palliative care case study examples for nurses

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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?

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?

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.

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

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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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Palliative Care Case Studies – PCC4U

Self-directed learning.

Four modules and four focus topics, aim to support learning about palliative care in specific populations and contexts. These resources have been developed by PCC4U Palliative Care Curriculum for Undergraduate and used for palliative care education.  The following videos are designed to accompany written evidence based content and thinking points, however you will find the videos are useful tool on their own. More information about PCC4U and the learning resources can be found at  www.pcc4u.org.au  .

Reflections on What You Have Learnt

1.What key points have you learnt from the activities in this module that will help you in providing care for people with life-limiting illnesses and their families? 2.What specific strategies do you plan to incorporate as a graduate health care professional? 3.Do you see any difficulties using what you’ve learnt here as part of your practice as a health care professional? If so, what strategies might you use to address these difficulties?

**Acknowledgement: All modules and topics have been provided by PCC4U Palliative Care Curriculum for Undergraduates ( www.pcc4u.org.au )

Core Modules

This module will help you develop the knowledge and skills needed to provide quality care, across various health care settings, to people with life-limiting illnesses and their families.

Aims & objectives

You’ll develop an understanding of the social and personal experiences of people with life-limiting illnesses and their families. This module will also cover principles of palliative care.

After completing this module, you should be able to:

• analyse the impact historical trends have on community perceptions about death, dying and bereavement in contemporary society
• recognise how your own values and beliefs about death and dying affect your responses and interactions with people with life-limiting illnesses and their families
• describe the core principles of palliative care.

Watch the  case study here .

For further learning on the Principles of Palliative Care, visit the  PCC4U website – Module 1: Principles of palliaitve care.

This module will help you develop your skills in communicating with people with life-limiting illnesses and their families.

• demonstrate the principles of effective communication when interacting with people with life- limiting illnesses and their families
• identify sources of psychological, social and spiritual support for people with life-limiting illnesses and their families
• recognise how your own values and beliefs about death and dying affect your personal responses and interactions with people with life-limiting illnesses and their families.

For further learning on communication go to the  PCC4U website – Module 2: Communicating with people with life-limiting illnesses .

This module will help you develop the knowledge and skills needed to identify the health needs of people with life-limiting illnesses. The resource will also help you develop your understanding of the principles for managing common clinical problems in palliative care.

• describe the epidemiological and clinical features along the illness trajectories of specific life- limiting illnesses
• explain the principles for assessing common symptoms and health problems associated with life-limiting illnesses
• explain the principles for management of common symptoms and health problems associated with life-limiting illnesses.

Watch the  case study here.

For further learning on assessment and intervention, go to the  PCC4U website – Module 3: Assessing and managing symptoms.

This module will help you develop your understanding of how to provide support for people with life-limiting illnesses and their families. In particular, it focuses on issues of loss, establishing goals of care, and understanding the effect of caregiving.

• recognise the different responses and emotions of people living with life-limiting illnesses and their families
• discuss strategies for facilitating collaborative decision-making on care goals with people with life-limiting illnesses and their families
• identify interventions that will optimise physical, psychological and social function for people with life-limiting illnesses and their families
• analyse the effect of caregiving on the family networks of people with life-limiting illnesses
• recognise how your own values and beliefs about death and dying affect your responses and interactions with people with life-limiting illnesses and their families.

Watch the  case study here.

For further learning on optimising function, visit the  PCC4U website – Module 4: Optimising function in palliative care .

Focus Topics Modules

This topic will provide an opportunity to develop knowledge and skills associated with providing culturally appropriate care for people with life-limiting conditions.

This focus topic is based on the core principles of palliative care and is designed to supplement the learning activities in Module 1: Principles of palliative care.

After completing this focus topic, you should be able to:

• understand the role of culture in contributing to individual’s experiences of living with a life- limiting condition
• apply principles of culturally centred care when caring for people with life-limiting conditions.

For further learning on culture-centred care, visit the  PCC4U website: Topic 4: Culture-centred care of people with life-limiting conditions .

This module will help you develop the knowledge and skills needed to provide quality care, across various health care settings, to Aboriginal people with life-limiting illnesses and their families.

This module is based on the core principles of palliative care and is designed to supplement the learning activities in Module 1: Principles of palliative care.

• Identify the practice principles of caring for Aboriginal people with life-limiting illnesses

For further learning on caring for Aboriginal people visit the  PCC4U website – Topic 2: Caring for Aboriginal people with life-limiting conditions .

This module will help you develop the knowledge and skills needed to provide care, across various health care settings, to children with life-limiting conditions and their families.

• discuss the key principles associated with caring for children with life-limiting conditions and their families
• describe the process of assessment and management of children with a life-limiting illness and their families, through an interdisciplinary approach to care
• identify strategies to facilitate coordination of care for children with a life-limiting condition, their families and their communities.

For further learning on caring for children, visit the  PCC4U website – Topic 3: Caring for children with life-limiting conditions .

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The Atlas of Shared Learning

Improving palliative care: the conversation project.

• End of life care
• Nursing, midwifery and care

Leading change

Nursing leadership in the Palliative Care Team at the Royal United Hospitals Bath NHS Foundation Trust identified that staff had more confidence in supporting patients with palliative and end of life care in the last few days of life compared to the weeks and months prior to a patient dying. This unwarranted variation led to the Palliative Clinical Nurse Specialists initiating a response with ‘The Conversation Project’. This project aims to support the education, development and support for staff to increase the quality of end of life care for patients, families and staff across the Trust.

Where to look

The Palliative Clinical Nurse Specialists recognised unwarranted variation in the support being provided to palliative and end of life patients. Interviews with staff about their end of life care-giving experience uncovered that staff felt more comfortable with the care they provided once they knew that the patient was in their last few days of life, compared to the weeks and months prior when things seemed very uncertain and the patients’ care and management was less clear.

They knew this lack of clarity was especially difficult for patients and families, impacting on their understanding about the future and direction of their condition, leading to uncertainty and concern. Underpinning all of this was the importance of entering dialogue with the patients and their families about what was happening to them, to help them express their concerns and worries and to consider their preparation for the future.

There was recognition of the need to better support patients with their decision-making and management of care at an earlier stage which would enhance the experience of patients, families and staff.

What to change

Staff often found their conversations with both the patient and their family towards the end of a patient’s life difficult. Decisions about the management of care at the end of life could often be made late. Many thought ‘end of life’ meant just the last few days of life. Research of varying strength suggests healthcare professionals are often more optimistic in their prognosis of illness. This often leads to end of life conversations not being identified early enough, with a patient approaching the final weeks and months of their life not always being recognised. Other barriers identified included avoidance of perceived ‘difficult’ conversations ( NICE 2017 ).

The things that needed to change included:

• An earlier recognition that the patient is approaching the end of their life or is facing an uncertain future;
• To facilitate and raise awareness for the need for earlier conversations with patients and families about their current situations;
• To improve the documentation of those important conversations;
• To include these discussions in the ward multidisciplinary team (MDT) meetings to support a shared involvement and understanding of the needs of the patient and family;
• To improve the transfer of information pertaining to a patient’s end of life on discharge or transfer of care;
• To bring about a cultural shift in how their hospital recognised and engaged in the care of the dying;
• To ‘normalise’ end of life conversations and to help staff recognise that anyone of us could be with patients when they wish to discuss their fears and wishes as their condition deteriorates.

The Conversation Project was developed to support and provide the focus for change that they had identified was needed.

How to change

The change has been driven by hearing and understanding the experience of patients, families and staff. This was then developed through an improvement programme with the Point of Care Foundation and the Kings Fund. Further developments have supported this initiative, so that it is recognised across the Trust:

• Education, role modelling and the influencing of key staff;
• Ward multidisciplinary team (MDT) meetings include earlier recognition that the patient is approaching end of life;
• Staff more readily recognise their role to have conversations with patients and families about what is happening and/or listen to their worries;
• These conversations are more readily documented and transferred when the patient is discharged;
• A cultural shift in how staff view end of life care and a greater engagement with attending to the needs of the dying patients and their family.

The Palliative Care Team have developed resources to support the objectives of The Conversation Project, including:

• White board magnets to promote advance care planning conversations;
• CHAT Bundle (Consider, Have, Advise, Transfer);
• Planning Ahead guidance leaflet;
• Planning Ahead – My Wishes leaflet;
• Intranet resource.

The patient and carer experience group has been involved in the development of the patients and family information resources to support the Conversation Project. They have engaged with the public and Trust members to understand their views around communication and end of life care and built this in to the work that is happening:

• A ‘caring for you’ event (2017) shared information on the project and sought feedback from Trust members (patients, family and public) on end of life care and advance care planning. The feedback recognised the importance of having conversations earlier to enable patients and families to plan-ahead;
• A bereavement feedback questionnaire for more general feedback on support received;
• ‘See it My Way’ events in Dying Matters Week (May 2017, 2018) to share experiences of patients and families around communication, conversations around end of life care and care at the end of life with staff;
• Four bereaved families and four patients living with a life-limiting condition were supported to talk about their experiences of care;
• At both ‘See it My Way’ events, the families and patients were filmed, resulting in two short 15-minute films which supports ongoing staff training.

Adding value

Initially, measurements included the numbers of patients recognised as entering the final phase of their lives, the inclusion of this in ward MDT meetings, the evidence that conversations took place and the documentation of these conversations. In addition, evidence that this information was transferred with the patient on discharge was included. The palliative care team continue to seek evidence that the patients are identified on the wards, education is ongoing and further work is happening with consultants and teams across the hospital.

Better outcomes – There is a greater awareness of the needs of patients and families as the patient approaches the final phase of their lives. There is improved engagement with staff, patients and families about their understanding of their illness, the focus of care and planning for the future. Further work is ongoing with specific areas of care such as respiratory medicine and cardiology.

Better experience – Staff have been openly engaged in this work, they understand the importance of the dialogues they are having with patients and families and the need to help them prepare for the future. Staff need support to enter conversations and the words and phrases to improve their confidence and skills. This work is ongoing. This is a patient-centred approach to care, to listen to the patient and their family, to check their understanding and work to meet their choices as far as possible. Patients receive better care if listened to and the focus of care is based on what is important to them. If patients feel heard and responded to, their experience of care will be enhanced.

Better use of resources – Patients receive appropriate care towards the end of their life and have a greater choice in their place of care, with less time is spent in hospital if their wish is to receive care elsewhere.

Challenges and lessons learnt for implementation

There has been a great deal of learning from this initiative; from what matters to patients, families and staff, to driving change within teams and across an organisation.

The Conversation Project and the themes are identified across the hospital. Staff understand the importance of the earlier recognition of patients approaching the end of life. Conversations are improving with more work still to do. Staff engagement is good, with some areas more on board than others. Staff turnover and workload affects the change process.

The ‘why’ and ‘how’ of the project is a continuous focus of this work – to maintain staff engagement and link with new staff. Education is a challenge in an acute hospital, seeking to deliver informal teaching, role modelling, supporting the use of tools for recognising prognosis and communication skills. There is always more to do and change is a continuous process.

Identifying that change can happen when driven by a committed group, with a clear message, underpinned by an understanding of the needs of patients, families and staff.

Lessons learnt include:

• Avoid the need to change everything all in one go, but to continue to strive for small changes in a consistent manner;
• Identify what staff, patients and families feel is most important and work with that;
• Seek out key staff and work with them, use them to support the change;
• Feedback and support regularly;
• Ensure that change is to the patients’ benefit. Evidence the change and report back to clinicians.

For more information contact

Helen Meehan Lead Nurse Palliative and end of life care [email protected]

Rachel Davis Senior Palliative Clinical Nurse Specialist [email protected]

• Care close to home
• End of life/Palliative care
• Hospital (acute)

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Student nurse education and preparation for palliative care: A scoping review

Abiola durojaiye.

