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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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The patient, Gypsy Genes, is 89 y.o. Caucasian female with a history of recurrent urinary tract infections (UTIs) and a diagnosis of Alzheimer’s dementia x 10 years. Patient also suffer from L sided hemiparesis as a result of a stroke 5 years ago. She resides in a local nursing home where the staff reports she has had a “depressed” affect, confusion, and agitation x 5 days, since 5/1. It was reporteed by EMA that the nursing home staff was hesitant to transport to the hospital, as they believed the patient was exhibiting s/s associated with her dementia.

Upon arrival to ED, patient was treated as code sepsis. Vitals were BP 89/60, HR 120, Temperature 100.8 F, RR 22, O2 94% on room air. 2L supplemental O2 given via nasal cannula. Labs and Blood Cultures obtained at two different sites. Labs indicated a Lactate level of 3.0, WBC 21,000, BUN 69, serum creatinine 2.0.

Initiated sepsis one-hour bundle which included fluid Bolus at 30mL/kg, Vasopressors (norepinephrine) to maintain MAP >65 mm Hg (if patient is not responsive to fluid bolus), and Broad spectrum antibiotics (after cultures). The patient was stabilized with a BP of 110/75 and Intubated via ETT r/t la RR of 8 settings set at AC: Rate 20, FiO2 50%, PEEP: 5, Tidal Volume: 420, and ABGs showing Respiratory acidosis and then transferred to ICU due to acuity.Patient is currently on flagyl and levaquin, NS at 175ml/hr, One hour on ICU and the patient began to deteriorate, suspected MODS r/t Urine output: <30/hr, RR: 20, HR: 110, BP 75/54, 02 85% and Temperature 102. Patient assessment revealed generalized edema, cool skin and extremities, poor capillary refill (>4 seconds). Additional lab work up done revealed elevated BUN, creatinine, liver enzymes, and lactate level of 5 mmol/L. Initiated fluid bolus, hydrocortisone and vasopressors ( norepinephrine and vasopressin) with no improvement in fluid resuscitation and hemodynamic stability.

Patient is now in multiorgan failure and orders will be directed to comfort care. Now that the patient is in her end of life stage, physicians will follow the patient’s wishes from her physician’s orders for life sustaining treatment (POLST) form. Family has been contacted and updated on the status of patient’s condition. Gypsy’s daughter is now at bedside with a lot of questions for the whole healthcare team. Although the healthcare team is making it a priority to update the daughter, they have informed her that her mom already had a POLST indicating her wishes were to be DNR and provide treatments for comfort through symptom management. It is now the responsibility of the healthcare team to explain to the daughter that although she may want full treatment to treat her mom, they must respect her POLST. Gypsy is very religious and as a Roman Catholic, she was referred to the roman catholic sacrament of the sick. Antibiotics, IV fluids, and vasopressors have all been discontinued as they are no longer trying to treat her diagnosis. Gypsy’s medications directed for comfort measures will be a continuous infusion of 4mg/hour as well as lorazepam 2mg q6hr (Kuebler, 2014). The nurses are continuously assessing Gypsy to make sure she is comfortable and making sure the daughter is coping as well as possible.

DIscussion Questions:

• Other than physiologic factors, what other variables would be fundamental at this moment in this patient’s care? What should the nurse assess in order to provide the best holistic end of life care he/she can?
• What are different arrangements for patients who no longer have the capacity to make decisions regarding their healthcare?
• If you were dying, what type of medical treatment would you want? (artificial nutrition?, intubation?, Resuscitation efforts(CPR)?) Who would make the decisions for you?

Kuebler, K. M. (2014). Using morphine in end-of-life care. Nursing, 44 (4), 69. doi:10.1097/01.nurse.0000444548.72595.ac

Nursing Case Studies by and for Student Nurses Copyright © by jaimehannans is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License , except where otherwise noted.

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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)

• Research article
• Open access
• Published: 25 January 2017

Clinical decision making in the recognition of dying: a qualitative interview study

• Paul Taylor 1 ,
• Dawn Dowding 2 &
• Miriam Johnson 3  

BMC Palliative Care volume  16 , Article number:  11 ( 2017 ) Cite this article

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Recognising dying is an essential clinical skill for general and palliative care professionals alike. Despite the high importance, both identification and good clinical care of the dying patient remains extremely difficult and often controversial in clinical practice. This study aimed to answer the question: “What factors influence medical and nursing staff when recognising dying in end-stage cancer and heart failure patients?”

This study used a descriptive approach to decision-making theory. Participants were purposively sampled for profession (doctor or nurse), specialty (cardiology or oncology) and grade (senior vs junior). Recruitment continued until data saturation was reached. Semi-structured interviews were conducted with NHS medical and nursing staff in an NHS Trust which contained cancer and cardiology tertiary referral centres. An interview schedule was designed, based on decision-making literature. Interviews were audio-recorded and transcribed and analysed using thematic framework. Data were managed with Atlas.ti.

Saturation was achieved with 19 participants (7 seniors; 8 intermediate level staff; 4 juniors). There were 11 oncologists (6 doctors, 5 nurses) and 8 cardiologists (3 doctors, 5 nurses). Six themes were generated: information used; decision processes; modifying factors; implementation; reflecting on decisions and related decisions. The decision process described was time-dependent, ongoing and iterative, and relies heavily on intuition.

Conclusions

This study supports the need to recognise the strengths and weaknesses of expertise and intuition as part of the decision process, and of placing the recognition of dying in a time-dependent context. Clinicians should also be prepared to accept and convey the uncertainty surrounding these decisions, both in practice and in communication with patients and carers.

Peer Review reports

There is an increasing emphasis on end of life care, including how and where patients die [ 1 , 2 ]. There have been considerable concerns raised regarding the quality of care provided to patients at the end of their life in hospitals, and also issues related to their place of death [ 3 ]. This raises particular issues for clinicians; they need to be able to recognise whether a person is dying (or not) in order to ensure effective symptom control, to inform decisions regarding an appropriate ceiling of medical intervention, consideration of potentially reversible issues, and communication with patients and their loved ones [ 4 ]. One of the key recommendations or priorities for care across a number of initiatives that have been introduced nationally in the UK to improve end of life care [ 5 , 6 ], is that clinicians “recognise and communicate that a person is dying.” However the unpredictable nature of the trajectory of a disease means that it is often difficult for clinicians to anticipate when a patient may die [ 7 ].

In the UK, up until 2013, care of the dying was codified and structured in the Liverpool Care Pathway (LCP), and this document included simplified advice on recognising dying. The final version advocated a multi-disciplinary decision process, regular reviews of patient condition and highlighted clinical signs which were useful but not definitive [ 8 ]. Following controversy over the implementation of the LCP [ 9 ], the independent Neuberger review was commissioned which ultimately led to its withdrawal [ 10 ]. One concern highlighted in the review was the lack of evidence surrounding the recognition of dying.

Three and a half years since the publication of the Neuberger Review, the LCP has not been replaced by a single national system of comparable scope. Locally, trusts and health care organisations have attempted to generate structured processes for end of life care, whilst seeking to avoid the reported flaws of the LCP. Nationally, a number of related initiatives exist which aim to a greater or lesser extent to support end of life care, some of which make reference to the withdrawal of the LCP [ 5 , 6 ]. In each of these initiatives, the recognition of dying is highlighted as important; this landscape is summarised in Table  1 .

Within one month of the final withdrawal date for the LCP, some of these local and national initiatives had already met with criticism from the same sources as the original concerns [ 11 ]. Whilst these were presented in the mainstream press, recognition of dying featured again.

Given the importance of being able to accurately recognise whether or not an individual is dying, to inform management decisions and enable patients to make informed choices, the evidence base for the recognition of dying is limited [ 12 ]. Historically, a number of patient signs have been used as indicators of impeding death, including profound weakness, a patient being bed-bound or comatose, only able to take sips of fluid, changes in breathing pattern/breathlessness, skin changes, weak pulse and falling blood pressure [ 13 ]. However, the evidence base for these signs is limited; there is no research that provides an overview of the strength of association between the signs and time of death. Furthermore, they may not all be exclusively associated with dying; they may also be signs of an acute and potentially reversible illness [ 14 ]. Whilst these signs may be useful when recognising death, therefore, they are not helpful in assisting with distinguishing the dying patient from a patient who has a potentially treatable illness.

In summary, whether developing public policy, undertaking research, performing clinical care, or representing the views of the public, recognition of dying is repeatedly highlighted as a keystone to good end of life care. Despite, however, the high importance of the skill, it remains extremely difficult and there are large margins of error in the ability to recognise the final days of life in terminally ill patients, both from experts and well-designed prognostic models [ 15 , 16 ]. As Table  1 highlights, there are ongoing calls for research into this domain, and multiple sources highlighting the challenges involved. As yet, however, no clear headway has been made.

One alternative view of the recognition of the dying patient, is to treat the decision process as one of prognostication; the action of making predictions about future events (such as survival). Overall, clinicians have been shown to be inaccurate in their predictions of survival; studies compare a clinician’s prediction of survival (CPS) with actual survival (AS) identifying errors such as the patient living longer or shorter than predicted. A review of such studies carried out by Glare in 2003 [ 17 ] indicated that clinicians overestimated survival in 27% of cases and underestimated in 12%. Prognostic models (developed from cross-sectional studies of signs and survival) may also provide valuable insights and potential associations between patient signs and their likelihood of dying. In a recent study, the authors identified a number of specific physiological changes over the last two weeks of life for patients with cancer; including deterioration in respiratory function, worsening renal function (as measured by abnormal blood markers) and changes in serum albumin (with more abnormal values as death approaches) [ 18 ]. Whilst the identification of such physiological markers may help with the accurate recognition of a patient close to death; what is unclear is if, or how, clinicians may be able to incorporate them into their decision making.

Decision-making in health care

Decision-making is a branch of psychology, overlapping with cognitive science and sociology, which is concerned with understanding, modelling and improving decision-making processes [ 19 ], made under conditions of uncertainty [ 20 ]. Decisions made by health care professionals are normally uncertain; the information that is used to inform decisions is often incomplete, and the outcomes are based on probability [ 21 ]. There are three main approaches to exploring decision making; normative, prescriptive or descriptive [ 22 ]. Normative approaches are concerned with mathematically modelling decisions and outcomes [ 23 ], prescriptive approaches focus on generating techniques and tools to improve decision-making in the real world, and often draw on normative models [ 24 ]. Descriptive approaches are concerned with decisions as made by human decision-makers, particularly where they deviate from normative predictions [ 25 ]. Studies have demonstrated, for example, the role of decision-making models in prognostication [ 26 ] and decisions around treatment withdrawal [ 27 ].

There are a number of descriptive theories of decision making [ 24 ], in this paper we focus on the approach most relevant to understanding potential prognostic decision processes for recognising when a patient is dying. Dual process theory suggests that individuals make decisions (reason) using two different types of cognitive process; System 1 thinking, which is fast and intuitive and system 2 thinking, which is slow, analytical and thorough [ 28 ]. System 1 thinking is the default approach to thinking, it can process large amounts of data rapidly and does not require the use of much working memory. Akin to ‘intuition,’ it is a reasoning process that is often used by experts, and is triggered by ‘context’; with expert clinicians potentially identifying specific patterns or cues and matching them to previous examples of the same patient, based on their extensive experience. In contrast, system 2 thinking is characterized by being conscious, controlled and rule based. In dual process theory it is thought to provide a ‘supervisory’ role, regulating system 1 thinking, and promoting more systematic approaches to decision making [ 29 ].

When making decisions in healthcare settings, a number of properties of the decision-maker have the potential to influence the decision process, and relate to the system 1/system 2 distinction. Seniority maps to experience and expertise in a given context. Profession (doctors compared with nurses) also influences the process [ 30 ]. Patient diagnosis may also influence the recognition of dying, as cancer and organ failure may be considered to follow distinct trajectories as death approaches [ 7 ].

This paper reports the results of a qualitative study that explored the clinical decision processes of healthcare professionals who are faced with the need to recognise if and when a patient may be dying.

The aim of the study was to explore current decision processes in the recognition of dying, to inform potential strategies for implementing the results of prognostic models into practice to support that decision process.

This was a qualitative study, using semi-structured interviews, to explore the decision processes around recognising dying with clinical staff working in oncology and cardiology units in England.

The study was conducted with medical and nursing staff in a hospital in England which contained a referral centre for both cancer and cardiology. This hospital was a National Health Service (NHS) trust; a service overseen and funded entirely via the Department of Health. Staff who participated in the study were drawn from the oncology unit and cardiology unit. The oncology unit consisted of five dedicated wards, with 18 haematology/oncology patients on each. The unit included dedicated high dependency and palliative oncology beds. The cardiology unit included 2 wards with a total of 47 general beds and 19 coronary care beds. Each unit accepted patients at all stages of their illness, including acute admissions directly from the community, admissions for specialist intervention, referrals from general admissions/Emergency Department to treatment support and for palliation.

Participants

Purposive sampling was used to identify potential participants. A sampling frame was derived (see Table  2 ) to address three personal factors demonstrated in the palliative medicine and/or decision-making literature to have potential to influence clinical decisions surrounding the end of life: profession (doctor or nurse), specialty (cardiology or oncology) and grade (senior vs junior).

The initial aim was to recruit one to two participants per factor until saturation of themes (assessed by iterative ongoing analysis) was obtained. Potential participants were recruited to the study through the use of posters, letters and through presentations at teaching sessions to invite staff to take part in the study. Interested participants approached the lead researcher, through direct discussion or telephone, to ask to take part.

Data collection

An interview schedule was designed, based on decision-making literature, and used to prompt and guide data collection. During the interview the participant was asked to bring to mind a specific decision, and then to base their responses around that case, in order that the decision processes could be explored in detail. The interview began with broad, open questions, designed to allow the participant to volunteer information as they felt appropriate, and then moved to focus on the context for the decision, information sought as part of the decision process, the decision process itself, the management of the patient and finally the potential for this decision to impact on future work. Through this approach the interview was designed to cover the full decision process.

Each participant attended for a single interview, which was digitally recorded and verbatim transcribed. Contemporaneous hand-written field notes were kept and added to the transcripts at a later date.

Data analysis

Data were analysed using thematic analysis as proposed by Braun and Clarke [ 31 ]. This includes analysis in six stages; familiarization with data, generate initial codes, search for themes, review themes, define and name themes, produce report. These stages as applied to this research are described in further detail in Table  3 .

All data were managed using Atlas.ti software (version and reference). All transcripts were coded by the lead researcher (PT), with four transcripts (one doctor and one nurse from each specialty) double-coded by a second researcher (DD) using the coding frame generated in stages 1 and 2. This allowed triangulation of findings and aided with decisions to maintain and reject codes and themes which were well or insufficiently rooted in data – areas of agreement and disagreement between coders were key to this process. Two participants (one from each profession) were contacted following analysis and met to discuss the findings and themes, providing respondent validation.

A total of 19 respondents; 9 doctors, 8 registered nurses and 2 health care assistants took part in the study (Table  2 ). Interviews varied in length from 24 to 55 min. Overall, six themes representing factors that influence the recognition of dying were generated from the analysis; information used, decision processes, modifying factors, implementation, reflecting on decisions and related decisions. Within these six themes, thirteen sub-themes were identified, some of which overlapped between themes. These are presented in Fig.  1 and described further below.

Representation of the six main themes, thirteen sub-themes and their overlap.

Results are presented according to themes, with supporting quotes where appropriate. Respondents are identified according to the characteristic of interest for the quote.

Information used

Respondents collated a wide variety of information as part of their decision process when they were identifying if a patient was dying. This included knowledge of the underlying illness (both in a given patient’s case and in general), symptoms, observations, response to treatments, and non-specific factors such as mood, performance status and general fitness. The variation in responses across interviewees was considerable; specific symptoms, observations and tests reported by at least one participant are listed in Table  4 .

“I’ve seen a patient with a kidney cancer spread to the spine. He’d just been diagnosed, just been started on sunitinib which is the standard treatment for kidney cancer and he was admitted for upper GI bleed. I discussed with the consultant and we both felt that this patient has still got at least 11 months to 12 months to live on average… …In other patients it will be a different scenario, pancreatic carcinoma with liver metastases progressing on treatment, elderly chap with lots of co-morbidities. He was admitted for maybe progressive ascites and he generally looks unwell, then you start thinking towards poor prognosis, DNAR and maybe not that long to live.” Oncology doctor.

In addition to seeking one-off information on a patient’s case, participants described seeking time-dependent information; this was a finding that showed a difference between cancer and heart failure patients, with the specific pattern of change varying between the two. This varied according to the disease condition; patients with heart failure were considered to have a less predictable pattern of deterioration, whereas cancer patients tended to follow a pattern of gradual deterioration over time. The manner in which a person’s condition had changed, and the rate of such change, was accorded high importance, particularly by experienced professionals.

“In my mind, I plot a gradient, and people tend to follow that gradient… …you know, if somebody’s only deteriorating slowly, they’ve probably got fairly slowly progressive disease, if somebody is dropping off their perch very fast, then they’re probably going to continue to do that, so you’ve got less time to work on things.” Oncology doctor.

“The trajectory of heart failure in patients who have advanced disease who are slowly deteriorating I always think is a bit like that child’s game where you try and skip a stone across the lake, you know that? So the first bounce is quite a big one and then the second one is a bit smaller and the third one is a bit smaller and the fourth one and it goes de, de, de, and then sinks and heart failure is a bit like that towards the end.” Cardiology doctor.

Decision processes

The processes by which a clinician arrived at the recognition that at a patient may be dying were characterized by participants being either unable to describe their decision processes in detail, stating that such processes were difficult to explain or discussing how they recognised a ‘pattern’ which they could match to previous patients. In general participants described the process as being subconscious or a ‘sixth sense’ rather than being an explicit rational reasoning process.

“I do have, I don’t know, a sixth sense, it’d be silly to say that, but I do kind of know when somebody’s dying.” Senior oncology nurse.

“…I’m pretty certain that if you took me and 3 other random heart failure doctors and put us in a room with 10 patients, one of whom is going to die within the next 3 weeks, we’d all pick the same person. But quite putting your finger on how it is that you know that it’s that person and how soon, is more tricky…” Senior cardiology doctor.

They’ll have an admission, sort them out, go home for quite a long period of time, come back, then don’t last quite so long at home, come back, don’t last quite so long at home and so it goes and there is a very recognizable pattern that people start coming in more and more often. Cardiology doctor

The only exceptions occurred in cases where decisions were very clear-cut or where, in one case, a participant discussed using the LCP “four criteria” [ 8 ] to recognise dying – a technique explicitly described as inappropriate by two other participants.

“when she came in first admission that I saw her on, um, she had decreased levels of consciousness, so I guess she’d have met [the pathway criteria], she wasn’t swallowing at first, particularly well, because she was sleepy, so in theory, she might have met it, but you know, a bit of steroids and she came around, so I think you’ve got to be careful. Not just, not just use, you know, “oh well, they tick these boxes.” Oncology doctor.

