A Better Death

by Ranjana Srivastava

  Deciding where to die

  We’re all just walking each other home.

  Ram Dass

  EVERYONE HAD A QUESTION for Zainab. Did it hurt? How much did it hurt? Was she drowsy? How bad was her nausea? Was she better or worse since the weekend? Those questions mattered but, when I met her, the most urgent question on my mind was where she wanted to die.

  I hadn’t met her before but her usual oncologist was away and there was no time to wait. I read that she had received cancer treatment for the past two years. Recently, a drug given as part of a clinical trial had triggered a serious reaction and now she was in hospital with a host of symptoms.

  They had eased with medication but now she was very tired.

  ‘I know things are bad,’ she said quietly, after I’d introduced myself and asked how much she knew about her condition.

  I quelled the temptation to gloss over this while thinking that one of the hardest conversations to have with strangers was about their mortality. But if we were to respect her end-of-life wishes, we needed to know them.

  Zainab readily explained that she and her oncologist hadn’t expected the clinical trial to provide much benefit, but they had both been surprised by how much worse it made her feel.

  ‘Now I know I’ve tried everything,’ she said. I noted that, rather than being disappointed, she sounded at peace. Meeting such patients is always a pleasure but the most evident benefit of equanimity in these circumstances is that it allows them to move beyond the present and plan for the future.

  I knew I could ask Zainab this next question: ‘If your health continued to fail, where would you like to be?’

  ‘I’d love to be home,’ she said thoughtfully. ‘But I don’t know if it’s possible.’ It can be hard to balance desire with practicality and many days can be wasted distinguishing between the two, but I thought Zainab would come to her own conclusion.

  She told me she was widowed, retired and previously independent. In the last few months, she’d needed the support of her two sons and their families to continue to live alone. They had brought her nutritious food, taken care of her bills, and driven her to appointments. But now she needed more help, as there were days she didn’t feel like getting out of bed or needed physical help in the shower. Zainab worried about falling but her main concern was for her sons. I was touched by her consideration.

  ‘Have you thought about alternatives to home?’ I asked.

  ‘That depends on how long I have to live,’ she replied matter-of-factly, and again I was struck by her clarity of thought.

  No one likes to deliver bad news but this was a time that demanded the truth.

  ‘I’m sorry to say, weeks.’

  ‘Yes, that’s what I thought,’ Zainab nodded, absolutely unbowed, as if we were discussing a delivery date for furniture. Her resilience was stunning; I sensed it arose from a place of contemplation and acceptance.

  ‘I’ll accept hospice but I’d like to explore going home.’ She doubted that her sons could help as they’d found it confronting watching their grandmother grow thin and frail before she died but agreed with the social worker that they should be involved in the decision.

  Zainab’s prediction proved accurate. Her elder son was anxious and spoke very little. It was immediately obvious that he would not cope with his mother dying at home. The younger son confessed that, much as he’d like to, he didn’t think he could give his mother the care she deserved.

  The social worker reassured them that many families felt the same. At the same time, I was bitterly disappointed for Zainab. Part of me wished we’d never called the meeting with her sons. But Zainab surprised me yet again by praising her sons for their willingness to be involved and acknowledging the sadness of tending the dying. Deftly, she had moved to preserve sibling harmony after her death.

  Later, she told me that since she had not expected them to care for her, she didn’t feel let down. The social worker thought Zainab was one of the most stoic and measured patients she had ever met. In fact, her conduct fostered so much goodwill that her sons joined forces with some neighbours and took her home for day visits and a surprise garden party that thrilled her.

  When a hospice bed became available, Zainab went there to spend the last ten days of her life, dying faster than I had predicted. She was very grateful for the nursing care as well as the constant presence of her sons. Zainab’s ability to handle the truth, ask questions without fear and adjust her expectations played a large role in dying well.

  The question of where to die has become a modern-day dilemma. A recent survey in the UK showed that although only one per cent of cancer patients express a preference to die in hospital, more than a third do. Overall, only twenty per cent of all patients in western countries manage to die at home. Indeed, the prevalence of hospitalised dying led a newspaper headline to protest that thousands of patients were being ‘denied’ their wish to die at home. I thought this headline disregarded the complex nuances of end-of-life care while unintentionally heaping guilt on exhausted caregivers.

  Many people express an intention to die at home at a time when they are still able to manage, albeit with increasing difficulty and help from dedicated relatives. Commonly, their health worsens, their relatives can provide limited assistance, external providers can only fill some of the gap and, suddenly, remaining at home becomes impractical or unsafe.

  Being home is a visceral need for many and health professionals devote themselves to making it happen, but when once-simple activities like turning in bed, taking medications safely or fixing lunch become a challenge, the only way to get home is with round-the-clock care, which is unaffordable for the majority of people.

  If it takes a village to raise a child, it also takes one to help someone die at home.

