reflective essay on end of life care

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Lessons learnt about end of life care

• Related content
• Peer review
• Ruth Campbell , senior policy adviser, medical ethics and human rights
• British Medical Association, UK

Findings from the British Medical Association’s project about the challenges of providing good palliative care

“The purpose of medical schooling was to teach how to save lives, not how to tend to their demise,” Atul Gawande, general and endocrine surgeon at Brigham and Women’s Hospital in Boston, writes in his bestseller Being Mortal . 1

How to talk about death and deal with the challenges of end of life care are not widely taught at medical school, and many doctors feel unprepared when faced with the clinical and communication challenges at the end of a patient’s life.

In 2015, the BMA explored these issues in greater depth and held workshops around the UK to hear from more than 500 doctors and members of the public about the challenges of delivering good end of life care. This article summarises the main findings.

Many doctors feel underprepared when dealing with end of life care

Doctors at all stages of their careers reported a lack of confidence around certain aspects of providing end of life care, including the complexities of assessing mental capacity, the administration of pain relief—“I feel like [Harold] Shipman is a spectre that hangs over me,” said one doctor—and communicating with patients and those close to them.

“I found it very difficult to talk to patients about dying prior to working in a hospice,” said a junior doctor who attended one of the workshops. “Firstly, because we’re not taught very much [about this subject]; and secondly, those kinds of complex conversations we leave to the senior consultants because they have more experience.”

“Being thrown in at the deep end,” was an expression used by newly qualified doctors to describe their experiences of caring for patients at the end of life. They cited a lack of exposure to patients who were dying at medical school and minimal training on how to have difficult conversations with patients about the end of life.

Many doctors responsible for providing patient care out of hours reported feeling alone or unsure of who to call in a crisis, highlighting the need for ongoing practical and clinical support to be available whenever it is needed.

Some doctors see the death of a patient as a failure

Many doctors involved in the consultation identified a reluctance to acknowledge and accept when a patient might be approaching the end of life. In many cases, this was simply because it was not recognised that a patient was approaching the end of life.

Patients with a clear diagnosis and prognosis, such as certain types of cancer, were perceived as receiving better palliative care than frail, older patients with multiple comorbidities or a non-specific diagnosis. This was because doctors tended to look at individual treatment episodes in isolation, rather than taking an overall view of care and starting to explore the patient’s wishes for the end of life with them.

In other cases, there was a deeply ingrained reluctance to accept that providing or continuing treatment might not always be in a patient’s best interests and that there was a need to make the shift to palliation. Many doctors spoke about initially viewing the death of a patient as “failing” in their role as a doctor but, with time and reflection, they had come to realise that they had a key role to play in supporting a good death. Indeed, one doctor remarked about her first experience of a patient’s death, “I thought I had failed because they had died. I didn’t fail because they died, but because I didn’t recognise they were dying.”

Supporting those close to a dying patient is key to good end of life care

In our discussions, patients frequently identified the wellbeing of family members and others close to them as a crucial concern, but this was rarely identified as such by doctors, who were generally far more concerned with clinical care and symptom control.

People who had experienced a recent bereavement described how the smallest of gestures from healthcare staff—such as a cup of tea, a shoulder to cry on, or encouragement to go and get some rest—had made a difference to their experience of caring for a dying relative. One respondent, who was involved in caring for their father at the end of his life, summarised the importance of this: “They looked after him, but they also looked after us, his family, and that I think was important . . . for my father’s wellbeing, his mental stability, as he went through his final days.”

Recognising and responding to the needs of a patient’s family members, involving them in discussions about care, and demonstrating to the patient that their loved ones’ needs are being considered, are examples of things that doctors can do to reduce patients’ anxiety at the end of life.

Providing support to family members after a patient’s death is important too

A major concern for patients at the end of life is the impact their death may have on family members, particularly when young children are involved. Those who had a negative experience of end of life care spoke of feeling “dropped” immediately after the death of their relative, and how although emotional support was provided while the patient was dying, it ended abruptly after death.

Many members of the public were aware that counselling and bereavement services existed, but few knew how to access them or where to go for support. Information about counselling and bereavement services, and how to access them, should form a core part of information provided to families.

Caring for dying patients can take its toll on doctors

The emotional toll of a patient’s death on the doctors who have been responsible for his or her care cannot be underestimated. Many doctors spoke movingly of deaths that had affected them—whether it was a patient they had grown particularly close to, because there were specific circumstances that stood out, or because of the cumulative effect of supporting patients and their families through grief and suffering over the course of their career.

The availability of formal or informal support mechanisms was highly variable between healthcare settings. Some doctors received support through case meetings or chats with more experienced colleagues, others felt they had to deal with their emotions on their own.

Box 1: Where next?

After the consultation, the BMA made several recommendations aimed at improving end of life care in the UK, which include:

Governments need to make end of life care a priority and work with other organisations to develop a clear, funded plan of action

The UK government should initiate and fund public information campaigns encouraging people to think about, and make known, their wishes regarding end of life care

More funding is needed for bereavement services, including specific services for children. These need to be available and accessible consistently throughout the UK

Medical schools should increase students’ exposure to patients who are at the end of life

Doctors should receive more ongoing training in communication and listening skills in relation to end of life care. Specifically, this should include how to answer difficult questions in an open, transparent, and sensitive way

Doctors of all grades should receive training in the basics of pain management and when to involve senior colleagues or colleagues from different disciplines in decisions regarding further management

You can read the BMA’s recommendations in full in the report End-of-life care and physician-assisted dying . www.bma.org.uk/endoflifecare .

Following on from this project, the BMA has written to medical schools and healthcare providers to draw attention to its findings and recommendations, and will now be working with other key organisations, including patient groups, to take them forward.

Box 2: Resources from The BMJ

Oliver D. End of life care is everyone’s business. BMJ 2016;354:i3888.

Berry M, Harris J, Sleeman KE. Supporting relatives and carers at the end of a patient’s life. BMJ 2017;356:j367.

Hosker CMG, Bennett MI. Delirium and agitation at the end of life. BMJ 2016;353:i3085.

Ruegger J, Hodgkinson S, Field-Smith A. Care of adults in the last days of life: summary of NICE guidance. BMJ 2015;351:h6631.

Originally published as: Student BMJ 2017;25:j2929

Competing interests: None declared.

Provenance and peer review: Commissioned; not externally peer reviewed.

• ↵ Gawande A. Being Mortal: Medicine and What Matters in the End. 1st ed . Metropolitan Books, 2014 .

Death, Dying, and Bereavement: Reflection Essay

Terminal illness, end of life issue.

While dying is part of human life that surrounds each person, some encounters with death are more influential than others. My mother’s passing was an experience that impacted my view of life and end of life care the most. She died before her 60th birthday – her terminal illness was discovered very late, and she passed away less than a year after receiving the diagnosis. Such a rapid change in my life left a mark on my memory and reshaped my view of life and death.

It was difficult for me to come to terms with her death – the period between the diagnosis and her passing was too short. I was in denial for a long time and had trouble accepting what had happened. Looking back at this time, I see how the end of life is not always expected, and why the children of terminally ill loved ones require the attention of medical professionals as well.

End of life care for my mother took a toll on me, and I had to reevaluate my aspirations to see whether I treated life as an endless path. Now, I reflect on the feelings I had in order to remind myself that the end of life cannot be fully preplanned and that each case is unique in its own way. Moreover, I try to remember that one’s existence is finite. In some cases, the best solution is to provide as much comfort to someone and make sure they are making choices to the best of their ability and knowledge to have a happy and dignified time.

I also considered how my mother might have felt at the moment of diagnosis and during her last year. It is incredibly challenging for one to understand what knowing that you will die soon means. Such clarity is not always desired, but I believe that it is vital for people to know about their current condition because it affects their decision-making in healthcare and life, in general. Death is a part of each human’s life, but every step toward it does not feel final because it can come at any moment.