1 Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland

2 Department of Nursing and Midwifery, Health Research Institute, University of Limerick, Limerick, Ireland

Associated Data

All relevant data are within the paper and its Supporting information files and the DOI's are provided for all materials that informed the results of this paper: https://figshare.com/articles/journal_contribution/Support_file_1_docx/23247950

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).

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.

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.

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 ].

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.

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 ].

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 ).

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

5 case studies: When is it time for palliative care versus hospice?

Never hesitate to say “I need help” if you’re struggling to cope with the pain and distress of a life-limiting illness. Hospice and palliative care providers are specially trained to hear your plea and will offer comfort, compassion and support.

“Just because you ask to speak with a palliative care or hospice care provider doesn’t mean you have to start service,” says Lisa Wasson, RN, clinical educator for HopeHealth.

Palliative care and hospice care are two different sets of services, although you might hear people use the terms interchangeably.

• Palliative care is for patients with a serious illness who are still receiving curative treatments, such as chemotherapy or dialysis. Palliative care providers offer medical relief from the symptoms or stress caused by either the illness itself or the treatment. They also help patients understand their options and establish goals of care.
• Hospice care is for patients with a life-limiting illness who have decided to stop curative treatments or have been given no further treatment options for cure or to prolong life. A full team of doctors, nurses, social workers, spiritual chaplains, hospice aides, grief support professionals and volunteers offer comfort and support to the patient and family.

To learn more about these differences, read The ABC’s of curative, palliative and hospice care .

5 case studies: Is palliative care or hospice care more appropriate?

Below are five fictional stories to give you a sense of when it could be helpful to ask for a palliative care or hospice care consultation. (Every medical case is unique, and only your health care provider can advise on your care.)

Case 1: An 86-year-old with Alzheimer’s disease is repeatedly hospitalized

Janet was diagnosed with Alzheimer’s disease nine years ago and lives at home in the care of her husband. She cannot make her needs known, is incontinent and depends on her husband to feed her. She has lost 20 pounds in six months and been hospitalized three times.

Palliative care or hospice? Janet would likely qualify for hospice care given how far along her disease has advanced.

Case 2: A man wishes to stop dialysis despite family’s wishes

Robert is 64 years old and has kidney failure, coronary artery disease and diabetes. He receives dialysis three times per week but wants to stop treatment. Today he was hospitalized after skipping two dialysis appointments. Robert’s family is concerned he is giving up, and they don’t know what to do.

Palliative care or hospice? Robert and his family need to get on the same page regarding his options and wishes. A good first step would be to ask a palliative care provider to guide that conversation with skill and sensitivity. Ultimately, Robert does have to the right to stop dialysis and choose hospice if he wishes.

“We deserve as much beauty, care and respect from the health care system at the end of life as we receive at the beginning when we are born” —Lisa Wasson, RN, CHPN

Case 3: A 30-year-old with breast cancer and her mother need support

Imani has undergone two rounds of chemotherapy and radiation for breast cancer. She has severe nausea and is losing weight due to poor appetite. Her mother, who works full time, is her primary caregiver.

Palliative care or hospice? Imani is actively fighting her disease with curative treatment and might qualify for palliative care. She would receive symptom management, support services to help her mother, and a conversation about her goals of care.

Case 4: A woman with autoimmune disorders battles depression

Cindy, age 52, has multiple autoimmune disorders, fibromyalgia pain and depression. She takes antidepressant medication, is self-isolating and cannot hold a job due to taking too many sick days.

Palliative care or hospice? Cindy is not a candidate for either palliative care or hospice care because she does not have a life-limiting disease. She still needs support, though, and would be referred to a case manager or social worker.

Case 5: A man with advanced ALS requests a do-not-resuscitate order

Carter has ALS, or amyotrophic lateral sclerosis, a progressive neurodegenerative disease. He has been hospitalized with infection five times and is on a ventilator. Carter is alert and told doctors he wants to return home and sign a do-not-resuscitate order (DNR). His family is upset about his decision.

Palliative care or hospice? While in the hospital, Carter can request to speak with a palliative care or hospice care provider to guide this sensitive conversation with his family. If he wishes to start hospice, a team will help him return home, tend to life-closure tasks and die in peace and comfort surrounded by his family.

Lisa Wasson hopes more patients and their families will seek to understand the benefits of hospice and palliative care. “We deserve as much beauty, care and respect from the health care system at the end of life as we receive at the beginning when we are born,” she says.

Questions about hospice care or palliative care? Contact us at (844) 671-HOPE or [email protected] .

Privacy overview.

Palliative care nurses see us in our final hours — these are the life lessons they've learnt

Anne Myers was once confused and shaken by death.

After more than a decade as a nurse, including in hospital ICUs, her mother died.

"I'd seen a lot of deaths in my nursing life, but it was the closest human to me that had died," she said.

"It kind of sent me down a 'oh my god, I don't know what's happening to me', this grief I'm experiencing."

Soon afterwards, she became a palliative care nurse.

"I ended up just going down the path of 'what is death, what is death and dying all about?'" she recalled.

More than 15 years later, here's what she and other palliative care nurses have discovered on how to die well and live well.

Dead people visit you before you die – and if that happens, go with it

Anne-Marie Jackson has been a palliative care nurse for 26 years but began her medical career 40 years ago in the UK at a time of high fear and anxiety.

"Just when HIV and AIDS had come out," the Irish-raised nurse said.

"I've seen so many deaths, and not one has been the same.

"But you know, when death is imminent, some things, there's some things that happen."

One of those things can be feeling, sensing, hearing and even seeing the presence of others, who aren't physically there.

"People will see their dead relatives in the room," she said.

"And, you know, families will go and tell them that they're not seeing them. And I'm like, well, they actually probably are seeing them, because … it happens quite a lot."

Ms Myers said in her experience it was common and could be linked to the delirium that often sets in shortly before death.

"Within that delirium they will hallucinate, and see family members that have died," she said.

"They start saying 'Mum, mum' and they're 90.

"We always say to the family to support that, because whatever they are seeing, it can be a source of comfort for them. That they are going to meet whoever they haven't seen for a long-time."

Palliative care nurse Marita Rees said her own brother saw the presence of a long-dead family member in the room just before he died.

"It was quite amazing, because the person that he saw and what she said she was doing, it was just so true to what she would have been doing. It was almost a preparation type thing.

"You also see a lot of people hold on to life."

At the end, some patients hold on until they're ready

In her decades of nursing, Marita Rees has not only seen patients visited by the dead in their final moments — she's seen terminally ill people who should die within the week or the month hold on much longer than doctors expected, usually for birthdays or anniversaries.

"Many actually end up happening [die] on Christmas Day, because its almost like they have held on for Christmas," Ms Rees said.

"Definitely people hold on for people, family that are coming, travelling from somewhere else [to say goodbye].

"And then we've also seen people let go, when someone is not there. Like when someone is keeping vigil, and they leave the room just for a moment, and they'll go then.

"I feel like I see it with mothers and their children, and it is almost like mothers are mothers till the last breath, even though their children might be 50 or 60."

Ms Jackson teared up recalling how one man apparently refused to die until he had said goodbye to specific loved ones.

"We had a young gentleman … unconscious for nearly a week… and his hand it was like a rag doll. It would just flop there," she said.

"And I remember saying, you know is there anybody, is he hanging on for something else, anything, because he's hanging on for something?

"And they say nobody. Everybody has said their goodbyes.

"And I said, were there any pets? And she's like, 'yeah yeah, we got two dogs, two gorgeous dogs and they were his life'. And I says 'go get the dogs'.

"The two dogs came in, and the two of us cried — this is no word of a lie – he lifted his hand and put his head on the two dogs' heads. And he died within the next half an hour."

Beautiful things happen – but people don't change

The trio have cared for literally thousands of dying people, and while many deaths are sad, people are capable of extraordinary beauty when time is short.

Ms Myers said for some, it provided a focus for their love.

"It can be a good thing for families. It can bring them together. They are in room and sharing stories," she said.

"Things like parents [who are terminal] writing out individual birthday cards for their kids until they are 18, or making videos.

"And the amount of women that have left their partners that come back and nurse them to their death. I mean what a generous act. It's extraordinary."

Ms Jackson said the love she had seen had surprised her.

"Sometimes it's like the Aussie battler that comes to the party, and they care for their loved ones at home," she said.

"I've seen sons with no women there, caring for their mother so beautifully and you are like 'oh my god, they are able to do this'. Absolutely phenomenal."

But the trio agree a bitter, selfish or angry person doesn't suddenly become warm, kind and generous.

Ms Myers said people didn't change who they were at their core on their death beds, and people around them didn't change dramatically either.

"Some people self-reflect a bit," she said.

"But the dynamics don't change."

Ms Rees agreed 180-degree turnarounds are the stuff of Hollywood fiction.

"It doesn't happen," she said.

"And often people don't get the opportunity to change. It's too late. They're already wired the way they are."

Live your life now

The nurses have all truly seen that life is beautiful and fragile, but sadly too many people wait too long to live it.

"Life is short. Life is precious," Ms Myers said decisively.

It's a sentiment she carries in her own life, where she's working less, spending more time with her horses and writing a book.

"We have so many people that come onto our program, that are 66 years old. And they've got the caravan in the driveway, ready to hit the road for their retirements," she said.

"Worked hard all their life and get a cancer diagnosis. It happens a lot".

Ms Rees recently walked the centuries-old Charles Bridge in Prague – something on her bucket list.

"My advice for living is to absolutely seize the day," she said.

"For me it's about prioritising and doing things that are on my bucket list, and I'm looking forward to doing more in the future."

Ms Jackson agreed and encouraged Australians to break down the taboo around the topic of death and planning ahead for it.

"How many people have got a will? Or if you do, have you discussed what you would like done if something happens suddenly?" she asked.

Ms Myers began her career in palliative care trying to work out death.

So has she?

"Now that I've seen what death looks like, I'm fine with it," she said.

"I mean a cancer diagnosis and the treatment … that's pretty tough.

"But I know, the moment before, if you are surrounded by the people who love you and you are getting good care it is a beautiful way to go.

"It's not something to be frightened of."

• X (formerly Twitter)
• Death and Dying
• Doctors and Medical Professionals

• Open access
• Published: 06 July 2024

The meaning of culture in nursing at the end of life – an interview study with nurses in specialized palliative care

• Rasha Mian 1 &
• Åsa Rejnö 2 , 3 , 4  

BMC Palliative Care volume  23 , Article number:  166 ( 2024 ) Cite this article

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Metrics details

The countries of the world are becoming increasingly multicultural and diverse, both as a result of growing migration, of people fleeing countries at war but also due to increased mobility related to labour immigration. Culture is a broad concept where the definitions focus on learned and shared values, traditions, and beliefs of a group of individuals. People’s culture affects health and perceptions of illness as well as treatment, symptoms, and care. Moreover, people who are at the end of life, live and exist within all levels and contexts of care. Specialized palliative care requires that the nurse has sufficient knowledge and skills to be responsible for meeting the patient’s nursing needs also on a cultural level, regardless of cultural affiliation. The aim of the study was to highlight nurses’ experiences of the meaning of culture when caring for patients at the end of life in specialized palliative care.

The study was conducted with a qualitative design and inductive approach. Semi-structured interviews were conducted with twelve nurses in western Sweden. Data were analysed using qualitative content analysis.

The nurses had an awareness of culture as a phenomenon and how it affected palliative care at the end of life. The results showed two categories, Awareness of the impact of culture on nursing and Culture’s impact and influence on the nurse’s mindset and approach , consisting of seven subcategories that highlight the nurse’s experience. It emerged that there are differences between cultures regarding notions of dying and death, who should be informed, and treatments. There were also challenges and emotions that arose when cultural preferences differed among everyone involved. A person-centred approach allowed for recognition of the dying person’s culture, to meet diverse cultural needs and wishes.

