Seeking Comfort and Demanding Agency—An Autoethnographic Exploration of a Patient and Partner Experience

Abstract

This article applies an autoethnographic approach to the journey a patient and their partner undertook as they negotiated a medical adverse event. The resultant cascade of conditions lasted almost 4 years and resulted in the eventual death of the patient. The narrative is told from the dual perspectives of both the patient and their partner, providing a valuable resource for the practice of patient and family-centered care. This article illuminates the patient's experience of comfort across a continuum of healthcare settings and how both the patient and their partner were able to enact agency despite challenging institutional barriers, to become partners in their healthcare journey.

Introduction

It is argued that evidence of patient experience of adverse events is currently lacking and should be routinely captured to inform health policy (Harrison et al., 2015; Mercer Breen, 2022). This article seeks to contribute to the knowledge of patient and family experience utilizing an autoethnographic approach to the lived experience of a patient who suffered multiple impacts from a medical adverse event. This led to protracted treatment for almost 4 years before the eventual death of the patient.

I, Jenny Aimers am the primary author of this work. Peter Walker, the patient, was my partner. Peter is credited as a coauthor in recognition of his contribution to the initial data collection however he died before this article could be written. His voice remains in my analysis and quotes, in italics taken from his notes.

Peter Walker spent 6 months as an in-patient at Dunedin Public Hospital in New Zealand after a surgical accident on 25 September 2018 that left him critically ill. While he made enough of a recovery to be discharged after 6 months, a cascade of conditions resulted in numerous readmissions that ultimately proved unsurvivable.

The article is structured into four parts:

An outline of the methodology and method used

The chronological storying of the medical accident

An examination of two themes (a) patient comfort and (b) agency. The literature is woven throughout this section. It frames this analysis covering a wide range of subjects in both healthcare practice and sociology. The literature, therefore, provides a light scaffolding for our experience rather than a deep exploration.

Conclusion—recommendations for improving patient and family-centred care.

Methodology

Autoethnography is acknowledged as an appropriate method with which to examine patient experience as it encompasses the subjectivities and emotionality that come with experiences rooted in trauma (Frank, 2013; Harrison et al., 2015; Klugman, 2008; Mercer Breen, 2022). Chang's (2016) guidelines for autoethnographies in health research advise the use of authentic and reliable data that provides detailed personal perspectives. These approaches are evident in the types of data used (personal diaries, notes, and conversations) and the emotionality that is implicit in quotes from Peter's notes and my analysis.

Because this was a shared experience between Peter and myself we began a dialog that could be described as duoethnography, a form of collaborative autoethnography, which takes a polyvocal dialogic approach to encourage introspection and reflexivity (Burleigh & Burm, 2022). After Peter's death, I continued alone by reanalyzing diaries and notes made by Peter and myself and paying particular attention to discussions we had together. This data was then viewed through a sociocultural lens as this acknowledges that patient experience is the sum of interactions and organizational cultures that make up the continuum of care (Beryl Institute, n.d.). It is from this standpoint that our experience is examined as Peter was moved from the intensive care unit (ICU) to a general surgical ward, followed by outpatient care coupled with district nurse care at home and finally, palliative care. To complete the analysis without Peter meant I put more emphasis on the dialogic data, this reflexive process ultimately yielded the two themes.

This research was therefore undertaken independently of any institution and has not sought formal ethical approval.

The Story

Whether ill people want to tell stories or not, illness calls for stories … told in conditions of fatigue, uncertainty, sometimes pain, and always fear….” (Frank, 2013, p. 54)

The Adverse Event: 25 September 2018

Peter was 53 years old when he had a preemptive kidney transplant from a live donor in 2014 due to a hereditary condition, polycystic kidney disease. In 2017 this transplant began to fail, and he began home dialysis in 2018. He was scheduled for a second kidney transplant in November 2018 from a live donor, in preparation for this he had a nephrectomy to remove his remaining native kidney (the first having been removed about 3 years earlier) to create space for the new transplant. During the nephrectomy, the surgeon made several errors. The event is recorded, anonymously, in the Southern District Health Board's adverse events report 2018/19. In New Zealand, such events are classified as accidents which means ongoing care and compensation are funded through the Government's Accident Compensation Corporation.

