A Better Death

by Ranjana Srivastava

  The social worker helped Yasmin find an exercise group for cancer patients, which inspired her to become a qualified trainer for the organisation. Yasmin had seven good years following her diagnosis, much of it made possible by finding a purpose.

  When the initial panic of discovering an incurable illness has abated, I often find myself having conversations with my patients about work.

  A few people come to mind then, including my friend Bob, a teacher who worked with disadvantaged youth. The students assigned to him came from broken homes and backgrounds of substance abuse, intergenerational poverty and, sometimes, plain bad luck. Bob had to devise a solution to encourage each child to stay in school. He told me that sometimes it simply meant buying the child a new pair of shoes, so he wouldn’t be teased, or playing a game of basketball to diffuse anger. I was chastened by his comment that securing a child’s safety was more important than getting homework done.

  Bob’s diabetes slowly resulted in end-stage renal failure just before he turned eighty, at which point he elected not to undergo dialysis. Given months to live, he replied that this was enough time to hand over his duties to other volunteers.

  I’d always found Bob’s work challenging, but was moved by his willingness to keep working with his students even as he dealt with his own mortality. For him, dying didn’t mean giving up on life and he needed purpose to the end. His fitness had diminished but he knew that even small things like listening attentively, reducing conflict and teaching perseverance mattered. Helping children was his way of expressing gratitude for his life.

  I’d worried that the stresses of his work would diminish Bob’s capacity to cope with his own situation but I saw that helping others was Bob’s form of self-care. On days he felt flat or unmotivated, he only had to go to work to put his problem in perspective. Sometimes, being busy at work can be an excuse to avoid dealing with important matters, but not so for Bob. He worked for four months before relinquishing his badge at a fond farewell. His daughter moved in and he died peacefully at home, as he’d wanted.

  Yasmin and Bob were people who wanted to work and derived meaning from it. But many people diagnosed with a terminal illness are retired, unable or unfit to work. Among my younger, seriously ill patients have been an interstate truck-driver who didn’t have the stamina to work, a principal who could not switch to flexible hours, a machine operator who couldn’t take morphine and work safely and a chief executive who couldn’t afford to take extended sick leave. Other patients believe that they have more important priorities than working and it’s not hard to see why.

  Finally, there are people who need more rest but find themselves left with no quality of life while on a treadmill of medical interventions. A dialysis patient was exhausted by spending every day in some part of the hospital. Another young patient had severe heart failure and was tired of expecting a reversal of fortune at every hospitalisation. Amid the focus on their disease, the conversation that was missing was one about accepting mortality and defining how they wanted to live the remainder of their life. Once these patients met the palliative care team, they changed their outlook, wound down futile medical procedures, and eventually died at home.

  There is no single answer to balancing work and rest when one is diagnosed with a terminal illness – it depends on many considerations, chiefly how well someone feels. Troubling physical symptoms such as pain or fatigue make it logistically difficult to work. On the other hand, people who feel physically well and emotionally robust might choose to work, especially in a flexible environment. Occasionally, when clearly unwell patients insist on working till the very end of life, they can inconvenience their colleagues and impact their loved ones, who are denied an opportunity for closure. This is something that calls for self-awareness.

  Our work is important but it cannot disguise the existential questions that are at the heart of dying well. We must find our own meaning via contemplation and through communion with those who care about us. I have yet to meet a dying patient who grieves not working harder or keeping longer hours, but countless people have regretted compromised friendships, broken relationships and losing their bearings. We all have something to learn from those who don’t let their work define them.

  Caring for a loved one with dementia

  From caring comes courage.

  Lao Tzu

  MY FRIEND KIM AND I attended medical school together and later trained together, too. Every week during medical school we travelled long distances to reach our assigned hospitals. Such close proximity either bares differences or brings us closer. We remain good friends, although these days our children’s lives take precedence over anatomy specimens.

  I jokingly attribute my loyalty to Kim to her mother’s generosity towards me. My parents lived abroad and I had to be self-sufficient from an early age. I managed a busy university schedule, laundry, rent and bills. I had a part-time job, and never exceeded my budget, but the hardest thing was cooking for one person. I had a well-stocked library but an empty pantry.

  Kim lived at home and was looked after in the same way my parents would have looked after me. Her mother was a nurse – practical, capable, and no-nonsense. When we first met, she didn’t ask me what I ate or how I managed. Noting her daughter’s busy student life, she put the rest together. This led to her pressing a bag of food containers into my hands on many occasions when I visited. I felt self-conscious, but she had such a natural manner that the gesture felt easy and I was always grateful.

  As if this weren’t enough, on my overlapping night shifts with Kim she’d pack me dinner.

  Night shifts usually evoke images of squandered sleep and emergency dashes, but one of my enduring memories is that of Kim and I finding respite from a hectic night of work and sampling her mother’s cooking under a bright moon. Such was the measure of a woman who received nothing but silent thanks in return.

  Kim and I graduated, got older, and passed other milestones. I visited less frequently but always came away with a token of her mother’s cooking, including tubs of soup to restore me after childbirth. She never stopped being thoughtful, which is why it came as such a shock when I first heard the news that her mind might be failing her.