As well as discussing the use of intuition or ‘sixth sense’ and pattern matching, all staff interviewed discussed decision making in teams. This included assessing/discussing cases with individual colleagues, sharing information in larger teams. However, there was also a sense that the eventual decision rested with senior members of the medical team.

“Its’s more of a collaborative decision than one person, cos it’s, a lot of us around…” Cardiology nurse.

Modifying factors

Modifying factors refer to the properties of the decision maker or context that impact on the decision process. There were a number of factors which were identified as influencing or modifying how individuals identified if a patient were dying, including the potential for investigations and treatments to influence outcomes, the patient’s own knowledge of their condition, and the professional’s duration of involvement with the patient. A key factor appeared to be a clinician’s medical specialty; cardiology and oncology staff recognised specific strengths and weaknesses of managing specialty-specific patients. Both oncology and cardiology staff recognised where their own specialty might be able to deal with dying patients in certain contexts.

“I mean, the nurses on the oncology wards here, would have, if I’d been soldiering on saying “but we must do this”, and “shouldn’t we irradiate that and send him off for neurosurgery”, or whatever, they would have said, “don’t you think he might be dying?” Oncology doctor.

The decision-maker’s profession was also described as modifying decisions with distinctions explained as arising from time spent with patients (higher for more junior staff and for nurses) and responsibility for decisions (which ultimately were seen as resting with senior doctors). Given the importance of time-dependent change and intuition in the decision-processes, it is not surprising that time-dependent involvement and seniority are highlighted as influential.

A third modifying factor was the potential limit of interventions. This referred to clinicians looking ahead to consider whether a patient’s condition may benefit from either starting or continuing a given intervention.

“What is important as well is to try and look for any reversible causes and I think as a clinician that it is very important to exclude that right at the very onset that whether there is anything reversible that you can do with minimal fuss and minimal intervention which would actually improve the situation for your patient to be able to receive more treatment.” Oncology doctor.

Knowledge of the limits of interventions, the lack of reversibility and the ability to think ahead and consider likely outcomes of interventions, were associated with ability to recognise the dying patient. Increase knowledge of the patient was also important, in terms of assessing patterns of change over time.

I think, the longer a patient’s been with us, the easier it is to tell, because you know what the normal, what they are normally like, and whether they have deteriorated, whereas if they’ve just come in, you haven’t got as much overview of the patient really, to be able to make them choices maybe, sometimes.” Oncology nurse.

Implementation

Implementation refers to actions taken once an individual recognised a patient may be dying. Recognition of dying and the management of the process were often discussed in tandem, with participants reflecting on the need for managing symptoms when someone is in the last phases of life.

“… they generally seem to sleep a lot more. Um, they don’t respond, they certainly seem to lose interest in food, that’s what I’ve observed. And I think it’s really important that you do good mouth hygiene. I think, I think that although you don’t go in and do the observations, I think you do have to do things like, good oral hygiene and, ‘cos their mouth gets dry and horrible, and I think that’s something they don’t need to, sort of, put up with, do they, if you can keep on top of that. And, pressure area care as well…” Oncology nurse.

The data from this study suggests that the management of dying patients begins before dying is recognised, and recognition depended in part on response to management of deteriorating patients. In this context, the recognition of dying can therefore be seen as an iterative process. However, this overlap was not complete, and participants did discuss management alone. Key factors in the management of dying patients highlighted by participants included importance of good symptom control, good communication with patients and families, good inter-professional communication (written and spoken, including clear limits of care) and the avoidance of unnecessary interventions.

“we took the fluids down. He had still been having some oxygen, but that was for comfort and so that he didn’t feel breathless or anything like that…. And his wife was there, and I think the other part of it was, as well as the medicines, is the supporting the wife.” Junior doctor

Reflecting on decisions

Reflections were explored deliberately, in order to capture the entire decision process. Participants rarely discussed reflecting on decisions, except where prompted by the interviewer. Several participants clearly stated that they had not reflected on the decision in question, and that they did not intend to do so. Other participants discussed having reflected on decisions around dying patients, but as part of a “debrief” process, and to assess whether anything could have been done differently, as outlined in the following quote.

“ I will always play back the aspects of the care that involved myself… …if I did everything that I could, if I cared for the patient in the right way, if there was anything I could have done more or anything that I should have done less.” Oncology nurse.

One participant described reflection influencing future management; in this case, to ensure that families are always warned of the possibility of dying. In addition, several participants stated that they felt the diagnosis of dying should have been made sooner; none stated the opposite, suggesting a general tendency to make such decisions too late.

Related decisions

Although the study was focused on the recognition of dying, participants also described other, related, decisions as part of the wider decision and management processes. The three main examples were a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) order, and recognition that a patient’s condition requires only symptomatic relief or will not recover. This theme stands distinct from the others in that, whilst it is well rooted in the data, the responses are not chiefly concerned with recognition of dying, and hence it is not explored further here.

The purpose of this study was to explore the process by which clinicians diagnosed dying in patients with heart failure and cancer. One of the key findings relates to the overall structure of the recognising dying decision. Rather than it being a clear, objective, one-off decision, it appears to be a fluid, ongoing and iterative process. It is ‘fluid’ because the distinction between active management and dying is blurred. It is ‘ongoing’ because the decision is not made at a single point in time but involves acquiring information over a longer time-period. It is ‘iterative’ because decision makers review their decisions as they acquire further information, whether arising out of their own observations or those of others. Interestingly, this relates to previous studies and recommendations regarding supporting and communicating end of life decisions with patients [ 32 , 33 ]. The nature of this process has particular implications for the use of prognostic models to assist with the decision process of diagnosing dying; such models are normally developed on the basis of a ‘snap shot’ or cross-sectional sample of data taken at a point in time (such as 1 month or 2 weeks prior to death) and used in a static fashion to see how well individual signs are able to ‘predict’ the imminent death [ 34 ]. By their nature they are a static, one point in time approach to decision making, which is not reflected in the fluid and iterative nature of the actual decision process in practice. Given this, prognostic models may benefit from using repeated measures [ 35 ], a risk score subject to revision and a recognition of a potentially uncertain time period into their design; all features that may then mean they have more utility in clinical practice.

Our findings also suggest that the predominant reasoning method used by clinicians to recognise dying is that of intuition or pattern matching. As is typical for intuitive reasoning [ 36 ], clinicians discuss knowledge distinct from a reasoning process; even where specific factors are made known participants struggled to describe how they combine the breadth of information into a decision. However, despite the use of intuition to potentially recognise a dying patient, clinicians also described a process that seeks data over time, allowing time for a more analytical, methodical component. Our results suggest that clinicians are using a mixture of System 1 (rapid, unconscious, intuitive) and system 2 (slow, analytical) reasoning to both diagnose a patient as dying and implement appropriate management interventions. In this regard, the implementation of more structured approaches to assisting with the process (such as intelligent prognostic models and/or guidance on management interventions) would increase system 2 processing, leading to decisions that are potentially not based so heavily in intuitive or pattern matching processes.

Study limitations

This study focused on the decisions of individual clinicians, rather than exploring the process of decision-making by teams. It is therefore unclear how the experiences of the individual clinicians may be impacted by discussion with others during team meetings and other places where decisions are taken (such as during ward rounds). Whilst it is not possible to eliminate bias from a qualitative study, several processes [ 37 ] were used to strengthen the credibility of the analysis. Firstly, the double-coding process allowed findings to be triangulated with the decision-making researcher (DD). Secondly, data that had been collected from a single focus group were used to triangulate the findings drawn from this study; no contradictory or additional information was raised from this limited dataset. Finally, the study involved respondent validation. None of the points presented here were contradicted, and no additional points were raised.

As part of reflexivity and transparency, this study should be interpreted with knowledge that the lead researcher is a palliative medicine professional and, as such, brings experience and preconceptions around the care of dying patients to the research. The lead researcher had also worked with some of the participants. In addition, he had undertaken a literature search around end-of-life decisions.

Clinical implications

From a clinical perspective, this study supports the need to acknowledge the strengths and weaknesses of expertise and intuition as part of the decision process, and the importance of placing the recognition of dying in a time-dependent context. Clinicians should also be prepared to accept and convey the uncertainty surrounding these decisions, both in practice and in communication with patients and carers.

Research implications

From a research perspective, this study suggests that detailed exploration of the decision process may be difficult, and that studies seeking to assess the accuracy of professional decision-making (particularly in comparison with mathematical models) should seek to do so realistically, by presenting a decision-maker with time-dependent information, and giving them opportunity to reassess and review decisions.

The recognition of dying remains an important skill, highlighted by the multiple initiatives in the UK (Table  1 ) and the Institute of Medicine report in the USA [ 2 ]. Increased research in end-of-life care, with particular reference to the recognition of dying, are common themes. Using decision-making theories as a basis, this study explored the recognition of dying by health care professionals in cardiology and oncology, and highlighted important aspects of the decision process, which have an impact on both clinical practice and research.

Royal College of Physicians. National care of the dying audit for hospitals, England. 2014. p. 1–10. https://www.rcplondon.ac.uk/projects/outputs/national-care-dying-audit-hospitals . Accessed 1 Sept 2016.

Google Scholar  

Institute of Medicine of the National Academies. Dying in America. Improving Quality and Honoring Individual Preferences Near the End of Life - The Pressing Need to Improve End-of-Life Care. 2014. http://www.nationalacademies.org/hmd/Reports/2014/Dying-In-America-Improving-Quality-and-Honoring-Individual-Preferences-Near-the-End-of-Life.aspx . Accessed 1 Sept 2016.

Parlimentary and Health Service Ombudsman. Dying without dignity - Investigations by the Parlimentary and Health Service Ombudsman into complaints about end of life care. 2014. p. 30. http://www.ombudsman.org.uk/__data/assets/pdf_file/0019/32167/Dying_without_dignity_report.pdf . Accessed 1 Sept 2016.

Ellershaw J, Ward C. Care of the dying patient: the last hours or days of life. BMJ. 2003;326:30–4.

Article   PubMed   PubMed Central   Google Scholar  

Leadership Alliance for the Care of Dying People. One Chance to Get It Right. 2014. https://www.england.nhs.uk/ourwork/qual-clin-lead/lac . Accessed 1 Sept 2016.

National Institute for Health and Care Excellence. Care Of Dying Adults In The Last Days Of Life. 2015. https://www.nice.org.uk/guidance/ng31 . Accessed 1 Sept 2016.

Murray SA. Illness trajectories and palliative care. BMJ. 2005;330:1007–11.

Marie Curie Palliative Care Institute Liverpool. The Liverpool Care Pathway for the Dying Patient (LCP) Core Documentation LCP generic document. 2009.

Devlin K. Sentenced to death on the NHS. The Daily Telegraph. 2009. p. 11–4.

Neuberger J. More Care Less Pathway: A Review of the Liverpool Care Pathway. 2013. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/212450/Liverpool_Care_Pathway.pdf . Accessed 1 Sept 2016.

Donnelly L. New NHS death guidelines "worse than Liverpool Care Pathway". The Daily Telegraph. 2015.

Taylor PM, Johnson M. Recognizing dying in terminal illness. Br J Hosp Med. 2011;72:446–50.

Article   Google Scholar  

Sleeman KE, Collis E. Caring for a dying patient in hospital. BMJ. 2013;346:f2174.

Article   PubMed   Google Scholar  

Royal College of Physicians. National Early Warning Score (NEWS) - Standardising the Assessment of Acute-Illness Severity in the NHS. Report of a Working Party. 2012. https://www.rcplondon.ac.uk/projects/outputs/national-early-warning-score-news . Accessed 1 Sept 2016.

Gwilliam B, Keeley V, Todd C, Gittins M, Roberts C, Kelly L, et al. Development of Prognosis in Palliative care Study (PiPS) predictor models to improve prognostication in advanced cancer: prospective cohort study. BMJ. 2011;343:d4920.

Stone PC, Gwilliam B, Keeley V, Todd C, Kelly LC, Barclay S. Factors affecting recruitment to an observational multicentre palliative care study. BMJ Support Palliat Care. 2013;3:318–23.

Glare P. A systematic review of physicians’ survival predictions in terminally ill cancer patients. BMJ. 2003;327:190–5.

Taylor P, Crouch S, Howell DA, Dowding DW, Johnson MJ. Change in physiological variables in the last 2 weeks of life: An observational study of hospital in-patients with cancer. Palliat Med. 2015;29:120–7.

Koehler D, Harvey N. Preface. In: Koehler D, Harvey N, editors. Blackwell Handbook of Judgment and Decision Making. London: Blackwell Publishing; 2004. p. xiv–vi.

Chapter   Google Scholar  

Schwartz A, Bergus G. Medical Decision-Making: A Physician’s Guide. Cambridge: Cambridge Publishing; 2008.

Book   Google Scholar  

Groot Koerkamp B, Weinstein MC, Stijnen T, Heijenbrok-Kal MH, Hunink MGM. Uncertainty and Patient Heterogeneity in Medical Decision Models. Med Decis Mak. 2010;30:194–205.

Baron J. The point of normative models in judgment and decision making. Front Psychol. 2012;3:1–3.

Over D. Rationality and the Normative/Descriptive distinction. In: Koehler D, Harvey N, editors. Blackwell Handbook of Judgment and Decision Making. London: Blackwell Publishing; 2004. p. 3–18.

Thompson C, Dowding D. Essential Decision Making and Judgement for Nurses. London: Churchill Livingstone Elsevier; 2009.

Stanovich KE, West RF. Individual differences in reasoning: implications for the rationality debate? Behav Brain Sci. 2000;23:645–726.

Article   CAS   PubMed   Google Scholar  

Gill TM. The central role of prognosis in clinical decision making. J Am Med Assoc. 2012;307(2):199–200.

Article   CAS   Google Scholar  

Clarke G, Johnston S, Corrie P, Kuhn I, Barclay S. Difficult decision-making at the end of life: stopping oral palliative anticancer treatment. A systematic literature review and narrative synthesis. BMJ Support Palliat Care. 2014;4 Suppl 1:A27–8.

Pelaccia T, Tardif J, Triby E, Charlin B. An analysis of clinical reasoning through a recent and comprehensive approach: the dual-process theory. Med Educ Online. 2011;16:223.

Croskerry P. A universal model of diagnostic reasoning. Acad Med. 2009;84:1022–8.

Pierce SF. Allowing and assisting patients to die: the perspectives of oncology practitioners. J Adv Nurs. 1999;30:616–22.

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.

Murray MA, Wilson K, Kryworuchko J, Stacey D, O’Connor A. Nurses’ Perceptions of Factors Influencing Patient Decision Support for Place of Care at the End of Life. Am J Hosp Palliat Med. 2009;26:254–63.

End of Life Care Strategy. Department of Health. 2008. https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-quality-care-for-adults-at-the-end-of-their-life . Accessed 1 Sept 2016.

Royston P, Moons KGM, Altman DG, Vergouwe Y. Prognosis and prognostic research: Developing a prognostic model. BMJ. 2009;338:b604.

Chan E-Y, Wu H-Y, Chan Y-H. Revisiting the Palliative Performance Scale: Change in scores during disease trajectory predicts survival. Palliat Med. 2013;27:367–74.

Rew L, Barrow E. Intuition in Nursing, a Generation of Studying the Phenomenon. Adv Nurs Sci. 2007;30:E15–25.

Mays N, Pope C. Rigour and qualitative research. BMJ. 1995;311:109–12.

Article   CAS   PubMed   PubMed Central   Google Scholar  

The Route to Success in End of Life Care - Achieving Quality in Acute Hospitals. Department of Health. 2010. http://webarchive.nationalarchives.gov.uk/20160805123310/http://www.nhsiq.nhs.uk/8203.aspx . Accessed 1 Sept 2016.

Transforming End of Life Care in Acute Hospitals: The Route to Success “How To” Guide’. Department of Health. 2015. https://www.england.nhs.uk/2016/01/transforming-end-of-life-care/ . Accessed 1 Sept 2016.

Ambitions for Palliative and End of Life Care. A National Framework for Local Action - 2015-2020. National Palliative and End of Life Care Partnership. 2015. http://endoflifecareambitions.org.uk . Accessed 1 Sept 2016.

Actions for End of Life Care, 2014-2016. NHS England. 2014. https://www.england.nhs.uk/wp-content/uploads/2014/11/actions-eolc.pdf . Accessed 1 Sept 2016.

Morris M, Briant L, Chidgey-Clark J, Shouls S, Carey I, Hopper A, Robinson C. Bringing in care planning conversations for patients whose recovery is uncertain: learning from the AMBER care bundle. BMJ Support Palliat Care. 2011;1:72.

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Acknowledgements

We would like to thank the members of staff who participated in this study, giving their time and valuable insights.

PT was funded by a Hull York Medical School doctoral training fellowship

Availability of data and materials

Participant consent does not extend to use by other researchers and thus the data are not available.

Authors’ contributions

PT conducted this work as part of his doctoral thesis. MJ and DD were his academic supervisors. All authors contributed to concept and design, interpretation of findings, drafts of and the final manuscript. PT collected the data and analysed with DD. All authors read and approved the final manuscript.

Competing interests

The authors declare that they have no competing interests.

Ethics approval and consent to participate

Ethical approval to conduct the study, including the method of consent, was provided by the University of York, Yorkshire and Humber Research Ethics Committee (Ref 10/H1304/18) and the R&D department at the hospital where participants worked. Following provision of information about the study participants provided written consent for participation in the study, including the use of anonymous quotes in any ensuing publication. Key specific stipulations of the ethics committee were to limit the description of participants in publications to avoid identification, and to offer easy access to independent bereavement support for participants. A local charity (CRUSE) offered to provide this support.

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Taylor, P., Dowding, D. & Johnson, M. Clinical decision making in the recognition of dying: a qualitative interview study. BMC Palliat Care 16 , 11 (2017). https://doi.org/10.1186/s12904-016-0179-3

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Nursing Care at the End of Life: What Every Clinician Should Know

(15 reviews)

Susan E. Lowey, SUNY, Brockport

Copyright Year: 2015

ISBN 13: 9781942341192

Publisher: Open SUNY

Language: English

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Reviewed by Marty (Martha) Fabian-Krause, RNBS, Adjunct Clinical Instructor, Rogue Community College on 11/29/22

From history, definitions, trajectories, stages of death, hospice and palliative care , interpersonal communication nurse to patient, symptom management, bereavement, this text is very thorough and progressive. read more

Comprehensiveness rating: 5 see less

From history, definitions, trajectories, stages of death, hospice and palliative care , interpersonal communication nurse to patient, symptom management, bereavement, this text is very thorough and progressive.

Content Accuracy rating: 5

No issues encountered.

Relevance/Longevity rating: 5

Totally current in time and cultural relevance for today’s healthcare.

Clarity rating: 5

Written clearly with current accepted terminology.