Knowing one’s diagnosis changes the way people and their loved ones think. Although I can only imagine what my mother felt, I understand what the families of terminally ill persons are going through.

If I were diagnosed with a terminal illness and were given a prognosis of six months or less to live, I would try to accept it in good faith before making decisions. Death is inevitable, but it is impossible to be fully prepared for it, even when you think that you are. So, I would look into myself to search for peace with this news in order to take advantage of the time that I have left.

I would feel sad because I would not see my loved ones and miss them dearly. Thus, my priorities for what should be done would change. I would try to see my family and friends as much as I could and spend time with them, making memories for them and myself. I would like to leave some mementoes behind and focus on the good times that we would have together. Planning for several months ahead is difficult when the exact date of death is unknown, so I would do my best to make the most of each day.

However, it is also vital to think about one’s inner comfort and peace. Coming to terms with my passing would be critical to me – it provides some type of closure and allows me to let go of worries related to everyday life. People may cover their fear of dying with activities and concentration on planning and socialization. In doing so, they may overlook their own satisfaction with life, denying themselves a chance to reflect. As such, I would spend some time searching for some last unanswered questions and unachieved goals that could be completed in the short span of time that I would have.

Finally, I would concentrate on my present and my loved ones’ future. I always strive to remember that life is endless in a way that it continues for other people. Although I will eventually die, some of my friends and my family members will continue living long after I am gone, facing problems and challenges that are inherent to humanity.

Thus, I would try to make plans to alleviate some of these issues. Most importantly, I would organize the provision for my child to finance the education – one of the most necessary, but expensive, parts of one’s coming to adulthood. If possible, I would review our housing options, savings, family and friends support network, and address other household and healthcare concerns.

Doctors and nurses in end-of-life care carry a significant burden in working with patients and families dealing with ethical and moral dilemmas. Some of these issues are also regulated legally, although the lines of what is legal or not are much less clear than in other cases. For me, one of the moral dilemmas that I had struggled with was the patients’ and relatives’ differing views on treatment planning. In some situations, the client’s family members may not pursue the same goals as the person under care. These aims can be guided by religious or personal views on health and death. Others can be motivated by financial problems, strained relationships, emotional health, and a multitude of other reasons.

For example, in a hospital, a family may not want the patient to know the diagnosis as it could scare or sadden them. In this scenario, I turn to the some of the medical principles as the basis for my value system. I would highlight the importance of fidelity – people have the right to known about their prognosis and diagnosis (Karnik & Kanekar, 2016). I think that truthfulness is a necessary part of end-of-life care and support, even though telling someone their diagnosis is difficult.

In some situations, children want to keep their parent alive as long as possible and request all possible procedures, while the client denies care and seeks comfort to spend the last days with dignity. Here, the principle of autonomy would guide my practice – people reserve the right to make decisions to the extent of their capacity (De Panfilis et al., 2019).

Moreover, it is vital to remember that rigorous treatment does not equal beneficence in all scenarios. I try to approach each case individually and acknowledge that every person has the right to control a part of their destiny through healthcare or outreach for support, and the duty of caring professionals is to inform our clients of all the choices they can make and what outcomes they can expect. In the end, medical science advances continuously, but death remains an unchanging aspect that requires person-centered thinking.

De Panfilis, L., Di Leo, S., Peruselli, C., Ghirotto, L., & Tanzi, S. (2019). “I go into crisis when…”: Ethics of care and moral dilemmas in palliative care. BMC Palliative Care , 18 (70), 1-8. Web.

Karnik, S., & Kanekar, A. (2016). Ethical issues surrounding end-of-life care: A narrative review . Healthcare, 4 (24), 1-6. Web.

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IvyPanda. (2022, September 19). Death, Dying, and Bereavement: Reflection. https://ivypanda.com/essays/death-dying-and-bereavement-reflection/

"Death, Dying, and Bereavement: Reflection." IvyPanda , 19 Sept. 2022, ivypanda.com/essays/death-dying-and-bereavement-reflection/.

IvyPanda . (2022) 'Death, Dying, and Bereavement: Reflection'. 19 September.

IvyPanda . 2022. "Death, Dying, and Bereavement: Reflection." September 19, 2022. https://ivypanda.com/essays/death-dying-and-bereavement-reflection/.

1. IvyPanda . "Death, Dying, and Bereavement: Reflection." September 19, 2022. https://ivypanda.com/essays/death-dying-and-bereavement-reflection/.

Bibliography

IvyPanda . "Death, Dying, and Bereavement: Reflection." September 19, 2022. https://ivypanda.com/essays/death-dying-and-bereavement-reflection/.

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Approaching Death

A nurse goes from the er to a hospice, and changes the way she thinks about life and its end..

Illustration by Robert Neubecker.

This essay originally appeared in I Wasn’t Strong Like This When I Started Out: True Stories of Becoming a Nurse , a collection edited by Lee Gutkind, out now from In Fact Books.

A child is dead.

There is a terrifying, soul-piercing scream that a mother makes when she loses a child. This scream is so universal that everyone, in every corner of the emergency department, knows what has just happened when they hear it.

On a sunny summer morning, a young mother of a 3-year-old watched, stunned by ultimate dread, as her little boy ran out into the normally quiet street. On that day, however, the driver of a rainbow-painted Volkswagen bus careened through the neighborhood; 20 minutes later the mother stood in our trauma room, looking as if she might collapse. She told us, through tears and broken English, how she had heard the screech of tires, the crumpling thud. She ran into the street, knelt down to her son, and gathered the little boy into her arms.

It may have been clear to the paramedics, when they arrived, that this child had no life left in him, yet they knew to move with the kind of energy that infuses hope into impossible situations. They did everything in their power—oxygen, monitors, IVs—an all-out resuscitative effort. It is hard to imagine anything worse for a parent than to watch an aggressive attempt at her child’s resuscitation. Except, I suppose, to see no effort at all.

The little, broken body was transported to our emergency room, and we put on a similar show—a collective swoop of doctors and nurses and technicians. We focused the exam lights on him and looked, listened, strained to detect some tiny morsel of life with which to run; it’s not just for the benefit of the parents that we go all out, even when mottling has set in. We, too, need this cathartic effort in order to begin to grieve. Seeing a child die is never easy.

Years ago, it was customary to keep families out of the room when a crisis was in progress. But nowadays we know that one last look, one more moment of hope can be vitally important to the process of saying goodbye. The mother, looking stricken and white, stood by the door and held onto the arm of a nurse. When the initial moments had passed, the chaotic energy in the room suddenly changed. The doctor lowered his voice and called the time.

And so, the scream.

I left the room to find the father in the waiting room down the hall. I paused at the door before entering, wanting to wait as long as possible before destroying his world. He took one look at my face and fell to his knees, his forehead slapping onto the scuffed white floor. I waited while he groaned to his feet, then led him to his wife and dead child. So the parents could sit with the little boy, the team had tried to clean him up and had pulled the tube from his nose. I motioned the father into the room and left them alone to say their goodbyes. I had to rush to the next emergency.

Courtesy of In Fact Books

That was the moment when my edges began to wither and I felt a hardness creeping in. Was it really possible that my response to the intense anguish of two broken parents was to push them into a room and run off to finish my job? When had I become so callous? I remembered myself as a new nurse—one who made it a point to touch every patient, even when she wasn’t examining them; who had a gift for sensing what a psychotic patient needed in order to de-escalate; who was known as the one to call when a battered woman needed to feel safe enough to talk—but this memory was distant and faded.