50/50: September–November 2018

I can clearly remember going into the hospital on a fine, sunny September morning in 2018. I remember talking to the anaesthetists before going into theatre. The usual work up to going under and then blackness.

Peter spent around two and a half months in ICU. My diary records the events as they were told to me by the surgeon who was operating, 15 min into Peter's laparoscopic surgery the surgeon was separating out the veins to clamp and cut the vein to the kidney, but the vein he had clamped was attached to the small bowel, not the kidney. When he realized his mistake and released the clamp, it nicked the artery behind. Peter bled out 4 l of blood in a couple of minutes which caused a cardiac arrest. The surgical team started CPR while the surgeon abandoned the laparoscopic procedure and opened Peter up to remove the kidney in order to access the bleeding. In the rush, they damaged his spleen, pancreas, lungs and small bowel. The loss of blood also clotted his dialysis fistula.

In the first week in ICU Peter was intubated and kept sedated. It became clear that he was suffering from a cascade of events and in the days that followed there were numerous x-rays, scans, and several operations. Among the medical staff, Peter gained a reputation for being a patient to which rare consequences could and would happen, thereby requiring a Plan A, B, and C. Prior to bringing him back to consciousness, Peter had a tracheotomy, where a breathing tube was inserted into the throat.

Peter later said he did not remember anything about being unconscious except for what he described as a dream—that he was in a parked car and people were knocking on the car window and calling for him to get out but he was afraid and locked all the doors.

I woke, I was constrained, there were tubes in my arms, in my throat. It seemed like years since I had been away. It was 10 days. What went wrong?

Communication was difficult as Peter could not talk because of the tracheotomy. Even after he regained consciousness, he did not have many specific recollections of ICU and those he did have include a vivid recall of periods of delirium, insects on the ceiling, smoke in the room, and episodes of paranoia concerning night staff. He later described this time as like living in a scene from the film “One Flew Over the Cuckoo's Nest.”

I was in a room by myself, I was confused I wasn’t eating—getting fed through a tube in my arm—the PICC line. I was only allowed to suck on ice. I asked what my prospects were—50/50 the Doctor said. It was only much later that I realized that 50/50 was a half chance at life. Days blend into one. Getting up was a huge trial, 2-3 nurses and a physio helped me stand, then two paces sideways up the bed then sit, then lie, exhausted.

Infections, high temperatures, sepsis, sweating, confusion, people around me looking worried. Doctors talking, sometimes to me, confusion.

Trips out to the ambulance bay in my bed—to lie with the sun on me. I loved the sun. Back to my lonely room. Such long periods by myself.

It is interesting that Peter thought of his time in ICU as lonely as there were also nurses there, but often observed from the nurse's station just outside his room and behind him, so he could not see them from his bed as it faced the window. He also had visitors for 4–5 h a day, yet still, he felt he spent long periods by himself. It was the everyday small things that challenged his physical comfort, pain from a massive open abdominal wound, numerous wound drains, intubation and the drugs given to alleviate pain that left him sleepy and confused.

One of the complications that was troubling for Peter was that despite having many injuries he still had his underlying renal failure to contend with, which meant regular hemodialysis.

Dialysis at ICU was weird, new machine, the dialysis nurses called it the Bing Bong. The Dialysis nurses put me on, pain, lie still, 5 h, then the ICU nurses take me off. Some of the ICU nurses were lovely, others weren’t familiar enough with the machine and were impatient.

Because of the inability to keep his abdominal cavity free of fecal contents, Peter was prone to sudden bouts of bacteremia, sometimes drifting into sepsis.

I slipped into blood infections suddenly. Initially I would get very cold, shivers, vomiting, then my temperature would rise rapidly. These infections stemmed from pockets of gunk in my body, bowel juice, poo, blood, pus all harboring bugs which broke out into my bloodstream, bacteremia then sepsis. I also had an existing hospital-acquired super bug, EBSL, attached to E. coli bacteria that responded only to one antibiotic.

Peter continued to be treated in ICU for another 7 weeks. During that time the blood vessel that was originally cut required a stent after his bowel became ischemic and began to perforate in multiple places. There were more infections, many blood transfusions and intravenous food, and total parenteral nutrition (TPN) for a total period of about 3 months.