  A dying patient requires a constant, if not continuous, presence of carers who are physically robust and have the emotional resilience to withstand the ups and downs of the dying process. There is no doubt that, even for the most prepared, this work is exhausting. The days are long and filled with concern about whether there is a right way of doing things. In a society not used to inter-generational care taking place at home, it can be anxiety-provoking for those thrust into this role. Add to this the unpredictability of how long end-of-life care may last and the challenge grows. But many loved ones wouldn’t have it any other way for they know they bring solace to the dying and consider their work significant and life-affirming.

  People with similar diagnoses can have a very different illness trajectory. A weary carer recently reflected that she had been waiting for eight months for her mother to die from a stroke that was meant to have killed her within eight hours. The daughter of a dementia patient felt sorely for her father, who contracted infections that he kept surviving despite not being given antibiotics. One of my cancer patients survived longer than the few months she had been expected to live, which plunged her barely managing husband into depression. I will never forget the case of a cognitively impaired patient on dialysis whose elderly and overwrought wife attempted suicide because she couldn’t see another way out. In all cases, family members were deeply conflicted about wanting a loved one to die rather than suffer from poor quality of life.

  Caregivers are some of the most unappreciated people in society. They brace themselves for physically hard and emotionally gruelling work, often relinquishing other priorities such as their job, social life and even their own health. The idea of duty sustains them.

  It goes without saying that there are many people who would like to do these things but simply can’t. As the population ages, many caregivers are themselves elderly, frail or ill. Frequently, my elderly dying patients are the primary carer for an elderly spouse or a disabled adult child.

  Sometimes, adult children who have fallen on hard times move back with a parent. Sometimes the arrangement is mutually beneficial and allows a terminally ill person to remain at home but, depending on circumstances, it can also add enormous stress. The growi
ng problem of alcohol and substance abuse has left more than a few of my terminally ill patients caring for young grandchildren and navigating the legal system to secure their future. I’ve met children as young as ten providing care for a seriously ill parent, but it would be impossible to expect that child to manage end-of-life care. These are all people who cannot do any more than they already are.

  We must acknowledge the discomfort and fear involved in caring for the dying. In a mobile society, we have also become removed from the day-to-day lives of our loved ones, making it difficult to provide intimate care.

  By housing our ill, disabled and elderly in institutions, we let strangers perform the difficult task of caring for them. While modern life might make it necessary to enlist help from institutions, Australian research shows that nearly half of nursing home residents receive no visitors. Loneliness, malnourishment, and emotional deprivation are common.

  Providing end-of-life care at home may not be for everyone but contemplating our own end of life must be. A society that doesn’t think about mortality struggles to know what to do when faced with the dying. We don’t just place our elderly and vulnerable in homes; we forget about them. Their deterioration makes us uncomfortable and their death reminds us of our own future selves. We end up avoiding the essential truth of our own mortality.

  There’s a widespread sense that death has become too medicalised. It’s true that even a short stint in hospital spells noise and disruption. It’s hard to get sleep and impossible to find a comfortable bed or a hot cup of tea. But amid all this, hospitals do provide – and patients appreciate – clinical expertise. There are caring nurses, vigilant doctors, continuous supervision and proper symptom relief. Social workers and chaplains impart calm confidence in the face of challenges. Psychologists address grief and volunteers offer company.

  Anyone who has cared for the dying knows that alleviating existential distress is as important as securing physical comfort. Institutions manage symptoms better than emotions, but many carers confess to being so exhausted meeting a patient’s daily needs that tapping into grief can seem like a luxury. When institutions step in to assume the physical burden, dealing with the emotion of dying seems more possible.

  Of course, hospitals are imperfect and make some awful blunders, but we shouldn’t underestimate the comfort they bring to dying patients and their loved ones. An increasingly common request from my dying patients relates to staying longer in a hospital or going to hospice. We cannot dismiss the fact that there are many people at the end of life who feel safe there.

  The question is not whether dying patients need professional support but what form it should take. Robust community palliative care and greater availability of inpatient hospice are the obvious alternatives to acute hospitals. Evidence shows that palliative care is beneficial and cost-effective but, despite this, it’s inadequately funded, sometimes misunderstood, and frequently overstretched. For palliative care to fulfil its mission, patients must be confident that it will be available when they need it. Symptoms at the end of life can change quickly and a week-long delay in response can seem like a lifetime. A good relationship with a family doctor who is available to provide end-of-life care and counsel also has a great impact on the decision to go home.

  Discussions about where to die are onerous for professionals and patients. After twenty years of experience, I know I still struggle with them. But if we want to do our best, doctors must be bold enough to broach the subject of dying and patients and loved ones must find the courage to engage. The experience of caring for a dying patient leaves an unforgettable mark on caregivers and determines how they view their own mortality. Hence, there’s a dual benefit to approaching the subject thoughtfully.