I was overly sensitive, even as a child, to the suffering of others. When I watched Westerns, I would get teary when the cowboys yanked at the mouths of their horses. “Think about how lucky those horses are,” my father had said, trying to console me. “They get to run all day.” I became so upset when I read Black Beauty that I hid in my room and cried for hours. I know the story has a happy ending only from secondhand accounts as I’ve never been able to bring myself to finish it. In the fourth grade, I jokingly pulled the chair out from behind a shy and quiet classmate, the way I had seen it done on The Three Stooges . The boy fell and hurt his back, and I was so distraught over his tears that I never spoke to him again. While working in a bookstore, years later, I happened to glance through the pages of an autobiography written by a man who had been viciously abused as a child. I went home sick that day because I simply couldn’t function with those pictures in my head.

How does someone with these pathological, debilitating reactions to distress function in a world of endless pain and struggle? Easy. Build walls and stay busy.

I had been involved in emergency medicine for 14 years—first as an emergency medical technician, then as a paramedic, and finally as a nurse. The crackling energy and hot, white lights of the ER seemed like a perfect fit for my frenetic nature. I’d always had enormous reserves of energy; reading was the only thing that ever slowed my racing thoughts, and my mother would hand me a book the way another might hand her child a lollipop. So, there I was, a center stage participant in a vital dance, and the result was a matter of life and death. I felt completely at ease. When I speed-walked down the halls, I often heard the joke, “Where’s the fire?” There were never charts waiting on the desk when I was working, and my inability to sit still, or to even slow down, lessened the workload for everyone as I zipped through the incidentals, the standard protocols, the well-worn paths of action. Everyone around me thought I was doing a great job.

But nonstop motion is not always as productive as it seems—the best emergency workers, in fact, move slowly, carefully. I eventually realized I was missing something. I felt like I was floating through someone else’s life, as if I wasn’t actually feeling compassion. I felt like a fraud.

I went to nursing school partly because I liked being the one whom people looked to and leaned on in times of crisis. Like many people I met in emergency medicine, I had the proverbial need to be needed. I took pride in caring for my patients, but my urgency to be in the next moment prevented me from really seeing them. My co-workers liked to work with me, of course, and my employers thought I was excelling. But what about the patients? I didn’t know how to find my buried compassion, nor did I know what to do next. But I knew the time had come to move on.

The ability to change specialties is one of the best aspects of nursing. I assumed, because I had seen so much, because my critical care skills were the envy of some physicians, and because I knew exactly how to react in the direst of situations, that I was qualified to do anything. I had seen things most people would never see, having been at the center of a pounding, bloody battle where we won as often as we lost. I needed something completely different. Of course, any other type of nursing would be, if not a step down, at least less challenging. I walked around a job fair, aimless and uncertain, until I found myself standing in front of a hospice booth.

I had been, in my childhood, a distant witness to several deaths. When my great-grandfather died, I watched my mom cry and was sad he would never finish teaching me to play pinochle. I was heartbroken for my friend when her mother died, and I cried and cried when a car hit my golden retriever. But I was never afraid. This is not to say that I was evolved or anything. When I was 13 years old and square in the middle of that most awkward, terrifying slice of adolescence, I actually looked forward to death. Perhaps it was a brief, pathological, adolescent-induced depression that made me wish for it. As I matured, however, the feeling that death was a lovely way out stayed with me. Nothing could ever get me really down, or be too serious, because I would eventually die. It may sound like a strange consolation, but I had become quite comfortable with my old friend, Death.

Maybe hospice would be the fit I was searching for. During my first month of the new job, I agreed to work the weekend on-call shift. Two 12-hour days of nonstop calls took me from one end of the spectrum to the other: reinsert a urinary catheter, teach a family what CPR really entails, hold a child’s hand as his mother takes her final breaths. I constantly switched gears, depending on where a particular patient or family happened to fall on the timeline of life and death. Caring for the dying, as well as their families, I hardly noticed that I had somehow chosen the one shift in hospice that fit my old profile.

Over one weekend, I ordered antibiotics for a 98-year-old woman who lived alone and refused help with anything, comforted a woman who had to place her elderly husband in a nursing home against his will, and started an IV on a young woman who insisted she was not ready to die, though every system in her body was decaying from cancer. I spent two hours talking a wildly delirious patient into allowing his wife to give him his meds; I ran back to the office for supplies, twice; and I spent several hours with family members as they waited for the mortuary to pick up their matriarch.

It was five o’clock on a crisp, chilly Sunday evening when my pager beeped again: “Six-week-old patient in crisis.”

A tiny flaw in the genetic makeup of a developing human can result in a life just incomplete enough—after nine months of gestating, 16 hours of birthing, and a few hours of bonding—to be afflicted with multiple congenital anomalies. “Take him home,” the doctors said, “and hospice will help you keep him comfortable. We are probably talking about weeks.”

The baby would suffer from longer and longer periods of status epilepticus, and drugs would become less and less effective. His tiny frame would flail in violent, disorganized muscle contractions 10, 15, 20 times a day. The hospice team—a nurse, a social worker, a chaplain, and a CNA—visited the parents every day to comfort them, to teach them to care for him, and to support their grieving process. The family had gotten to know this team, but I was the nurse on call that day.

Thirty minutes after I got the page, I drove up a bumpy dirt road to a little green house on the side of a mountain. The neighborhood was quiet, private, and filled with golden aspens changing colors for the season. The door opened before I knocked. The father’s eyes were teary, and his parchment skin looked drained and hollow. He led me silently through a hallway, one entire wall of which was covered with books—perhaps the ones they had hoped their son would read. The mother was sitting in a rocking chair, holding her seizing infant. “It hasn’t stopped for twelve minutes.”

All I could do for him, for them, was be calm and present as this tiny creature worked his way toward the end we all come to. My heart broke for them, but I stood by and fought the urge to rush in. I couldn’t intrude on this precious process. I waited with them, moving only to help with positioning or to offer gentle suggestions. In the air, I felt his tiny presence slip away, slowly and peacefully. He stopped moving, his breathing slowed until it was imperceptible, and for a moment his complete stillness made me hold my own breath. I reached for the pediatric stethoscope around my neck, warming it in my hand so as not to startle him. As I pressed it against his chest, his mother said, “His name is Christopher.”

“Hi, Christopher,” I whispered as I listened.

I didn’t need to say the words. I knew from her expression that she knew. A slow, fat tear dripped down her face, and I backed away, just far enough out of the picture, in my attempt not to invade this moment of goodbye between the three of them. There was nothing for me to do but be still. I crept back, found a chair, and sat to wait.

And then I began to sob.

I felt myself losing control, choking and sobbing as if he were my child, my loss. I didn’t even have children. I tried not to make noise, tried not to trespass on their moment. I was so ashamed! I was supposed to be their support, their rock. I moved to quietly slip out of the room, but I felt the husband’s hand on my shoulder. His eyes were wet and kind. He handed me a tissue.

I couldn’t believe what a failure I was.

I got it together, finally, and helped them decide what to do. I called the physician, the coroner, and the mortuary. At the mother’s request, I got permission from the mortuary for the couple to drive the tiny body themselves. I helped them into the car by holding the baby, who now had a little blue cap on his head, while his mother settled herself in the passenger’s seat. I placed Christopher on her lap, hoping they wouldn’t get pulled over and have to explain why their baby was not in a car seat.

I was watching them ease down the driveway when the car suddenly stopped. The mother gently handed her little bundle over to her husband and got out of the car. Before I could react, she’d wrapped her arms around me. I was so stunned by the gentle, intimate comfort she offered that I barely moved. She finally let me go, looked at me, then got back into the car. They drove off. As I watched them go, I wondered if maybe I hadn’t failed. I hadn’t swallowed my grief. I hadn’t patronized them or tried to explain “the process.” I had been absolutely present with them in that agonizing, priceless moment. It was the best I could do.