Consistency rating: 5

This text follows a progressive style with each section building upon the next. The topics can be used independently also.

Modularity rating: 5

Can be easily assigned in smaller sections or changed in order depending on the class structure.

Organization/Structure/Flow rating: 5

This text is well organized with an opening introduction, the body of work, and an easily to understand closing.

Interface rating: 5

The grafts and charts are relevant and easy to comprehend. They are included in most sections.

Grammatical Errors rating: 5

No grammatical errors noted.

Cultural Relevance rating: 5

The writing style includes a wide population base with some detail to further research with reference to particular cultural groups available.

Important material about medical ethics, withholding, withdrawing medical care discussed and clarified in closing content. Very relevant for healthcare practitioners. Special consideration to grief and loss and the work of Dr Elisabeth Kubler Ross.

Reviewed by Nicole Trainer, Assistant Clinical Professor of Nursing, The George Washington University on 1/31/22

The book is very comprehensive and provides all details a novice nurse needs to know without overcomplicating the clinical situation. read more

The book is very comprehensive and provides all details a novice nurse needs to know without overcomplicating the clinical situation.

The book is accurate and provides evidence-based interventions for nursing practice within the hospital and community settings.

This book is extremely relevant to nursing practice. It makes a great point that only 2% of nursing curriculum focuses on end of life however, the vast majority of nurses will need to know how to care for the dying patient and family.

The book is clearly written and provides clear guidance to care for patients and families at the end of life.

The book is consistent in terms of terminology and framework. The afterward provides a real-life interview of the author that addresses the great need for resiliency in nursing practice relating to death and dying. The final chapter provides resources.

I really appreciated the division of reading with "Anticipation", "In the moment", and "Afterwards". These sections make a lot of sense when you are working with dying patients. The anticipation section prepares students for the in-the-moment part which would be the most anxiety-approaching aspect of dying.

The book's organization is clear and logical.

The text was easy to navigate and broken into chapters that were placed in logical sections.

No grammatical errors were found.

Cultural Relevance rating: 4

The book references different spiritual and cultural beliefs but does not detail specific races, ethnicities, and backgrounds. There are no cultural insensitivities noted and the book is in no way offense.

This textbook is exceptional and the content should be integrated into the curriculum of all nursing schools. The writing is concise, meaningful, and approaches a difficult topic in a positive way. Communicating healthcare wishes in a careful manner during the dying process is explained thoroughly.

Reviewed by Laura Mallett, Assistant Director of Nursing, Neosho County Community College on 6/3/21

The book covers all areas of the End of LIfe that a clinician should be aware of. The information would be good for novice nurses. read more

The book covers all areas of the End of LIfe that a clinician should be aware of. The information would be good for novice nurses.

We do a Death and Dying course as an elective in the program and use the online course. Comparing the two I would say this covers information well and actually goes presents it in more detail.

Very relevant to nursing education.

Written very well.

Consistent with the resources and best practices that I could see.

The book can be divided into modules easily.

The organization of the book is sequential and makes sense.

I think it is well written and no distractions noted

None that I saw in the review process.

I did not see anything that would alert me to cultural insensitivity.

I feel this would be a good resource or even book to use within the curriculum for nursing programs

Reviewed by Linda Mollino, Director of CTE Program, Oregon Coast Community College on 1/11/21

Overall, this book provided a comprehensive look at the role of nursing care in end-of-life care. Much of the content is presented in a detailed format and presented at a level that an undergraduate nursing student would understand and apply the... read more

Comprehensiveness rating: 4 see less

Overall, this book provided a comprehensive look at the role of nursing care in end-of-life care. Much of the content is presented in a detailed format and presented at a level that an undergraduate nursing student would understand and apply the content into their clinical practice. However, I would have liked to see additional information on the non-pharmacological approaches to pain and symptom management.

No errors were noted with regard to content, but it does present content from a single clinicians' point of view. The references do back-up the content.

Content is current and will stand-up to time. it is important for the reader to understand that laws could affect the approaches to care such as the use of marijuana based on state and federal laws and new approaches to pain and symptom management.

Clarity rating: 4

Very readable for an undergraduate nursing student. The charts presented were good but the use of tables and charts whenever possible to keep the student engaged in the topic is very important. So additional resources would have assisted in solidifying the content for the reader. The use of outcomes at the beginning each chapter and focus statements at the end of the chapter is very effective for solidifying the chapter content for the reader.

The information presented was consistent, through this probably is due to the fact that it was presented with one author's voice. However, there were no inconsistencies noted in the information presented.

The way the text is outlined, it can easily be broken up into smaller modules. This would be very effective for the instructor in dividing up content lessons. The book would totally support this approach. Example: historical approach vs. symptom management.

Organization/Structure/Flow rating: 4

The information was presented in a very organized matter, bringing in an historical perspective, and moving through the important topics such as palliative care vs. hospice care, on to pain management and the emotional/spiritual aspects of care at the end-of-life. One element that would have added to the flow of the content is case presentations and/or scenarios.

There were no interface issues. The book flows well in a number of interface programs. The charts are readable, pages remain consistent with the table of contents and the reference links are accessed in new tabs thereby locking the content and allowing the readers to maintain where they were within the book.

No errors were noted. Again, the flow of the book makes it readable for an under-graduate nursing student.

Although the chapter on "Diversity in Dying" is done well, it would have been more effective if some of this content was included throughout the book such as in the chapter "Initiating Conversations about Goals of Care.

Overall, this book is effective in presenting the concept of end-of-life care. Case studies would have brought the information home to the reader. However, the last part of the book that focuses on "lessons learned" does solidify the information presented. The hope is that book will engage the reader, encouraging them to look at other resources in the care of patients at the end of their lives.

Reviewed by Thomas Dombrowsky, Clinical Assistant Professor, University of Texas at Arlington on 2/19/20

The book addresses all the major areas of end of life care. I would have liked to see more specifics about symptom relief and about non-pharmaceutical methods for addressing pain. read more

Comprehensiveness rating: 3 see less

The book addresses all the major areas of end of life care. I would have liked to see more specifics about symptom relief and about non-pharmaceutical methods for addressing pain.

Content Accuracy rating: 4

No errors of fact were detected. The content was presented from the perspective of the author's experience, but due to the nature of the case that is what one would expect.

Relevance/Longevity rating: 4

The content is up to date. However, state laws regarding end of life care are rapidly evolving. This is especially true in the area of assisted suicide. The book mentions states that currently allow physician assisted euthanasia but does not acknowledge that this is an area where law and societal norms are rapidly changing.

The text is quite readable. Technical terms are explained as soon as they are introduced. The objectives for each chapter give a clear idea of what to expect, and content is appropriately summarized at the end.

Consistency rating: 4

There is only one author, so the style is highly consistent.

Modularity rating: 4

Each chapter stands on its own. Chapters could be assigned individually or used along side content from other sources.

The organization is logical and clear. Content could easily be used in order in a course focusing on end of life.

Interface rating: 4

The interface is clean. Appropriate tables are used. There is a lack of diagrams or pictures, but diagrams and pictures would not necessarily be helpful.

Grammatical Errors rating: 3

The author uses gender inclusive pronouns but there are some inconsistencies in their use that are a little distracting.

The text is inclusive and no insensitivity was detected. However the content was quite specific to US law and customs, so it might be less useful in an international educational setting.

I was disappointed by the section on pain control. The author led with pharmaceutical interventions. This is of course what is usually done, but I would have liked to see an emphasis on non-pharmaceutical interventions. Actually little was said about non-pharmaceutical interventions, and practical suggestions along this line were not offered. Most patients do indeed need medications, but too often the non-pharmaceutical interventions are an afterthought when medications are not effective rather than leading with the non-pharmaceutical interventions and including medications as well in a comprehensive plan of care. The section could be strengthened by adding content on the physiology and psychology of pain transmission and how pain control methods work. The chapters on emotional and spiritual distress and on communication were excellent.

Reviewed by Lisa Kuppler-Lee, Nursing Faculty, Radford University Carilion on 2/14/20

The on-line book is very informative on most aspects of "end-of-life-care" (ELOC). Unfortunately, it provides minimal information regarding Advanced Directives and Healthcare Power of Attorney. These two issues are becoming more of a problem in... read more

The on-line book is very informative on most aspects of "end-of-life-care" (ELOC). Unfortunately, it provides minimal information regarding Advanced Directives and Healthcare Power of Attorney. These two issues are becoming more of a problem in the hospital setting. Patients and/or family members are asked if an Advanced Directive or Power of Attorney is available on admission.

EOLC is so important. This text is error-free. The author provided unbiased information based on the different professional journals and books cited and referenced. The publications are well-known medical and nursing journals.

The book was up-to-date when it was published and EOLC will never become obsolete. In fact, its relevance increases as our life expectancy increases. Based on how the author arranged the text, the updates would be easily implemented.

Although the text is written primarily for healthcare professionals, an educated layperson could easily understand the book.

The material presented followed a consistent understandable format. At the end of each chapter was a section titled "What you would know". This provided highlights of the chapter in a few sentences.

The modular design of the various chapters make a strong pulling point for this book. Each chapter can stand alone by itself or have the flexibility to be part of a module. You can assign a few chapters as a module to be part of their current assignment. The book can be used as reference material for an assignment.

The book is very well organized. Its starts with history of EOLC and ends with breavement.

I used the PDF version. The text was easy to read and the various charts were significant to the chapter. The charts were clean without any distortion.

No grammatical errors were noted.

The book was not insensitive or offensive. The book only provided a chart on the different cultural/religious beliefs pertaining to care of the patient after death. Many of the different cultures/religious have rituals taking care of the patient prior to death. More in-depth information needs to be provided about the different cultures/religious groups.

Reviewed by Laurie Schroder, Program Coordinator & Assistant Professor, East Tennessee State University on 10/6/19

The text is comprehensive in its scope but only touches on many topics which would benefit from more depth, such as ancillary pain treatments and assessment tools utilized with patients. While the author is obviously knowledgeable about the topics... read more

The text is comprehensive in its scope but only touches on many topics which would benefit from more depth, such as ancillary pain treatments and assessment tools utilized with patients. While the author is obviously knowledgeable about the topics introduced, many may be unfamiliar to readers and a list of additional reading or references for those interested in pursuing more information might be helpful. It is understood that many of these topics are beyond the scope of this text, which makes this text both more readable, and slightly less comprehensive.

Overall, the text is accurate and material presented is supported with current research. Occasionally, an inaccuracy occurs, such as a statement on page 69 that seems to indicate that physical tolerance of a medication is analogous to withdrawal, but this seems to be the result of an editing error more than one of inaccurate facts.

The content is up-to-date and relevant, and is unlikely to become obsolete quickly as it does not serve primarily as a scientific text. Although some statistics are included, they are not terribly important in terms of bolstering any textual arguments.

The text is clear and accessible, with very little in the way of professional jargon. The author generally makes her point and provides sufficient anecdotal or research support for it. In some cases, the writing style is almost too informal, and weaves back and forth between present and future perfect progressive tense, or between addressing the reader directly as "you" and more formal technical-style writing.

The text is generally internally consistent. Those minor inconsistencies that exist (e.g. a suggestion that patients be included in meals and encouraged to eat their favorite foods, vs. a later suggestion that patients be given bland, cool foods to eat) are easily sorted out by individuals with a healthcare background, and could be readily explained by a knowledgeable instructor. The text is generally informal and written to relate the author's extensive personal experience with the dying and their families, and reads as a personal communique with some current evidence-based information and medical background added in as support. If intended for that use, the book would serve well; if intended to provide a thorough presentation of the pharmacologic, therapeutic, rehabilitative, etc. framework for death and dying, there is insufficient breadth and depth present.

This text would lend itself easily to being divided into easily read and digested units for a course. Although perhaps not entirely comprehensive, it would serve as a good jumping-off point for material that permitted students to self-assess their own biases related to death and dying, palliative care, and grief.

This text is well-organized, beginning with a historical (if purely Westernized) view of end-of-life care and ending with a chapter on bereavement, and includes chapters that cover illness trajectories, frameworks of death and dying, palliative and hospice care, and an in-depth section related to the relationship, both professional and personal, that exists between the nursing caregiver and the dying patient.

I elected to review the pdf version of the text, which downloaded without difficulty, was easy to navigate, presented with no interface errors, and with which I was able to use the search tool.

Although the text does not contain notable, consistent grammatical errors, it is written in the style of a thesis paper, and at a relatively basic reading level. Some stylistic elements may grate on the college-level reader, such as references to inanimate systems that "grow and develop", "less" and "fewer" being used interchangeably, references that are unclear (e.g. "those diseases"), and other word and phrase choices that would be well-served by some revision. Additionally, the author tends to move freely among tenses within any given paragraph, which slows reading and comprehension. Clunky sentences, such as, "While there are certain things that are not warranted in a nurse's role to talk about, such as delivering bad news or a terminal prognosis, there are plenty of other informative things that can be discussed with the patient.", may cause the reader to pause unnecessarily. The occasional missing apostrophe, misused term, and redundancy ("also", "as well", "in addition" - more than one present in one sentence) would also have been eliminated by a good editor. Finally, as a note regarding writing style, moving from an informal manner similar to direct discussion with the reader ("So now you have a basic understanding about illness trajectory") to a formal style, adds an additional obstacle to making this text easy to read.

Cultural Relevance rating: 2

Although the text includes a chapter on "Diversity in Dying: Death across Cultures", it only serves to outline traditional American death and burial traditions and to provide a table of abbreviated beliefs from different religious traditions. The text does urge individuals working with patients and families from different cultures to be intentional about learning more about their values and traditions.

This book is an easy read, and while it has some stylistic issues, these are minor. It does a very good job of presenting a realistic personal perspective, from an experienced nurse, of the many facets included in the work (and calling) of providing care to patients and families during a difficulty period in their lives.

Reviewed by Monica Schibig, Associate Clinical Professor, University of Missouri on 1/15/19

This text does a respectable job of including all the key elements for one's understanding of end of life care (EOLC) issues. Some information on the basics of the legal side of EOLC would be helpful. Part of the discussion surrounding EOLC is... read more

This text does a respectable job of including all the key elements for one's understanding of end of life care (EOLC) issues. Some information on the basics of the legal side of EOLC would be helpful. Part of the discussion surrounding EOLC is to assist the patient in understanding the various components of written documentation of their wishes, such as advanced directives and power of attorney.

I did not notice any errors in the book, but this is a topic where the statistics supporting the information can easily change over the course of a couple years, so one needs to take into account he authoring year.

Relevance is one of the book's strengths. It is a fairly easy read which should increase the likelihood that the student or healthcare professional will read the entire book. future updates seem quite manageable.

The author did a great job of writing for a broad audience. It is not overly "medical" and presents the information in such a a manner that most lay individuals could comprehend the book's material.

The consistency throughout the book is one of the main reasons that a lay individual could easily absorb the content of this book.

Modularity is another strength of this book. Not only could an instructor assign the various chapters to coincide with a student's progressive matriculation through a program, but each section can stand on it's own and is not dependent on previous content. This lends nicely for faculty that may only want to emphasize certain sections of the book.

I believe the organization of this book is excellent, with one exception. In the last section, "Afterword Evaluation of Self: Lessons Learned", the first objective is "Evaluate one's own attitudes and beliefs about death and dying". The author goes on to focus mostly on caregivers that work in hospice, which leaves a gap for many other healthcare professionals, such as those that work in ICU's and ER's. Additionally, I think devoting some time to processing one's own feelings about dying could be beneficial in the beginning of the book.

There are many tables and charts that contribute significantly to the readers understanding of the content, such as the cultural differences (pg. 113-114).

Lack of perceived cultural sensitivity in healthcare is one reason many patients do not seek care, especially in the end of life stage. This book does an excellent job of bringing that to the forefront and arming the reader with knowledge and examples to feel confident in caring for a variety of patients who culture may differ from their own.

I enjoyed reading this book and look forward to incorporating the content in my own classes.

Reviewed by Patricia Drees, Assistant Professor, Fort Hays State University on 11/29/18

There is no index at the end of the work. There is a list of websites that can be used as resources for further reading. The topic is covered logically and groups the subtopic by when these topics occur in the life and death experience. read more

There is no index at the end of the work. There is a list of websites that can be used as resources for further reading. The topic is covered logically and groups the subtopic by when these topics occur in the life and death experience.

It is accurate and evidence based. Pain management and ethics are objectively discussed. Pain management is an area of nursing that tends to bring out opinions more than evidence to guide care. This warns against that.

This is relevant to nursing as it expands the topics: 1.fear of death 2.fear of pain in dying 3.accurate information on death process (physiological processes) 4.accurate information on pain medications 5.grief and hope 6.spiritual distress 7.application of ethical principles as related to death and dying

Accepted and appropriate terms are used. Written in standard American English.

The educator could easily ask the student to read a section to expand upon what is being taught in class.

It flows sequentially using a timeline or several timelines to capture the death and dying process.

Being an online book requires a different sort of navigation. It may require conversion to a format where the student can search out specific parts. I was unable to sign in. I downloaded a PDF. Perhaps, the other format had this feature.

If grammatical errors occur, they did not hamper my understanding of the content.

It is based on the American death and dying experience. It has a section on cultural care. It is brief and not the most comprehensive resource on that, however, it would not lead the nurse astray if this is the only source of cultural information. It has brief examples of religious and ethnic variations in beliefs and customs.

If I were teaching health and illness, it would be an adjunct source on pain medications and dying. As a mental health instructor, I could pick out different sections to supplement and expand topics. The spiritual distress section would be useful. This resource is good to look at the family dynamics of death and dying. I do not have a nursing book in the curriculum that this could 100% replace. The citations after each chapter alone would be a goldmine for students trying to learn more about the topic.

Reviewed by Sandra S. Lee, PhD, RN, CNE, Assistant Clinical Professor of Nursing, University of Houston on 5/21/18

The book addresses all areas of end-of-life care, starting with history, frameworks, and models of care. The middle section sufficiently covers the symptoms and corresponding interventions that a hospice nurse would most commonly encounter in the... read more

The book addresses all areas of end-of-life care, starting with history, frameworks, and models of care. The middle section sufficiently covers the symptoms and corresponding interventions that a hospice nurse would most commonly encounter in the illness trajectory. Although there is not an index or glossary, the table of contents is clear enough to quickly identify and find topics of particular interest.

The content is accurate and reflects current knowledge and science around end-of-life care.

The content is up-to-date and utilizes reputable sources throughout. A resource list at the end of the text gives the reader links to online sources which are not likely to change, such as the American Geriatrics Society and the American Medical Association, Institute of Medicine, etc.

The text is refreshing to read. It challenges the reader with expanding knowledge and points of critical discussion and handles a weighty topic in a way that is easy to think about and digest. The narrative is clear and easy to understand yet obviously scholarly and well supported by the current research and literature in end of life care.

The text is clear and consistent with its terminology and approach.