Getting Out: December 2018–March 2019

It was not until he moved to the surgical ward that food was gently introduced, but not until after Christmas. While there was no plan for going out during the day, I lobbied the social worker for special dispensation to come home for a few hours on Christmas day.

I got out for the day release for Christmas day—so weak—wheelchair taxi then into the house. No food for me—well a couple of bites and a sip of bubbles, then back to the hospital—so sad. But out once means I could do it again—so weekly, then twice weekly home. Then every fine day I would get someone to wheel me up the street for a change of scene and some sun.

Because we asked if we could, the day-release outings became a regular occurrence. In a borrowed wheelchair we went to the sea, to the botanic gardens and other places when time was too short to come all the way home. One day when we had little more than an hour, I wheeled Peter in a hospital wheelchair with flat tyres, in complete personal protective equipment to the nearby museum and we explored the exhibits. Peter loved these outings and once a norm was established, he looked for any opportunity to escape, although he reported this often resulted in a feeling of deep sadness on his return.

Near the end of this initial hospitalization, Peter received a letter with a formal apology from the chief medical officer of the hospital. Although it had not been offered, we initiated a restorative meeting with the surgeon to allow Peter to express how he felt.

When Peter was discharged in early 2019, he came home with a large open laparotomy wound that had a negative pressure VAC dressing and a jejunostomy bag. He returned to the hospital for dialysis 3 days a week, until he was well enough to resume home dialysis independently. District nurses provided daily support for his wound dressing.

Finally, we came up with a plan to get me out—dressing changes with the district nurse, frequent visits to the hospital—relapses but home. The wound on my front was massive, constant pills, painkillers dressing changes on and on. Then back to hospital for a second time 6 weeks more sepsis, more pools of pus and fluid then home again. The third visit only 1 week but after I got home more infections, more sepsis, more pools of pus. But me stronger. Dialysis three times a week at the unit [in hospital]. The arrival of Covid 19 then expediated the transfer to home dialysis.

High on Hope: March 2019–December 2020

Peter said to me at one point that apart from one bout of sepsis in ICU he never thought he was going to die while in hospital, he was very focused on recovery. Our optimism for recovery, or at least a reconfiguring of our lives, continued to grow with Peter's discharge in 2019 and on into 2020. Peter's strength continued to build; he practiced Pilates, walked every day, and did tasks around the home and as he had been a regular horse rider up until the accident; he began riding for the disabled. We were able to go away for short trips. Peter also experienced two failed attempts to reconnect his bowel, the anastomosis failing to heal each time. Small bowel perforations resulted in abdominal fistulas. He had further episodes of bacteremia and several short-stay hospitalizations for various complications related to this. A fall in October 2020 resulted in a compression fracture in his spine and a broken wrist slowed progress. In November/December Peter had a month of TPN at home to boost his nutrition, this was stopped early as the peripherally inserted central catheter (PICC) line was infected and the reduced staffing over the Christmas and summer holidays meant it was never restarted.

Slow Decline: 2021

Peter's bowel continuity was achieved in April 2021, albeit with a small hole that refused to heal which resulted in a long-term bowel fistula. It was hoped the reanastomosis would ensure Peter would not remain malnourished. Peter had high hopes but what a miserable time that year was, experiencing chronic diarrhea, a persistent bowel fistula in his abdomen, excoriated skin and no improvement in nutritional status. He was confined to the house because of fecal incontinence and, when combined with developing congestive heart failure, his exercise effectively stopped. He lost the hard-won muscle mass he had built up over the previous year and his overall health slowly deteriorated. Over this time, we were supported at home by district nurses and key consultants accessible directly.

Losing Hope: January–August 2022

Peter's final months saw the appearance of a random cluster of new ailments that involved an increasing list of consultants. A growth in his jaw eating into his ear canal, inflammatory arthritis in his joints that appeared overnight, he developed acquired von Willebrands disease that reduced the ability of his blood to clot and a new perforation developed in his proximal small bowel. From here there was no recovery. I think Peter knew this a long while before me. Even in his last weeks, I was planning for how we would move on from these new challenges. But he had been talking about his wishes for his funeral since the beginning of the year and had told a few people that he thought he was dying.