• Research article
• Open access
• Published: 05 March 2016

The use of reflective diaries in end of life training programmes: a study exploring the impact of self-reflection on the participants in a volunteer training programme

• Alison Germain 1 ,
• Kate Nolan 1 ,
• Rita Doyle 1 ,
• Stephen Mason 1 ,
• Maureen Gambles 1 ,
• Hong Chen 1 ,
• Ruthmarijke Smeding 1 &
• John Ellershaw 1  

BMC Palliative Care volume  15 , Article number:  28 ( 2016 ) Cite this article

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A training programme was developed and delivered to a cohort of volunteers who were preparing for a unique role to provide companionship to dying patients in the acute hospital setting. This comprehensive programme aimed to provide an opportunity for participants to fully understand the nature and responsibilities of the role, whilst also allowing sufficient time to assess the qualities and competencies of participants for their ongoing volunteering role.

Participants completed reflective diaries throughout the training course to record their ongoing thoughts and feelings. The purpose of this paper is to present a phenomenological analysis of these entries to understand participants’ experiences, perceptions and motivations.

The wider study was structured into three phases. Phase 1 was the delivery of a 12 week, bespoke training programme; Phase 2 involved a 26 week pilot implementation of the Care of the Dying Volunteer Service and Phase 3 was the research evaluation of the training and implementation which would inform the further development of the training programme.

Self-reflection is a common component of End of Life training programmes and volunteers in this study completed a reflective diary after participation in each of the training sessions. A thematic analysis was undertaken to explore and understand the participants’ experience, perceptions and motivations in relation to their participation in the training.

All 19 volunteers completed the reflective diaries. From a potential 228 diary entries over the 12 week training programme, 178 diary entries were submitted (78 %). The following key themes were identified: Dying Alone and the importance of being present, Personal loss and the reconstruction of meaning, Self-Awareness and Personal growth, Self-preservation and Coping strategies and group unity/cohesion.

Conclusions

The participants in this study demonstrated that they were able to use the diaries as an appropriate medium for reflection. Their reflections were also instrumental in the ongoing revision and development of the training programme. Analysis of their entries illustrated that the diaries could provide the opportunity for a reappraisal of their world view and personal philosophy around death and dying. Further research is undoubtedly required, however this paper suggests that self-reflection in this way, supports preparation in honing the appropriate attitudes and qualities required to work in this role.

Peer Review reports

In this study an Education and Training programme was developed and delivered to a cohort of volunteers. The participants were preparing for a unique and innovative role to provide a presence or companionship to dying patients in the last hours and days of life in an acute hospital. The volunteer role was created to provide a support to imminently dying patients who had few or no visitors, or conversely, where visitors at the bedside were in need of respite from their ‘vigil’. The training programme was developed from the work of OPCARE 9, an EU funded 7th Framework project that included a focus on exploring the role of the Volunteer in end of life care in nine European countries [ 1 ]. The aim of this element of the work in OPCARE9 was to understand current volunteer education and training provision, specifically related to the last weeks and days of life, and to identify any gaps in training, in order to establish curricula excellence in this area. The paucity of examples of the use of volunteers in the UK at this specific time, led to the development of a core curriculum for training in the current project. It sought to distil international expertise and experience to underpin and deliver a bespoke volunteering model to provide support at the bedside of dying patients in one acute hospital in the UK.

After this initial development, the remainder of the study was structured into three phases. Phase 1 was the delivery of a 12 week, training programme; Phase 2 involved a 26 week pilot implementation of the Care of the Dying Volunteer Service and Phase 3 was the research evaluation of the training and implementation phases (See Table  1 ).

The comprehensive Education and Training programme aimed at providing an appropriate understanding and preparation participant’s ongoing role, whilst also allowing the Training Leads sufficient time to assess their qualities and competencies. Clearly, the sensitivity of the role, supporting dying patients and their families, demanded a thorough preparation which included a personal reflection of previous losses and bereavements and an exposure to the visual images of death that they might be faced with in their uptake of this role. The learning objectives were designed to balance the functional requirements of the volunteering role. This included an awareness of end of life care, a honing of their communication skills and an exploration of their sense of resilience and ability to cope, whilst also ensuring that the training did not professionalise the role, compromising the value of the volunteers as lay, community representatives. Reflection was regarded as an essential component to both the training and the ongoing Volunteering role, facilitating both an increased personal awareness and an opportunity for the Facilitators to evaluate the impact and effectiveness of the training programme.

Self-reflection is a common component of many End of Life training programmes for both Volunteers and Health Care professionals, particularly as a means of identifying any potential barriers to communicating about death and dying [ 2 ]. Reflection is theorised by Boud et al. [ 3 ] to include the intellectual and affective activities that individuals engage in to explore their experiences and process knowledge, leading to new awareness or understanding. Reflection can also be a means of addressing any personal discomfort or emotion in supporting dying patients that may be rooted in past experience, culture, beliefs or inexperience. In essence, reflection is a method of reviewing past experiences, both personal and professional, examining their impact and outcomes, then applying these new insights or learning to future practice.

Sandars [ 4 ] states that the method of reflection which is used should be determined by the learning styles and preferences of the participants and the learning outcomes for the particular teaching programme. Previous studies have highlighted that for reflective learning to be effective, the process should be taught, with the facilitators assisting students in their assessment and analysis [ 4 ]. Without this level of guidance and challenge reflection may limit the opportunity for students to develop and expand their learning. In support, Ghaye [ 5 ] suggests that effective reflection should be organised and structured and triggered by a question which demands the participant to look critically at their actions and question their efficacy. Although there are other methods to promote reflection, Burrows [ 6 ] suggests that the simplicity of completing a reflective diary offers the most effective medium to those with little or no previous experience of reflective practice and provides a straightforward format to channel the process of reflective thinking.

The diaries also facilitated the formal documentation of the participants’ reflections and this gave access to a source of ‘rich data’ which according to Charmaz [ 7 ] can reveal participants’ thoughts and feelings that may not have been offered in other circumstances, such as through social interactions. Such ‘rich data’ can then be subjected to in-depth analysis in order to understand more broadly participants’ experiences, perceptions, motivations and actions. A particularly relevant research methodology is phenomenological inquiry, which with its emphasis on the importance of personal knowledge and interpretation, is a powerful tool that can be used to gain insights into lived experience of those who participate in the phenomenon under study [ 8 ].

The aim of this paper is to present the results of a phenomenological analysis of the diary entries that was undertaken to explore and understand the participants’ experience, perceptions and motivations in relation to the phenomenon under study, their participation in the CODV training.

The CODV programme was broadly advertised locally and initially 43 enquiries were received which resulted in 22 participants attending an interview. Three potential participants were excluded from the training at this point for the following reasons: one had experienced a recent bereavement; two could not commit fully to the 12 week training programme.

Reference and standard agency checks (Disclosing and Barring Services, formally Criminal Records Bureau) were conducted for the remaining 19 volunteers who attended the training programme.

Informed consent

All 19 volunteers attending the CODV training programme were sent written information regarding the evaluation of the project prior to the first training session. The information sheet explained the process for data collection; completing the reflective diary and its function within the evaluation. During the first session the Researcher (KN) gave further verbal explanation of what would be involved should the volunteers agree to participate in the research. Written informed consent was obtained from all willing participants. Volunteers were assured that their volunteer role would not be affected by their decision to participate or not participate in the research, and that they could withdraw from the research evaluation at any time.

Data collection

The participants’ reflections of the phenomenon under study were captured through the use of weekly reflective diaries. Both verbal and written guidance was provided explaining the process of reflection and a basic framework was also provided to direct the participants in the completion of the diaries (See Table  2 ). Following each training session, the volunteers were asked to reflect on their perspectives of the phenomenon and their learning within the context of each session and to submit their diaries before or at the next training session. This gave the volunteers time to reflect on each session and also helped to counter for degradation of recall [ 9 ]. With the permission of participants the reflective diaries were also reviewed by the volunteer co-ordinator weekly, to identify any emergent issues raised.