  Shortly afterwards, I met her mother at a wedding. Her unblemished face and slender build were recognisable, but her eyes seemed distant when she smiled at me. I watched her husband guide her protectively towards the bathroom. I’d met so many patients like her but before then I’d never imagined that someone I knew would be rapidly afflicted by dementia.

  On my occasional visits to their house, Kim’s father now took the lead role of greeting me and inviting me in. She was often asleep or resting quietly in a chair, a far cry from the bustling woman of my student days who was never far from the stovetop. She’d still ask after my children but couldn’t remember their birth order, which sounded hardly surprising considering she didn’t see them often.

  And then one day, she didn’t know who I was. Neither examining my face nor her husband’s subtle hints prompted her memory. I felt sad then, but it was her eventual failure to ply me with food that marked the end of an era.

  After the diagnosis of dementia, Kim and her father ably looked after her mother for many years. I was privileged to watch closely how Kim dealt with the challenge of a parent facing the onslaught of progressive dementia.

  Kim made it a point to visit her mother regularly even though meaningful interaction became scarce. Every week without fail, Kim drove her parents to a familiar lunch spot, recognising the consolations of a familiar ritual. The conversation didn’t flow as freely but I knew how much they looked forward to the date because Kim’s father always mentioned it when I saw him. Kim’s mother had always been proud of the doctor in the family but what really lit up her life was the presence of her daughter.

  The family had expected to care for her at home but as often happens, the reality didn’t match expectations and Kim’s mother needed residential care. By this time, she was experiencing m
ood disturbances where her apparent placidity would suddenly change to uncharacteristic aggression. There were remonstrations, accusations and pleas with inexplicable content and context. Dementia chipped away relentlessly at her personality, wringing out the patience, sweetness and goodwill that she was loved for. The dramatic changes were confronting, but Kim’s allegiance never wavered and she continued to show up every week to see her mother. Many of those times it must have felt as if her mother had been replaced by a stranger, but Kim strived to make the best of the situation and never turned away.

  As doctors, we had both seen families embarrassed or distressed by the unpredictable behaviour of dementia sufferers and understood why some relatives couldn’t bear to visit. What I most admired about Kim was her unspoken determination to separate the person from the disease and keep up her visits through mounting heartache.

  Then suddenly, as if this tragedy wasn’t enough, Kim’s mother lost her capacity to speak. In one of the most devastating turns of fate, she would stay alive for many years without being able to communicate. She grew passive and more pliant. Sometimes, such obvious slowing hastens demise but not this time. Kim’s mother lived in this unrecognisable state for years, so with a knot in my stomach, I watched in awe as Kim navigated the most grievous of circumstances. Two things stayed in my mind from the experience.

  When an ailing parent enters residential care, there is an unspoken expectation that family members will take turns to provide additional care and presence beyond that of paid carers. While we might expect facilities to cater for all our loved ones’ needs, the reality is that this doesn’t happen. Even when basic requirements such as food, hygiene and safety are well met, most residents spend their days and nights alone.

  Kim understood the limitations of her mother’s facility and also knew that her mother was among the most vulnerable of patients, unable to participate in any communal activities or be entertained by volunteers. In fact, there was little anyone could do except sit quietly and be a familiar presence. In an era when we panic at the thought of momentary quiet, sitting for hours with a parent who has lost the capacity for self-expression must be one of the hardest things to bear, yet Kim did it unquestioningly. I marvelled that this was never out of obligation but an innate confidence that it was how she wished to remember her final acts towards her mother.

  Sometimes, I’d tell Kim about warring families I met at work whom I wondered how to help. She told me that she had just one creed: to care for her mother to the best of her capacity and focus on her own actions. I saw this when she brought in small gifts such as a single flower and took her young children to visit their grandmother every week. She wanted them to have a memory of her even though it wasn’t clear if she recognised them.

  I always thought this to be Kim’s finest achievement – her ability to do what was right without worrying about what others thought actually won her the freedom from the disagreements that can rock families. As Oscar Wilde said, ‘To give and not expect return, that is what lies at the heart of love.’

  Kim’s father spent every day at his wife’s bedside and dedicated himself to her care. Still youthful and interested in the world, this was an enormous undertaking but one he performed with grace and devotion. But he also longed for the spouse he no longer had. Kim’s second, and to my mind even trickier balancing act, was to not judge her father for wanting another companion. Not only this, she also stood by him as he entered another relationship. She must have felt conflicted, but again, she had a mature grasp of essential human needs. His choices were not her battle to fight. Instead, she focused on what she could influence, a kind and understanding relationship with her father.

  Kim’s mother died quietly some years ago. Her funeral was small and private, a remembrance of her vitality and relief at her passing. For me, her death meant a further pulling away from a part of my youth that had been illuminated by her generosity.