His last admission came in July 2022, in the middle of the night when he was fast-tracked through the Emergency Department because he was hemorrhaging in his bowel. By this stage Peter was an experienced patient, he could self-triage the level of the emergency and assess whether he could wait until the morning. This time he was scared and did not want to wait. This was followed by several weeks in an emptied-out surgical ward under Covid precautions. The family gathered, taking turns to sit with him 24 h a day. I lost track of time. I’m not sure how many days it was, the exact timeline was a bit muddled as a result. I had been told he was being reclassified as moving to palliative care, as he had, according to the registrar “too much working against him.”

I asked for a meeting and a group of consultants, registrars, and a palliative nurse were called into Peter's room. As we begin to review his symptoms we were interrupted as, from his fading consciousness, Peter said he wanted to be taken off everything and come home to die. The emotion in the room was palpable, there were tears and acknowledgements of Peter's bravery.

Peter's wish was actioned with astonishing speed. Within 24 h of arriving home, he was less communicative and seemed to be drifting away from the temporal world. He still had visitors coming to say goodbye; we talked to him but his responses became nonverbal. Even a district nurse came off duty to say goodbye as we had daily visits from them over the past few years. There was palliative support but because of the swiftness of his discharge and his rapid decline, we were given morphine and antianxiety medications to administer as we saw fit. As he slipped into that space between life and death he was agitated and physically restless, just as he had been when in a coma in ICU 4 years previous. There were signs of awareness; he steadied his hands when I told him I was trying to apply nail polish. As ever, he was very concerned with appearance and wanted to go out looking his best having already made his hairdresser promise she would be the one to do his hair after death. I could also get him to pucker up his lips for a kiss right up until about 30 min before he passed, even though his eyes were staring past me, unfocussed, into space. At about 5 a.m. on 5 August a few weeks short of the 4 year anniversary of the original adverse event he stopped breathing.

Themes

Patient Comfort

It is well recognized that patient comfort is central to patient-centered care (PCC; Wensley et al., 2017). Patient comfort is experienced on a continuum; it may be transient or dynamic depending on patient expectations under given circumstances. Comfort is also associated with the idea of home and is therefore linked to the other theme, agency, that I will address later. Comfort can be achieved in a variety of ways ranging from freedom from pain or discomfort, having sufficient time with family, feeling safe, having a sense of personal control, feeling cared for and being welcomed into the care environment (ibid). This section discusses the discomfort that Peter suffered.

Pain

Pain and suffering can come as a result of biological factors such as tissue damage but also as an embodied experience of suffering that causes tension and psychological distress (Bueno-Gómez, 2017). Foucault (1997) talks of suffering as being “unhomelike” in the world. This can lead to the sufferer feeling alienated from the world due to the extent to which an individual's experience of suffering is unknowable to others, even loved ones. Reflecting on his pain throughout this journey Peter described pain as,

Constant, either real visceral pain or anticipation of pain. The expectation of pain can be worse than the pain itself, pain varies from low level, a bit sore, to pain so intense that it drains the body of strength it shortens and intensifies the breath. Pain killers don’t really work, they fog the brain, they allow escape into a stoned world. The pain is always there digging, scratching, zeroing in on the soul. But the pain personifies the condition, it is real, perhaps the only real part of the journey on and on each day the same but here I am plodding on, step by step plodding.

When I first woke from the coma in ICU, I was constantly sleepy, always dropping off to sleep no matter what the time. Then one day I found out I was on fentanyl and other drugs by patches. The patches were making me sleepy all the time. I refused them from that point on, they were useless in serious pain, so I drastically lowered my painkiller intake. I fear that many people are kept asleep … easier to control.

None of the pain medications Peter was given appeared to effectively dull his pain and every action and intervention was accompanied by pain. It is interesting that Peter thought the opiate-based medications were more a management tool to keep the patient quiet rather than give any real relief and that these were at times, as in the case of patches, applied without full consent. I wonder if staff read a lack of complaint to equate to relief of pain, when in reality all that is happening is the patient is too stoned to complain? Pain and its associated suffering is a complex problem and in Peter's case, the therapeutic tools were less than ideal. In his final 24 h, despite being well-medicated on morphine, his last words were pain, pain, pain….

Physical Discomfort

For Peter physical comfort in the hospital was hampered by two things: inadequate facilities and insufficient thought or planning for his rehabilitation needs. I suspect this was, in most cases, a budgetary issue, facilities and services were not funded for optimal performance. For example, Peter at 6 ft 4 inches was never comfortable in the hospital beds, the beds were simply too short. This was exacerbated when he had drains or IV lines which made even moving to relieve pressure sores uncomfortable.