Ethical considerations

Relevant ethical approvals for the study were obtained from the North West Wales NHS Research Ethics Committee (REC reference WN/12/0040) prior to recruitment of the volunteers.

Data analysis

Data from the reflective diaries were analysed thematically [ 10 ]. Each entry was read through twice as a minimum by the researcher and key phrases were highlighted within the text. Initial thoughts and interpretations were recorded in the text margins from which initial themes were subsequently generated. To promote the contextual validity and consistency of these initial themes, a random selection of 10 % of the individual diary entries (I am assuming that this was the case?) was also independently analysed by a second researcher who had not been involved in the initial data analysis (HC). A third researcher (AG) then revisited all of the original reflective diaries to review the data in terms of the initial themes that had been generated to ensure they captured the richness of the phenomenon under study [ 10 ].

Results & discussion

Nineteen volunteers completed the training programme.

Seventeen volunteers continued to Phase 2 of the pilot (implementation of the service).

All 19 participants completed the reflective diaries:

Ten completed the reflective diary by hand and the remainder electronically. Table  3 illustrates key demographic information for these 19 participants.

From a potential 228 diary entries over the 12 week training programme, 178 diary entries were submitted (78 %). Where potential entries were not recorded, this was predominately due to participants missing training sessions due to competing priorities (for example, holidays and family duties, work or sickness). Diary entries varied in quantity from half an A4 page at week one, progressing to four A4 pages for a single session at week nine of the training for one participant (ID 07). However, for the majority of participants the depth and richness of entries developed over time. A number of participants did not appear to be able to engage with the reflective process and used the diary entry to list the content of sessions rather than their personal thoughts and feelings ( n  = 4). Whilst journal entries from these 4 participants were not specifically excluded from the analysis, their limited emotional and personal content meant that they contributed little to the identification and interpretation of the themes generated. The initial themes identified by researcher 1 (KN) were broadly independently confirmed by researcher 2 (HC) in the 10 % sample of diary entries reviewed. Where minor differences of interpretation existed these were reconciled through discussion and further joint analysis, where appropriate. The third researcher (AG) revisited the original transcripts to ensure that the themes identified best represented the phenomenon as described by the participants. This final stage of the analysis provided an opportunity for further elaboration and integration into the higher order themes presented: Dying alone and the importance of being present

Personal loss and the reconstruction of meaning

Self-awareness and personal growth, self-preservation and coping strategies.

Group unity/cohesion

Dying alone and the importance of being present

Providing a presence to dying patients and their families and ensuring that they did not face the dying process alone was cited as a core motivating factor for the volunteers’ involvement and was a repeated theme throughout the diary entries.

“I was thinking about sitting at the bedside of a dying person, one to one, and wondering can I give the gift of my presence to take the loneliness in dying away what a precious thing it would be to achieve”(ID 01)

However the concept of presence was more complex for the participants in this study than simply being at the bedside. Deeper understanding of the issue appeared to develop as the training progressed, with participants’ reflections moving from the more practical issues regarding how they might “communicate” or demonstrate this presence to the deeper spiritual and psychological components of what it means to provide a presence with another.

One participant reflected that she would need to, “forget all (her) concerns and concentrate on the conversations” (ID 11) whilst another described this process as an empathic shift in focus, from their own world view to that of the patient or relative:

“The project is not about us but about them, and I think as individuals we will have to utilise the humble side of our personalities once we start the volunteer work project.” (ID 11)

Interestingly, the theme of preventing patients dying alone was revised during the course of the training, with the realisation that the role could not necessarily provide presence at the moment of death. Reflections revealed a growing awareness that their ongoing role was to provide a period of presence and companionship to the dying patient, even if they died at a later time;

“I would like for them to feel that someone cares for them and loves them and that they can pass more peacefully at the end”. (ID 07)

Reflecting specifically on the content of a particular session, in which images of death and dying had been shared with the group, one participant focused on the sense of “uncertainty” in dying and the volunteer’s role in supporting patients and families with this ambiguity (ID02). However, the concept of “support” was questioned by a further participant, reflecting on the challenge of being present with people and accepting “where” they are without the need to direct or give advice. They reflected on the distinction in this form of support from other supportive and caring roles they had provided in the past: “I think it will be a continuous process for me to cultivate presence in the dying situation…” (ID 07). Another reflected that demonstrating a spiritual presence often transcends language and that perhaps the most appropriate expression of spirituality is “silence” (ID 11).

The following themes specifically illustrate ways in which the training had contributed to the participants’ learning and personal development over the course of the Education and Training Programme.

In addition to the desire to prevent people from dying alone, personal bereavements and losses appeared to be another significant motivating influence for participants to initially engage in the training and in their onward recruitment to the role.

“I have very vivid memories of when my sister in law ‘my friend’ was in a hospice for 2 weeks before she died. I realise now that this has prompted me to get involved with this project and become a volunteer” (ID 06)

In developing the education programme, considerable time had been allocated for participants to share their experiences and their own accounts of loss and bereavement as a means to facilitate the reflective process within the training and through the reflective diaries. It also served to highlight any unresolved issues pertaining to their own grief that may impact on the support they could give to patients and families, and to promote their own self-care.

The theme of personal loss was evident throughout the diary entries, with participants revisiting their own experiences in the light of new learning received in the training sessions. For some participants, their previous experiences had been positive and there was an altruistic desire to emulate the care that their loved ones had received. Whilst others had had a negative personal experience and were motivated to improve the experience of death and dying for others. This theme was further expanded after the training session in which participants were asked to define what constitutes a “good death”, leading them to “unpack” the specific components of a person’s death, and explore what it is that can be helpful or beneficial to both the patient and the family at this time. For some, ( n  = 5) this led to personal reflection and a redefining of their own experiences, assessing what had contributed to their feelings that the deaths that they had experienced had been “good” or otherwise. One participant reflected on her growing awareness of how important the presence of others had been to support her, and she surmises that this had defined her own experience of bereavement:

“I realise that I have been very lucky. I loved my father, mother and brother dearly but could not have wished their life prolonged unless there was a miracle… I know too that I have never felt alone, as there have always been family with me and for me.” (ID 13)

The process of revisiting and exploring their own experiences resulted in new perceptions and a revision of meaning.

“My cousin was only 41 when he died of Myeloma… there was a lot of sadness and anxiety around the whole situation,… but there doesn’t need to be stress if you remain present to your feelings and emotions…It’s made me think that I need to live each day to the fullest.” (ID 07)

One participant reflected that her own experience of working for many years in a hospital had perhaps “desensitised” her, leading her to question her sense of “normality”. (ID 06) Whilst another participant who previously believed that her experiences would be helpful to the role, now reflected that they could potentially inhibit her volunteering (ID 08).

For some participants, the training programme revealed a wider world, with different experiences of dying and loss than they had known. One participant reflected;

“I am obviously very naïve - but I can’t imagine any family fighting in the presence of someone who is dying”. (ID 12)

In this way, the training programme and process of reflection provided participants with a revised and broader context to explore their personal experiences of bereavement and loss allowing them to gain new understanding and develop new meaning.