  For most of us, where we die is less important than how we die. We can ease the experience by understanding the limitations of curative medicine and recognising that the other great job of modern medicine lies in offering peace to the dying and solace to survivors.

  Getting the best care at the end of life

  If a man knows not to which port he sails, no wind is favourable.

  Seneca

  FOR CENTURIES, medicine had nothing more to offer than balms, potions and the healing touch of a physician. The philosopher Voltaire rightly remarked that the art of medicine consists of amusing the patient while nature cures the disease. A century of progress has transformed medicine unrecognisably. We are living well longer, diseases once deemed a death sentence have been controlled or eradicated, and ordinary people have greater access to information. Doctors are armed with better evidence, smarter drugs and more accurate technology. But few would argue that medicine still has a long way to go towards responding to the needs and preferences of the patient as a human being.

  A recent Australian study found that 41,000 days in hospital every year – amounting to an annual cost of over 150 million dollars – were devoted to what a range of specialists deemed to be non-beneficial care at the end of life, resulting in an average of fifteen days each patient spends in hospital and five days in intensive care. Futile treatment at the end of life is a common occurrence in many countries. In the United States, it’s estimated that five per cent of the population accounts for fifty per cent of the cost of healthcare and while the exact figures may vary, the point is that for most people living in developed countries, healthcare spending will be increasingly concentrated in the final weeks of life. And while the definition of futility is subjective, and economic truths are hard to reconcile with emotional decisions, the truth is that patients at the end of life are highly vulnerable, the decisions they are asked to make are very complex, and it’s tempting for everyone to fall into the trap of believing that more is better.

  Thirty thousand scientific journals publish over a million scientific papers every year, mostly celebrating positive studies that push another drug or intervention to the market. Only a small fraction of these studies are actually life-changing, but since it is impossible to keep up with the data, doctors mostly rely on a few experts and the pharmaceutical industry to interpret the findings. Bias, conflicts of interest and selective publishing abound in medicine. Drug companies have a vested interest in promoting the benefits, but not the risks, of drugs. Opinion leaders in medicine are frequently found to be guilty of research and publishing misconduct. These concerns go unnoticed by the general public and can appear tedious to the wider medical profession, which wants easily digestible information to treat growing numbers of patients. Consequently, it’s not hard to see how hype transcends reason.

  I am often asked about the greatest challenge in medicine. I daresay it is to empower people to have an important say in how they die. It has never been more important to ensure that proposed medical interventions are thoughtful, considered and compatible with their goals of care. Needless to say, this demands a rethink of the prevailing culture; we simply cannot make decisions about dying well without accepting our mortality.

  AT NINETY-FIVE, MY PATIENT Harold wanted only one thing: a hot cup of tea. Since his wife died, he’d been managing alone, content with sitting in his favourite armchair and sipping his tea with the radio for company. His children kept pressing him into residential care, but he wouldn’t hear of it. One day, his daughter found him slumped in his chair after suffering a stroke. He was brought to hospital, where all his family agreed that he should be allowed to die peacefully. But Harold didn’t die; instead, he came to my medical ward in a semi-conscious state.

  Thanks to evidence-based care, the outcomes for stroke patients have greatly improved. Early interventions are credited with saving lives and improving quality, but any evidence must be tailored to the needs of the individual. Protocols were never meant to be applied indiscriminately.

  Harold was disabled by his stroke. His weak side prevented him from sitting in a chair so he was mostly propped up in bed, where he intermittently dozed. His speech and swallowing were altered but there was one thing he told anyone who would listen: he was desperate
for a cup of tea.

  Passersby would sympathise before pointing to the sign above his bed warning he was at risk of aspiration, which means food or drink entering the airway instead of the stomach due to the swallowing mechanism being impaired. Aspiration can cause pneumonia, a common cause of hospitalisation and death in the elderly.

  Following the stroke protocol, the speech pathologist had tested Harold and pronounced him fit for only artificially thickened drinks and pureed foods, both of which he intensely disliked. If he wanted water, it had to be mixed with a thickener, but as anyone who has tasted thickened water knows, it’s no match for the refreshing taste of normal water. Poor Harold tried it and spat it out.

  Most reasonable people would suggest that a man in his mid-nineties should be allowed to eat and drink as he pleased, even if aspiration resulted in pneumonia or death. A cup of tea is certainly what I wanted for Harold, but I had scarcely expected the commotion this would cause.

  When patients are mostly asleep or aren’t able to express themselves fully, an assumption is made that their cognition isn’t intact and that decisions about their care need to be made by others. The speech pathologist advised Harold’s children about the danger of drinking tea and they immediately balked at the thought that, after surviving a stroke, their father could die from aspiration. The children admonished Harold not to have tea and he was mostly too tired to argue. I saw that his prognosis was poor regardless of what else happened and eventually convinced the speech pathologist of the bigger picture. But now, it was difficult for the family to budge from its position. Two of his children were sympathetic but the other two were determined to avoid any risk to Harold.