Providing culturally competent care is a major challenge. There are often no routines or methods prescribed for how nurses should relate to and handle the diversity of cultural notions that may differ from the values and cornerstones of palliative care. Having a person-centred approach as strategy can help to better manage the situation and provide equitable care on terms that respect cultural diversity.

Peer Review reports

Cultural competence in nursing contributes to promoting health and well-being and creating the conditions for patients to face their illness, difficulties, and death in a dignified way based on their cultural background [ 1 ]. Many societies of the world are becoming increasingly multicultural as a result of growing migration both as an effect of people fleeing countries at war and due to increased mobility related to labour immigration, climate crises, poverty and global inequality. The increasing proportion of migrants globally – 240 million international migrants and additional people moving within their country of birth – leads to an increased diversity of cultures in many countries and thus an increase in patients with diverse cultures needing health care [ 2 ]. According to IOM UN Migration, every eighth nurse also works in a country other than where they were born or trained [ 3 ]. Care involving encounters between people with different cultures is a result of both perspectives of migration. Moreover, nurses can encounter people who are at the end of life in all levels and contexts of care. In this situation, they should be given good care based on their individual needs, regardless of cultural affiliation. People’s equal rights and opportunities regarding improved health (Goal 3 of the sustainable development goals) and reduced inequality (Goal 10) are important goals to reach, regardless of factors such as ethnicity, religion, and culture [ 4 ]. In the field of health care, one’s culture affects beliefs about both health and disease as well as treatment, symptoms, and care. Culture is a broad concept that is defined in a variety of ways, but most definitions focus on learned and shared values, traditions, and beliefs upheld by a group of individuals [ 5 ]. Despite any conceptual confusion, the core components of cultural competence models have been identified as cultural sensitivity, cultural knowledge, and cultural skills [ 6 ].

Every year, the WHO [ 7 ] estimates that 56.8 million people in the world are in need of palliative care. WHO defines palliative care as an approach which aims to improve the quality of life for patients and their families [ 7 ]. Palliative care should prevent and relieve suffering through early detection, careful analysis, and treatment of pain and other psychosocial, physical, and existential symptoms. The WHO definition has previously prevailed globally but has been complemented by an expanded consensus definition that the International Association for Hospice and Palliative Care (IAHPC) worked out and proposed, where pending death is not necessary but severe suffering is sufficient to be covered by palliative care [ 8 ]. This means that the consensus definition includes more persons than the previously prevailing definition. One of the points highlighted is that in order to provide good palliative care, it must be given with respect to the cultural values and beliefs of the patient and those close to them. Culture is important for the way patients react to symptoms, care, and facing death. When patients, families, and healthcare professionals come into contact with serious illness, difficult decisions, and limitations to treatment, cultural differences can become more prominent in the encounter [ 9 ].

For nursing in palliative care to be appropriate, considerations of cultural circumstances need to be taken into account [ 1 , 10 ]. Cultural competence in care is a concept that has been developed to facilitate and enable care that can better respond to cultural diversity [ 11 ]. Cultural diversity is expressed in different ways in different countries and can vary and change as a result of migration, an aging population, and the fusion of different cultures [ 9 ]. According to Gysels et al., cultural differences and variations can also occur within different countries, regions, and groups. It is also important to distinguish between culture, ethnicity and religion. Although the concepts are closely related, equating culture with ethnicity does not capture the existing diversity in contemporary societies, and reducing it to personal beliefs has little explanatory value [ 9 ]. Culture is also influenced by gender, social class, education, age group etc. In addition, research from New Zealand describes variations in individual desires that also occur within and outside groups of people with the same cultural affiliation, i.e. sub-cultures [ 12 ]. For these reasons, it is important not to generalize and make assumptions based solely on cultural values but to inquire about the unique needs and desires that a patient has regarding end-of-life care.

Research has often stressed cultural knowledge as a way to gain cultural competence, but both cultural sensitivity (or humility) [ 13 ] and skills have also been shown to be of obvious importance [ 6 , 10 ]. Emphasis is placed on the fact that nurses need to possess knowledge about other cultures to create understanding for their patients [ 1 , 10 ], while nurses also need to be aware of their own cultural identity and how it affects their views on health, quality of life, and nursing.

Healthcare staff, patients, and relatives may have different values and approaches that do not correspond to the palliative care foundations and values regarding illness, treatment, and death [ 14 ]. This can concern different perceptions about life-threatening illness, communication, and decision-making about end-of-life care [ 15 ]. In Western culture, efforts are made to make it possible for the patient to be autonomous, thus making decisions about their care and the way they receive information about their health [ 12 ]. In Asian culture and Confucianism, the family’s involvement and role in care is important, and decision-making rests with them [ 16 ]. This can lead to conflicts in care when different cultural approaches, such as these cross paths at the end of life. One such area of conflict may be the differing perceptions regarding respect for patient autonomy, which is seen as important in Western culture, while the family is paramount in Asian culture [ 16 ].

Cultural aspects and care at the end of life have been studied to varying extents worldwide. The available studies highlight that knowledge of various cultural aspects is important in end-of-life care. Systematic reviews from both the United Kingdom [ 17 ] and Australia [ 18 ] show differences in care to the detriment of ethnic minorities, and these seem to persist over time. One common conclusion from these reviews is that persons belonging to ethnic minorities seem to be treated in a less person-centred way and more in line with healthcare professionals’ personal assumptions based on the patient’s cultural belonging. Differences between European countries are seen in areas such as decision-making processes in spiritual and religious matters, family presence, ethics, care, decision-making, autonomy, and the organization of care for the dying patient [ 9 ]. Although the staff may have training and experience in caring for people of varying origins, it is still experienced as challenging to care for and be aware of specific cultural factors and how these can affect different care needs at the end of life [ 19 , 20 ]. These studies also support the requirement to be culturally competent and respect the patient’s preferences. Shortcomings and challenges resulted in neglecting the adaptation of care to the individual’s needs. Research from New Zealand describes how care staff handling the wishes of relatives’ belonging to ethnic minorities need to assume a different role in their patient’s care [ 12 ]. In addition to being experts in providing care, these caregivers take on a more educational and supportive role, providing support and equipping families with practical skills for training relatives to care for their dying elders. It has also been shown that the use of care teams and available resources specializing in palliative care is considered important for supporting staff and providing culturally specific care for patients and their families at the end of life [ 19 ].

Patients in need of palliative care are a growing group. When patients and persons important to them – hereafter referred to as “family members” regardless of family ties or not – encounter staff with different cultural backgrounds, various cultural preferences can emerge that are important to take into account. Despite the fact that there are many studies that shed light on the subject of culture and the end of life, it appears that care staff have a lack of knowledge and understanding regarding how to provide good end-of-life palliative care for people with diverse cultural backgrounds. The studies we found on the importance of culture in care have also invariably taken as a point of departure that the staff represent the culture of their own country, while the patient being cared for is the one who has ‘a different culture’ or belongs to an ethnic minority. This study intends to focus on the importance of culture in care by examining nurses’ encounters with patients from cultures other than their own in end-of-life care. This is regardless of whether it is the nurse or the patient who has ‘a different’ cultural background.

The aim of the study was to highlight nurses’ experiences of the meaning of culture when caring for patients at the end of life in specialized palliative care.

The study had a qualitative descriptive design [ 21 ] and used individual interviews to highlight the nurses’ experiences [ 22 ]. The Standards for Reporting Qualitative Research (SRQR) checklist was used [ 23 ].

Setting and participants

The study was conducted within care facilities that provide specialized palliative care in western Sweden in both inpatient palliative care units and care teams that provided specialized care in patients’ homes. For the study, strategic sampling and the snowball method were used in combination [ 21 ]. The inclusion criteria for participating in the study were that one had to be a nurse with at least two years of work experience and had to have worked in specialized palliative care. A total of twelve nurses participated in the study. All participants were women between 26 and 65 years of age, and they had between 2 and 32 years of professional experience as nurses. Four of the nurses had specialist training in palliative care, three in oncology care, one in intensive care, and four had basic nursing training. Two of those with a specialization in palliative care also had specialization in oncology care. Four of the participants came from palliative consultant teams, two from palliative resource teams, three from advanced health care in the home, one from hospice and two from the palliative care department at a hospital.

Data collection

The head managers for a total of six care facilities for various forms of specialized palliative care in western Sweden gave permission to interview nurses within their operations during working hours. The managers forwarded the information letter about the study to nurses at their workplace. Five nurses who were interested in participating were recruited in this way. Through contact information found in the information letter, they contacted the first author to schedule an interview. To recruit additional nurses, the snowball method was used. Nurses from the same care organization that RM works in and from her network spread the information letter about the study and the possibility to participate. This resulted in seven nurses who were interested in participation and met the inclusion criteria. Contact was made with interested nurses to book the interviews. The interviews were conducted by RM during the period February-March 2022. Ten of the interviews were conducted digitally, and two were conducted at the nurses’ workplaces. They were conducted in secluded, undisturbed premises, which the participants themselves selected and during time points that were selected based on their activities. A semi-structured interview guide with questions based on literature in the field and the authors’ clinical experience was designed for present study [ 22 ]. The interview questions and interview procedure were tested on two of RM’s colleagues who were nurses but were not participating in the study, after which the questions were slightly revised based on their comments.

The interviews began with the same broad, open question ‘Can you tell me about your experience of the meaning of culture when caring for patients at the end of life?’ The question gave the participants the opportunity to speak freely about and define the concept of culture according to their own understanding, so as to describe their experiences in their own words. Follow-up and in-depth questions of the type ‘Can you tell me more about…?’ were asked. The interview guide was used to ensure that all questions were covered but not in any specific order. This was to be compliant with what the nurses told us while also keeping the thread of the interview on track. During the interviews, the interviewer made every attempt to be open to what the nurses told, thereby capturing as broad a description of the area as possible. The participating nurses’ own sense of what culture is was not questioned since it was their experience of the meaning of culture in care that was of interest. When the interviews with the nurses were conducted, the material was judged to have a rich variety and a depth that was sufficient for answering the aim. The interviews were recorded with a stand-alone digital tool, and after the interviews, they were transferred to secure storage in a password-protected computer. The recorded interviews were transcribed verbatim by the interviewer and lasted 314 min (mean 26 min). In all, they comprised 78 pages of transcribed text.

For the study, qualitative content analysis with an inductive approach, according to Graneheim and Lundman’s description [ 24 ], was used since this method is well suited to analyse the content of interview data. The analysis began with both authors reading through the interviews first as a whole and then each interview separately to get a grasp of the whole. Then, the processing of what the interviews told us began with RM extracting meaning units from the text related to the purpose of our study. The meaning units were then condensed and provided with codes that described their content, resulting in a total of over 400 codes. The codes were sorted by the authors into preliminary categories according to similarities and differences until consensus was reached. Some codes fitted into several categories, and this was resolved by the authors returning to the text of the interviews to be able to sort these codes into the category where they best belonged. Finally, the results came to consist of two categories, built up of a total of seven subcategories. For example, of the analysis process, see Table  1 .

Ethical considerations

The study was carried out in accordance with the guidelines for empirical studies in Sweden. Permission to interview the nurses was given by the respective ward manager. No formal approval from the Regional Ethics Review Board was required according to The Act concerning the Ethical Review of Research Involving Humans: SFS 2003:460 § 3 [ 25 ] for this kind of non-interventional study involving healthcare professionals, which does not involve any risk of processing sensitive personal data; hence, no ethical review was made since the act does not apply to research not covered by the law.

Nevertheless, our work followed the ethical principles for medical research in the Declaration of Helsinki [ 26 ]. The nurses were given both oral and written information, and written informed consent was obtained. The voluntary nature of participation and the possibility of withdrawing without prejudice were explained. The identities of the nurses are protected by the confidential handling of data in accordance with EU regulations [ 27 ], and the results are described in such a way as to conceal the identity of any individual nurse.