The Education and Training programme aimed to hone the life skills of the participants in accordance with international experiences of such volunteer programmes, mainly in the Netherlands, Italy and Germany [ 11 ]. It did not look to professionalise the volunteers, which would have been contrary to the broader objectives of the project in creating a “community presence” at the bedside. Deeper learning in the context of this study was defined as the ability to reflect on the content of the sessions and develop a sense of self-awareness and insight which could then be applied to their role as a Volunteer. In this way, the participants’ reflections revealed a growing sense of awareness that their learning was less about knowledge and more about their emotional, spiritual, social and philosophical development. “I have a lot to learn and it is not just about knowing, but about handling my feelings and reactions” (ID 13)

“After the training today I feel a lot more calm and competent about the whole idea, I really feel settled and kind of awe inspired” (ID 10)

Diary entries revealed participants’ questioning how they might manage their own experiences, with the recognition of the potential impact on their behaviour and ability to provide support:

“The more too, I realised the emotions that could/would be present at the bedside and in me… It will be a struggle to hold the responsibility and the feelings- and a desire to help.” (ID 07)

Moreover, the participants also shared their growing awareness on the impact that the training was having on their personal lives and beliefs, leading them to question and challenge their way of being, particularly in relation to their relationships with others and their individual styles of communicating;

“… Is it because I find it hard to talk about my own personal problems so that I don’t always symphonize (sic) with people who want to talk about their problems?” (ID 01)

Two participants reflected on the influence the training had on their own life philosophy and sense of mortality;

“…I’m hoping that my volunteering role will help me to value my time and talents even more while I am on this earth- I don’t want to be on my death bed with “the music still in me” as they say”. (ID 07)

“I believe that by doing this type of volunteer work, one ponders their (sic) own existence and being.”(ID 14)

Whilst others reflected;

“I think the training will help me to grow as a person and learn things about myself”. (ID 06)

“Every week on this course I have been motivated to think about things on a deeper level” (ID 11)

A growing personal awareness prompted the participants to explore ways that they might cope with the impact of their future role.

“I do need to prioritise my own well-being so that I stay well” (ID 02)

Participants began to develop their own strategies to separate the emotional content of the training sessions with their home and personal lives and this then formulated their thinking of how they might cope in their ongoing role as a volunteer.

“I have found that taking some time out after the training and just getting my head around things enables me to appreciate the training and understand, but also not let it have a detrimental impact on my life”(ID 03)

“I am thinking what could be my bridge, the point where I enter a volunteer role and the exit point where I come back to my life” (ID 05)

In one session, the group was shown images of people who were near to death to illustrate some of the physical changes that may occur during the dying process, aiming to prepare the group for some of the visual and potentially distressing symptoms they may witness in their role. The subsequent diary entries revealed the impact of this exercise, with a range of responses from those who found it sad or distressing ( n  = 2) to those who did not appear too shocked or disturbed by the images ( n  = 3) and the remainder not commenting on this particular exercise within their diary entries. This exercise appeared to be particularly powerful in provoking further thinking around how they might cope in their volunteering role and the need to find an appropriate outlet for the human distress and impact of loss that they might experience. Furthermore, participants reflected on their personal resonance with the images and began to identify the individual meaning that the loss had for them:

“I felt moved and sad because I could see that some of these patients had suffered. However, I consoled myself by the thought that their suffering was now over and they were at peace. This is something I will remember on leaving a patient who has died.”(ID 02)

“The graphic photographs did not shock or upset me at all…I was very moved by the pictures of the couples, their love was palpable to me. Human feelings are very important to me, much more than what people look like.”(ID 06)

In this way, participants used their reflections to project forward and prepare for their Volunteering role, using the sessions to develop a framework of approach and personal understanding of how they might behave and cope;

“My aim will be to tune into the emotions without being overtaken by them. I want to be watchful and learn to protect myself without becoming depersonalised.” (ID 13)

“The uneasy side of it is controlling our own emotions, and finding ‘the place’ as and when to switch off” (ID 04)

For some participants ( n  = 8) the sessions which addressed the practical aspects of the role, such as how to enter and leave the room after an episode of care, were the most helpful in allowing them to explore and experiment how they might behave in the role. However one participant (ID 13) noted that this might, again; detract from the “naturalness” of the encounter and the uniqueness of the volunteer role, distinct from the clinical care provided by professionals.

All participants reflected that the training programme had been comprehensive in preparing them for their volunteering role, although responses varied from an excited

“I can’t wait to start, bring it on” (ID 12)

To a more considered;

“I am anxious, insecure, but excited.... and hopeful” (ID 13)

Four participants noted that the planned visit to the ward areas with Specialist Palliative Care Team members was eagerly anticipated and a real opportunity to contextualise their learning.

Unity/cohesion

All participants reflected that the group in and of itself, was cohesive and facilitative;

“I was very aware of how easily we spoke in the group about very precious emotional memories. We have become a very supportive, comfortable group” (ID 13).

“At this time and throughout the day I was very aware of the supportive cohesion and trust within the group” (ID 11).

In the development of the Education and Training Programme it was acknowledged that the group environment would have a significant influence in enabling participants to share and reflect. This was further strengthened by the negotiated group contract setting boundaries and an agreed framework for the group to feel safe and supported. However, one participant highlighted a lack of adherence to the agreed rules of the group contract referring to an issue when a group member had been spoken over by two other participants (ID 01).

Some participants ( n  = 3) who took a less active role in group feedback, reflected on their discomfort sharing and discussing issues with the wider group. However for most, this appeared to lessen with time and familiarity and one participant later reflected on her “frustration” that she was not sharing her views more openly leading her to reflect on the need to increase her personal confidence and self-belief. Interestingly, following a subsequent session the same participant reflected on her growth;

“I feel proud that I contributed my own experiences of my grandmother’s death this week, I actually surprised myself as normally I am a very private person” (ID 10).

As the training progressed and the solidarity of the group grew, the participants’ reflections reveal a developed understanding of the potential contribution the service could make. Furthermore, their increasing confidence is reflected not only in their ability to share in-group discussions, but also with an increased self-belief in the validity of their own opinions and experiences.

“I cannot wait for the further discussions we’ll have as a group because we all bring a unique vantage point” (ID 14)

However, the reflective diaries were also used by some participants to explore their frustrations or disagreements with other participants on the training course. On two occasions there appears to be some personality differences and in another an opposing view or opinion. The diaries appeared to enable participants to share and explore these feelings in a safe and non-confrontational environment.

“I found one member of the group a bit dogmatic in regard to religion and morality, but I was very pleased with myself for not challenging [this person’s] views too much as I don’t feel it is appropriate trying to do in the context of the group.” (ID 06)

The data contained within the diaries provided a valuable insight into the experiences of the volunteers throughout the duration of the training programme. This enabled the volunteers’ journey from novice to potential CODV to be explored.

In line with previous findings by McKee et al. [ 12 ], a consistent and core motivating factor in the decision of participants to join the Care of the Dying Volunteer Programme was a strongly held belief in the importance of preventing patients from dying alone. Undoubtedly, in Western societies the concepts of “dying alone” and “bad death” are often conflated [ 13 ]. However, as the training progressed, the reflective diaries revealed a subtle but important shift in these volunteers’ perspective away from a focus on the actual moment of death of the patient, to a broader sense of ‘being there’, and ‘journeying with’ the patient during the last phase of life.

The experience of personal bereavements and losses was another significant motivating influence for participants to both engage in the training and also in their onward recruitment to the role. This finding concurs with previous research exploring motivations to volunteer for end of life care roles, predominately in the hospice environment [ 14 – 17 ]. However the Training programme, together with the completion of the diaries also enabled participants to revisit their own experience of loss and bereavements and for many participants, the data indicated a revision of understanding or perception.

Neimeyer [ 18 ] identifies this reconstruction as a common, though often painful and protracted, process in the aftermath of a significant loss where the bereaved search to make sense and meaning from their experience and integrate the loss into their adjusted self-constructed narrative. The training programme and subsequent reflections, allowed for a further reassessment of these experiences often leading to the new sense of meaning or “reframing” as described by Neimeyer for more acute phases of loss.