The beds in hospital were inevitably too short; my feet and ankles overshot into space if I stretched my legs out. I lie on my back awake, never wanting to move and in ICU especially I was cajoled and argued into lying on my side with pillows bracing me to keep me off my back.

One of the things that concerned Peter throughout his time in the hospital was that he could not have a shower. Cleanliness was important to him and at home, he would often shower twice a day. In the hospital he had too many tubes and bags hanging off him, he needed assistance that no nurse had time to give and on the main ward, the shower in his room did not work and was never repaired. There was talk once about using a communal shower, but this was curtailed because of contact precautions surrounding Peter. He had bed baths for the entire 6 months he was in hospital. One of Peter's main goals for his recovery was to be completely immersed in water in a hot bath. He never achieved that goal due to having an open wound, a stoma bag, multiple fecal fistulas and later fecal incontinence.

Stoma bag: constantly emptying it, messy, if it explodes shit everywhere. Sleep disrupted, Ileostomy is weird, poking out through my belly. It moves, it pulses, it disgorges shit.

When Peter was transferred out of ICU in early 2019 there had been an expectation that after his medical condition had stabilized, he would be transferred to an off-site rehabilitation unit where he would receive intensive physiotherapy. That was until it was realized that he would have to be transported back several times a week for hemodialysis. As a result, Peter was left in a surgical ward where physiotherapy was sporadic to nonexistent. We compensated with the day release outings, which became Peter's only source of rehabilitation. From a psychological perspective, these outings were probably the best thing for him, but any focused physical therapy was sorely lacking.

It is standard nursing practice to transition a patient who has been bedridden to sitting in a chair as a step to full mobilization. Peter never felt comfortable sitting in a chair, this was because he was never without an abdominal wound, stoma bag, fistula or some other obstruction that made folding his body painful or at best uncomfortable. The constant pressure from the nursing staff became quite distressing to Peter as he perceived this as being thought recalcitrant. Once Peter got home he either stood behind a chair with his hands resting on the back or reclined on our sofa. He rarely sat in a chair ever again.

Roughness in performing care tasks was another issue for Peter. He observed that the nursing staff on the surgical ward were under pressure, but this resulted in some being rushed, which he experienced as being rough. He judged nurses as good or bad depending on how kindly they spoke to him and how gentle and respectful they were with his body.

Emotional Discomfort

Peter experienced periods where he felt ignored or forgotten by staff; mainly because he felt he was viewed as troublesome. In ICU he often felt alone as the nurse inevitably stood outside the room out of his line of sight, and he was unwell so did not have the awareness to realize they were always right there behind him.

Archer et al. (2018) found that a patient's experience is negatively impacted by the busy nature of the hospital ward, where staff appear unapproachable to patients. Their research found that the best way for staff to express empathy is to take time to listen to patients. Listening to patients can identify strategies to make them more physically comfortable. Being listened to brings comfort and reassurance to distract a patient from the extreme fear and distress of being seriously ill. In the hospital, Peter spent more time with healthcare professionals than anyone else, for him this was similar to the social network that existed with his work colleagues. Peter found it comforting to talk to staff about personal interests. When he was well enough he would ask each new nurse and registrar about themselves, although the effort this required was often exhausting.

The registrar training rotation system is also an issue for the long-term patient as each time a new rotation appears Peter's story was relayed all over again. This was tiring and retraumatizing for Peter and some young registrars found it is difficult to listen. After a week in the surgical ward, Peter got bacteremia but did not want to go back to the ICU as that felt like a backward step. When he tried to express this to a young registrar he had never met before,

…and he said, ‘Do you want to die?’ I replied that I would take that risk.