The authors took into consideration the fact that the interviews could be experienced as stressful or that the nurses could take offense. It could be that during the interview, they would be reminded of situations that were perceived as challenging or where the patient was not perceived as having received good care. The interviewer was attentive to situations such as these arising and was prepared to give the participants the opportunity to take a break or discontinue participation if they themselves wished to do so, without having to provide any explanation. This situation did not arise during any of the interviews. The data are safely long-term stored and will be archived according to the Archives Act [ 28 ].

To give a common ground for understanding of the subject, the nurses described how they apprehended the concept culture, as people living their lives at different stages and in different family situations, with different gender identities and social life patterns. Furthermore, it was considered that culture can imply duty and responsibility as well as influence how people relate to situations around the person with an illness.

It also emerged that there were differences in care cultures between different care organizations, such as between hospice, hospitals, and home health care. There are for example differences between the ways the various care organizations view the number of visitors allowed to visit the person who was dying, at the same time. The nurses emphasized that culture, ethnicity, and religion are connected and influenced by each other but still separate entities. This meant that culture was not dependent on citizenship, but people within the same society, group, and municipality could have different cultures.

...The (difference in) culture can be greater between two people who grew up in the same municipality than between someone who comes from the Middle East and someone from South America... (Nurse 12)

There was an awareness among the nurses that culture as a phenomenon influenced and determined how everyone involved related to end-of-life care and nursing. The nurses stated that it was important to understand and take into account how culture can affect the care of the patient and their family members. They described culturally rooted traditions as playing a major role in the way the patient wanted to spend this last phase of life. The nurses stated that it was important to be aware of this so that they did not miss things that from a cultural perspective were considered important for the person being cared for.

Main results

From the interviews with the nurses, two categories concerning their experiences of the meaning of culture when caring for patients at the end of life in specialized palliative care emerged, Awareness of the impact of culture on nursing and Culture’s impact and influence on the nurse’s mindset and approach , see Table  2 . These were built up of seven subcategories which highlight the nurse’s experience of the importance of culture when caring for patients in specialized palliative care at the end of life. The results are presented through quotations under the respective category and subcategory.

Awareness of the impact of culture on nursing

The nurses had an awareness of the impact of culture on nursing. They told about Language as a barrier to meeting cultural needs and also described the Influence of culture on family roles as an important factor in care. Culture-specific beliefs about information and treatment also had an impact on the nurses’ work as did Beliefs about dying and death based on cultural identity.

Language as a barrier to meeting cultural needs

The nurses said that having a common language to communicate and transfer information in the encounter with patients and family members was a significant factor for understanding and gaining knowledge of the patients’ cultural identity and wishes. The nurses used interpreters to help with conversations if they did not speak the same language as the patient but there were occasions where access to an interpreter was lacking. The nurses said that on these occasions, they were unsure whether family members who were used for interpretation were influenced by their cultural beliefs and truly interpreted what the care organization and the nurse wanted them to convey. Other situations the nurses mentioned were when the patient, despite the use of an interpreter, could not express culturally specific wishes due to their condition, such as reduced level of consciousness, confusion, speech impairment, etc. This was considered a limitation, as the nurses thus had too little knowledge of the patient’s cultural needs and wishes regarding care at the end of life.

I had very little knowledge of his worries and his concerns or what he preferred and what he’s been like before his illness, and what he wants his end of life care to be like (Nurse12)

The nurses believed that limitations in language, affecting communication and understanding each other, made it more difficult to create a direct relationship with both patients and their family members. This could result in the patient’s and the family members’ cultural wishes not being taken into account to the same extent, as they would be for patients who could communicate directly with the nurses. This could result in family members not receiving information or not having had the opportunity to provide information on a par with the situation for those who could communicate directly with the nurses. The daily dialogue that the nurse had with family members and patients was limited in situations such as these.

Influence of cultural family roles

According to the nurses, the family members had a major role and influenced how the caring and care for the dying patient was given. Such things concerned for example contributing with information about how the patient wanted care to be carried out if the patient could not give that information themselves due to their condition. Family members were seen as the means that provided the possibility to fulfil the patient’s wishes at the end of life. The nurses said that there were different roles played by family members in different cultures and that it could be important to be aware of this when caring for patients at the end of life. In some cultures, the man is considered the head of the family with a responsibility to be strong and not show signs of weakness, even though this person could be affected by illness himself. In other cultures, it was the eldest son or another family member who took on a role as spokesperson. The spokesperson’s role was to guide the family and start different processes regarding death that were part of the person’s culture. The nurses said that the spokesperson was an asset for both the family and the nurse. It was through this person who family members could gain more confidence in the care provided.

In different cultures […] there is usually someone who has the main responsibility in the family. […]. It can be the eldest sibling, the father, the mother or another relative. Then, I try to talk to […] the person who has the main responsibility for when I can justify that I do so […] it becomes easier and [in this way I can] get the rest of the family on board (Nurse 2)

The nurses collaborated with the family members as an aid in gaining understanding about routines, rituals, customs, and religious beliefs regarding death to be able to fulfil the patient’s culturally based wishes.

Culture-specific beliefs about information and treatment

In different cultures, there were a number of different beliefs that affected patients and family members’ views and that could influence and have significance for the care that the nurse provided at the end of life. Nurses often encountered situations in which culture-specific notions about information received had to be handled. The nurses understood and were well aware that patients and family members could have different ways of relating to information about illness. Sometimes the patients themselves did not want to tell their family members about their illness. Others said that the information provided by the nurse should be given to the family members initially, and then the family would decide how much information the patient was allowed to receive. The nurses believed that family members had good intentions and wanted to protect the patient by withholding the truth. Other reasons could be that family members felt that there was no point in telling the patient, as it meant that the situation would worsen for the dying person. The nurses described not being able to inform the patient about their illness as a barrier that could affect the care of the patient. Although the nurses assumed that many fatally ill patients were aware of their situation, this was unspoken. It was still considered problematic when the nurse did not know the patient’s own wishes at the end of life. The nurses struggled between their own, the family members’, and the patient’s culturally specific beliefs about not providing information concerning the disease and the laws in Sweden regarding the right to receive information about one’s condition. Despite the fact that there were differences regarding the handing over of information, the nurse had to adapt according to how much information could be provided, based on the situation.

The family should be told first and decide what is appropriate for the patient to find out. And the cases where we have had consent or what shall I say. Where the patient has said it is ok [that the family is the one who gets the information]. Then it feels ok. (Nurse 6)

The nurses also mentioned that at end-of-life, pain-relieving drugs were something they provided daily in their work. In encounters with patients and their family members, they could face different cultural beliefs about morphine as pain relief. The perception was usually negative and led to patients and family members deciding that the patient should not receive morphine as pain relief, based on their cultural mindset.

in that culture morphine is considered a drug and as religious people and believers they do not want to accept the pain relief. In other cultures, morphine is associated with something given to hasten death. Therefore, patients and relatives do not want morphine to be given. (Nurse 2)

According to the nurses, different cultural views between family members, patients, and healthcare staff could exist on what benefits the patient, from the point of view of nursing in palliative care. They said that both patients and family members in some cultures wanted full life-sustaining measures and treatments right up to the end of life, mainly in areas when it came to nutrition and intravenous fluids. The nurses stated that it was because nutrition and food were seen as a symbol of life, hope and recovery, but it could also be linked to religious beliefs in some cultures.

Beliefs about dying and death based on cultural identity

Other beliefs that the nurses noticed in their encounters with people from diverse cultural backgrounds had to do with the differing views on dying and death. God and religion had a great influence on how people at the end of life behaved and talked about death. Some considered it taboo to talk about death and illness, while others left all responsibility for their future to religion and a God who decides. Differences regarding views about death led to difficulties in encounters, and this affected nursing. When the nurses in their professional role tried to inform and have a discussion about the fact that the end was approaching, the patient and family members did sometimes not want to know this.

We want to talk about death, but it is not we who decide when death will happen, it is God then. Then there can be a bit of a clash in the conversations there. (Nurse 7)

Conceptions of dying and death were not always dependent on having differing cultural backgrounds. Differences in perceptions were also found in patients with the same cultural background as the nurse.

Culture’s impact and influence on the nurses’ mindset and approach

Through analysis of the data, we showed that the nurses saw the Challenges and strategies that culture brings about . They clearly stated that a Person-centred approach gives culture a voice and told about how they used that strategy in care. They also said that Cultural diversity deepens the nurses’ perspective and described how they also learned from colleagues through talking about the experiences had by other members of the nursing team.

Challenges and strategies brought about by culture

There were a number of challenges and cultural clashes that the nurse faced in the end-of-life conversations with people from diverse cultural backgrounds. The challenges arose when the nurses found themselves in situations that revolved around the care of the dying patient, which did not correspond to the palliative care approach and the nurses’ obligation to comply with the Sweden’s laws and regulations. It emerged that it was difficult for the nurse to respond to different emotions that arose in the dying patient, such as worry, pain, suffering, and not being able to provide a sense of security when different cultural beliefs came into conflict with each other.

… The last weeks of this person’s life […] she said why am I in more pain why am I worried. Why don’t the meds help? Help me, help me. She was very […] worried and then you weren’t allowed to say anything (about her dying) …(Nurse 10).

Sometimes situations arose where the patient did not want to be cared for by the opposite sex. This could be a challenge that depended on the composition of the nursing team. It could also be difficult when the nurses could not accommodate the patient’s cultural desires to avoid discriminating against the health care staff of the opposite sex who was scheduled to care for the patient.

Various challenges and cultural clashes in encounters in care that the nurses described gave rise to feelings of frustration, helplessness, hopelessness, and powerlessness. The nurses felt that limitations occurred when carrying out examinations and assessments because the doctor or nurse was of the opposite sex to the patient or the patient was fully clothed, and items of clothing could not be removed. This combined with having little knowledge about the patient resulted in them not being able to perform their tasks in the way they considered best and as they were required to do.

The nurses dealt with the challenges and emotions that arose through different strategies. Some sought support through reflection and venting their worries with the nursing team. Others became solution-oriented to make the best of the situation and reach a middle ground together. The nurses also received help from other people around the patient, such as doctors who had more authority than the nurses or the person who represented the family, to reach everyone involved.

Person-centred approach gives culture a voice

The nurses believed that regardless of the patient’s cultural background and their family, it was essential that the point of departure always remained the dying person and their wishes, in order to meet their nursing needs at the end of life. The nurses emphasized that the patient was cared for and given good care regardless of their cultural background. They said that it was important not to assume that patients wished to be treated in a certain way, based on what the nurses knew about their culture in general, but rather to base care on how each individual patient expressed their wishes, given their unique situation. By being open-minded and starting from what was important to the person, things in the person’s culture they considered important was highlighted. The nurses adopted a person-centred approach to clarify what the person considered important to have in focus and in that way various culturally specific wishes could be fulfilled, including practical administrative issues.

That a paper death certificate is needed, because we send these digitally to the tax office and it is there, but the imam needs it on paper and in hand. Then, we have to go out quickly and find this certificate and ask the doctor or the secretary to print it out and put it in an envelope. We are not allowed to send it by post, so we must hand over the certificate itself. (Nurse 11)

The nurses wanted to do a good job and tried to accommodate cultural differences, showing consideration by respecting culturally informed wishes as far as possible and doing so based on the possibilities within healthcare. Respect could be made possible by listening and taking in the wishes of both patients and their family members. Respecting their choices and wishes in different situations at the end of life, even though the nurses, family members, and the patient did not always agree. The nurses emphasized that the patient’s will and wishes were primarily in focus in situations where there were different views among family members regarding the patient’s care. The nurses believed that respect for cultural needs can be shown by asking the right questions, so as not to step on anyone’s toes, and by letting the patient be involved in the decisions that are made. To provide good care, the nurses worked from a holistic perspective and by creating a trusting relationship. The nurses took the time to listen to the person’s life story, and family members’ views were also taken into account. The nurses stated that an established trust made it easier to get the patient and family members to be compliant and get everyone on board with the care provided. Through asking questions, the nurses found out about the patient’s life and worldview, spiritual beliefs, culturally specific wishes, and approach to different situations concerning the end of life.