Self-awareness was considered to be a key attribute for the role as a Care of the Dying Volunteer, ensuring that participants were able to recognise their own emotional responses distinct from those of the patient or family member they were supporting. The diary data evidenced a developing self -awareness and personal growth for the majority of participants, with an increasing recognition of the connection between personal experiences and the application of the learning from the training sessions. Boud [ 19 ] advocates that effective learning is always grounded in prior experience and therefore new learning must take that experience into account. He states that an individual’s past experiences profoundly affect their perceptions of what does and does not count as important; acting as a way to sensitise a person to some features of the world and blind to others. In this way, the training programme and process of reflection provided participants with a revised and broader context to explore their personal experiences of bereavement and loss affording the potential to gain new understanding and develop new meaning.

This theme is also reflected in the findings of a recent study by Ferreira et al. [ 20 ] that illustrated that volunteerism has positive impacts on both learning and knowledge in addition to providing countless opportunities for personal growth. Boud [ 19 ] develops this theory further, stating that reflection is an essential component of experience-based learning, in which the process of reflection in itself is an experience with the potential for new perceptions, thoughts and feelings. In essence, it offers an opportunity for participants to alter their world view, and provides a vehicle for participants to develop, and grow beyond the specific learning objectives of the training programme. This concept of experience-based learning, whereby the learning involves a holistic approach in which the learner actively constructs their own experience is perhaps best defined by Kolb:

“Learning is the process whereby knowledge is created through the transformation of experience” [ 21 ] (p. 38).

The ability to reflect was also identified as an essential requirement of the ongoing volunteering role and there was a mandatory requirement for all volunteers to attend a monthly group supervision session in which they would be required to reflect on episodes of care they had provided to patients and families. Volunteers were required to Present salient points and to reflect on both the cognitive and emotional impact, which promoted opportunities for both personal and group learning. Regular group supervision also provided ongoing support allowing volunteers the time and space to reflect on their experiences in a supportive environment, and this was identified as an essential coping strategy to maintain the emotional health and well-being of the volunteering team. Reflective practice is identified as a key component in promoting resilience for all those working in end of life care and in reducing the risk of burn out or compassion fatigue [ 22 ], and this recognition of the benefits afforded by the mutuality and shared experience of the group reflect the findings of a study conducted by Claxton-Oldfield et al. [ 23 ] who detailed a variety of methods employed by volunteers to prevent burnout.

This supports the premise that it is not possible to provide support for others without the ability to care for oneself [ 24 , 25 ] and concurs with Showalter [ 26 ], who identified that professional caregivers must learn to make a clear distinction and balance between their personal and professional lives in order to sustain their sense of emotional and physical wellbeing, similarly volunteers need to find this sense of balance and boundary.

In addition to this formalised peer support, the diary data revealed recognition of the importance of developing individual strategies to cope with the consequences of the role. This theme emerged at different points throughout the training programme, but particularly after the sessions that focussed on the dying process, prompting the participants to reflect both on the impact of the session, whilst also acknowledging the challenge of managing their emotions in the role of a volunteer.

The diary data indicated a strong sense of unity and cohesion within the group and this was extended into the ongoing monthly supervision sessions, which offered an opportunity for the volunteers to share their experiences of providing support. This supports the findings of a study by Costa et al. [ 27 ], who report that the experience of sharing in itself facilitates a sense of community. The theme of group cohesion was repeated throughout the diary entries and the importance of the safety of the learning environment appeared to be a key component of the training programme. Death and dying are clearly very emotive and sensitive issues, which are often culturally, or religiously embedded in beliefs and understanding. Therefore the safety of the group and environment, were essential in creating an opportunity for participants to reflect and explore their personal resonance with the issues presented. However the individual reflection provided by the completion of the diary appeared to enable many participants to explore issues at a deeper level, including their relationships within the group and the impact on their ongoing growth and development.

Clearly, reflective diaries are only one method that can be used to facilitate the process of reflection in a learning environment; other methods include story-telling, creative writing, critical incident reporting and other experiential exercises and it is important to note that reflective diaries may not offer an effective method for all learners [ 7 ]. In this study, despite the evidence that for many emotional and personal reflection was a skill that developed over the period of the study, more guidance and ongoing support in engaging effectively with the reflective process may have potentiated greater involvement in the four cases where this remained limited. Identifying innovative ways to ‘teach’ reflection as part of the training, providing ongoing feedback in response to entries made and using a variety of approaches (for example the use of ongoing verbal and written feedback to diary entries, taking into account individual learning styles) may have provided valuable support to those who found such activity challenging. It is important to remember also that the written format of such reflective diaries may prove challenging for other reasons. For example, the literacy skills of the individuals completing the diaries are also likely to be pertinent to the free expression of thoughts and feelings. An alternative option may be to use an audio or electronic diary as a means of recording.

In addition, it should be noted that within this study the decision was taken that the Training Lead should also review the diaries on a sessional basis to facilitate the delivery of a more responsive and student-centred programme. However, this may have potentially influenced the participants’ openness and level of disclosure about the training delivered and received.

Furthermore, the findings in this study are based on a relatively small sample from a single locality in the acute setting of a hospital. Generalised assumptions regarding specific end of life care training in other care settings or with other groups of participants or healthcare professionals are precluded.

In this study, the use of reflective diaries provided the opportunity to examine the lived experience of a volunteer training programme to support dying patients in the acute hospital setting. The diaries facilitated an open dialogue between the volunteers, training leads and the researcher, and offered the opportunity to explore the volunteers’ understanding of the course content together with an account of their learning processes on a sessional basis.

The diaries offered an inexpensive and simple medium to promote the important and ongoing process of reflection, and for many this skill developed over the duration of the training programme and was adopted as part of their Volunteering practice and ongoing peer supervision. The diary entries revealed an important shift in focus over time from an initial preoccupation with previous experiences of death and dying to looking ahead to contextualise their learning, reflecting on how they might cope and function in their ongoing role. We believe that this is illustrative of their personal growth through exposure to the learning and reflective experience.

The volunteers’ reflections have been a driving influence in the revision and development of the education and training programme, which will now be used to train a further cohort of participants. For example, whilst the pilot reinforced the value of reflection, it also highlighted that the skill of reflection is not a given. Not everyone was able to ‘connect’ fully with the completion of reflective diaries and in order to maximise the potential for full involvement in this element of the process, further guidance, encouragement and support have been built into the training and ongoing supervision of a new cohort of volunteers.

Undoubtedly, further work is required to establish the effectiveness of the reflective diary in end of life care education for volunteers and also the applicability of the training methods for other groups and settings. A longitudinal study design which offers the opportunity to track participant’s development through training and implementation may provide more comprehensive evaluation of the reflective diary as a means to promote enhanced practice and quality in care provision.

Abbreviations

care of the dying volunteer

OPCARE9 – EU 7th Framework funded study www.opcare9.eu . Accessed 01-03-16.

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Acknowledgements

The authors wish to thank and acknowledge the support and guidance of Prof Peter Salmon, Institute of Psychology, Health and Society University of Liverpool for his advice on the initial design of this project. Prof. Salmon’s substantive contract was with the University of Liverpool and the project received joint funding from Marie Curie Cancer Care and Dimbleby Cancer Research Fund.

Marie Curie Cancer Care funded the open access submission fee for this paper.

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Alison Germain, Kate Nolan, Rita Doyle, Stephen Mason, Maureen Gambles, Hong Chen, Ruthmarijke Smeding & John Ellershaw

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AG participated in the data analysis, analysis interpretation, and preparation of the first and subsequent manuscript drafts and final approval of the manuscript. KN participated in the conception and design of the study, data preparation, data analysis, analysis interpretation, preparation of the first and subsequent manuscript drafts. RD participated in the design of the study, manuscript editing and final approval of the manuscript. SM participated in the design of the study, manuscript editing and final approval of the manuscript. MG participated in the design of the study, preparation of the review of analysis interpretation, first and subsequent manuscript drafts, review of manuscript drafts, and final approval of the manuscript. HC participated in the data preparation and analysis. JE participated in the design of the study, review of manuscript drafts and final approval of the manuscript. RMS participated in the design of the study and final approval of the manuscript.