What really stands out is the large-font chapter titles, a poignant quote at the beginning of chapters to introduce the reader to the topic, and the learning objectives clearly indicated in a black and white box. The "What You Should Know" key points are easily identified at the end of each chapter by a green box, highlighting the most important take-aways from each chapter. References follow each chapter.

Each chapter begins with large-font chapter titles and a poignant quote at the beginning of chapters to introduce the reader to the topic. The learning objectives are clearly indicated in a black and white box. The "What You Should Know" key points are easily identified at the end of each chapter by a green box, highlighting the most important take-aways from each chapter. Each chapter is organized in the same way, so the reader knows what to expect while progressing through the text.

The interface is excellent. The no-frills approach in a PDF allows easy download and storage onto multiple device. I enjoyed reading the book on my iPhone. The reader won't find complicated graphics, images, or interactive activities in the text. Instead, Dr. Lowey opted for a simple, streamlined approach that I found aesthetically pleasing and easy to navigate between chapters. Charts and graphics are carefully selected and strategically placed wtih full explanations.

No grammatical or formatting errors were noted. The text is easy to read yet employs professional language and terminology.

The book approaches the subject of end of life care with sensitivity, knowing that many nurses are not comfortable with the topic or their ability to provice sufficient care. Dr. Lowey assures readers of all experience levels that the nursing hesitancy and limited of knowledge in end of life care is widespread. She empowers the reader that our presence and voice is our greatest and most effective intervention during end of life care. A specific chapter addresses the diversity and death practices across cultures and summarizes the religious beliefs for each of the world's major religions. No book or chapter could possibily comprehensively consider all cultural beliefs around death, dying, and funerals, but Dr. Lowey gives us a good starting point.

Nursing Care at the End of Life: What Every Clinician Should Know is a real gem for nursing students, experienced clinicians, and those new to hospice care. Having such an outstanding resource in the Open Textbook Library is a gift to the nursing profession, and to our patients. The text gives a practical, relevant, well-written, and comprehensive resource to draw upon when caring for patients in the palliation/hospice trajectory. The very best chapter is the last one in which Dr. Lowey reflects on what it's like to be a hospice nurse, how she copes with her own sadness when patients die, and other common questions that hospice nurses are often asks. If a nurse is thinking about becoming a hospice nurse and reading this book to get information, the last chapter will clearly help guide the decision. Several chapters could stand alone as reading assignments in other courses such as medical-surgical nursing or psychiatric care, or a course addressing cultural aspects of care. Whether used in its entirety, in part, as required or optional, this text is a must have in every nursing education program. I definitely plan to use this text in my classes for both required and optional reading assignments. Great job and outstanding work, Dr. Lowey!

Reviewed by Nancyruth Leibold, Associate Professor, Southwest Minnesota State University on 2/1/18

Nursing Care at the End of Life: What Every Clinician Should Know is a comprehensive book about caring for patients and families at the end of life. All areas and ideas related to nursing care at the end of life are included. A Table of Contents... read more

Nursing Care at the End of Life: What Every Clinician Should Know is a comprehensive book about caring for patients and families at the end of life. All areas and ideas related to nursing care at the end of life are included. A Table of Contents is included. An Index and Glossary are not included in this textbook.

The textbook includes accurate information about end of life care that is supported with evidence from the literature. The content is free of errors and unbiased

Nursing Care at the End of Life: What Every Clinician Should Know is relevant information as information about End-of-Life case is important for health care professionals to know and apply when caring for patients and their families at end-of-life. The content will not be quickly outdated, which is a major concern in nursing topics.

Nursing Care at the End of Life: What Every Clinician Should Know is clear and easy to read. The book includes professional vocabulary, but defines the terms used.

Consistent terms and frameworks are used throughout the book.

Nursing Care at the End of Life: What Every Clinician Should Know is presented in smaller reading sections with headings and subheadings to divide up the chunks of content. The book is not overly self-referential. Dr. Lowey cites her work in this area, but it is not overdone.

Nursing Care at the End of Life: What Every Clinician Should Know is well organized and flows well. There are 12 chapters in the text. Each chapter includes learning objectives, content, a “What You Should Know” section, and references. The major sub-topics for end of life care are included. And Afterword and End of Life Care Resources section is included. The tables and figures are helpful and point out the key ideas.

When I read the book in the online format, the font changed to difficult to read fonts and also changed to italic for some chapters. I found this difficult to read. The figures and tables were not impacted. I recommend using the PDF format of the book for this reason as it was consistent and easier to read. This may have been some odd technical aberration, but did happen to me at several different checks on different days. However, I mention in case you have similar issues so you can try the PDF as another option. Being able to download the PDF is an awesome plus!

The book is free of grammar and spelling errors.

This book includes a chapter about Diversity in Dying. The chapter outlines various religious beliefs and practices related to death and dying. Nurses are told to become familiar with the death and dying practices of the family. This is appropriate because families will have their own cultural practices that may or may not be used by everyone of their culture or religious affiliation.

Nursing Care at the End of Life: What Every Clinician Should Know is a well written book with outstanding content and organization. Thanks to Dr. Lowey for this open educational resource!

Reviewed by Dawn Cullison, Assistant Professor, Reynolds Community College Richmond, Virginia on 2/8/17

This book is very comprehensive and the author's scaffolding of foundational to more complex concepts yields a very thorough and yet concise understanding of the content. read more

This book is very comprehensive and the author's scaffolding of foundational to more complex concepts yields a very thorough and yet concise understanding of the content.

This book contains very well researched, current, and unbiased information, allowing the reader to glean an understanding of the various theories of death and dying and the myriad of approaches to the care of the dying patient.

The content of this text is current, relevant, and most essential in the training of nursing students and is written in such a manner as to not require frequent updates. The content is applicable to all facets of nursing as death and dying are encountered in any given specialty within the nursing profession. This text serves to fill in the gaps of coverage of death and dying in many nursing programs and would also be of benefit to the practicing nurse who desires to pursue additional independent learning opportunities.

The text is written in a manner consistent with educational resources aimed at the target population of nursing students, however, even one not familiar with nursing jargon/technical terminology would benefit from reading and be able to understand the overall intent of the text.

This text is divided into very concise chapters and utilizes a consistent framework throughout, which allows the reader to quickly identify the author's given style of writing, yielding an ease of comprehension and expeditious sense of familiarity and understanding.

This text is written in a format of very concise, modular sections which could easily be dissected and read in part, but also as a whole. The text references multiple sources of a wide range of expertise, offering the reader many opportunities to explore a particular topic of interest in greater depth.

The topics are presented in a clear, logical, and systematic manner, allowing the reader to either review or learn afresh the foundational principles and then move deeper into the more complex and finely tuned content.

This text is free of any significant interface issues, and no distortions of content, images, or charts is noted. The text was downloaded without difficulty and the formatting is clear, consistent, and reader-friendly.

The text contains no grammatical errors.

This text is culturally sensitive and addresses the unique differences in terms of cultural or religious views of death and dying while avoiding generalizations. The text seeks to educate the reader on the wide range of patient, family, and health care professional responses to death and dying while also avoiding generalization. This facet allows the reader to glean insights without forming potentially inappropriate or inaccurate presuppositions when faced with other cultures or religions in practice.

This book is an invaluable resource to all nursing students and practicing nurses as it very concisely articulates the unique complexities encountered in the care of the dying patient and the dying patient's family. This book accurately asserts that the content explored in this text is often covered minimally in the traditional nursing curriculum, leaving many nurses feeling inadequate, unprepared, and less than confident when caring for the dying patient in practice. This book more than adequately fills the void and I will be utilizing this resource in the future. Thank you for compiling and sharing this information.

Reviewed by Cindy Yascavage, Instructor, Temple University on 8/21/16

The text is comprehensive and appropriately provides a basic understanding of terms of a difficult topic for care givers. read more

The text is comprehensive and appropriately provides a basic understanding of terms of a difficult topic for care givers.

The book's content is accurate and supported appropriately with relevant references.

Even though some of the material seemed old, it is the gold standard. The content is up to date, and somewhat ageless. Medications for pain may change, however, learning how to manage palliative care clients remains difficult for many.

There text is not written with techinical terminology such as medical procedures, however, to a nonmedical person, there might be some terminology they are unfamiliar with.

The text is consistent in terminology and framework throughout the text. For example each chapter begins with learning objectives.

The text is easily divided into smaller section that are managable for assignments.

The text is organized and presented in a logical and clear fashion.

The text is free of significant interface issues. There were not any navigation or chart distortion issues on computer or phone display access.

The text was written without any noticeable grammatical errors. It was written at a level that a nurse could share the text with a family member and they could understand the information.

The text touches on a cultural diversity and end-of-life care in a very non-offensive way.

This text is a great addition to any course that discusses end of life. It touches on hospice and palliative care, as well as pain control when dying, all in one text. Many texts are lacking this combination.

Reviewed by Michael Torguson, MS, MA, Bioethicist; Past Chair for Education & Policy - Ethics Committee, Rogue Valley Medical Center (Medford, Oregon) on 8/21/16

Health Care is - by definition - a profession that is focused on preventing the end of life. This text aims to guide health care providers through the inevitable process that all patients will experience, divided into stages of care: Anticipation,... read more

Health Care is - by definition - a profession that is focused on preventing the end of life. This text aims to guide health care providers through the inevitable process that all patients will experience, divided into stages of care: Anticipation, In The Moment, Afterwards.

Content is presented in as unbiased a manner as is possible with such a high-emotion subject.

Content is very timely and up to date. There are some references that are older (greater than 10 years), but they are included in such a way that the age of the study does not detract from the predominant thesis in each chapter.

Updating the work to include the latest trends in best clinical practices should not be difficult, as the compartmentalization of the information - while building on previous learning - is not so interwoven as to substantially detract from the flow of the narrative.

Written in such a way as to be accessible to a layperson not clinically trained, but also not too basic for the healthcare provider, the text is clear, concise, and accessible to the reader. When complex clinical information is presented, it is not dumped on the reader; rather there is a "ramp up" feel to the content.

There is good consistency in the book, as well as mercifully few "callback" references to earlier chapters.

The three main content areas (Units?) work well to guide the clinician through the process of learning about the end of life process. Within each of these units, however, the individual chapters - upon first reading - seem to require the healthcare provider to take each chapter in order. Once read and when the content is familiar, however, the chapters are useful as stand-alone references.

Highest marks for the organization and flow of the book. Leading the clinician through the death and dying process in a chronological "presentation of symptoms" order makes the text exceptionally well suited for this subject. Again, once the healthcare provider is familiar with the text, then accessing specific information in non-sequential chapters is not only possible, but easy.

This reviewer experienced no problems with the format of the text.

No errors in grammar, punctuation, or sentence structure/mechanics.

No text can be all things to all people. This text manages to hit the "middle of the bell-shaped curve" in that it is applicable to most people under most circumstances, most of the time. The Ethics chapter will be the most "controversial," as Ethics is - by definition - a morality based, Right-And-Wrong subject. Further, there is no overtly judgmental language when dealing with controversial topics (withdrawing/withholding care, assisted dying, etc.). Being from Oregon, I would have personally liked to see more than one paragraph on assisted suicide, but the author's treatment of the subject is satsifactory.

The layout of each chapter is especially useful. Starting with learning objectives bullet points, the author guides the reader through the content, then wraps up each chapter with three main bullet point "Things You Should Know." The text lends itself to note taking and information retention. Overall, a good text that will be useful to clinicians working with end of life patients, as well as a helpful adjunct for those in the healthcare realm (long term care, acute care, ethics committee, etc.) to supplement their understanding of the issues.

Reviewed by Tina Davis, Health Faculty, Lane Community College on 8/21/16

This book is very comprehensive in its coverage of the topics of nursing at the end of life. And although the book does not include a separate index or glossary, it does provide plenty of terms and definitions within the text in a thoughtful and... read more

This book is very comprehensive in its coverage of the topics of nursing at the end of life. And although the book does not include a separate index or glossary, it does provide plenty of terms and definitions within the text in a thoughtful and organized manner. The website resources at the end is comprehensive.

I found the accuracy of this book to be excellent. With the exception of one small error of two words joined together, I found no other errors. And the inclusion of various perspectives provides an unbiased view of nursing in this context.

The relevance to today's nursing field and hospice care is extremely up-to-date. Having experienced my mother's and father's hospice care at different times within the last six years, I found the advice and information affirming and relevent. Obsolescence is easily avoided with supplementing information when it is necessary. The personal experiences and examples are timeless.

The terms were clearly defined and the examples provided the helpful context. The prose was very accessible and easy to follow and enjoyable to read without being too wordy or technical. For example, p. 60 clearly gives a thorough description of the classifications of pain and differentiating between the mechanisms and temporal patterns.

Each chapter is nicely framed, beginning with the objectives and moving to an introduction and the main ideas, then finishing with "what you should know." This framework provided an easy-to-follow pattern.

The book's modularity is wonderful. The three main parts I. Anticipation II. In The Moment and III. Afterwards provides structure of the individual chapters and their focus. This allows instructors to easily assign readings in individual sections. And the subheadings within the chapters are very useful.

The organization of the book showed topics divided into a simple sequence related to the care of the patient. The three major sections clearly follow the sequence related to the care of the patient. The chapters within the sections are logically divided and clearly presented. The subheadings within the chapters also makes it easy to find individual topics. And even though this book may target nurses, it is organized in a useful fashion for the patient and family member as well.

The figures and tables are nicely formatted and easy-to-read. The Models of Care (p. 39) figures were a bit confusing at first but the explanation in the text following the figures was provided and made it more clear. The tables provided easy-to-reference guides for such areas of questions to ask the patient as well as religious beliefs about death and dying.

I found no grammar errors and the language used corresponded to the nursing field but also provided concrete examples for the lay person.

The book mentioned consideration of different groups of people with its definition of 'diversity' on p. 109. It also provided different religious perspectives of death and dying in the chapter on Diversity and Dying. But more importantly the language and style of the book continually used phrasing of 'inclusiveness' and repeatedly cautioned the nurse to be aware of the care and communication with the patient and family so as not to offend or exclude anyone based on different cultural or ethnic backgrounds.

This book is a valuable resource for anyone, not just a nurse or caregiver, patient or family member of a patient. Its comprehensiveness and validity can be summed up with Susan Lowey's reminder about the importance of care a dying patient receives and how it may not be remembered by the nurse, but it will surely be remembered by the patient's family (p.94).

Table of Contents

Part I. Anticipation

• 1. A Historical Overview of End-of-Life Care
• 2. Types and Variability within Illness Trajectories
• 3. Conceptual Frameworks Guiding Death & Dying
• 4. Models of Organized End-of-Life Care: Palliative Care vs. Hospice
• 5. Initiating Conversations about Goals of Care

Part II. In the Moment

• 6. Management of Pain and Physical Symptoms
• 7. Management of Emotional and Spiritual Distress
• 8. Ethical Concerns in End-of-Life Care
• 9. Care at the Time of Death
• 10. Nurse–Patient–Family Communication

Part III. Afterwards

• 11. Diversity in Dying: Death across Cultures
• 12. Grief and Bereavement

Ancillary Material

About the book.

Nursing Care at the End of Life: What Every Clinician Should Know should be an essential component of basic educational preparation for the professional registered nurse student. Recent studies show that only one in four nurses feel confident in caring for dying patients and their families and less than 2% of overall content in nursing textbooks is related to end-of-life care, despite the tremendous growth in palliative and end-of-life care programs across the country. The purpose of this textbook is to provide an indepth look at death and dying in this country, including the vital role of the nurse in assisting patients and families along the journey towards the end of life. There is an emphasis throughout the book on the simple, yet understated value of effective interpersonal communication between the patient and clinician. The text provides a basic foundation of understanding death and dying, including a brief historical examination of some main conceptual models associated with how patients cope with impending loss. An overview of illness trajectories and models of care, such as hospice and palliative care are discussed. Lastly, the latest evidence-based approaches for pain and symptom management, ethical concerns, cultural considerations, care at the time of death, and grief/bereavement are examined. The goal of this text is to foster the necessary skills for nurses to provide compassionate care to individuals who are nearing the end of life and their families. Every chapter contains a “What You Should Know” section which highlights and reinforces foundational concepts.

About the Contributors

Dr. Susan Lowey works with both juniors and seniors in the traditional Nursing program, teaching Community Health Nursing and Nursing Research at SUNY, Brockport. She earned her PhD in Health Practice Research from the University of Rochester and was awarded a Claire M. Fagin Fellowship from the Building Academic Geriatric Nursing Capacity Program for her post-doctoral work. Improving care at the end of life, with a particular focus on symptom management, is the focus of Dr. Lowey’s research. The majority of her clinical practice has been as a community health hospice nurse providing care for dying patients and their loved ones.

Dr. Lowey holds national certification as a board certified hospice and palliative care nurse (CHPN) through the National Board for Certification of Hospice and Palliative Nurses. In addition, she is a certified ELNEC (End-of-Life Nursing Education Consortium) trainer (Core and Geriatric). She is also an appointed member of the National Board for Certification of Hospice and Palliative Nurses Registered Nurse Examination Development Committee and holds another appointment as the ESPO Representative on the Membership Executive Committee through the Gerontological Society of America. Dr. Lowey also serves as one of the faculty representatives for Omicron Beta, Brockport’s Chapter of Sigma Theta Tau International Honor Society.

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Nurses' moral distress in end-of-life care: A qualitative study

Affiliations.

• 1 9372IRCCS San Raffaele Scientific Institute, Italy.
• 2 18985Vita-Salute San Raffaele University, Italy; Tor Vergata University of Rome, Italy.
• 3 9338ASST Grande Ospedale Metropolitano Niguarda, Italy.
• 4 9268IRCCS Humanitas Institute, Italy.
• 5 Vita-Salute San Raffaele University, Italy.
• 6 18985Vita-Salute San Raffaele University, Italy.
• PMID: 33267730
• DOI: 10.1177/0969733020964859

Background: Moral distress is a neglected issue in most palliative education programmes, and research has largely focused on this phenomenon as an occupational problem for nursing staff.

Research question: The primary outcome of this study was to explore the causes of morally distressing events, feelings experienced by nurses and coping strategies utilised by a nursing population at an Italian teaching hospital. A secondary outcome of this qualitative study was to analyse whether palliative care or end-of-life care education may reduce morally distressing events.

Research design: A hermeneutic-phenomenological qualitative study was performed.

Participants and research context: Participants were recruited through snowball sampling. The interviews were conducted and recorded by one interviewer and transcribed verbatim.

Ethical considerations: Ethical approval was obtained from the Institutional Review Hospital Board.

Findings: Six main themes emerged from the interview analyses: (1) the causes of moral distress; (2) feelings and emotions experienced during morally distressing events; (3) factors that affect the experience of moral distress; (4) strategies for coping with moral distress; (5) recovering from morally distressing events; and (6) end-of-life accompaniment. Varying opinions regarding the usefulness of palliative care education existed. Some nurses stated that participation in end-of-life courses did not help them cope with morally distressing events in the ward, and they believe that existing courses should be strengthened and better structured.