Cultural diversity deepens the nurse’s perspective

According to the nurses, the encounter with patients and family members from a different culture than their own, meant that they were enriched in terms of knowledge in several ways. The situations in which the nurses were involved led to recognition, knowledge, and better preparedness for similar situations in the future. In addition, the nurses described that their newly acquired knowledge of how culture can influence nursing and care, including rituals, customs, traditions, and ways of thinking about death and dying in the end-of-life phase within specialized palliative care, contributed to personal development. Here, family members could play an important role.

… It may be that their children have lived in Sweden and grown up in Sweden who […] come and say when this will happen, we will have to pay attention to this and this. Because they know both cultures in a different way” (Nurse 3).

This new knowledge and awareness resulted in the nurses becoming better caregivers both as individuals and as a team. They said that it is easy to get stuck in old routines and ways of thinking, and therefore, it was rewarding to learn about other people’s cultural beliefs differing from one’s own way of thinking. It emerged that the nurses were aware of and reflected upon the fact that everyone carries different prejudices with them. They tried to be open-minded and challenge their beliefs through an increased awareness of their own prejudices, trying to keep them at bay. They described that having an understanding of their own and the patient’s culture, as well as getting into the mind-set of others, were strategies used to avoid prejudice. Furthermore, the nurses described being influenced by diverse cultures can at the same time be a strength that leads to increased knowledge and helps them learn from each other’s cultures.

The focus of this study has been on the meaning of culture in healthcare. For this, interviews with nurses working in specialized palliative care settings were performed. In the interviews, close attention was given to the descriptions of their encounters with patients from cultures other than their own, in end-of-life care. The nurses were aware that culture influenced and affected end-of-life care. They had a broad definition of the meaning of culture and did not equate culture with ethnicity, religion or language, even though these are stated to be closely related [ 9 ].

The culturally bound notions that came up were areas that the nurses paid attention to and that, according to them, could affect end-of-life care for all concerned. Different conceptions regarding the reception and transfer of information about illness were described as a difficulty for the nurses, such as when family members did not want the nurse to inform the patient about their illness. The nurses considered this to be contrary to various laws in Sweden regarding the patient’s right to participate in decisions concerning their own care [ 29 ] and to receive information about their health status to promote the patient’s self-determination [ 30 ]. It also went against the nurses’ preferred way of working, based on the palliative care ideology [ 31 ]. Similar findings are described in the study by Bellamy & Gott [ 12 ], highlighting the problem of different approaches to information transfer about illness.

Withholding information from the dying person was perceived as a challenge for the healthcare staff, as it contradicted Western culture’s view of the patient’s autonomy, where information about one’s own illness is an important part of enabling informed decisions [ 31 ]. The basis of palliative care in a Western approach can here in parts be seen to clash with approaches in other parts of the world as information to the patient about illness, and their situation, is not considered an important value in all parts of the world as for example in Asian countries [ 16 ]. A growing awareness of the importance of cultural diversity in palliative care exists, and the consensus-based definition of palliative care developed in a collaboration between 88 countries [ 8 ] can be seen as part of this.

Culture’s impact and influence on the nurse’s mindset and approach

Person-centred care focuses on providing individually adapted care based on the person’s unique situation, where the patient and family members are involved. The goal is to make visible and meet the person’s social, psychological, existential and physical needs [ 31 ]. The nurses in this study strove to identify the meaning and importance of culture in nursing for both the patient and family members by paying attention to the expressions of the patient’s culture. The nurses adopted a person-centred approach where the starting point is to see the individual person and their family members and involve and adapt the care according to their needs and condition. Person-centredness as a theory serves as a basis and holistic approach to care, where cultural needs are also included [ 31 ]. One of the starting points in person-centred care in the palliative context is that the patient shares their life story [ 31 ]. This has the potential to make the importance of culture for the person visible.

To improve understanding and provide a better preparedness to work with cultural issues that may arise when patient and family preferences differ, education might be helpful. Several studies indicate that courses on how to provide culture-specific care at the end of life are requested by healthcare professionals [ 32 , 33 , 34 ]. Although challenges, hardships, and difficult emotions emerged in the present study, the nurses did not spontaneously describe a need for training or courses regarding culture-specific care. A possible reason could be that the nurses who participated in the study worked in specialized palliative care, which requires advanced knowledge and training in nursing and is characterized by frequent encounters with complex practical situations. It is also possible that if a direct question concerning the nurses’ need of education would have been posed, the nurses might have affirmed such needs. A systematic review of cultural competence interventions have shown that knowledge, attitudes/beliefs, skills, behaviour and confidence may improve from such interventions, independent of their length, duration and type of approach [ 35 ]. However, evidence that the interventions also had an impact on and improved health care outcomes such as patient satisfaction and patients trust was weak. Self-reflection and interprofessional collaboration have also been suggested as central to implement cross-cultural training in palliative care [ 33 ].More research seem to be needed focusing not only on knowledge gain in the health care professionals but also on the interventions possibilities to make a positive difference in care.

The study showed that the nurses who worked and met people at the end of life, with different cultural backgrounds than their own, made great efforts to meet cultural needs based on the wishes of patients and family members. Though we did not study their success in this and we only have their words to support this strive. One possible reason for their efforts might be that that they saw the limited time left as valuable to all involved in the face of impending death. Death touches us all, since we are all going to die eventually, regardless of background. In palliative care there arose challenges, varying approaches, and different beliefs when caring for people with diverse cultural backgrounds. The way the nurses relate to them can contribute to an understanding of the patients’ situations that can be the basis for providing a good, dignified death [ 7 ] on equitable terms [ 4 ].

The results showed that the nurses reflected upon their own prejudices and culture and the effects thereof on professional encounters. This is, according to Leininger [ 1 ], part of the mindset for developing cultural competence. To provide and accommodate culture-specific care for people with cultural backgrounds different from the nurse’s, it is required that the nurse possess cultural competence that contributes to the nurse’s professional and holistic caregiving [ 6 ]. The concept of cultural competence can be interpreted as difficult to define and not easy to apply clinically in nurses’ daily work. This is supported by findings from a scoping review which showed dissimilarities in definitions of cultural competence in the included studies [ 35 ]. People with diverse cultures and patients in need of palliative care are constantly increasing [ 2 , 3 , 7 ]. Therefore, this is an urgent topic for everyone working in palliative care today. Through shared reflection in the nursing team, knowledge and experience about what is considered significant at the end of life in different cultures can be obtained from each other, leading to a joint learning [ 36 ]. This has the potential to bring the nurse one step closer to providing equal, high-quality care for all patients. Taking cultural wishes into account is also one step towards the Sustainable Development Goals 3 and 10 set by the UN [ 4 ]. Further research is suggested on of the meaning of culture at the end of life in specialized palliative care from the patient’s own perspective where aspects such as agency and integrity might be specifically interesting to explore.

Strengths and limitations

The study captures specialized palliative care nurses’ views of the importance of culture for palliative care at the end of life. The semi-structured interview provided the opportunity to cover all of the questions in all of the interviews. Even if the questions were not always asked in the same order, they were responsive to the participants’ narratives. Ten of the interviews took place digitally due to the COVID-19 pandemic. This can be seen as a strength since it made it possible to reach out to participants in a wider geographical area but also a weakness since it is more difficult for the interviewer to pay attention to the participant’s body language and reactions when interviews are not conducted face to face [ 22 , 37 ]. There might also be a negative impact on the relationship when interviews are digitally performed. Such things as technical aspects and the feeling of distance can play a role here [ 37 ]. The researcher who performed the interviews were aware of this and strove to create an openness in the interviews. The participants who were interviewed digitally openly told about their experiences and shared both perceived difficulties and shortcomings, indicating a permissive climate. Also no technical problems occurred during any of the digitally performed interviews. All nurses chose the form of interview themselves and the nurses who were interviewed digitally possibly chose that form since they felt comfortable and familiar with that. A lot of meetings in their care practice were performed digitally during this period, due to the COVID-19 pandemic.

The choice of participants and the method of collection are also important elements in assessing the validity of the study [ 24 ]. Both the strategic selection and the snowball method ensured that participants who were genuinely interested in the topic were included. The participants in the study came from various organizations that conducted specialized palliative care and had extensive experience. Several were also specially trained in palliative care or other areas. The nurses who participated had varied cultural backgrounds; there were nurses with both Swedish and other cultural backgrounds. These qualifications meant that data of rich depth and breadth were obtained from participants who had experience with end-of-life care, where the nurse and patient have different cultural backgrounds. The impact of the participants’ interest in the topic is unclear but possibly gives ground for more developed reflections coming forth than participants with less interest within this topic would have provided. We did not ask the participants about their cultural background or how they defined their own cultural belonging, which can be seen as a limitation. This was a conscious decisions since we wanted to focus on the meeting between the nurse and a patient with differing cultural backgrounds. This can be seen as a strength since that the focus has clearly been on the encounter between the nurse and persons with different cultural backgrounds, regardless of whether it is the nurse or the patient who represents the country’s culture, in this case, the Swedish culture. This has provided a broader and more nuanced picture of the importance of culture for end-of-life care than is usually found in research.

The validity of the study depends on trust in the researchers interpretation of the data and the measures taken to demonstrate this [ 21 ]. The validity is strengthened by using the content analysis process according to Graneheim and Lundman [ 24 ] for the manifest content of the data, which is carefully described in the Methods section. In the results, quotations are used to provide the opportunity to assess the study’s validity and categorization. The first author carried out the initial analysis, and this was then discussed with the co-author for reflection regarding the choice of meaningful units, coding, and categorization. Disagreements were resolved through discussion until a consensus was reached, in accordance with descriptions by Polit and Beck [ 21 ]. The degree of objectivity in the text is described affirmatively by the author. The two authors’ different experiences in palliative care – RM from specialized outpatient palliative care in an area with high multicultural representation and ÅR experience in general palliative care in hospital – as well as our differing cultural backgrounds constitute a strength. This meant that our own pre-understandings were balanced by the other’s pre-understanding and not allowed to take over in ways that were not supported by data.

Estimation of the study’s transferability of the results to other groups and contexts is facilitated by an accurate and clear description of the context, selection of participants, data collection and analysis process, which we strived to provide. The participants in the study came from various care units, had varied long and short experience of specialized palliative care, and had a variety of cultural backgrounds. One limitation is that all of the participants were women, but unfortunately, this represents the gender distribution of nurses too well. Overall, we maintain that this contributes to the transferability of the results to other similar facilities that provide specialized palliative care, both in Sweden and internationally.

Providing culturally competent palliative care is a major challenge. In the values and cornerstones of palliative care, there are seldom prescribed routines or methods for how the nurse should handle diverse cultural beliefs that may differ from the nurse’s own. To possess knowledge of the importance of culture in end-of-life care can lead to a reduction in generalizations and preconceived opinions. Instead, it can lead to increased awareness and contribute to knowledge and understanding on the part of the nurse who meets with and cares for the patient and their family members with a cultural background other than their own. These patients are already in a vulnerable situation when they are cared for at the end of life.

Having a person-centred approach as a strategy as the nurses in the present study did, can help to more easily manage the situation and provide care on equitable terms. The knowledge that encounters with people with different cultures brings about, leads to nurses being better equipped to provide improved palliative care, where cultural needs are also taken into account. With experience and new knowledge, the nurse becomes a more professional caregiver.

In summary, it can be difficult for nurses to have knowledge of all the different cultures they encounter since culture is not something that is permanent or unchanging but can vary and change as a result of migration, aging populations, and cultural blends. Being aware that culture is important and possessing sufficient knowledge of the way it can affect nursing in palliative care, helps the nurse meet the patient’s needs on a physical, psychological, relational, existential, spiritual, and cultural level. A person centred approach is suggested as a strategy to achieve this. This has the possibility to contribute to that good palliative care is provided based on recognition of and respect for the cultural values, convictions, and belief system of the patient and their family members. This ultimately ensures equitable care on terms that respect cultural diversity in accordance with the goals for sustainable development.