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Germain, A., Nolan, K., Doyle, R. et al. The use of reflective diaries in end of life training programmes: a study exploring the impact of self-reflection on the participants in a volunteer training programme. BMC Palliat Care 15 , 28 (2016). https://doi.org/10.1186/s12904-016-0096-5

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Received : 21 July 2015

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Published : 05 March 2016

DOI : https://doi.org/10.1186/s12904-016-0096-5

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The most common end-of-life reflections: A survey of hospice and palliative nurses

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• 1 Department of Psychology, Towson University, Towson, MD, USA.
• 2 Department of Nursing, Towson University, Towson, MD, USA.
• PMID: 30541400
• DOI: 10.1080/07481187.2018.1539053

To identify the most common end-of-life reflections among terminally ill patients, 124 nurses from the Hospice and Palliative Nurses Association (HPNA) completed an online, open-ended survey. Common themes of these reflections included concern for loved ones, regret, morbidity and mortality, gratitude, spirituality, legacy, and thoughts about acceptance or non-acceptance of impending death. Nurses reported that their patients were more concerned about their loved ones than their own morbidity and mortality. Common end-of-life reflections may serve as cues that hospice and palliative patients are self-initiating therapeutic life review.

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Reflections on Caring for Patients With Cancer at the End of Life

Most metastatic cancer patients are still receiving aggressive methods of treatment near the end of life, and palliative/supportive measures are significantly underutilized.

At this year’s American Society of Clinical Oncology (ASCO) Annual Meeting, two abstracts were presented that used a large private insurance claims database to examine patterns of care at end of life for patients with incurable cancer. (Disclaimer: I am an author on both of these abstracts, and the following blog pertains directly to my current ongoing research.) These studies found that overall rates of any “aggressive” care in the final 30 days of life are high for patients younger than 65: more than 70% of patients received at least one aggressive measure (including chemotherapy, radiotherapy, hospital visit, or in-hospital death). Perhaps most striking was the finding that approximately one-third of patients with metastatic cancer died in the hospital. In addition to a high prevalence of aggressive care found in these studies, we found that supportive and palliative measures appear to be significantly underutilized at the end of life. Fewer than 20% of patients received hospice care in the final 90 days of life, and only 40% of patients received any supportive care (defined as home health nursing, hospice, or palliative care consultation).

The results of these studies may not be surprising, as they reflect some of the difficulties in providing cancer care to patients near the end of life. Of course, when caring for metastatic cancer patients it is not possible to know exactly when a patient will die. In some circumstances, providing aggressive care to a patient with metastatic cancer may prolong their life. In the present study, the aggressive measures provided within 30 days of death by definition are only representative of those measures that failed to provide significant prolongation of life. Further, the theoretical benefit in quantity of life must be evaluated in terms of potential costs, which can include treatment toxicity, financial hardship to patients, and possible reduction in quality of life.

In some cases, it may be difficult to know when a patient is within the final 30 days of life, and therefore should no longer receive aggressive care measures. However, it is often apparent when therapies are no longer effective, and one might expect high rates of provision of palliative care and supportive measures near the end of life. Even when using a more generous 90-day window (rather than the 30-day window used for aggressive measures), there was substantial underutilization of multiple supportive care measures, including hospice. What these studies cannot tell us is whether these practice patterns are patient-driven, physician-driven, or some combination of the two.

In my opinion, the takeaway message from these studies is that more work is needed to change the paradigm of end-of-life care for cancer patients. On one hand, advanced treatments such as radiosurgery and immunotherapy are providing treatment options, and hope, to patients where none existed in the past. On the other hand, it remains an unfortunate reality that the majority of metastatic cancer patients will ultimately die from their cancer. Because treatment of cancer is often couched in terms of “fighting a battle,” it may be that patients view cessation of aggressive care and initiation of palliative care as capitulating in a fight. This can lead to reluctance to discontinue therapies that are no longer effective, and it may be an underlying cause for low rates of hospice enrollment. A solution may be better communication between providers and patients. This would include frequent and honest discussions about prognosis of metastatic disease. It is also incumbent on providers to be sure that patients understand that most treatments for metastatic disease are not done with curative intent. Clear communication regarding goals of care will better help patients understand their options, and facilitate cessation of futile therapy and receipt of supportive care for these patients at the appropriate time. As oncologists, we should keep in mind that our goal is to provide care that prolongs patients’ lives, and not their deaths.

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Editorial - Reflection on End-of-Life Care

When I was asked to write an article on end-of-life care from the perspective of an oncologist, I began to think back over the past 25 years in my specialty. When I graduated from medical school, I received a gift from a friend of 6 simple words—“Cure Seldom, Relieve Sometimes, Comfort Always”—that was over the doorframe of the original Hôtel-Dieu de Paris. Little did I know how important these words would become in my career as an oncologist. We physicians tend to forget in the 21st century that long before we had therapies such as potent antibiotics, extensive surgery, and powerful chemotherapy agents that can cure many patients, our job was mainly to relieve and to comfort. Although I have received the least amount of training in the relief and comfort aspects of medical care, they have become major components of my practice and are areas in which I feel that I am most valuable to my patients. 1 Educating the patient and family on the illness, treatment options, and prognosis will help them all prepare for the end of life with realistic expectations.

While realizing that all of us will die, physicians try to prevent untimely and avoidable deaths. As a cancer physician, many times I have been asked to see patients who have incurable but treatable cancers. I stress these 2 words to my patients. We need to recognize the issue of incurability and to be honest with our patients when we evaluate them.

Many years ago, one of my mentors from the National Cancer Institute (NCI) told me that when you first see a patient with cancer, you should ask yourself whether the patient has a curable or incurable cancer and then provide this very critical information to the patient at the very first visit. Many physicians tend not to follow this approach, but I believe that being honest with patients about their illnesses can go a long way in setting appropriate expectations for future care. 2

When I began to treat patients 25 years ago, most patients obtained information about their disease from the public library. Now, however, many more sources of information are available. The explosion of information available on the internet has, for the most part, been extraordinarily valuable to our patients. I have always given my patients their pathology reports, articles to review, and information from NCI's website and other helpful sites, such as UpToDate, to describe the risks, benefits, and limitations of available treatments for their malignancies. We as physicians should be honest with our patients about their illnesses because if we are not, they will likely find the information on the internet anyway and the sacred trust between patient and doctor may be shattered. The physician communicating this information face-to-face is preferable to an alone and frightened patient reading about it on a website.

The use of palliative care has been underutilized in patients with treatable but incurable malignancies. A recent article demonstrated the effect of early palliative care intervention in patients with metastatic non-small-cell lung carcinoma receiving chemotherapy. 3 In this study, the patients receiving chemotherapy plus palliative care lived an average of 3.5 months longer than patients treated with standard chemotherapy alone. This valuable information shows the importance of using palliative care in treating patients with ultimately fatal malignancies. Again, open, honest discussion with our patients about setting appropriate expectations and goals can be the most valuable element of their treatment.

Declining performance in daily living activities is an important clinical factor for guiding our advice to patients. 4 For instance, observations of increasing somnolence during the day and decreasing appetite are key predictors of end of life, as Seow and colleagues recently demonstrated. 4 Oncologists, and indeed all physicians, should pay particular attention to these key clinical factors and explain them to our patients and their families so they can better prepare for the decline in the patient's condition and have appropriate expectations for his or her care. Our goal should be an expected, peaceful death.

I would like to say that the care of patients near the end of life is extraordinarily rewarding. When a patient's family returns many months or years after the person's death and thanks you for the care that you gave, I can think of no greater or more rewarding testament.

Reflective Journal 3 - End of Life Care, Cultural Beliefs

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