Discussion: In this study, moral distress was often associated with poor communication or a lack of communication between healthcare professionals and the patients and/or their relatives and with the inability to satisfy the patients' last requests. According to our findings, the concept of 'good' end-of-life accompaniment was extremely important to our sample for the prevention of morally distressing events.

Conclusion: Nurses who work in the onco-haematological setting frequently experience moral distress. Determining the causes of moral distress at early stages is of paramount importance for finding a solution.

Keywords: End-of-life; moral distress; nursing staff; psychological stress; qualitative study.

• Adaptation, Psychological
• Qualitative Research
• Stress, Psychological / etiology
• Terminal Care*

• Introduction
• Conclusions
• Article Information

End-of-life hospitalizations defined as those occurring during the last 30 days of life; end-of-life hospice enrollment defined as being enrolled in hospice at the time of death. Error bars represent 95% CI.

End-of-life hospitalizations defined as those occurring during the last 30 days of life.

End-of-life hospice enrollment defined as being enrolled in hospice at the time of death.

eFigure 1. Study Timeline

eFigure 2. Distribution of the Share of Primary Care Evaluation and Management Visits Conducted by Nurse Practitioners

eFigure 3. Scope-of-Practice Regulations by State at the Time of Study

eTable 1. Crude and Adjusted Characteristics of Individuals in States With Restricted vs Full Practice and Do Not Resuscitate Order Authority for Nurse Practitioners

eTable 2. Predicted Probability of End-of-Life Hospitalization by Level of Nurse Practitioner Care and Scope-of-Practice Regulation

eTable 3. Association Between Nurse Practitioner Care Level and End-of-life Outcomes Among Nursing Home Residents With Dementia

eTable 4. Adjusted End-of-Life Hospitalization Rates in States With Restricted vs Full Practice and Do Not Resuscitate Order Authority for Nurse Practitioners

eTable 5. Association Between Nurse Practitioner Care Level, Scope-of-Practice Regulation, and their Interaction With End-of-life Hospitalizations

eTable 6. Adjusted End-of-Life Hospice Enrollment Rates in States With Restricted vs Full Practice and Do Not Resuscitate Order Authority for Nurse Practitioners

eTable 7. Association Between Nurse Practitioner Care Level, Scope-of-Practice Regulation, and Their Interaction With End-of-life Hospice Enrollment

eTable 8. Adjusted End-of-Life Hospitalization Rates by Nurse Practitioner Level Care Level and Scope-of-Practice Regulation Among Residents With High Visit Volume

eTable 9. Adjusted End-of-Life Hospice Enrollment Rates by Nurse Practitioner Care Level and Scope-of-Practice Regulation among Residents with High Visit Volume

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Kosar CM , Thapa BB , Muench U, et al. Nurse Practitioner Care, Scope of Practice, and End-of-Life Outcomes for Nursing Home Residents With Dementia. JAMA Health Forum. 2024;5(5):e240825. doi:10.1001/jamahealthforum.2024.0825

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Nurse Practitioner Care, Scope of Practice, and End-of-Life Outcomes for Nursing Home Residents With Dementia

• 1 Department of Health Services, Policy, and Practice, Brown University School of Public Health, Providence, Rhode Island
• 2 Department of Social Behavioral Sciences, University of California at San Francisco School of Nursing, San Francisco

Question   Is nurse practitioner (NP) care associated with end-of-life outcomes for nursing home residents with Alzheimer disease and related dementias (ADRD), and do these associations differ between states with full vs restrictive NP scope of practice regulations?

Findings   The results of this cohort study including 334 618 US nursing home residents with ADRD indicated that decedents with greater NP involvement at end of life had fewer hospitalizations and higher hospice use. The adjusted differences in outcomes between decedents with extensive vs minimal NP care were larger in states with full scope of practice regulations than in states with restrictive regulations.

Meaning   These findings suggest that state regulations governing NP scope of practice may have implications for end-of-life hospitalizations and hospice use for nursing home residents with ADRD.

Importance   Nursing home residents with Alzheimer disease and related dementias (ADRD) often receive burdensome care at the end of life. Nurse practitioners (NPs) provide an increasing share of primary care in nursing homes, but how NP care is associated with end-of-life outcomes for this population is unknown.

Objectives   To examine the association of NP care with end-of-life outcomes for nursing home residents with ADRD and assess whether these associations differ according to state-level NP scope of practice regulations.

Design, Setting, and Participants   This cohort study using fee-for-service Medicare claims included 334 618 US nursing home residents with ADRD who died between January 1, 2016, and December 31, 2018. Data were analyzed from April 6, 2015, to December 31, 2018.

Exposures   Share of nursing home primary care visits by NPs, classified as minimal (<10% of visits), moderate (10%-50% of visits), and extensive (>50% of visits). State NP scope of practice regulations were classified as full vs restrictive in 2 domains: practice authority (authorization to practice and prescribe independently) and do-not-resuscitate (DNR) authority (authorization to sign DNR orders).

Main Outcomes and Measures   Hospitalization within the last 30 days of life and death with hospice. Linear probability models with hospital referral region fixed effects controlling for resident characteristics, visit volume, and geographic factors were used to estimate whether the associations between NP care and outcomes varied across states with different scope of practice regulations.

Results   Among 334 618 nursing home decedents (mean [SD] age at death, 86.6 [8.2] years; 69.3% female), 40.5% received minimal NP care, 21.4% received moderate NP care, and 38.0% received extensive NP care. Adjusted hospitalization rates were lower for residents with extensive NP care (31.6% [95% CI, 31.4%-31.9%]) vs minimal NP care (32.3% [95% CI, 32.1%-32.6%]), whereas adjusted hospice rates were higher for residents with extensive (55.6% [95% CI, 55.3%-55.9%]) vs minimal (53.6% [95% CI, 53.3%-53.8%]) NP care. However, there was significant variation by state scope of practice. For example, in full practice authority states, adjusted hospice rates were 2.88 percentage points higher (95% CI, 1.99-3.77; P  < .001) for residents with extensive vs minimal NP care, but the difference between these same groups was 1.77 percentage points (95% CI, 1.32-2.23; P  < .001) in restricted practice states. Hospitalization rates were 1.76 percentage points lower (95% CI, −2.52 to −1.00; P  < .001) for decedents with extensive vs minimal NP care in full practice authority states, but the difference between these same groups in restricted practice states was only 0.43 percentage points (95% CI, −0.84 to −0.01; P  < .04). Similar patterns were observed in analyses focused on DNR authority.

Conclusions and Relevance   The findings of this cohort study suggest that NPs appear to be important care providers during the end-of-life period for many nursing home residents with ADRD and that regulations governing NP scope of practice may have implications for end-of-life hospitalizations and hospice use in this population.

Nursing home residents living with Alzheimer disease and related dementias (ADRD) often experience unnecessary hospitalizations and other burdensome care in the last months of life. 1 - 3 Better preemptive medical care in the nursing home—including timely recognition and treatment of acute change in condition, advance care planning, care coordination, and effective symptom management—can help avoid those difficult transitions. 4 , 5 Timely access to hospice services can also help to facilitate comprehensive palliative care for individuals nearing the end of life.

An increase in ADRD-linked deaths, coupled with a rising shortage of geriatricians and other primary care physicians with geriatric expertise, 6 - 8 has increased demand for clinicians with expertise in providing end-of-life care in nursing homes. Nurse practitioners (NPs) are playing an increasingly important role in the medical management of nursing home residents’ care 9 - 11 ; however, the existing literature evaluating the effectiveness of NPs in nursing homes has a number of limitations. 12 For example, existing studies are based on a small number of managed care models 13 - 15 or rely on facility-level staffing measures that fail to capture individual clinician-patient encounters. 1 , 16 , 17 Prior research has shown that NPs provide care coordination, palliative management, and advance care planning, all of which are critical elements of quality end-of-life care for individuals living with ADRD. 13 , 14 , 18 However, no studies, to our knowledge, have empirically evaluated the association between NP care and end-of-life outcomes for this population.

State scope of practice regulations govern whether NPs can practice and prescribe without physician oversight (ie, full practice authority) or whether they must work under a collaborative practice agreement with a physician. Additionally, state regulations determine whether NPs are permitted to sign do-not-resuscitate (DNR) orders (ie, DNR authority). Thus, the ability of nursing home NPs to perform many of the functions necessary to treat acutely ill residents and provide end-of-life care, such as leading advanced care planning discussions or prescribing controlled medications for symptom relief, depends on the state in which the nursing home is located. 19 - 21

The overarching goal of this study is to develop evidence that will inform workforce planning and policy efforts to provide high-quality end-of-life care to people with ADRD. Because NPs provide a significant amount of this care in nursing homes, it is important to assess how their practice, and policies regulating their practice, are associated with outcomes for this population. In this study, we first examined the association between the level of NP involvement in primary care and 2 end-of-life outcomes, hospitalizations and hospice use, among nursing home residents with ADRD who died between 2016 and 2018. We then examined whether these associations varied based on state NP scope of practice regulations governing practice authority and DNR authority.

This cohort study was approved by the Brown University institutional review board, which granted a waiver for the requirement to obtain patient informed consent due to the use of deidentified claims data. This study followed the Strengthening the Reporting of Observational Studies in Epidemiology ( STROBE ) reporting guideline.

We used 2015 to 2018 Medicare enrollment and claims data, including the Medicare Beneficiary Summary File (MBSF), Part A claims, and Part B Carrier claims file for 100% of beneficiaries with ADRD who died during the study window. We also used the Minimum Data Set to identify long-stay nursing home residents and obtained nursing home characteristics from the Certification and Survey Provider Enhanced Reports database (annual nursing home surveys) and Medicare Care Compare data on their website. Finally, we used the Area Health Resources File to obtain county characteristics and the zip code–level Social Deprivation Index developed by the Robert Graham Center. 22 The Area Health Resources File contains over 1000 variables of combined data from Medicare and other government agencies on a diverse set of measures pertaining to county demographics, workforce, and health care supply, among other characteristics. 23

The study population included individuals with ADRD who died between 2016 and 2018, were continuously enrolled in fee-for-service Medicare during the last year of life, and were long-stay nursing home residents. The study observation window included the last 9 months of life, with the first 8 months used as the baseline period to identify the cohort of nursing home residents, ascertain baseline resident characteristics, and assess NPs’ involvement in care. The last month of life was used to measure outcomes (eFigure 1 in Supplement 1 ). Individuals were classified as having ADRD if they had an active ADRD diagnosis indicated in the MBSF condition segment prior to the baseline period. Long-stay residence in a nursing home during the baseline period was assessed using the Residential History File algorithm, 24 which links Medicare claims and assessment data to track daily health care utilization and site of care. Conventionally, individuals who reside in a nursing home for 100 or more days are considered long-stay residents; however, for our analysis, we required individuals to be in a nursing home for the entire 8 months prior to the last month of life, allowing for intermittent hospital stays.

Our main explanatory variable was a 3-category variable representing the proportion of nursing home primary care visits provided by NPs in the 8 months prior to the last month of life. The measure excluded the last month of life, when outcomes were measured, to reduce endogeneity. Adapting methods from prior studies, 25 , 26 we used provider specialty codes to identify carrier claims by primary care providers (ie, primary care clinicians), including NPs, physician assistants, and generalist physicians (ie, general practice, family practice, internal medicine, osteopathic medicine, geriatric medicine, and preventive medicine). We limited claims to encounters with BETOS (Berenson-Eggers type of service) code M4B (nursing home evaluation and management visits).

For each resident, we then calculated the percentage of primary care visits provided by NPs during the 8-month baseline period. We categorized this percentage as a 3-level measure: minimal involvement (<10% of visits conducted by NPs), moderate involvement (10%-50% of visits), and extensive involvement (>50% of visits). We chose this approach rather than assigning a main primary care provider for 3 reasons. First, our focus on the end-of-life period required limiting our observation window to a shorter period of time than other studies have used to assign primary care providers from claims data. 25 , 26 Second, multiple providers are often involved in the end-of-life care of an individual. And third, Centers for Medicare & Medicaid Services regulations require all nursing home residents to have an attending physician who performs a minimum number of visits, meaning that an NP could never be the sole primary care provider in this setting. 27 The distribution of the share of visits conducted by NPs across categories is shown in eFigure 2 in Supplement 1 .

We classified state scope of practice regulations based on the existing literature 28 - 30 and a scoping review we conducted of state advance directive regulations. States were classified as having full practice authority if NPs were permitted to diagnose and treat patients without a collaborative or supervisory agreement with a physician and could prescribe schedule II through V medications without restriction. 28 - 30 Otherwise, states were classified as restricted practice authority. States were classified as having full DNR authority if NPs were permitted to sign DNR orders, including Medical Orders for Life-Sustaining Treatment, and restricted DNR authority if NPs were not permitted to sign. Scope of practice regulations were classified as of 2016, the first year of the study, at which time 25 states had full practice authority and 32 had full DNR authority (eFigure 3 in Supplement 1 ).

We derived 2 outcomes from inpatient and hospice claims: hospitalization within the last 30 days of life and hospice enrollment at death (ie, death occurred during an active hospice episode). Resident-level covariates included age at death, sex, race and ethnicity, dual Medicaid enrollment, indicators for 17 chronic conditions from the MBSF chronic condition segment, years since initial ADRD diagnosis (ie, the first date an International Statistical Classification of Diseases and Related Health Problems, Tenth Revision , diagnosis appeared on a claim), year of death, total number of primary care visits in the baseline period, and the share of visits from physician assistants. Race and ethnicity were included due to known racial and ethnic disparities in nursing home end-of-life care. 31 Race and ethnicity data were obtained from the MBSF and included the self-reported categories of Asian, Black, Hispanic, North American Native, White, other, and unknown. We did not examine physician assistants as part of our primary exposure because they provided only a small fraction of overall visits and are subject to different scope of practice regulations than NPs. Geographic covariates included county population size and density, zip code Medicare Advantage penetration, and Social Deprivation Index. 22

We first used linear probability models to estimate the overall association between NP care level and the 2 end-of-life outcomes, controlling for the aforementioned covariates. We then fit 2 additional models: 1 that additionally controlled for state practice authority and included an interaction between practice authority and NP care level and 1 that controlled for state DNR authority and included an interaction between DNR authority and NP care level. The significance of the interaction terms in these latter models indicated whether the associations between NP care and end-of-life outcomes differed for nursing home residents in states with restrictive vs full scope of practice regulations. Because practice patterns and patient characteristics in states with different regulations may vary in important ways, we included hospital referral region (HRR) fixed effects in all analyses. The HRRs are widely used geographic delineations of health care markets. 32 There are 306 HRRs overall, of which about a third cross state boundaries. Thus, by including HRR fixed effects, the interaction term coefficients were derived from individuals in the same health care market but residing in different states with full vs restricted scope of practice regulations. Adjusted rates of outcomes were calculated via predictive margins, and robust standard errors were used in all analyses. Data were analyzed from April 6, 2015, to December 31, 2018, with Stata MP, version 17.0 (StataCorp LLC). A 2-side P  < .05 was considered statistically significant.

We conducted 3 supplemental analyses. First, we examined sample characteristics by scope of practice regulation status, with or without HRR adjustment. Second, to better understand how residents’ health status varied by NP care level in states with restricted vs full scope of practice, we estimated the probability of hospitalization as a function of all study covariates, excluding the main explanatory variables (NP care and scope of practice). We then predicted the mean probability of hospitalization by NP care level in states with restricted vs full practice and DNR authority. Finally, we assessed the robustness of findings in analyses restricted to residents with a higher volume of baseline visits (ie, at least 8 visits during the 8-month baseline period or a mean of about 1 visit per month).

The sample included 334 618 nursing home decedents with ADRD (mean [SD] age at death, 86.6 [8.2] years; 69.3% female and 30.7% male; 10.1% Black, 1.7% Hispanic, 85.8% White, and 2.5% other race and ethnicity) ( Table ). Overall, 40.5% of residents received minimal NP care, 21.4% moderate NP care, and 38.0% extensive NP care. Compared with residents with minimal NP care, those with more NP involvement were more likely to be Black, to be Medicare and Medicaid dually enrolled, to be located in counties with larger populations, to have more baseline primary care visits, and to have a higher prevalence of anemia, chronic kidney disease, chronic obstructive pulmonary disease, heart failure, serious mental illness, and chronic wounds. eTable 1 in Supplement 1 shows the characteristics of residents in states with restricted vs full scope of practice, which were more comparable after HRR adjustment. eTable2 in Supplement 1 shows the predicted probability of hospitalization as a function of all covariates except for the 2 main explanatory variables (NP care and scope of practice) and shows how these predictions vary by NP care level in states with restricted vs full scope of practice. These results show that residents with moderate and extensive NP care had higher hospitalization risk, based on baseline characteristics, in both types of states.

Figure 1 shows adjusted mean rates of hospitalization within the last 30 days of life and death with hospice for nursing home residents by NP care level (eTable 3 in Supplement 1 shows the point estimates). Adjusted hospitalization rates were lower for residents who had moderate NP care (31.6% [95% CI, 31.3%-32.0%]) and extensive NP care (31.6% [95% CI, 31.4%-31.9%]) compared with residents with minimal NP care (32.3% [95% CI, 32.1%-32.6%]). Adjusted hospice rates were higher for residents who had moderate NP care (55.5% [95% CI, 55.1%-55.8%]) and extensive NP care (55.6% [95% CI, 55.3%-55.9%]) compared with residents with minimal NP care (53.6% [95% CI, 53.3%-53.8%]).

We observed that the associations between NP care and hospitalization varied by state scope of practice. Figure 2 shows adjusted hospitalization rates by NP care level in states with restricted vs full practice authority and restricted vs full DNR authority. eTable 4 and eTable 5 in Supplement 1 show the corresponding point estimates. In states with restricted practice authority, compared with an adjusted mean hospitalization rate of 32.0% for residents with minimal NP care, hospitalization rates were 0.51 percentage points lower (95% CI, −0.96 to −0.05; P  = .03) for residents with moderate NP care and 0.43 percentage points lower (95% CI, −0.84 to −0.01; P  = .04) for residents with extensive NP care (eTable 4 in Supplement 1 ). The difference between the extensive vs minimal NP group was larger in full practice authority states (−1.34 [95% CI, −2.19 to −0.49]; interaction P  = .002) (eTable 5 in Supplement 1 ). Compared with an adjusted mean hospitalization rate of 33.5% for residents with minimal NP care, hospitalization rates were 1.36 percentage points lower (95% CI, −2.28 to −0.45; P  = .004 for residents with moderate NP care and 1.76 percentage points lower (95% CI, −2.52 to −1.00; P  < .001) for residents with extensive NP care (eTable 4 in Supplement 1 ). Hospitalization rates across NP care levels followed similar patterns in states with full vs restrictive DNR authority ( Figure 2 ). One distinction was that the DNR authority main effect coefficient was not statistically significant, whereas the practice authority main effect was positive and statistically significant (1.43 [95% CI, 0.22-2.65]; P  = .02) (eTable 5 in Supplement 1 ). This means that mean hospitalization rates for residents of full practice authority states were higher than rates for residents of restricted practice authority states but converged at increasing levels of NP care.