Data availability

The datasets for this study are not publicly available because of the risk that individual privacy could be compromised; however, the datasets are available from the corresponding author on reasonable request.

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Acknowledgements

The authors would like to thank all the participants and head managers’ without whose participation this study could not have been carried out.

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Contributions

The study was designed by both authors (RM and ÅR). Data were collected and initially analysed by RM. Further analysis, the drafting and revision of the manuscript, reading and approving the final draft were carried out by both authors (RM and ÅR).

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Correspondence to Åsa Rejnö .

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Ethics approval and consent to participate.

The study was carried out in accordance with the guidelines for empirical studies in Sweden. Permission to interview the nurses was given by the respective ward manager. No formal approval from the Regional Ethics Review Board was required according to The Act concerning the Ethical Review of Research Involving Humans: SFS 2003:460 § 3 [ 25 ] for this kind of non-interventional study involving healthcare professionals, which does not involve any risk of processing sensitive personal data; hence, no ethical review was made since the act does not apply to research not covered by the law. Nevertheless, our work followed the ethical principles for medical research in the Declaration of Helsinki [ 26 ]. The nurses were given both oral and written information, and written informed consent was obtained. The voluntary nature of participation and the possibility of withdrawing without prejudice were explained. The identities of the nurses are protected by the confidential handling of data in accordance with EU regulations [ 27 ], and the results are described in such a way as to conceal the identity of any individual nurse. The authors took into consideration the fact that the interviews could be experienced as stressful or that the nurses could take offense. It could be that during the interview, they would be reminded of situations that were perceived as challenging or where the patient was not perceived as having received good care. The interviewer was attentive to situations such as these arising and was prepared to give the participants the opportunity to take a break or discontinue participation if they themselves wished to do so, without having to provide any explanation. This situation did not arise during any of the interviews. The data are safely long-term stored and will be archived according to the Archives Act [ 28 ].

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Mian, R., Rejnö, Å. The meaning of culture in nursing at the end of life – an interview study with nurses in specialized palliative care. BMC Palliat Care 23 , 166 (2024). https://doi.org/10.1186/s12904-024-01493-5

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Normality and compassionate care: experiences from advanced cancer patients in their last time at home

• Bardo Driller   ORCID: orcid.org/0000-0003-3611-5080 1 , 2 , 3 ,
• Carolin Maienborn 4 ,
• Elin Margrethe Aasen 5 ,
• Adriana Kolstrøm 6 ,
• Bente Talseth-Palmer 2 , 7 , 8 ,
• Torstein Hole 2 , 10 ,
• Kjell Erik Strømskag 9 &
• Anne-Tove Brenne 3 , 11  

BMC Primary Care volume  25 , Article number:  245 ( 2024 ) Cite this article

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Many cancer patients prefer to receive palliative treatment at home, as it allows them to be in a familiar and comfortable environment. Integrating Advance Care Planning (ACP) into routine practice in primary healthcare helps patients and their relatives prepare for end-of-life (EoL) care in accordance with patients’ preferences. This includes the option to spend their final days at home if desired. The aim of this study was to gain insights from experiences of advanced seriously ill cancer patients at home while receiving palliative treatment and being engaged in ACP within primary healthcare settings.

This study employed a qualitative design, utilizing individual, semi-structured interviews that were analysed through reflexive thematic analysis, employing an abductive approach with a latent-level focus. The study included interviews with 12 participants with cancer who were receiving palliative care, had an estimated lifetime under 3 months, and had undergone an organized ACP approach in primary healthcare, documented with a palliative plan.

Participants emphasized the importance of (1) Preserving normality at home , maintaining a sense of routine, comfort, and familiarity in the face of present and future challenges. The top obstacles for success identified by participants included (1a) The challenge of deterioration and the dual aspects of (1b) The value and burden of family caregivers . Cancer treatment placed a significant demand on patients due to side effects. Family caregivers played a crucial role for participants, providing support in daily life and serving as a key factor in the overall decision to which extend they are able to involve in support and care at home in the future. (2) Compassionate health care personnel (HCP) made a difference by fostering a culture of understanding participants’ concerns, fears, and preferences, which was a key element that built and maintained trust for the participants. (3) Preparing for the future , especially EoL discussions initiated by healthcare personnel, was deemed important but, at times, uncomfortable for participants as it confronted them with reality. Guidance from ACP provided them with a sense of certainty and control.

Preserving normality at home, along with the desire to stay at home for as long as possible, is a crucial goal for advanced cancer patients. Consistent professional communication and care in primary healthcare play a key role in building and maintaining trust, as well as fostering a sense of certainty and control for the participants.

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Introduction

Many cancer patients undergoing palliative treatment express a preference to spend the majority of their remaining time in the comfort and familiarity of their own home [ 1 , 2 ]. Experiences at home during an advanced stage of illness are unique and complex, varying widely depending on the level of support available and individual preferences and circumstances [ 3 ]. Family members or caregivers often play a significant role in providing care at home, offering a sense of security and peace that can enhance the overall well-being of patients [ 4 ]. However, balancing the demands and satisfaction of caring for someone in the advanced stages of illness at home can be challenging [ 5 ]. The involvement of family caregivers in palliative care may not always align with the magnitude of their responsibilities [ 6 ]. Home-based care for advanced cancer patients, with access to community resources and support, typically involves coordination among various healthcare professionals [ 7 ].

While there is a broader body of research exploring the experiences of healthcare personnel (HCP) and family caregivers, only a limited number of studies have examined the end-of-life (EoL) experience of patients in the context of home as their place of living and receiving care [ 8 , 9 ]. This study aims to address this gap. Gaining more knowledge about patients’ experiences can contribute to a better understanding and empathy for individuals at the EoL, potentially assisting healthcare personnel in providing compassionate and patient-centred care.

Cancer patients undergoing palliative treatment and their families may engage in discussions about EoL planning. Advance care planning (ACP) is defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and healthcare providers, and to record and review these preferences if appropriate [ 10 ]. ACP is an ongoing process that includes reviewing the patients´ current medical condition and prognosis [ 11 ]. ACP has evolved over time, emphasizing patient-centred care, informed decision-making, and focusing on communication rather than on specific interventions or outcome [ 12 , 13 ].

Despite an increasing interest in ACP, research suggests that the uptake of ACP discussions in clinical practice is low and may occur at inappropriate times [ 14 , 15 ]. This could be attributed to the fact that participation in ACP can be accompanied by unpleasant feelings, although many patients report benefits from advance care planning as well [ 16 ]. The purpose of ACP often involves preparing for incapacity and preparing for dying [ 17 ]. Patients and family members may perceive fear of discussing their relative’s EoL care and uncertainty about the remaining time as barriers to engaging in ACP [ 18 ]. This suggests a need for ACP to be personalized in a form that is both feasible and relevant at moments suitable for the individual patient [ 19 ]. Patients often prefer HCPs to initiate necessary communication, emphasizing the role of personal relationships with HCPs as part of a social process [ 16 ]. In usual practice, integrating day-to-day care planning with ACP can be challenging, and ACP documentation may be difficult to find and use [ 20 ]. Most studies focus on evaluating patients’ experiences with ACP conversations rather than the entire ACP process, and these studies often occur in the early stages of the ACP approach [ 21 ]. The entire ACP process involves documenting preferences, sharing the palliative care plan between the patient and HCP, reviewing and updating the plan, and integrating it into care planning.

The aim of this study was to acquire insights into the experiences of advanced seriously ill cancer patients at home while undergoing palliative treatment and engaging in ACP in primary healthcare settings.

The research question guiding this study was: How do palliative cancer patients experience their last time at home?

Study design

This study employed a qualitative design involving individual, semi-structured interviews. The data were analysed using reflexive thematic analysis, employing an abductive approach with a latent-level focus.

Study setting

The study was carried out in a rural healthcare area in West-Norway with an approximate population of 100,000 residents. The municipalities within the catchment area maintained collaborations with two local hospitals. In addition to the assistance provided by general practitioners (GPs) and home care nurses, community cancer nurses offered additional support to both patients and family caregivers. Community cancer nurses typically served as the first contact for patients accessing community care. They played an important role in coordinating essential care services and were at the frontline of communication regarding EoL care. Cancer patients, based on their needs and symptom burden, could avail themselves of the services provided by the hospital-based palliative care (PC) team through referrals from either hospitals or primary healthcare.

Since June 2018, community cancer nurses in our region were able to provide organized ACP conversations and summarizing palliative plans to all patients with life-limiting diseases, including those with non-curable cancer. They utilized actively supportive tools such as a standardized template for the palliative plan within the electronic patient journal (EPJ), informational flyers for both healthcare providers and patients, and an information video available on the dedicated website ( www.palliativplan.no ).

Collaboratively with the GP, community cancer nurses decided on the timing and necessity of offering the ACP conversation to the patient, with the option of conducting it at the patient’s home. From a prior assessment of 125 ACP conversations in primary healthcare, we observed that approximately two-thirds of these discussions involved the presence of the GP, with the majority of the remaining conversations including a physician from the hospital-based PC team. 15% of the ACP conversations occurred without a physician present. In such instances, community cancer nurses obtained necessary medical information from specialist healthcare, often as a result of consultations with the hospital-based PC team during hospital admissions or visits to the cancer outpatient clinic [ 22 ]. During the conversation, patients shared their wishes, their perspective on their current health condition, and responded to questions about their healthcare priorities. The GP then confirmed the final version of the summarizing palliative plan, which could be shared with any future healthcare providers upon request. The plan was subject to reassessment and updates as needed, particularly in the case of significant changes in the patient’s medical condition [ 22 ].

Analysis and interpretation of interview data

The analysis, conducted from March to October 2023, followed these steps [ 23 ]:

Get familiar with the data / generate initial codes.

Search for patterns, themes, or subthemes in the codes.

Review themes (and subthemes).

Refine, define, and finalize themes.

Produce the report.

Reliability checks were consistently performed within the researcher team throughout the analysis and interpretation process to verify the present findings and ensure the accuracy of the study.

Our research focused on understanding the subjective experiences, views, and opinions of the participants, employing reflexive thematic analysis to reveal patterns and meanings in the data. The analysis entailed constant navigation between the entire dataset, coded data extracts, and the analytical process. A reflexivity journal documented our coding and analysis process. Codes assigned to data extracts were organized into preliminary themes and sub-themes using an Excel spreadsheet, linked to their source in the transcripts.

We adopted an abductive approach, analysing data without preconceptions or a pre-existing coding frame, generating potential explanations or hypotheses based on observations. These were compared to existing theory. Literature review in the early stages of analysis was limited to maintain an open-minded approach. The latent-level approach involved interpreting and thematising meanings to theorize social and structural conditions, supporting the conclusions provided.

The findings were presented with data extracts to highlight key points, and discussions among all authors ensured a comprehensive consideration of perspectives. Themes and subthemes were refined after reviewing individual thematic coding results, elevating them to a certain abstraction level to interpret the participants’ contributions (Table  1 ).

Sample and requirement

A variation sampling strategy was employed to ensure diversity in age, gender, and cancer diagnoses among male and female participants. The inclusion criteria were as follows: (1) advanced non-curable cancer in a palliative setting with an estimated survival time of less than three months, (2) residing in a defined rural region in West-Norway, where ACP conversations and palliative plans were offered in primary healthcare since 2018, (3) completion of the entire process of an organized ACP conversation with a summarizing palliative plan in primary healthcare, and (4) ability to communicate in Norwegian.

Community cancer nurses in primary healthcare informed the study physician (BD) about potential participants. The study physician confirmed eligibility, occasionally collaborating with an oncologist to estimate survival time (Table  2 ).