Archer et al. (2018) found an inability to listen to patients as a contributing factor to treatment errors. I recall a moment in 2014 when Peter was about to receive his first kidney transplant. We were already in the preoperative waiting room when we found that there had been a last-minute change to the surgical roster and there was a new surgeon we had not met. I asked this man if he had seen the latest scan taken last week, he had not, and went off to check. Fast forward to 2018, this time a preop meeting well before surgery was scheduled and Peter asked the surgeon if a new scan was required before the operation. Despite there being adequate time to schedule this, the surgeon assured him that the scan from 3 years ago was adequate. If he had listened, he might have thought to ask Peter why he thought that was necessary, Peter would have told him that his enlarged kidney had grown even more and therefore his internal anatomy might look different. I spoke with this same surgeon as Peter lay unconscious in the ICU when the unexpected changes to his internal anatomy had impacted negatively on the operation. I reminded him that Peter had asked about an updated scan and he said that he wished Peter had insisted.

Patient and Family Centred Care (PFCC)

A central tenant of PCC is to view the patient as a partner in treatment and this requires a focus on health literacy, values and communication (Bauman et al., 2003; Wensley et al., 2017). More recently the family has been added to this acronym, PFCC, however, the primary focus is still on the patient but includes consultation with families. The value of the family is restricted to preparing for at-home care (Clay & Parsh, 2016; Jazieh et al., 2018; Kokorelias et al., 2019). In some countries, PFCC involves families in direct care roles with hospital inpatients (Gwaza & Msiska, 2022). This is not the situation in New Zealand or other countries like the United Kingdom or the United States, where family input is more concerned with decision making, treatment choices and as a mediator or translator of medical information to the patient (Chelko & Fay, 2022; Klugman, 2008; Owens, 2014).

What PFCC does not adequately address is the family member as an advocate. Peter relied on me to be vigilant and advocate for his needs. He preferred to leave all medical matters to me, with his primary personal concern being for staff to know who he was before this incident happened and for them to recognize how much he had lost. For family members who take on advocacy roles—and not all do—it is because they are more attentive to the needs of someone they love, even more so than those paid to do so (Chelko & Fay, 2022; Klugman, 2008; Owens, 2014). My experience mirrored Owens (2014, p. 260) as she cared for her brother, choosing to take on a quasi-medical role and engaging with the professionals, to be welcomed by some staff and rejected by others. While most staff do their jobs well, they need to remember they do not have the emotional attachment to the patients that families do.

Agency

One of the things that Peter wanted, even in the first weeks in ICU, was to go home. On the first occasion he was wheeled outside for some fresh air, he could not communicate but was convinced he was being picked up to be taken home. After almost 2 months in the hospital we negotiated the first-day release, this was a huge step forward toward going home permanently. Owens (ibid) said that even after only a month in the hospital both patients and their families long to flee the institution as it was becoming all too familiar. This is a feeling that I knew well. In the hospital the patient is powerless, everything that happens to them is on everyone else's terms. Peter often expressed his frustration that staff thought he was obstructive if he wanted to do something a particular way. He wanted power or agency over how he was cared for. There was a sense that some staff held the belief that long-term patients expressed a sense of entitlement. I would argue that what they were observing was that the patient had gained some knowledge about the system and their condition and are attempting to gain some agency over their care.

For Peter, home was a place where he did not have to struggle to make his needs known and he engaged with health professionals no more than an hour a day, and thus had almost complete agency over his comfort (pain notwithstanding). There is a very Foucauldian idea embedded in this situation, where both hospital and home can be described as heterotopias (Foucault & Miskowiec, 1986). Home, in this case, represented the ultimate utopia for Peter, a place he desired to be more than anywhere else. Conversely, the hospital represented a parallel space that kept his “undesirable” sick body, safely away from the rest of society. The hospital controls the patients by rules, protocols and surveillance, which is reflected in the building design with the nurse's station as the panopticon (a central surveillance system).

I observed that the further the patient is physically away from the hospital building the more agency the patient has for their care. In-home dialysis, for example, there is more flexibility for self-prescribing the dialysis treatment. Working with district nurses in the home is not bound by the rules of the hospital. The home environment facilitates collaboration on how to manage dressings and medications. At home there is no one to call on when dressings begin to leak, so a team approach to care is a necessity. Being on home dialysis also gave us the tools and experience to administer certain medicines. I became adept at recognizing when Peter was in the early stages of an infection and we were able to make a direct call to a consultant, go into the hospital within the hour for blood cultures to be taken and then begin a course of antibiotics at home through dialysis. These skills also made it possible to administer TPN. This arrived by courier directly to our house. We went from having no control in the emergency room or operating theatre to working out cocreated treatment plans at home.