We similarly observed that the associations between NP care and hospice use varied by state scope of practice. Figure 3 shows adjusted hospice rates by NP care level in states with restricted vs full practice authority and restricted vs full DNR authority. eTable 6 and eTable 7 in Supplement 1 show the corresponding point estimates. In states with restricted practice authority, compared with adjusted hospice rates of 53.5% for residents with minimal NP care, hospice rates were 1.53 percentage points higher for residents with moderate NP care (95% CI, 1.04-2.03; P  < .001) and 1.77 percentage points higher for residents with extensive NP care (95% CI, 1.32-2.23; P  < .001) (eTable 6 in Supplement 1 ). The differences across groups were larger in states with full practice authority. Compared with adjusted hospice rates of 53.8% for residents with minimal NP care, rates for residents with moderate NP care were 3.51 percentage points higher (95% CI, 2.45-4.56; P  < .001), and rates for residents with extensive NP care were 2.88 percentage points higher (95% CI, 1.99-3.77; P  < .001) (eTable 6 in Supplement 1 ). These findings reflect statistically significant interactions between NP care and practice authority, both with regard to moderate vs minimal NP care (1.97 [95% CI, 0.81-3.14]; interaction P  = .001) and to extensive vs minimal NP care (1.11 [95% CI, 0.12-2.09]; interaction P  = .03) (eTable 7 in Supplement 1 ). Hospice rates across NP care levels followed similar patterns in full vs restrictive DNR authority states ( Figure 3 ). However, mean hospice rates, without respect to NP care level, were still higher in full vs restricted DNR authority states, as indicated by the statistically significant DNR authority main effect coefficient (2.02 [95% CI, 0.78-3.23]; P  = .001) (eTable 7 in Supplement 1 ). Findings were broadly consistent in analyses restricted to residents with a higher volume of baseline visits (eTable 8 and eTable 9 in Supplement 1 ).

In this cohort study assessing a national sample of nursing home decedents with ADRD enrolled in fee-for-service Medicare, over one-third of residents (38%) received the majority of their primary care from NPs in the months before death. This is consistent with prior studies showing that NPs are providing an increasing proportion of medical care in nursing homes. 10 , 11 Given the growing size of the ADRD population and shortages of geriatricians and other primary care physicians with the skills and capacity to see patients in nursing homes, 8 these findings suggest that NPs may be filling an important care role during the end-of-life period for many nursing home residents with ADRD.

To our knowledge, this is the first empirical examination of the association between NP care and end-of-life outcomes. Controlling for patient characteristics, visit volume, and geographic factors, we observed that decedents who received moderate and extensive NP care had modestly lower hospitalization rates in the last 30 days of life and higher rates of hospice use compared with decedents with no or minimal exposure to NPs. Decedents with more NP care received more primary care visits on average; however, our models controlled for visit volume, and our findings remained robust when we limited analyses to patients who received a higher volume of visits. This finding suggests that the outcomes are not just associated with NPs providing more frequent visits and may reflect NPs performing specific roles that may help preempt hospitalizations and increase hospice referrals for people with ADRD nearing the end of life. For example, an increasing number of nursing homes are employing or contracting with medical practices that employ NPs to provide more consistent in-house medical coverage. 9 In these roles, NPs can manage acute and chronic illness, coordinate care, provide palliative care, facilitate advanced care planning, communicate with families, and mentor bedside nursing staff, 13 , 14 , 18 all of which may contribute to improved end-of-life outcomes.

Notably, the association between NP care and end-of-life outcomes in the present study varied based on state scope of practice regulations. We found that the differences in outcomes between residents receiving minimal NP care and residents receiving moderate or extensive NP care were larger in states with full authority regulations than in states with restricted authority regulations. We know from the literature that less restrictive NP scope of practice regulations appear to be associated with expanded health care access, particularly for rural and vulnerable populations. 21 , 33 Our findings indicating associations between NP scope of practice regulations and patient outcomes are an important new contribution to this literature.

There are a number of ways in which NP scope of practice regulations may influence care patterns. Full DNR authority may encourage NPs to be more proactive about initiating goals of care discussions with patients and families since NPs can sign a DNR order at the time of discussion, when patients and families agree, rather than having to find a physician to sign the order, which requires extra time and can result in delays in the order being executed. Timely completion of these orders is particularly important when a patient is acutely decompensating to prevent an unnecessary escalation in care due to a physician being unavailable to sign the DNR order. Practice authority, particularly the ability to prescribe schedule II through V medications, may affect access to medications typically used in palliative and end-of-life care to provide pain and symptom relief. Our data are from 2015 through 2018, before many states adopted electronic prescribing for controlled substances and instead required paper prescriptions. Thus, in nursing homes in which physicians are physically present for only a few hours a week or less but an NP is present more regularly, there could potentially be delays or gaps in access to palliative medications if NPs can only prescribe a limited supply or duration of medication under state law. Additionally, while the Centers for Medicare & Medicaid Services does not allow NPs to certify patients as terminally ill to receive hospice services under Medicare, NPs may still refer patients and serve as the attending physician under hospice. 27 In states with restricted practice authority, it may be more difficult for NPs to serve in that role and order treatments requested by the hospice agency. While we examined practice authority and DNR authority separately in our analyses because we expected that these different regulations could be associated with care via different mechanisms, it may also be the case that these different regulations may have an additive association. This is an area for further exploration.

This study has certain limitations. First, we are unable to draw conclusions as to causal relationships between our variables of interest. While the inclusion of a range of covariates and HRR fixed effects strengthens the estimation strategy, residual confounding is still a concern in this observational study. Second, our analyses were focused only on nursing home residents with ADRD enrolled in fee-for-service Medicare and cannot be generalized further. The use of HRR fixed effects also reduced generalizability since estimates do not rely on any variation in outcomes from areas that do not cross state boundaries. Third, our use of administrative data limits our ability to measure dementia severity, and measurement error may differ across levels of NP care. Fourth, because provider specialty codes in carrier claims do not disaggregate NP specialty, it is possible that we captured some NPs working in specialty roles, such as psychiatry or palliative care, rather than in primary care. Similarly, by limiting the analysis to generalist physician codes, we may have missed some specialist physicians who served as primary attending physicians in a nursing home. Finally, we were unable to classify practice models or identify specific mechanisms influencing end-of-life outcomes, such as the initiation of advance care planning due to the use of administrative data.

The findings of this cohort study suggest that NPs are important care providers during the end-of-life period for many nursing home residents with ADRD. The findings also suggest that state regulations governing whether NPs can practice without physician supervision and sign DNR orders may have implications for end-of-life hospitalizations and hospice use in this population.

Accepted for Publication: March 7, 2024.

Published: May 10, 2024. doi:10.1001/jamahealthforum.2024.0825

Open Access: This is an open access article distributed under the terms of the CC-BY License . © 2024 Kosar CM et al. JAMA Health Forum .

Corresponding Author: Elizabeth M. White, APRN, PhD, Center for Gerontology & Health Care Research, Brown University School of Public Health, 121 S. Main St, Box G-S121-6, Providence, RI 02912 ( [email protected] ).

Author Contributions: Drs Kosar and White had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Kosar, Muench, Oh, Rahman, White.

Acquisition, analysis, or interpretation of data: Kosar, Thapa, Muench, Santostefano, Gadbois, Gozalo, Rahman, White.

Drafting of the manuscript: Kosar, Thapa, Rahman, White.

Critical review of the manuscript for important intellectual content: Kosar, Muench, Santostefano, Gadbois, Oh, Gozalo, Rahman, White.

Statistical analysis: Kosar, Thapa, Muench, Santostefano, Gozalo, White.

Obtained funding: Rahman, White.

Administrative, technical, or material support: Santostefano, Gadbois, Oh, Rahman, White.

Supervision: Rahman, White.

Conflict of Interest Disclosures: Drs Kosar, Muench, Gadbois, Gozalo, Rahman, and White and Mr Santostefano reported receiving grants from the National Institute on Aging (NIA) outside the submitted work. Dr Gadbois reported receiving grants from the Commonwealth Fund outside the submitted work. Dr White reported receiving grants from the Centers for Disease and Control Prevention outside the submitted work and being employed by the PACE Organization of Rhode Island outside the submitted work. No other disclosures were reported.

Funding/Support: This study was funded by grants R01AG065312 and P01AG027296 from the NIA and by grant 006963 from the Warren Alpert Foundation.

Role of the Funder/Sponsor: The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Data Sharing Statement: See Supplement 2 .

Study: Nursing Student Beliefs About Death and Dying Can Affect End-of-Life Care

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• Conceptions about death and dying shape how nurses approach end-of-life care.
• By examining their views on death, nursing students can strengthen vital skills.
• A 2023 study revealed areas for improvement in end-of-life care nursing education.

Nurses across all specialties frequently care for patients who are approaching death. While nursing education tends to emphasize physical comfort in end-of-life care, many nurses and nursing students feel unprepared to provide emotional and spiritual support.

In a 2023 study in the Journal of Nursing Education , co-authors Pam Stephenson, Ph.D., RN, and Dana Hansen, Ph.D., APRN, ACHPN, FPCN, investigated nursing and medical students’ beliefs about death and dying. They concluded that misconceptions about death can affect end-of-life care, particularly the spiritual aspects of this care.

“Our findings indicate a need for improved education regarding spiritual care and end-of-life care,” Stephenson told NurseJournal.

What Is End-of-Life Care?

The term refers to the final stage of caring for people who are nearing the end of life. End-of-life nursing care may occur over a period of days, weeks, or longer, depending on each individual case.

End-of-life care differs from palliative care, which focuses on people with serious illnesses and emphasizes managing symptoms alongside treatments intended to cure the illness. When a patient’s palliative care team believes they have fewer than six months to live, they may transfer the patient to hospice care. In a hospice setting, care teams provide comfort and support, including dedicated end-of-life care. However, end-of-life nursing care can occur outside the hospice setting as well.

During end-of-life care, nurses focus on the patient’s physical comfort, mental and emotional needs, and spiritual needs. As the National Institute on Aging explains, “For people nearing the end of life, spiritual needs may be as important as their physical concerns.”

Broadly defined, spirituality touches on meaning, beliefs, values, and connections. Spiritual needs can include connecting with loved ones, resolving unsettled issues, and making peace with death and dying. Patients may also turn to faith for comfort or guidance.

This is where nurses and nursing education sometimes fall short, according to the 2023 study. Study authors pointed out that previous studies have shown that physicians and nurses often report that their education does not equip them to provide spiritual care. Yet by examining their own views about death, nurses can strengthen support skills that improve patient outcomes.

End-of-Life Care: Lessons from the New Study

Examining how nursing students approach questions of death and dying reveals broader lessons for end-of-life care nursing.

The 2023 study explored attitudes toward death among 156 nursing and medical students. By asking participants to reflect on their own wishes around death, the study determined that students naturally approach death with a spiritual perspective.

Participants considered issues of meaning, value, and connection in their self-reflection. While many nurses report discomfort with spiritual care, self-reflection can help build confidence for this role.

When reflecting on the dying process through a personal lens, the participants revealed misconceptions about death. In particular, many assumed that they would have time to plan their death and say goodbye to loved ones.

Students focused on tasks they would want to accomplish before dying, including connecting with loved ones and reflecting on their life. For example, one participant emphasized leaving messages for loved ones, so that, “Whenever they miss me, they can just look back at those videos or letters.”

Similarly, participants romanticized the process of dying. Some indicated a desire to die in a meaningful location, while others discussed being at the center of attention. One participant, for instance, related a desire to “spend my last couple days with my family discussing the high points of my life.”

However, the reality of end-of-life care differs from many of the participants’ perceptions of death.

“The problem for students in healthcare is that death is rarely romantic, pretty, or under human control,” the study concluded,

The study also revealed how examining death and dying raised existential concerns and discomforts for students. Nurses who fear death are less likely to provide spiritual care, according to a 2021 study . This can leave patients and their families feeling disconnected from their care team.

Many nursing students have limited experience with death. For instance, participants in the 2023 study had an average age of 21. As a result, nursing students “may not have experienced the death of anyone significant to them, let alone considered their own deaths.”

By exploring attitudes toward death, nursing education can help students recognize their discomforts and help prepare them for the reality of death in healthcare settings.

End-of-Life Care Advice for Nurses and Nursing Students

How can nurses and nursing students challenge their assumptions about death and develop their end-of-life care skills? Changes to nursing education can play a central role.

“We are hopeful that we have found an educational intervention that has a tremendous impact on our students’ learning,” Stephenson said. The use of online cognitive tools and live simulations allows nursing students to anticipate the needs of patients and their own discomforts or fears around death.

Yet while nursing students benefit from integrating spiritual care into the curriculum, this goal poses challenges. “Many educators report that they themselves were poorly trained in spiritual care and, therefore, lack the skills to teach it — let alone know what to do when spiritual care discussions uncover old wounds for students and educators,” said Stephenson.

When care providers feel uncomfortable delivering spiritual care, it can negatively impact patients. “Presence, listening, and empathy are spiritual care interventions that are lost opportunities when providers avoid spiritual care,” the study stated. Nurses who withdraw because of a discomfort with spiritual care can leave patients and their families feeling unsupported.

Fortunately, providing spiritually sensitive end-of-life care draws on skills that nurses apply in many other areas of their practice.

“Use your observational skills to assess your patient and their family’s needs,” Stephenson recommended. “Are relational conversations or spiritual care important for them and how do you feel about that? If you are uncomfortable addressing these needs, who can you turn to for help?”

Nurses and nursing students can also commit to examining their personal relationship with death, understanding that their growth as an individual and a care provider will continue long after leaving nursing school.

“Remember that everyone has a story to share,” Stephenson advised, “and the power of being a nurse lies in the ability to connect with others on a human level to hear those stories.”

Stephenson, P et al. (2023). Nursing and Medical Students’ Responses About End-of-Life Communication Reveal Educational Opportunities for Spiritual Care . PubMed

Providing Care and Comfort at the End of Life . (2022). NIA

Dalcali B, et al. (2022). What Intern Nursing Students in Turkey Think About Death and End-of-Life Care? A Qualitative Exploration . PubMed

Page last reviewed on January 6, 2024

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Case Studies: End of Life

An 86-year-old female patient admitted to hospital due to an increasing inability to cope at home and recent fall in which she suffered a broken hip. She has previously been diagnosed with COPD, hypertension and increasing cognitive deficits. While in recovery in hospital, an abdominal mass has been found (malignancy suspected but not confirmed), she has had a decrease in her ability to care for herself, difficulty swallowing with increasing aspiration risk, early stages of renal failure and an exacerbation of her cognitive issues. The patient does not have a formal Advance Directive nor has she assigned a Power of Attorney. She has three daughters and one son who is a cardiologist and lives out of the province. The daughters have demanded that the patient be a full code, requested that transfer be made to ICU with a PEG tube placed and dialysis started should it be required. The son phoned you over the weekend and stated that given his mothers age and complex medical situation he expects that she would be provided symptom management and comfort care but that no aggressive measures should be undertaken to interfere with the natural decline and progression of his mother’s diseases. He has requested regular updates regarding her status and any interventions or treatments proposed.

What are some of the ethical issues in this case?

• Does ‘increasing cognitive defects’ = lack of capacity?
• Are any ethical principles in conflict? Autonomy? Beneficence? Nonmaleficence?
• Can an SDM demand treatment?
• Who is responsible for proposing a plan of care?

Mr. Parker is an 88-year-old resident of your LTC home with end-stage Alzheimer’s. He is wheelchair bound and spends most of his days sleeping in his wheelchair near a window facing the garden. He needs to be spoon fed but has recently started to refuse to eat. Mr. Parker has three children, one of whom is very involved in the care of her father. The team approaches the daughter about her father refusing to eat, and feels that his refusal is legitimate. Thus, they propose changing the plan of care to palliation. The daughter absolutely refuses, claiming that “you cannot kill my father, I want everything done to keep him living!”

• Do we know whether the resident is capable to make his own health care decisions?
• Are there any known wishes from Mr. Parker? What would he want? What are his values?
• Is his daughter the substitute decision-maker? Can she, in this role, demand treatment and expect that you comply?

Mrs. Beaudoin, who is 97 years old, was admitted to your LTC facility 6 years ago. Shortly after becoming a resident, she suffered a cardiac arrest and was found to be unresponsive by the staff; CPR was initiated for a total of 20 minutes prior to return of spontaneous circulation. She has an advanced directive stating that she agrees to “transfer to an acute care facility”, but other options, such as CPR and intubation, were not explicitly addressed in this document. She has no formal Power of Attorney.

Initially, Mrs. Beaudoin had lived at your facility watching TV for most of the day. She was wheelchair bound and required assistance with most activities of daily living (ADLs). Her husband lives at your facility with her and is quite frail with moderate dementia. Mrs. Beaudoin is frequently visited by her large extended family, which comprises 4 children and 5 grandchildren. She is known to have cancer throughout much of her body, moderate dementia, a very bad heart, and type-2 diabetes.

After her cardiac arrest and a short stay in the Hospital ICU, Mrs. Beaudoin is brought back to your facility able to breathe on her own, but with a moderate -severe brain injury caused by lack of oxygen after her cardiac arrest; this has left her unable to communicate in any meaningful way with others. She is receiving thickened fluids as her source of nutrition and hydration, but is only able to consume about half of the calories that would be needed to keep her at her current weight. Unfortunately her health begins to decline further shortly after returning.

The team decides to hold a family conference with the resident’s children, and proposes a plan of treatment that would focus on comfort care only, excluding CPR if needed again. The patient’s eldest daughter does not agree and states that her mother is “a fighter” and wanted to live to be 100 years old so that she could receive a letter from the Queen. The daughter asks that her mother be transferred back to the acute care hospital to receive the care of “experts” and so that she could be seen by a surgeon for surgery and chemotherapy for her cancer.

The treating physician discusses the case with the intensivist on call at the hospital over the telephone. The intensivist agrees that the prognosis is extremely poor and likely the resident would not benefit from further invasive treatment. The intensivist at TOH holds a family conference with the family and team at the LTC home over the telephone. He identifies himself as an expert in the field. The older daughter, reiterates their requests to the intensivist.

• Who is the appropriate substitute decision-maker (SDM) in this case?
• If there is more than one SDM, what should you do if they disagree?
• Because we know Mrs. Beaudoin’s desire to live to be 100, must we ensure that “everything is done” in an attempt to prolong her life?