Data collection and interview guide

Data were collected through individual semi-structured interviews conducted between April 2021 and September 2022. It’s noteworthy that the participants were not receiving care from the interviewing study physician or nurse. The interviews aimed to explore participants’ feelings, priorities, experiences of serious illness, home care, and the dynamics of their everyday life. Participants shared insights into their interactions with healthcare professionals, including their experiences with ACP and palliative plans.

The interview guide, developed by two authors (BD, AK), drew on their prior knowledge of the topic and focused on participants’ key experiences. Adjustments were made to the guide after the initial two interviews, giving more consideration to the relationships with healthcare personnel and family dynamics. The guide initiated with open-ended questions, allowing flexibility in the order of additional questions. This approach facilitated a comprehensive exploration of patient experiences and enabled the interviewer to delve into new and significant topics raised by the participants.

The interviews were conducted by two authors (BD, AK) in either the patient’s home (11 interviews) or the hospital (1 interview). For the first two interviews, both authors participated, working together — one as the interviewer and the other as an observer, providing feedback to the interviewer afterward. Subsequently, BD conducted nine interviews alone, while AK conducted one interview alone. In three instances, the next of kin were present during the interview but did not actively participate in the conversation.

Digital audio recordings were used to collect data, and the recordings ranged in duration from 18 to 41 min, with an average length of 28 min. In one case, a participant used a data tablet for communication assistance, with the interviewer reading aloud what the patient wrote down. The inclusion of participants with diverse characteristics met the requirements for variation, involving all 12 participants. The transcriptions of the interviews were done verbatim by three authors (BD, AK, CM), and each transcription was crosschecked to ensure accuracy. Participant characteristics are detailed in Table  3 .

Ethical considerations

The study was performed in accordance with the guidelines and regulations outlined in the Declaration of Helsinki and received approval from the Regional Committee for Medical and Health Research Ethics (REK; ID 168,328) and the Cancer Department at Møre and Romsdal Hospital Trust. Participants were given both verbal and written information about the study, and informed consent was obtained from all participants before their involvement. To address potential palliative needs following the interview, the interviewer ensured that participants had access to contact the community cancer nurse and provided them with the contact information for the local hospital-based PC team.

Findings / results

The analysis resulted in three themes and two subthemes:

Preserving normality at home [ 24 ].

The challenge of deterioration (1a).

The value and burden of family caregivers (1b).

Compassionate HCPs make a difference [ 1 ].

Preparing for the future (EoL) [ 2 ].

Preserving normality at home (1)

All 12 participants expressed a strong desire to remain at home, emphasizing the importance of maintaining routine, comfort, and familiarity amidst the challenges posed by serious illness. They considered home a familiar and fulfilling environment, providing happiness and a sense of normality. Participants valued the control over their daily routines and the ability to savour simple pleasures. Emotional support and assistance from family and social connections played a crucial role, contributing to a sense of belonging.

One participant stated, “It is important for me to be together with my family and to live as normally as possible, to be with my loved ones” (P11-177). Participants viewed home as a place that boosted their self-confidence, supporting their wish for independence. This positive sentiment highlighted the significance of routine, mastery, and autonomy. However, participants acknowledged their limitations in engaging in daily activities, primarily within their physical capabilities. Home was seen as a private space with the potential for recovery from suffering. When admitted to hospital, participants appreciated to come home again to promote their overall well-being and recreation.

Expressing a preference for independence, a participant mentioned, “I prefer to be independent, prefer to manage myself, prefer to be at home. I am happy to be home” (P3-256). Participants’ sense of normality was notably influenced by the progression of their illness and the symptoms they experienced. Concerns about burdening family caregivers also played a role. One participant remarked, “It’s perfectly fine to be at home, at least when I’m as healthy as I am now, it’s worse when I’m unwell. I feel a little safer that someone from the family is around me, especially when I’m really unwell. We have found good solutions for that” (P8-42).

The challenge of deterioration (1a)

Participants encountered challenges in regaining or maintaining control over their declining physical well-being, particularly due to side effects from cancer treatment. Despite the difficulties, the strong hope for recovery after treatment and the desire for more time to live played a significant role in sustaining their resilience through suffering. One participant shared, “Two weeks ago I was just crying and crying, there are so many side effects of the medicine that they drive you crazy. But it goes well and in the end it’s amazing what can be achieved” (P3-264).

The participants underwent a process of learning to manage their symptoms and adapt to physical limitations, aiming to maintain as much independence as possible. Despite the challenges of deterioration, they sought to maintain a positive outlook and focused on aspects within their control, such as engaging in activities or managing their nutrition. Over time, participants often developed a more adaptive approach to dealing with deterioration. One participant expressed, “Being sick has become a habit. I had several challenges and generally it has gotten worse over time” (P6-28).

However, as deterioration continued, participants faced the progression of their disease, raising doubts about their ability to manage future physical challenges while remaining at home. In cases of significant physical health deterioration, feelings of frustration, sadness, and a loss of self-esteem emerged. One participant reflected on the dilemma, stating, “Maybe it’s best to stay at home, but if I get too sick to be home, then I don’t want to be here. But I don’t really have the heart to move away, I enjoy myself so much, I really love my home” (P3-234).

The value and burden of family caregivers (1b)

Participants derived significant benefits from their family caregivers, receiving emotional support and practical assistance around the clock. The presence of family caregivers not only provided comfort but also contributed to a sense of connection within the entire family. This constant support positively influenced participants’ emotional well-being and overall happiness, and they generally accepted a certain level of dependency on their family caregivers. One participant expressed their gratitude, saying, “It’s good to be home. I have a husband who is absolutely wonderful, he takes care of everything. I don’t have to think about anything at home” (P12-60).

Participants acknowledged the limitations of their family caregivers in addressing the challenges of future physical health deterioration and talked about to determine the level of involvement. They expressed their wishes and concerns especially around how long they would like to be at home in the interview situation but they rarely discussed willingness and availability to provide support with their family caregiver. However, participants expected their family caregiver to actively decide to which extend they are able to involve in support and care. One participant shared, “The wife must be involved in that, it’s not something I can decide (about being at home), it could be that she wants me gone before I want it myself, right?, before she becomes a health assistant or some other professional for me” (P7-164).

When it came to their preferred place of death, participants exhibited varying attitudes. Some had a wait-and-see approach with a desire to be at home if possible, while others had already decided to die in the hospital. Participants expressed concerns about the emotional involvement and burden they might place on their relatives as they deteriorated and approached the EoL. Some participants hesitated to be a major burden, suggesting that being at home might be the most burdensome for their family caregiver, or HCPs. One participant emphasized the importance of a positive ending, stating, “We have not yet discussed whether I will stay at home until the end of my life. I think it depends on whether there will be a nice ending, that there is no problem that would worsen the experience for the family, then it would be better to be in the hospital. The burden on those around me should not be so great” (P11-131).

Compassionate HCPs make a difference (1)

Participants conveyed a positive perception of their HCPs, emphasizing their HCPs’ compassionate and patient-centred approach. They felt that their concerns were adequately addressed and appreciated the respectful and empathetic manner in which their HCPs interacted with them. As one participant expressed, “When you’re in a situation like that, the way people talk to you has an awful lot to say” (P3-100).

The positive interactions with HCPs had a significant impact on participants’ sense of certainty and overall well-being. The supportive communication style fostered a deep understanding and connection, contributing to improvements in both medical and emotional well-being. Community cancer nurses and home care nurses, in particular, were highlighted for their attentive listening, responsiveness to questions, and the ability to explain medical information in a way that participants reported to be compassionate and understandable. The role of GPs was described ambivalently. While some participants emphasized a positive relationship with their GP, others reported their GP to be less involved since they began cancer treatment in specialist healthcare. This was partly because participants didn’t perceive the need to initiate contact.

Consistent care and communication over time were emphasized as key elements that built and maintained trust for the participants. They appreciated the reassurance from HCPs, exemplified by one participant’s statement: “The fact that they have said that no matter what happens, we will help you in the best possible way, we will do everything we can for you to be well, that counts for a lot” (P3-156).

Participants expressed a sense of reliance on their HCPs for ongoing support. The discussion around disease progression, symptoms, and concerns about burdening family caregivers served as a foundation or starting point for addressing what participants referred to as ‘the vulnerable themes’.

Preparing for the future (EoL) (2)

Participants expressed varied levels of engagement and recollection regarding their involvement in healthcare decision-making, particularly in the context of ACP conversations and palliative plans. While seven participants remembered having participated in such discussions, five explicitly stated they had no recollection of engaging in ACP conversations or having a palliative plan.

One participant mentioned, “I don’t remember if I had a conversation with the Cancer Coordinator about the palliative plan, but I have an open line with her, can call, talk to her whenever I want, express my wishes” (P7-106). This suggests that even in cases where participants did not recall specific ACP conversations, they felt they had ongoing access to express their wishes and concerns.

Generally, participants valued the clarity of information, sensitivity, respect, and guidance received during ACP conversations. This allowed them to focus on what mattered most to them, reducing uncertainty and providing a sense of control. For instance, one participant expressed, “Thanks to the fact that there is a system of cancer nurses and GPs who actually take care of a certain amount of preparation, I feel looked after in that area (time to come)” (P11-156).

However, participants also experienced a range of complex emotions and considerations during the ACP process, influenced by the depth of the discussions. Preparing for EoL was acknowledged as a challenging and emotionally taxing process. Some participants were not ready to plan for EoL, while others actively avoided contemplating their own mortality. This denial may have posed challenges for healthcare personnel in engaging participants in EoL planning.

Those willing to discuss EoL appreciated knowing that their values and preferences would be respected, providing a sense of preparedness for potential medical challenges at the EoL. In cases where relatives were present during ACP conversations, participants found comfort in the awareness that their loved ones were informed about their preferences.

Reflecting on the future, one participant expressed, “It is difficult to know how to prepare (for what happens in the future), what to expect. I’m probably not well prepared, but I think I’ve prepared myself as well as I can, also in relation to family” (P8-165). This highlights the complexities and varied emotional responses participants had toward EoL planning.

Explanation model

The subsequent model of explanation functions as a framework for structuring and comprehending the qualitative data. Participants, while at home, employ problem-solving strategies to maintain a sense of normality in their lives. Family caregivers play an important role in this sense of normality, offering support to facilitate its preservation. The primary concerns voiced by participants revolve around the progressive deterioration of their condition and the potential burden it imposes on their family caregivers. Compassionate care provided by HCPs contributes significantly to emotional coping mechanisms, avoidance of problems, and a sense of being acknowledged and understood. Participants express appreciation for guidance received in preparing for the future, yet concurrently grapple with negative emotions associated with contemplating EoL preparations. Figure  1 gives an overview of the explanation model about what mattered the most at home.

Explanation model about what mattered the most at home

In light of the rich and nuanced data of advanced cancer patients’ experiences at home, the discussion reflects on the identified themes and explores their implications for improving the quality of care, shaping future research directions, and adapting healthcare practices to meet the individual needs of those facing advanced cancer in a home setting.

All 12 participants in this study strongly expressed their desire to remain at home as long as possible and manage their lives in a familiar environment. They found fulfilment and happiness and underscored the importance of normality.

The challenge for cancer patients to maintain a sense of normality at home varies based on the cancer stage, treatment specifics, and individual circumstances [ 25 ]. Maersk et al. [ 3 ] highlighted the importance of supporting cancer patients’ identity by allowing them to engage in daily activities at home. Home and objects within it functioned as significant references to the patients’ sense of self. The desire to live as ordinary people may sometimes be a facet that patients hide from their families [ 26 ].

The participants in this study were keenly aware of the challenges associated with declining physical well-being, particularly in response to side effects of cancer treatment.

