing (AACN), Washington, DC. The project, administered by City of Hope, provides ...
Case Studies in Palliative and End-of-Life Care
Series. Case Studies in Palliative and End-of-Life Care uses a case-based approach to provide students and practitioners with an important learning tool to improve critical thinking skills and encourage discussion toward improving experiences for patients and their families. The book is organized into three sections covering subjects related to ...
PDF Palliative Care Case Study and Discussion
2. Explain the importance of honoring Advance Directives. 3. Demonstrate influence of multicultural background of health care providers and the care perspective. 4. Explain how an interdisciplinary Palliative Care Team utilizing a transdisciplinary approach impacts patient outcomes.
Palliative Wound Care: Case Studies : Journal of Hospice & Palliative
Palliative Wound Care Case Studies. Walsh, Anne ANP-BC, CWOCN, ACHPN. Author Information . ... Journal of Hospice & Palliative Nursing: February 2022 - Volume 24 - Issue 1 - p 15-21. doi: 10.1097/NJH.0000000000000821. Buy; CME Test Metrics Abstract. Patients with advanced illness may present to palliative care or hospice with unmanaged symptoms ...
Clinical Oncology Nurse Best Practices: Palliative Care and End-of-Life
In addition, these case studies and scenario responses can serve as an initial guide for clinical nurses new to clinical oncology practice, as well as for veteran clinical oncology nurses who seek to refine their communication skills in the context of palliative care (Berg et al., 2021; Moore et al., 2018).
Palliative Wound Care: Case Studies
The following 5 case studies demonstrate a palliative approach to wound care in the patient with advanced illness receiving home hospice care. These consults were completed via a combination of in-home CWOC NP visits along with telehealth consults initiated by the nurse, nurse practitioner, or physician visiting the home.
Experiences of staff providing specialist palliative care ...
Objective: To explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic. Design: Qualitative multiple case study using semi-structured interviews between November 2020 and April 2021 as part of the CovPall study. Data were analysed using thematic framework analysis. Setting: Organisations providing specialist palliative services in any setting.
Quality of palliative and end-of-life care: a qualitative study of
Background In 2021, the National Institute of Public Health (INSPQ) (Quebec, Canada), published an update of the palliative and end-of-life care (PEoLC) indicators. Using these updated indicators, this qualitative study aimed to explore the point of view of PEoLC experts on how to improve access and quality of care as well as policies surrounding end-of-life care. Methods Semi-directed ...
Co-creating possibilities for patients in palliative care to reach
This means that we need to understand current palliative care philosophy and how its goals can be realized in home-care nursing encounters (HCNEs) between the nurse, patient and patient's relatives. ... Co-creating possibilities for patients in palliative care to reach vital goals--a multiple case study of home-care nursing encounters Nurs Inq ...
Nursing case management in the palliative care: Scoping review
Abstract. Background & Aim: Palliative care is of vital importance for the quality of life of the person who benefits from it. Nursing case management provides useful tools for optimizing the care that is provided, thus being an important resource for improving them in an area as complex as palliative care. This study aimed to map scientific ...
Stepped Palliative Care for Patients With Advanced Lung Cancer
Importance Despite the evidence for early palliative care improving outcomes, it has not been widely implemented in part due to palliative care workforce limitations.. Objective To evaluate a stepped-care model to deliver less resource-intensive and more patient-centered palliative care for patients with advanced cancer.. Design, Setting, and Participants Randomized, nonblinded, noninferiority ...
Palliative care education in undergraduate medical and nursing programs
The number of people suffering from chronic diseases requiring palliative care (PC) is increasing rapidly. Therefore, PC teaching in undergraduate health science programs is necessary to improve primary PC based on international recommendations and available scientific evidence. A descriptive cross-sectional study was conducted. Active undergraduate medical and nursing programs that were ...
Small Steps, Big Vision: using multi-stage qualitative research to
The Ambitions for Palliative and End of Life Care is a national framework for local action in England co-produced by over 30 partners; little research has been conducted on how the Framework is received and used. This study sought to examine and support how people understand, interpret, and implement the Framework. A multi-stage qualitative methodology involving four stages of data collection ...
Benefit finding among family caregivers of patients with advanced
According to 2020 data, there were 19.29 million new cancer cases and 9.96 million cancer-related deaths worldwide, and the incidence and mortality of cancer are increasing rapidly [].With advances in cancer treatment, palliative care provides comprehensive care for patients with advanced cancer, aiming to control symptoms such as pain, improve the quality of life for patients and family ...
Palliative Care Models for Chronic Disease Management
Palliative care is a type of specialized care that eases the symptoms and stress of managing disease and focuses on improving quality of life. It can be implemented for many types of chronic diseases, including chronic obstructive pulmonary disease (COPD), kidney diseases, Alzheimer's, different types of cancer, and heart failure.
Student nurse education and preparation for palliative care: A scoping
The third paper utilised an assignment on student observation experience and case study analysis of a palliative care case study with pre and post-test . ... EAPC 2004 document on palliative care nursing education used in many countries to foster and influence the development and preparedness of students for palliative care nursing education:
CAPC Experts Discuss How Palliative Care Use is Hindered by
CAPC's Brynn Bowman, MPA, and Allison Silvers, MBA, joined the McKnight's Newsmakers Podcast to discuss how, despite increased awareness, misconceptions about palliative care hinder its wider adoption among the public and health care professionals. They clarified that palliative care is covered under Medicare Part B, countering on common myth.
Multi-site randomized trial of a collaborative palliative and oncology
Yet interventions to optimize EOL care delivery and QOL for this population are lacking. Methods: We conducted a multi-site randomized clinical trial of a collaborative palliative and oncology care model compared to usual care in 115 adult patients with AML and high-risk MDS receiving non-intensive therapy at two tertiary care academic ...

Case Study 3 – Palliative and End-of-Life Care

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Case Study 1: Discussion With the Patient About Advance Directives

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CASE STUDY 3: VENOUS LEG ULCERS (BILATERAL LOWER EXTREMITIES)

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Small Steps, Big Vision: using multi-stage qualitative research to develop a grab-and-go guide to support utilisation of the Ambitions for Palliative and End of Life Care framework

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BMC Palliative Care

Benefit finding among family caregivers of patients with advanced cancer in a palliative treatment: a qualitative study

Conclusions

Participants

Data analysis

Qualitative findings

Theme 1: personal growth

Enhanced familial responsibility

Initiating assistance

Theme 2: strengthening relationships with patients

Increased intimacy

Warmth and strength

Theme 3: Adjustment and adaptation

Strengthen belief

Patient factors