The literature around patient agency within a healthcare setting places is strongly linked to developing health literacy, that is the ability to make informed decisions about one's health (Hunter et al., 2015; Shim, 2022). Hunter et al. (2015) argue that the sociologist's definition of agency is the capacity to act for oneself within a particular socio-cultural context, therefore there is much more to agency than developing health literacy. When a doctor discussed aspects of his condition or treatment directly with Peter he zoned out. This was for a number of reasons mostly because he was so unwell, or the situation just depressed him too much. I was the one that had to act on his behalf and sometimes I did not have all the information. Even if I was in the room registrars in particular would talk directly to Peter, all but ignoring me. While we had direct contact with the key consultants and I thank them very much for this, anyone new was not directly accessible. One place I did feel as though I had some agency was right at the beginning of the accident investigation, this process worked very well. Our initiation of a restorative process rather than an apology was positive; we felt heard. While this approach appears to be very new in New Zealand, it is gaining traction as an alternative to an apology for healthcare harm (Wailling, 2019).

Comfort in Palliative Care

The first 2 years of this journey saw an improvement in Peter with the hope of some limited recovery. A pragmatic medical friend suggested a potential lifespan of 10 years, it ended up as less than 4. Other than some gentle suggestions from one of his district nurses there was no suggestion of seeking any form of palliative care. To us, at the time, that seemed like just more professionals we would have to deal with so it was not explored as perhaps it could have been. I have since learnt that palliative medicine has a different focus than other forms of medicine, the acceptance of death is dealt with gradually but head-on, and hope in general is discouraged. I think it would have helped if we had that discussion in those last months. I held on to hope for recovery right up until a few days before his death when it seemed that he was suddenly classified into palliative care. I believe Peter felt the end coming months before; he began focusing on family history and began talking to people about his funeral. These are all things a palliative care researcher, Neto (2022) says are appropriate actions under palliative care. The only contact we had with the palliative system was after the rushed transport home. A nurse arrived, and left drugs for us to administer, and a 24 h support number to call. I can attest that the phone support was excellent.

Conclusion

I have three concluding statements, firstly the importance of listening, secondly a rethinking of the role of family advocates in PFCC and lastly the empowering effect of facilitating patient agency as a tool for achieving patient comfort.

Healthcare professionals at all levels of service must, even in times of stress, actively listen to their patient's concerns. This will not only reduce the physical and emotional discomfort a patient might experience in medical care but might also contribute to the prevention of treatment errors.

The importance and value of family members in maintaining vigilance and providing advocacy for their loved ones was noted in several autoethnographic studies and echoed our experience. While the focus on PCC is important, it could be argued that asking a patient to be an active partner in treatment, where that patient is traumatized by the treatment, is in direct conflict with the other tenet of PCC, patient comfort. For Peter his main concerns came down to how he felt day to day; that is to be free from suffering, to be able to have energy and strength to move, to not have fluids coming from places they should not, being able to sleep undisturbed and not to be poked, prodded, examined or needled. He did not want to be reminded constantly of the perilousness of his situation. He wanted me to mediate the information that the doctors were giving him, so he would not be overwhelmed.

Peter endured an enormous number of interventions. It is no wonder the urge to flee was so strong, no matter how impractical and unsafe; the need to return to the hospital was met with despair. Similar feelings were noted in other autoethnographies of patient experience. The Foucauldian idea of hospitals as places to keep patients away from society has relevance to our experience. The controls imposed by the hospital turn the patient into an undesirable alien, an inmate who needs to be separated from society. Conversely for inmates, home becomes a place to live by your own rules with limited surveillance facilitating greater agency and independence. Our experiment of daily release as rehabilitation nurtured the hope that Peter would return to some kind of normalcy with hope for the future. As such, it would behove health systems to consider how they can facilitate such independence and access to home by making opportunities for those families that can support hospital-at-home and actively embed activities as day release into the institutional end of the health care continuum. Even in death, home was a place of comfort where Peter chose to die after his wish to withdraw from treatment was enacted.

There is also a fourth consideration I raise but cannot offer any concluding comments, that is when to introduce palliative care. This was something that came to us only in Peter's final hours but may have been beneficial to introduce earlier, but I do not feel we experienced enough of what that could offer to have an opinion.