  Some years have passed since her death and what strikes me is Kim’s equanimity, which I attribute to her conduct during the troubled times. Kim always says that she wasn’t heroic or extraordinary; instead, she reconciled herself to the truth of her mother’s illness, defined what she could control, and fulfilled her duties. Accepting that there was more than one way of seeing a situation allowed her to avoid conflict and stay calm and poised.

  Kim was no more born with these traits than the rest of us, but her mother’s dementia forced her to contend with new ideas. Kim was determined to live wisely and be a role model to her children. She got there by being true to herself and, in the process, taught me an unforgettable lesson in how to behave honourably towards the dying.

  Helping our loved ones die comfortably

  Ever has it been that love knows not its own depth until the hour of separation.

  Khalil Gibran

  THERE WAS A COMPLAINT brewing and the nurse wanted me to nip it in the bud, so on a weekend morning I found myself sitting down with Tara, the granddaughter of an elderly man brought from a nursing home with pneumonia.

  Tara looked about thirty. Her grandfather was one hundred years old. It happens once or twice a year but meeting a centenarian never fails to trigger my awe as I wonder about all the things packed into that lifetime.

  Tara looked tired, with rings around her eyes. Her crumpled clothes suggested she’d spent the night sitting up with her grandfather. This was no easy undertaking for anyone and I was touched by her consideration. Her grandfather looked semi-conscious. His breaths came slowly but his expression was peaceful, and he looked comfortably propped up on two pillows.

  But Tara declared that the night nurse had been ‘terrible’ and not administered enough morphine. I was disheartened because no relative should have to worry about inadequate care at the end of life.

  ‘We certainly don’t want him in pain,’ I reassured her. ‘Is he comfortable right now?’

  ‘Yes, but I’m worried about tonight if he has the same nurse.’

  Pain relief should be taken seriously, whether after a fall, a fracture, or at the end of life.

  I was puzzled since I knew the nurse to be experienced and thought she would have been my pick to care for a dying patient. Reassuring Tara that I’d handle the matter, I was wondering what to do next when the nurse found me. She didn’t know about the complaint but appeared upset and asked me for advice about an overnight encounter.

  She related the story of an unconscious elderly man whose granddaughter wanted him to have more morphine when other charted medications had been more appropriate. However, the granddaughter had accused her of being uncaring, which had shaken her.

  ‘Why do you think Tara was upset?’ I gently enquired.

  ‘She wanted things over quickly. I know how she felt because I sat with my mother recently and thought her death would never come. But I’d never deprive someone of pain relief.’

  When I checked the charts, I saw that the patient had received morphine and other drugs at appropriate intervals, and by other reports, too, had remained comfortable. He died later that day and I called Tara afterwards to express my condolences and arrange a meeting to discuss her complaint, but she was no longer interested.

  ‘The nurse was probably right. I was tired and I don’t want to think about it anymore.’

  Tara may have moved on but I saw the toll the complaint took on the nurse, whose confidence was shaken for months afterwards. A claim of negligence at the end of life is a serious personal and professional matter, but the real problem wasn’t the lack of morphine. It was the fact that Tara had never seen anyone close to her die and didn’t know how to react. This is an increasingly common problem encountered by professionals.

  The very next week, however, there was a genuinely troubling complaint from two siblings who had been at the bedside of their terminally ill father for two days. Their father’s consciousness had deteriorated but the intended morphine infusion was never started due to a lack of communication and poor follow-up over a holiday weekend.

/>   I began with an apology for their experience and assured them that appropriate palliation shouldn’t have to wait. The infusion was started, an intern and a junior nurse were reminded of their duty to escalate matters beyond their expertise and the siblings were satisfied. In fact, they emphasised their motivation to help other patients avoid a similar ordeal. We were all impressed by their grace and forbearance.

  These two accounts showed me that terminal care can suffer due to reasons of expectation, understanding and communication. We can be firm advocates for the dying but also accept that we may not always be right. The death of a loved one is one of life’s most stressful occasions and bereavement triggers complex emotions. Managing our own emotions and accepting the reality of death is often the key to allowing others to die well.

  Tara’s grandfather was actually receiving good end-of-life care, but she needed a better explanation of the dying process. The siblings were right to demand better care and not accept the status quo. It can be difficult for loved ones to speak up and healthcare systems must be better equipped to anticipate barriers to good end-of-life care.

  FAMILIARISING OURSELVES with palliative care services early in the course of a terminal illness is one way to help ourselves and our loved ones die comfortably. Palliative care does not hasten death; it troubleshoots symptoms and elevates emotional well-being. It improves the quality of remaining life and the experience of dying and in some cases, meticulous palliative care even prolongs life. Research shows that experiencing a good death reduces the immediate anxiety and stress of family members and influences their view of their own mortality.

  Obstacles to palliative care include a lack of access but also a perception that it means giving up. Where palliative care is regarded as a last-ditch measure, people come to it too late. But when we accept the notion that we are mortal and permit ourselves to focus on what matters, palliative care can make a difference. I’d be the first to say that palliative care cannot fulfil every expectation of every patient but if we want to die well, we must begin from a place of honesty and reflection and believe that dying well is as important as living well.