Managing side effects at home became a crucial issue, especially as cancer patients receiving chemotherapy spent more time in their home environment [ 27 ]. Koshy et al. [ 28 ] emphasized the need for supportive education and training for patients and caregivers, pointing to a negative correlation between self-care behaviours and side effects. While side effect management has evolved over time due to less toxic regimens and improvements in supportive care, patients now grapple with non-physical concerns such as effects on family and the future [ 29 ].

Being partially dependent on family caregivers was accepted to a certain degree by the participants in this study, as long as it didn’t impose too much care burden. They expected their family caregivers to play an active role in deciding and communicating the extent of care and support they were comfortable providing. However, discussing these expectations with loved ones proved challenging for the participants. This issue was addressed by 10 participants, with or without presence of the family caregiver during the interview. Participants often had a wait-and-see attitude with a preference to be at home and to die at home if possible. Some had already made their decision to prefer to die in the hospital.

Pottle et al. [ 5 ] found that the home environment facilitated a sense of normality, control, and individualized care, contributing to what family carers perceived as a “good death”. Interactions with loved ones were identified as strong support for cancer patients in coping with their condition [ 30 ]. Robinson et al. [ 31 ] observed challenges among family caregivers in identifying and making decisions about caregiving responsibilities. While patients and family caregivers often value and expect family involvement, explicit agreement on which party should take decisional leadership and who should play a supporting role remains limited [ 32 ]. End-stage palliative patients often perceive institutional care as a means to protect their families from the social, emotional, and relational burdens of dying [ 33 ]. Healthcare workers’ guidance for both patients and family caregivers can effectively identify information and support needs, utilizing evidence-based strategies to address these needs [ 34 ].

This study provides valuable insights and understanding of the interaction between HCPs and patients in primary healthcare in a home setting, as perceived by end-stage cancer patients. They felt that their concerns were adequately addressed and appreciated the compassionate and patient-centred approach of HCPs. Interestingly, for almost half of the participants, the ACP process is primarily prominent through their relationship with HCPs rather than formal ACP conversations or written documents like a palliative plan. Once confirmed, accepted, and familiar to the patient, the plan aids patients in gaining a certain amount of control in preparing for incapacity and EoL challenges.

Compassion reveals various dimensions, underscoring the significance of incorporating patient perspectives to enhance the delivery of compassionate healthcare [ 35 ]. The partnership in nursing care significantly influences cancer patients’ perceptions of quality care [ 36 ]. Essential elements in caring for patients with cancer include facilitating behaviours such as empathy, touch, comforting, and support [ 37 ]. Many cancer patients assume that HCPs will take the initiative in discussions about EoL care preferences, while HCPs may be hesitant to broach these sensitive topics [ 38 ]. Poveda-Moral et al. [ 18 ] found in an umbrella review that main barriers reported by professionals were lack of knowledge and skills to carry out ACP, a certain fear of starting conversations about ACP, and a lack of time for discussions. Patients and family members considered that the main barriers were fear of discussing their relative’s EoL, lack of ability to carry out ACP, and not knowing who was responsible for initiating conversations about ACP.

Despite potential unpleasant feelings associated with participation in ACP discussions, many patients reported benefits [ 39 ]. Johnson et al. [ 40 ] found that the complex social and emotional environments surrounding EoL planning are not adequately integrated into standardized ACP. There is a recognized need for ACP to be personalized, feasible, and relevant at moments suitable for the individual patient [ 21 ]. The existing knowledge gaps regarding ACP initiation, optimal content, and impact are emphasized due to the fragmentation of available evidence and the absence of a holistic evaluative approach [ 41 ].

This study contributes to addressing these gaps by shedding light on the patient experience at home and the central role of the patient-HCP relationship in the ACP process which contributes to enhance EoL decision-making especially around preferred place of care and death.

Implications and future work

The implementation of ACP in primary healthcare involves more than the creation of plans; it requires proactive and ongoing communication among individuals, their loved ones, and HCPs. Aligning with the recommendations of Zwakman et al. [ 21 ], a more personalized ACP approach, tailored to the individual patient’s needs, concerns, and coping strategies, is crucial. This personalized approach enhances the effectiveness of ACP interventions and fosters patient-centred care.

Given cancer patients’ preference to stay at home as long as possible, integrating ACP into primary healthcare becomes essential to ensure long-term relationships and continuity of care. Training programs and practical tools within defined ACP interventions could assist HCPs in supporting collaboration among patients, their families, and the healthcare team. This collaborative approach is particularly relevant in primary healthcare settings, where the patient-HCP relationship plays a central role. Efforts are underway to establish ‘days at home’ as a patient-centred outcome in cancer care, serving as a valuable research and policy tool [ 42 ].

To advance the field of ACP in primary healthcare, there is a need for higher-quality studies and innovative ACP interventions. These efforts can contribute to the development of effective ACP programs, address existing research gaps, and enhance the overall quality of EoL care for patients with serious illnesses.

Appraisal of methods

This study adhered to the COREQ guidelines for reporting qualitative research [ 43 ]. We employed variation sampling to ensure a diverse range of perspectives and experiences relevant to our research question. Working closely with HCPs in primary healthcare, we prioritized the well-being and dignity of the patients during the recruitment process. After conducting 12 interviews, we believed that we had gathered a sufficient amount of data to effectively address our research question. Additional data collection was deemed unlikely to yield substantially new or different insights. However, the selection of the sample size was predicated on pragmatic considerations, employing a variation sampling strategy. A sample size of 12 participants might be deemed insufficient for achieving data saturation. Saturation might be difficult to assess when it has been reached and there are almost always pragmatic limits on how large or long a study can be [ 44 ]. While community norms and prior research can offer valuable guidelines for estimating sample sizes [ 45 ], it is imperative not to unquestioningly adopt these norms. Code saturation may indicate when researchers have “heard it all,” but meaning saturation is needed to “understand it all” [ 46 ]. The small sample size may limit the potential for generalisation in the current study. We could not get any feedback on the findings from the participants because of their limited lifetime.

The first two interviews were conducted of two persons. The participants could potentially feel uncomfortable if a power imbalance is perceived when meeting two interviewers, and the opportunity for rich data collection could be lost [ 47 ]. In these two interviews, we designated roles as interviewer and observer to ensure that the patient’s interaction was primarily directed toward the interviewer.

Thematic analysis was chosen to explore participants’ views and opinions as subjective experiences, providing a rich and detailed account of the data through constant movement back and forth between the entire dataset. The use of a reflexivity journal made our coding and analysis process transparent, documenting how codes and themes supported the findings. Themes were interpreted and understood within a broader context.

To enhance coding reliability, two coders independently coded the same data with three sessions for one coder (CM) and six sessions for another (BD). Regular meetings and discussions among coders and the other researchers further improved coding reliability through clarifications and refining the coding process collaboratively.

The research team comprised individuals with diverse professional backgrounds and scientific experiences, including four physicians, two nurses, and three researchers with backgrounds in medical and natural sciences, encompassing both qualitative and quantitative research. Two authors, BD and AK, brought prior knowledge and experience related to ACP conversations and palliative plans in our region. However, it is important to mention that the two main coders (BD and CM) were not very experienced in qualitative research.

In three interviews, the next of kin was present but not involved with direct questions. Participants’ responses in these cases might have been influenced by the next of kin’s presence, particularly regarding preferences for EoL preparations and desires to remain at home for as long as possible. However, 10 of 12 participants expressed that such decisions couldn’t be made independently without consulting their next of kin.

Preserving normality at home, coupled with the desire to remain at home for as long as possible, emerges as a significant goal for advanced cancer patients. However, achieving this goal is contingent on physical well-being and the support provided by family caregivers, with uncertainty about the extent of burden patients can impose on others.

Participants expressed a sense of reliance on HCPs for ongoing medical and emotional support. The foundation of trust and a sense of certainty was built and maintained through understandable and compassionate communication over time. In addition to aspects like autonomy and the exercise of control, the ACP process seems to be deeply rooted in personal relationships with HCPs, emerging as a major outcome resulting from discussions about future challenges and EoL considerations.

Data availability

No datasets were generated or analysed during the current study.

Abbreviations

Advance care planning

End-of-Life

General Practitioner

Health Care Personnel

Palliative care

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Acknowledgements

The authors express their gratitude to the patients who generously participated in this study and openly shared their experiences. The success of this project is owed to the dedicated involvement of primary healthcare professionals, particularly cancer nurses and GPs, who played a crucial role in implementing ACP in our region. Special thanks to the community cancer nurses for their essential contributions to participant recruitment.

Open access funding provided by NTNU Norwegian University of Science and Technology (incl St. Olavs Hospital - Trondheim University Hospital). The Norwegian Directorate of Health funded the development and implementation of ACP conversations and summarizing palliative plans in Møre and Romsdal County. This study was supported by Møre and Romsdal Hospital Trust, and Norwegian University of Science and Technology (NTNU). The funding bodies played no role in the design of the study, collection, analysis, interpretation of data, or writing of the manuscript.

Open access funding provided by NTNU Norwegian University of Science and Technology (incl St. Olavs Hospital - Trondheim University Hospital)

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Department of Oncology, Møre and Romsdal Hospital Trust, Ålesund, Norway

Bardo Driller

Department for Research and Innovation, Møre and Romsdal Hospital Trust, Ålesund, Norway

Bardo Driller, Bente Talseth-Palmer & Torstein Hole

Department of Clinical and Molecular Medicine, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology, Trondheim, Norway

Bardo Driller & Anne-Tove Brenne

School of natural sciences, Trinity College Dublin, University of Dublin, Dublin, Ireland

Carolin Maienborn

Department of Health Sciences Ålesund, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology, Ålesund, Norway

Elin Margrethe Aasen

Home care department, Kristiansund municipality, Kristiansund N, Norway

Adriana Kolstrøm

School of Biomedical Sciences and Pharmacy, College of Health, Medicine and Wellbeing, University of Newcastle, Newcastle, Australia

Bente Talseth-Palmer

NSW Health Pathology, Newcastle, NSW, Australia

Department of Surgery and Emergency Medicine Molde Hospital, Møre and Romsdal Hospital Trust, Molde, Norway

Kjell Erik Strømskag

Department of Circulation and Medical Imaging, Faculty of Medicine and Health Science, Norwegian University of Science and Technology, Trondheim, Norway

Torstein Hole

St. Olav’s Hospital, Cancer Clinic, Trondheim University Hospital, Trondheim, Norway

Anne-Tove Brenne

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Contributions

BD was responsible for the conception, design, and procedures of the study, as well as interviewing, analysis and interpretation of the data. BD also took charge of drafting and editing the manuscript. CM played a key role in the analysis and interpretation of the data and contributed to drafting and editing the manuscript. EMA participated in the conception and design, analysis, and interpretation of data, and she also revised the manuscript. AK was involved in the conception and design, interviewing, and provided revisions to the manuscript. ATB was responsible for the conception and design of the study, contributed to the interpretation of data, and participated in drafting and editing the manuscript. BTP participated in the study and revised the manuscript accordingly. TH contributed to the conception, design, analysis, and interpretation of the data and provided revisions to the manuscript. KES conceived the study and made revisions to the manuscript accordingly. All authors have read and approved the final manuscript.

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Correspondence to Bardo Driller .

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Ethics approval and consent to participate.

The study was performed in accordance with the relevant guidelines and regulations from the Declaration of Helsinki and was approved by the Regional Committee for Medical and Health Research Ethics (REK; ID 168328) and the Cancer Department at Møre and Romsdal Hospital Trust. The participants were given both verbal and written information about the study. All participants provided informed consent prior to participation in the study.

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The authors declare no competing interests.

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Driller, B., Maienborn, C., Aasen, E. et al. Normality and compassionate care: experiences from advanced cancer patients in their last time at home. BMC Prim. Care 25 , 245 (2024). https://doi.org/10.1186/s12875-024-02499-x

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Received : 18 December 2023

Accepted : 26 June 2024

Published : 06 July 2024

DOI : https://doi.org/10.1186/s12875-024-02499-x

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