Mrs. Green, a 75-year-old patient with renal failure, currently on dialysis, who also has COPD, moderate dementia, diabetes and a new diagnosis of stage one breast cancer. There is also a past history of depression according to the family. She has been admitted to your ICU after falling down her stairs at home and is in critical condition with multiple fractures to her hip, ribs, wrists and neck. Mrs. Green does not have the capacity to make her own medical decisions and has recently started to refuse eating. Upon discussion with GI Specialists, the team agrees that the patient is not an appropriate candidate for a PEG (feeding) tube. The patient’s daughter, who is her POA, insists that the you proceed with the placement of the PEG, stating that if the tube is not placed she will contact her lawyer and proceed with legal action against the physician and hospital.

• Do we know the patient’s wishes, or values?
• Will the fact that the team feels the patient is not medically appropriate (considering risks, benefits, and likelihood of success) for a PEG tube be the deciding factor? That is, can the daughter demand the PEG tube and expect that the team provides it?

Mr. Wilson, a 51 y.o. male patient, is admitted to the Intensive Care Unit in critical condition after a motor vehicle accident. He presented unconscious and is therefore unable to make his own medical decisions. The family of this patient provided a detailed formal advance directive which indicated that in the event of a traumatic injury such as this one, where the outcome is uncertain, the patient would consent to aggressive medical intervention in an attempt to stabilize and determine the severity of his injury. Life-sustaining interventions were therefore pursued.

After a myriad of test and a set of neurologic assessments were performed, it was determined that an anoxic brain injury occurred and it was not clear whether the patient would ever regain consciousness. The team needed some time to clearly establish a diagnosis, and the family members were kept informed of any progress that was made.

Several weeks passed as the patient stabilized, and the health care team was finally confident that the patient had met the criteria for being in a Persistent Vegetative State, a diagnosis that was presented to the family. According to the advance directive, if the patient were ever in a situation where their continued existence would be in such a state, he would want all life-sustaining intervention withdrawn, and be allowed to die. The family (spouse is no longer in the picture, 18 y.o. daughter, 20 y.o daughter, and 14 y.o. son) are presented with this formal diagnosis of PVS and are willing to continue to assume the responsibility of SDMs. The 14 y.o. son is adamant that his father is a ‘fighter’ and demands the team continue to ‘do everything possible’, and provide the most aggressive care they can. The 18 y.o. daughter agrees with the son, but the 20 y.o. daughter wants to respect her father’s wishes and refuse further life-sustaining measures.

• Who is(are) the designated SDM(s)?
• Who do we listen to when they disagree?
• Can the SDM(s) consent to a decision that would mean the death of the patient?

A 75-year-old healthy male was working on the roof of his house when he slipped and fell 10 ft. to the ground. He was knocked unconscious. When the paramedics arrived he was awake but confused. His vital signs were stable (e.g., Glasgow Coma Scale [GCS] score of 14). He was immobilized with a C-collar and backboard and taken to the ED. Shortly after arrival in the ED he became more confused, then sleepy. His GCS score decreased from 14 to 10. The attending emergency physician was concerned that perhaps the patient had a significant head injury and was in the process of arranging for a CT scan when the patient’s wife arrived. The patient’s condition continued to deteriorate, to a GCS score of 8. The emergency physician prepared to intubate him, but when she discussed this with the patient’s wife, the wife became upset and stated that her husband had a “living will,” which specifies that, if he became critically ill, he would not want any resuscitative interventions, including intubation.

*From: Pauls, M. et al. (2002). Ethics in the Trenches: preparing for ethical challenges in the emergency department. CJEM, 4:1, Pg. 45.

• Was the patient adequately informed when they declared their wishes? Did they put these wishes into a particular context? That is, were they intended for reversible, or irreversible illness?
• Is the patient’s wife required to make a decision in the best interests of the patient? Who decides what is ‘best’?

A 90 year old female, Mrs. Ruth, from home with her daughter, is admitted to hospital after sustaining a hip fracture. She has a history of chronic obstructive pulmonary disease on home oxygen and moderate to severe aortic stenosis. (Obstruction of blood flow through part of the heart) She undergoes urgent hemiarthroplasty (hip surgery) with an uneventful operative course.

The patient and her family are of Jewish background. The patient’s daughter is her primary caregiver and has financial power-of-attorney, but it is not known whether she has formal power of attorney for personal care. Concerns have been raised to the ICU team about the possibility of elder abuse in the home by the patient’s daughter.

Unfortunately, on postoperative day 4, the patient develops delirium with respiratory failure secondary to hospital acquired pneumonia and pulmonary edema. (Fluid in the lungs) Her goals of care were not assessed pre-operatively. She is admitted to the ICU for non-invasive positive pressure ventilation for 48 hours, and then deteriorates and is intubated. After 48 hours of ventilation, it was determined that due to the severity of her underlying cardio-pulmonary status (COPD and aortic stenosis), ventilator weaning would be difficult and further ventilation would be futile.

The patient’s daughter is insistent on continuing all forms of life support, including mechanical ventilation and even extracorporeal membranous oxygenation (does the work of the lungs) if indicated. However, the Mrs Ruth’s delirium clears within the next 24 hours of intubation, and she is now competent, although still mechanically ventilated. She communicated to the ICU team that she preferred 1-way extubation (removal of the ventilator) and comfort care. This was communicated in writing to the ICU team, and was consistent over time with other care providers. The patient went as far to demand the extubation over the next hour, which was felt to be reasonable by the ICU team.

The patient’s daughter was informed of this decision, and stated that she could not come to the hospital for 2 hours, and in the meantime, that the patient must remain intubated.

At this point, the ICU team concurred with the patient’s wishes, and extubated her before her daughter was able to come to the hospital.

The daughter was angry at the team’s decision, and requested that the patient be re-intubated if she deteriorated. When the daughter arrived at the hospital, the patient and daughter were able to converse, and the patient then agreed to re-intubation if she deteriorated.

• Who should make decisions in this situation?   Should the ICU team have extubated the patient?
• Do religious beliefs constitute a justification for demanding treatment when it is not indicated?
• Does the change in the patient’s decision mean that she lacked the capacity to make the decision in the first place, or that she was not well informed?

A 65 year-old female patient was admitted to hospital in mid-July with a diagnosis of Metastatic Stomach Cancer and for not being able to meet her caloric intake at home. This patient is married, with three adult children (two in town, one in a different city, 6 hours away). She is a very proud and attentive grandma to two grandchildren, her own mother is still alive, and she has four siblings all living in Montreal. This patient has been followed in Montreal by an Oncologist for the past 3 years. 80% of her stomach was removed, and she currently has a CADD pump for pain – a small pump designed to deliver medication when patient’s are up and about. In developing a treatment plan with this patient, her physician first considered two options: 1) Peg tube – This was not considered medically appropriate because of the significant risks involved, or 2) Naso-Gastric tube – This was not an acceptable option, according to the patient, because of the risks involved and impact on her quality of life.

At this point Total Parenteral Nutrition (TPN) was initiated as the only appropriate option to fulfil the patient’s nutritional needs. TPN is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. The method is used when a person cannot or should not receive feedings or fluids by mouth.

The patient remained in hospital and received TPN, with the goal of receiving home TPN through the local home-care provider. A referral was made for this home service, but due to the short life expectancy of the patient, she did not meet the required criteria and was not added to the waiting list. Despite this the patient’s goals remained consistent: enjoy an acceptable quality of life, be with and see her grand children, and be able to go home so that she can spend her final days with her family.

• Without having more information, can we know if the process for assessing home-TPN eligibility is fair?
• Without knowing that TPN would not be provided at home, was this patient fully informed in making a decision to consent to the initial TPN in hospital? That is, would her decision to initially pursue it have changed, if she knew that she would be required to receive it in hospital?

The patient, Mr. Ramsey, is a 97-year-old man who lives alone. His son lives in an apartment upstairs and visits almost daily. Both the son and daughter of this patient are designated as Power of Attorney for personal care. Past medical history included atrial fibrillation, chronic heart failure, COPD, and deafness and visual impairment for which, a communication board is normally used. Mr. Ramsey came to the emergency department with fever and cough; admitted with chronic heart failure in June of last year. A chest x-ray was performed and Mr. Ramsey was put on antibiotic treatment; two weeks later an additional chest x-ray showed marked improvement

At this juncture Mr. Ramsey’s family noted that he was no longer talking, unable to eat or weight bear on his right side. A CT scan initially showed nothing, but 2 days later a stroke was found in the left brain. Speech-language pathology was asked to see the patient that day.

The SLP assessment revealed the following:

• Patient was essentially non-verbal, he could not use communication board from home, and he had weakness on the right side of his body.
• The patient’s son and/or daughter were usually present during assessment.
• With regard to swallowing, the patient had a poor arousal level, and SLP was unable to assess swallowing safely. Mr. Ramsey had not had food or liquids by mouth (NPO) for three days, however, he was on IV fluids.

With the above findings, SLP recommended the following:

• That Mr. Ramsey remain NPO with IV fluids, and introduced to the family the potential for tube feeding. It was noted that this is considered Best Practice for Stroke if a patient is NPO after 48 hours. Because Mr. Ramsey was now NPO for three days, and due to the severity of the swallowing problem (dysphagia), SLP also informed the family that NG (nasogastric) feeding was going to be recommended to the patient’s physician as an option. SLP encouraged the daughter, who was present at the time of the SLP assessment, to discuss with her brother whether a feeding tube would be something their father would want and to let the doctor know. These recommendations were communicated to the doctor that day at rounds.

After rounds the following day, the patient’s son came to speak to SLP and the physician about feeding tubes, and told the doctor that they would like to consent to the NG that was proposed. The doctor informed the son that it was too late in the day to get a surgical consult, so a decision made to wait.

The events that followed:

• Day 4 – SLP asked to re-evaluate the patient, no change in recommendation.
• Day 5 – Insertion of NG was deferred, and doctor was to discuss with family.
• Day 6 – SLP again recommended NG; doctor’s note to discuss patient’s poor prognosis with family.
• Day 9 – SLP was again asked to re-evaluate. Patient was alert, still severe communication difficulty but able to swallow sips of water only with some difficulty. Made recommendation to doctor to keep Patient NPO, recommended NG while continuing to work with Patient to increase his oral intake
• Day 10 – At rounds, a discussion of day 9 events was raised, and doctor requested family meeting be arranged. A meeting was arranged for day 11. The patient’s daughter wrote her consent for NG in the doctor’s progress notes of chart.
• Day 11 – Doctor first attempt at NG insertion, but was unable; surgeon was notified but did not come that evening; Patient’s condition worsened.
• Patient’s son called the unit, and a nurse informed him of his father’s condition. The son agreed to have the doctor on call contacted, and both the son and daughter agreed to make Patient comfort care only.
• Was the standard of care met with apparent delays in treatment?
• Was a communication failure responsible for the apparent delays?
• What steps can be taken to ensure and encourage providers to have difficult conversations, especially at the end of life?

73-year-old female admitted to hospital with aspiration pneumonia and sepsis.  Past medical history of multiple CVA’s, PEG tube feeding, multiple pressure ulcers.  Patient able to open eyes but not able to follow any commands or respond verbally.  Patient came to hospital from home with her wife.  On admission, the wife was adamant that the patient be a full code. Wife seemed to be unclear regarding patient’s current medical/functional condition, and the health care team felt that due to unrealistic expectations of the wife, the patient was suffering.  The team was struggling with the goals of care that were demanded. Goals of care were only changed when a new physician took over the care of the patient, and was willing to intervene.

• Must the physician/health care team acquiesce to all demands by a substitute decision-maker? What were the reasons she provided for wanting “full code”?
• What would the patient want in this case if she could tell the team? What would it mean to support her wishes?
• What reasons were given by the first physician to not make the patient full code? And from the second physician for agreeing to full code?

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• End-of-Life Decision Making: Case 1
• Markkula Center for Applied Ethics
• Focus Areas
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• Conserved Patient

End-of-Life Decision Making

A physician has questions for a public guardian in charge of the medical care for a conserved patient.

Mrs. Doe is conserved because of her severe dementia and has been a nursing home patient on Medi-Cal for more than five years. She has no family and left no written instructions about her health care wishes. In the past two years, she has become unable to walk or to follow any simple commands. She has not spoken in months. During the past year, she has required spoon-feeding, and she has been taking progressively longer to eat each meal. Because of episodes of coughing and possibly choking, her diet has been changed to puree with thick liquids. She still seems to prefer some foods, and the staff can tell you which foods she will usually spit out. She has been hospitalized twice for pneumonia in the past year but has recovered without needing ICU treatment.

One Saturday evening, Mrs. Doe is congested. She begins running a fever, and her breathing seems labored. The nursing home staff calls 911 and sends the patient to the hospital. The emergency room physician consults with the internist and the pulmonologist, and the patient goes to the intensive care unit. She is intubated and put on a ventilator. After two days of antibiotics and vigorous suctioning, she seems to be breathing better, but she has required restraints to keep her from pulling out the breathing tube and sedatives so she does not try to hit the ICU staff.

You come to see Mrs. Doe in the ICU on Monday afternoon. On your way to see her, you get a message that the nursing home has just called you to see if Mrs. Doe will have a feeding tube placed while she is in the hospital. They point out that she has been losing weight and takes so long to eat a meal that it is impacting the staff's ability to get other jobs done. When you arrive in the ICU, the patient is still on the ventilator, and each wrist has a binder that secures her to the bed frame. Although she is somewhat sedated, she seems uncomfortable, and there is still an aura of panic that penetrates her drug haze.

The ICU physician is glad to see you because he has lots of questions about what happens next with the patient.

• Is she is "full code"? Should they "do everything"? - i.e., should she be resuscitated if she suffers a cardiac arrest?
• Do you give permission for them to continue to restrain her arms so that she does not pull out the tubes?
• Can the nursing home do IV antibiotics?
• Will the nursing home accept her back if she overstays her seven-day bed hold?
• Will she be transferred back to the hospital again for her next bout of pneumonia?

Elizabeth Menkin is a physician in geriatric and internal medicine at Kaiser-Permanente San Jose/Santa Teresa. She is the founder of Coda Alliance, a Silicon Valley community coalition for end-of-life care.

Will your loved ones’ end-of-life care match their wishes?

Case western reserve nursing researcher to study how to improve end-of-life care with $3.3 million national cancer institute grant.

More than 600,000 people in the United States will die of cancer this year, according to the National Cancer Institute (NCI). Many will receive care they didn’t want in their final stages of life, leaving their caregivers with unresolved grief and regret.

But with a $3.3 million grant from NCI at the National Institutes of Health, Sara L. Douglas , the Gertrude Perkins Oliva Professor in Oncology Nursing at Case Western Reserve University’s Frances Payne Bolton School of Nursing , will study the variables that determine high-quality end-of-life care for both patients and their caregivers.

The five-year study focuses on enrolling 300 patients with stage four lung, pancreatic and gastrointestinal cancers and their caregivers.  

Douglas, who has conducted research with patients with advanced cancer and their caregivers for about 10 years, and her team will collect data to gauge whether patients are: 

• Receiving care in line with their wishes;
• If the objectives of care for patients and caregivers coincide; and
• Whether the caregiver is feeling guilty or suffering from complicated grief as a result of their loved one’s passing.

Poor-quality end-of-life care has been associated with prolonged hospital stays, poor patient and caregiver quality of life and prolonged patient suffering. However, despite the important role of the caregiver in end-of-life cancer care, outcomes for caregivers after the patient has died haven’t been fully explored, Douglas said.

“The delivery of quality end-of-life care is an important component of cancer care and involves not only the patient but their family as well,” she said. “Decades of research have shown that current approaches to the delivery of quality end-of-life care have not been successful in providing care that is consistent with patients’ wishes or in enhancing family caregivers’ post-death adjustment.”

Douglas said their research is believed to be the first on how to define quality end-of-life care as care that benefits both the patient and caregiver. 

“We hope that findings from this study will lead to interventions that will enhance communication and other identified factors that improve quality end-of-life care for both patients and their caregivers,” she said.

For more information, contact Patty Zamora at [email protected] .

4 End-of-Life Care (Hospice Care) Nursing Care Plans

Caring for a loved one at the end of their life can be a challenging and emotional experience. However, with the right nursing care plan in place, it can also be a time of peace, comfort, and dignity. In this article, we’ll explore the essential components of end-of-life care, including hospice care and nursing care plans .

Table of Contents

What is end of life care, nursing problem priorities, nursing assessment, nursing diagnosis, nursing goals, 1. promoting effective coping abilities, 2. decreasing tolerance to activity, 3. providing emotional support and assisting in grieving, 4. managing pain, recommended resources.

End-of-life care is a specialized form of care that is provided to individuals who are near the end of their lives. This care is designed to manage physical, emotional, and spiritual symptoms and to improve the quality of life for both the patient and their loved ones. End of life care can be provided in a variety of settings, including at home, in a hospital, or in a hospice.

Nursing care involves the support of the general well-being of our patients, the provision of episodic acute care and rehabilitation, and when a return to health is not possible a peaceful death. Dying is a profound transition for the individual. As healthcare providers, we become skilled in nursing and medical science, but the care of the dying person encompasses much more. Certain aspects of this care are taking on more importance for patients, families, and healthcare providers.

Hospice care provides comprehensive physical, psychological, social, and spiritual care for terminally ill patients. Most hospice programs serve terminally ill patients from the comforts and relaxed surroundings of their own homes, although there are some located in inpatient settings. The goal of the hospice care team is to help the patient achieve as full life as possible, with minimal pain, discomfort, and restriction. It also emphasizes a coordinated team effort to help the patient and family members overcome the severe anxiety , fear , and depression that occur with a terminal illness. To that end, hospice staffs encourage family members to help and participate in patient care, thereby providing the patient with warmth and security and helping the family caregivers begin the grieving process even before the patient dies.

Everyone involved in this method of care must be committed to high-quality patient care, unafraid of emotional involvement, and comfortable with personal feelings about death and dying . Good hospice care also requires open communication among team members, not just for evaluating patient care but also for helping the staff cope with their own feelings.

Recent studies have identified barriers to end-of-life care including patient or family member’s avoidance of death, the influence of managed care on end-of-life care, and lack of continuity of care across settings. In addition, if the dying patient requires a lengthy period of care or complicated physical care, there is the likelihood of caregiver fatigue (psychological and physical) that can compromise the care provided.

The best opportunity for quality care occurs when patients facing death, and their families, have time to consider the meaning of their lives, make plans, and shape the course of their living while preparing for death.

Nursing Care Plans and Management

During end-of-life care, nursing care planning revolves around controlling pain, preventing or managing complications, maintaining the quality of life as possible, and planning in place to meet the patient’s and/or family’s last wishes.

The following are the nursing priorities for patients in hospice care:

• Provide symptom management and comfort measures
• Facilitate open and honest communication
• Support decision-making and advance care planning
• Coordinate interdisciplinary care
• Offer emotional and spiritual support
• Respect cultural and religious beliefs
• Facilitate effective communication and support
• Coordinate hospice or palliative care services
• Provide bereavement support
• Ensure patient and family-centered care

Assess for the following subjective and objective data:

• Patient reports experiencing increased pain or discomfort.
• Patient expresses feelings of sadness, anxiety, or fear.
• Patient expresses a desire for emotional support or spiritual guidance.
• Patient reports changes in appetite, sleep patterns, or energy levels.
• Patient shares their wishes and preferences for end-of-life care.
• Palliative symptoms such as pain, dyspnea , nausea , or vomiting .
• Physical changes such as changes in skin color, coolness, or mottling.
• Decreased responsiveness or level of consciousness.
• Vital signs indicating impending death, such as weak or irregular pulse, decreased blood pressure, or altered respirations.
• Family members or caregivers report observations of decreased eating, drinking, or engagement in daily activities.

Following a thorough assessment , a nursing diagnosis is formulated to specifically address the challenges associated with hospice care based on the nurse ’s clinical judgement and understanding of the patient’s unique health condition. While nursing diagnoses serve as a framework for organizing care, their usefulness may vary in different clinical situations. In real-life clinical settings, it is important to note that the use of specific nursing diagnostic labels may not be as prominent or commonly utilized as other components of the care plan. It is ultimately the nurse’s clinical expertise and judgment that shape the care plan to meet the unique needs of each patient, prioritizing their health concerns and priorities.

Goals and expected outcomes may include:

• The client will identify resources within themselves to deal with the situation.
• The client will visit regularly and participate positively in the care of the patient, within the limits of their abilities.
• The client will express a more realistic understanding and expectations of the patient.
• The client will provide an opportunity for the patient to deal with the situation in own way.
• The client will identify negative factors affecting performance and eliminate/reduce their effects when possible.
• The client will adapt to his/her own lifestyle to energy level.
• The client will verbalize understanding of the potential loss of ability in relation to the existing condition.
• The client will maintain or achieve a slight increase in activity tolerance evidenced by an acceptable level of fatigue/ weakness .
• The client will identify and express feelings appropriately.
• The client will continue normal life activities, looking toward/planning for the future, one day at a time.
• The client will verbalize understanding of the dying process and feelings of being supported in grief work.
• The client will experience personal empowerment in spiritual strength and resources to find meaning and purpose in grief and loss.
• The client’s family will verbalize understanding of the stages of grief and loss, and ventilate conflicts and feelings related to illness and death.
• The client will report pain is relieved/controlled.
• The client will follow the prescribed pharmacological regimen.
• The client will demonstrate the use of relaxation skills and diversional activities as indicated.
• The client’s family will cooperate in the pain management program.

Nursing Interventions and Actions

Therapeutic interventions and nursing actions for patients in hospice care may include:

Family coping for patients in hospice care involves a range of emotional, psychological, and practical responses. Families may experience anticipatory grief, stress, and a need for support as they navigate the impending loss of their loved one. They may engage in various coping strategies, such as seeking emotional support from healthcare providers, connecting with support groups, or utilizing spiritual or cultural resources to find comfort and meaning during this challenging time.

Assess the level of anxiety present in the family and/or SO. Anxiety level needs to be dealt with before problem-solving can begin. Individuals may be so preoccupied with the client’s own reactions to situations that they are unable to respond to another’s needs.

Determine the level of impairment of perceptual, cognitive, and/or physical abilities. Evaluate illness and current behaviors that are interfering with the care of the patient. Information about family problems will be helpful in determining options and developing an appropriate plan of care.

Note the patient’s emotional and behavioral responses resulting from increasing weakness and dependency Approaching death is most stressful when patient and/or family coping responses are strained, resulting in increased frustration, guilt, and anguish.

Determine current knowledge and/or perception of the situation. Provides information on which to begin planning care and make informed decisions.

Assess the current actions of SO and how they are received by the patient. Lack of information or unrealistic perceptions can interfere with the caregiver’s and/or care receiver’s response to the illness situation.

Establish rapport and acknowledge the difficulty of the situation for the family. May assist SO to accept what is happening and be willing to share problems with staff.

Discuss underlying reasons for patient behaviors with family. When family members know why the patient is behaving differently, it may help them understand and accept or deal with unusual behaviors.

Assist family and patient to understand “who owns the problem” and who is responsible for resolution. Avoid placing blame or guilt. When these boundaries are defined, each individual can begin to take care of own self and stop taking care of others in inappropriate ways.

Involve SO in information giving, problem-solving, and care of patients as feasible. Instruct in medication administration techniques, and needed treatments, and ascertain adeptness with the required equipment. Significant others (SO) may be trying to be helpful, but actions are not perceived as being helpful by the patient. In addition, may be withdrawn or can be too protective.

Include all family members as appropriate in discussions. Provide and/or reinforce information about terminal illness and/or death and future family needs. Information can reduce feelings of helplessness and uselessness. Helping a patient or family find comfort is often more important than adhering to strict routines. However, family caregivers need to feel confident with specific care activities and equipment.

Tolerance to activity in patients in hospice care may vary based on their individual condition and prognosis. Some patients may have reduced physical stamina and may experience fatigue or shortness of breath even with minimal activity. It is important to assess their activity tolerance regularly, adjust activity levels accordingly, and provide support and assistance to help them maintain their desired level of activity while managing their symptoms and ensuring their comfort and safety.

Assess sleep patterns and note changes in thought processes and behaviors. Multiple factors can aggravate fatigue, including sleep deprivation , emotional distress, side effects of medication, and the progression of the disease process.

Document cardiopulmonary response to activity (weakness, fatigue, dyspnea, arrhythmias, and diaphoresis). Can provide guidelines for participation in activities.

Monitor breath sounds. Note feelings of panic or air hunger. Hypoxemia increases the sense of fatigue and impairs the ability to function.

Recommend scheduling activities for periods when the patient has the most energy. Adjust activities as necessary, reducing intensity level and/or discontinuing activities as indicated. Prevents overexertion, and allows for some activity within the patient’s ability.

Encourage the patient to do whatever is possible: self-care , sitting in a chair, and visiting with family or friends. Provides a sense of control and a feeling of accomplishment.

Instruct patient, family, and/or caregiver in energy conservation techniques. Stress the necessity of allowing for frequent rest periods following activities. Enhances performance while conserving limited energy, preventing an increase in the level of fatigue.

Demonstrate the proper performance of ADLs, ambulation , or position changes. Identify safety issues: use of assistive devices, the temperature of bath water, keeping travel ways clear of furniture. Protects patient or caregiver from injury during activities.

Encourage nutritional intake and use of supplements as appropriate. Necessary to meet energy needs for activity.

Provide supplemental oxygen as indicated and monitor response. Increases oxygenation. Evaluates the effectiveness of therapy.

The process of grieving for patients in hospice care is a natural and individual experience that can vary in duration and intensity. It involves emotional, physical, and spiritual aspects as patients and their loved ones come to terms with the impending loss. Providing compassionate support, facilitating open communication, and offering resources for emotional and spiritual guidance can help patients and their families navigate the grieving process during this sensitive time.

Assess the patient and/or SO for the stage of grief currently being experienced. Explain the process as appropriate. Knowledge about the grieving process reinforces the normality of feelings and/or reactions being experienced and can help patients deal more effectively with them.

Monitor for signs of debilitating depression, statements of hopelessness , and desire to “end it now.” Ask the patient direct questions about the state of mind. The patient may feel vulnerable when recently diagnosed with an end-stage disease process and/or when discharged from the hospital. Fear of loss of control and/or concerns about managing pain effectively may cause the patient to consider suicide .

Investigate evidence of conflict; expressions of anger; and statements of despair, guilt, hopelessness, and inability to grieve. Interpersonal conflicts and/or angry behavior may be the patient’s or SO’s way of expressing or dealing with feelings of despair and/or spiritual distress, necessitating further evaluation and support.

Determine the way that the patient and/or SO understand and respond to death. Determine cultural expectations, learned behaviors, experience with death (close family members and/or friends), beliefs about life after death, and faith in Higher Power (God) . These factors affect how each individual faces death and influences how they may respond and interact.

Provide an open, nonjudgmental environment. Use therapeutic communication skills of active listening, affirmation, and so on. Promotes and encourages realistic dialogue about feelings and concerns.

Encourage verbalization of thoughts and/or concerns and accept expressions of sadness, anger, and rejection. Acknowledge the normality of these feelings. Patients may feel supported in the expression of feelings by the understanding that deep and often conflicting emotions are normal and experienced by others in this difficult situation.

Facilitate the development of a trusting relationship with the patient and/or family. Trust is necessary before the patient and/or family can feel free to open personal lines of communication with the hospice team and address sensitive issues.

Be aware of mood swings, hostility, and other acting-out behavior. Set limits on inappropriate behavior, and redirect negative thinking. Indicators of ineffective coping and need for additional interventions. Preventing destructive actions enables patients to maintain control and a sense of self-esteem .

Reinforce teaching regarding disease processes and treatments and provide information as requested or appropriate about dying. Be honest; do not give false hope while providing emotional support. Patient and/or SO benefit from factual information. Individuals may ask direct questions about death, and honest answers promote trust and provide reassurance that correct information will be given.

Review past life experiences, role changes, sexuality concerns, and coping skills. Promote an environment conducive to talking about things that interest the patient. Opportunity to identify skills that may help individuals cope with the grief of current situation more effectively. Issues of sexuality remain important at this stage: feelings of masculinity or femininity, giving up a role within the family, and the ability to maintain sexual activity (if desired).

Assist patient/SO to identify strengths in self or situation and support systems. Recognizing these resources provides an opportunity to work through feelings of grief.

Be aware of the client’s feelings about death. Accept whatever methods patients/SO has chosen to help each other through the process. The caregiver’s anxiety and unwillingness to accept the reality of the possibility of the client’s death may block the ability to be helpful to the patient/SO, necessitating enlisting the aid of others to provide needed support.

Provide an open environment for discussion with patient/SO (when appropriate) about desires and/or plans pertaining to death; e.g., making a will, burial arrangements, tissue donation, death benefits, insurance, time for family gatherings, and how to spend the remaining time. If patients/SO are mutually aware of impending death, they may more easily deal with unfinished business or desired activities. Having a part in problem-solving or planning can provide a sense of control over anticipated events.

Encourage participation in care and treatment decisions. Allows patients to retain some control over life.

Visit frequently and provide physical contact as appropriate or desired, or provide frequent phone support as appropriate for the setting. Arrange for a care provider and/or support person to stay with the patient as needed. Helps reduce feelings of isolation and abandonment.

Provide time for acceptance, final farewell, and arrangements for memorial or funeral service according to individual spiritual, cultural, and ethnic needs. Accommodation of personal and family wishes helps reduce anxiety and may promote a sense of peace.

Identify the need for appropriate timing of antidepressants and/or anxiety medications. May alleviate distress, and enhance coping, especially for patients not requiring analgesics.

Determine spiritual needs or conflicts and refer to appropriate team members including clergy and/or spiritual advisor. Providing for spiritual needs, forgiveness, prayer, devotional materials, or sacraments as requested can relieve spiritual pain and provide a sense of peace.

Refer to an appropriate counselor as needed (psychiatric clinical nurse specialist, social worker, psychologist, pastoral support) Compassion and support can help alleviate distress or palliate feelings of grief to facilitate coping and foster growth.

Refer to visiting nurse, home health agency as needed, or hospice team, when appropriate. Provides support in meeting the physical and emotional needs of the patient and/or SO, and can supplement the care family and friends are able to give.

Managing pain for patients in hospice care is one aspect of providing comfort and maintaining the quality of life. It involves regular assessment of pain intensity and characteristics, utilizing appropriate pain management strategies such as pharmacological interventions, non-pharmacological techniques, and complementary therapies.

Perform a comprehensive pain evaluation, including location, characteristics, onset, duration, frequency, quality, severity (e.g., 0–10 scale), and precipitating or aggravating factors. Note cultural issues impacting reporting and expression of pain. Determine the patient’s acceptable level of pain. Provides baseline information from which a realistic plan can be developed, keeping in mind that verbal/behavioral cues may have a little direct relationship to the degree of pain perceived. Often the patient does not feel the need to be completely pain-free but is able to be more functional when pain is at a lower level on the pain scale .

Determine possible pathophysiological and/or psychological causes of pain Pain is associated with many factors that may be interactive and increase the degree of pain experienced.

Assess the patient’s perception of pain, along with behavioral and psychological responses. Determine the patient’s attitude toward and/or use of pain medications and locus of control (internal and/or external). Helps identify patients’ needs and pain control methods found to be helpful or not helpful in the past. Individuals with an external locus of control may take little or no responsibility for pain management.

Assess the degree of personal adjustment to diagnosis, such as anger, irritability, withdrawal , and acceptance. These factors are variable and often affect the perception of pain and the ability to cope and the need for pain management.

Identify specific signs and symptoms and changes in pain requiring notification of healthcare provider and medical intervention. Unrelieved pain may be associated with the progression of a terminal disease process, or be associated with complications that require medical management.

Verify current and past analgesic and narcotic drug use (including alcohol). May provide insight into what has or has not worked in the past or may impact the therapy plan.

Monitor for/discuss the possibility of changes in mental status, agitation, confusion , and restlessness. Although causes of deterioration are numerous in terminal stages, early recognition and management of the psychological component is an integral part of pain management.

Encourage the patient and family to express feelings or concerns about narcotic use. Inaccurate information regarding drug use or fear of addiction or oversedation may impair pain control efforts.

Discuss with SO(s) ways in which they can assist patients and reduce precipitating factors. Promotes involvement in care and belief that there are things they can do to help.

Involve caregivers in identifying effective comfort measures for patients: use of non-acidic fluids, oral swabs, lip salve, skin and/or perineal care, and enema. Instruct in the use of oxygen and/or suction equipment as appropriate. Managing troubling symptoms such as nausea, dry mouth , dyspnea, and constipation can reduce patients’ suffering and family anxiety, improving quality of life and allowing the patient/family to focus on other issues.

Demonstrate and encourage the use of relaxation techniques, guided imagery, and meditation. May reduce the need for/can supplement analgesic therapy, especially during periods when the patient desires to minimize the sedative effects of medication.

Establish a pain management plan with the patient, family, and healthcare provider, including options for the management of breakthrough pain. Inadequate pain management remains one of the most significant deficiencies in the care of the dying patient. A plan developed in advance increases the patient’s level of trust that comfort will be maintained, reducing anxiety.

Schedule and administer analgesics as indicated to maximal dosage . Notify the physician if the regimen is inadequate to meet the pain control goal. Helps maintain an “acceptable” level of pain. Modifications of drug dosage or combinations may be required.

Instruct the patient, family, or caregiver in the use of an IV pump (PCA) for pain control. When the patient controls the dosage and administration of medication, pain relief is enhanced and quality of life is improved.

Recommended nursing diagnosis and nursing care plan books and resources.

Disclosure: Included below are affiliate links from Amazon at no additional cost from you. We may earn a small commission from your purchase. For more information, check out our privacy policy .

Ackley and Ladwig’s Nursing Diagnosis Handbook: An Evidence-Based Guide to Planning Care We love this book because of its evidence-based approach to nursing interventions. This care plan handbook uses an easy, three-step system to guide you through client assessment, nursing diagnosis, and care planning. Includes step-by-step instructions showing how to implement care and evaluate outcomes, and help you build skills in diagnostic reasoning and critical thinking.

Nursing Care Plans – Nursing Diagnosis & Intervention (10th Edition) Includes over two hundred care plans that reflect the most recent evidence-based guidelines. New to this edition are ICNP diagnoses, care plans on LGBTQ health issues, and on electrolytes and acid-base balance.

Nurse’s Pocket Guide: Diagnoses, Prioritized Interventions, and Rationales Quick-reference tool includes all you need to identify the correct diagnoses for efficient patient care planning. The sixteenth edition includes the most recent nursing diagnoses and interventions and an alphabetized listing of nursing diagnoses covering more than 400 disorders.

Nursing Diagnosis Manual: Planning, Individualizing, and Documenting Client Care  Identify interventions to plan, individualize, and document care for more than 800 diseases and disorders. Only in the Nursing Diagnosis Manual will you find for each diagnosis subjectively and objectively – sample clinical applications, prioritized action/interventions with rationales – a documentation section, and much more!

All-in-One Nursing Care Planning Resource – E-Book: Medical-Surgical, Pediatric, Maternity, and Psychiatric-Mental Health   Includes over 100 care plans for medical-surgical, maternity/OB, pediatrics, and psychiatric and mental health. Interprofessional “patient problems” focus familiarizes you with how to speak to patients.

Other recommended site resources for this nursing care plan:

• Nursing Care Plans (NCP): Ultimate Guide and Database MUST READ! Over 150+ nursing care plans for different diseases and conditions. Includes our easy-to-follow guide on how to create nursing care plans from scratch.
• Nursing Diagnosis Guide and List: All You Need to Know to Master Diagnosing Our comprehensive guide on how to create and write diagnostic labels. Includes detailed nursing care plan guides for common nursing diagnostic labels.

More care plans related to basic nursing concepts:

• Cancer (Oncology Nursing) | 13 Care Plans
• End-of-Life Care (Hospice Care or Palliative) | 4 Care Plans
• Geriatric Nursing (Older Adult) | 11 Care Plans
• Prolonged Bed Rest | 8 Care Plans
• Surgery (Perioperative Client) | 13 Care Plans
• Systemic Lupus Erythematosus | 4 Care Plans
• Total Parenteral Nutrition | 4 Care Plans

3 thoughts on “4 End-of-Life Care (Hospice Care) Nursing Care Plans”

This helps a lot. Thanks for sharing. I use it as a tool guide to make NCP’s.

As an experienced RN X 34 years in more varied clinical and off-site not hands on clinical workflows, I am now finding this wonderful role of Hospice Nursing and really love what I am doing now with my career!!

This information you shared is a great network builder in how I address these very different methods with my patents, families, caregivers…to be all in the most solid headspace as possible with caring for, AND understanding there loved one, who may look and appear very different to them.

I have a previous high functioning mother, also retired RN, who know has late onset Alzheimer’s and she is taking it pretty hard. Your content within your course will definitely help me in my work role; but nearly as/more important, will help me keep everything in perspective as I walk this path with my mama, and help my other family members who just simply don’t grasp the changes and why they are occurring….(ie. the anger outburst,, for one example).

Thank you for a well presented topic with many great take-away tools.

Terri Smith RN CM

Hi Terri. Hope you are in good health. I am impressed by the vast knowledge and skill you have acquired through the years in your career. I am a retired registered general nurse I was working in one of the best private hospitals in my country. I am currently looking after my mother who has Alzheimer’s I am interested in starting a hospice or a nursing home in my hometown as I have noticed that the is a high demand for such facilities in my country. having said that I was wondering if could join hands with me in this endeavor

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