A Better Death Read online

Sometimes succinct answers are both necessary and useful. They can feel cruel, but they are also my insurance: when a patient says, ‘I had no idea’, I know that isn’t completely true.

  However, in Lucy’s case numerous such exchanges over the years had lulled us into a sense of security, which no one questioned as being inevitably temporary. The beneficiary was a wife and mother who welcomed the reprieve granted her at every visit. Why begrudge her the time in which she had seen her children grow? Why cloud their holidays with dire predictions? She was the good news story no one wanted to end.

  I had told her that she didn’t need scans at her most recent visit, but her family doctor arranged them to be helpful. Now, Lucy handed over the films and I silently lined up the images, having learnt long ago how much patients disliked small talk during this ritual. I fleetingly wished I’d had prior notice of the scans, but Lucy looked so well that I assumed there was nothing to find.

  Suddenly, my heart quickened at the sight of unexpected new disease staring back at me. Blinking my eyes and peering more closely didn’t change that. The changes were small, but definitely present and involved a vital organ, her liver. They were a harbinger of the troubles that lay ahead, the troubles that we’d pushed to the back of our mind for so many years.

  The first news of disease progression is devastating for doctors and patients. The floor shifted under me.

  ‘All good, doctor?’ Her tone was typically soft and respectful.

  Many times, in the past, I had turned back to face her with a reassuring smile and a vigorous nod, a sign that things were stable. But in the split second before I turned around this time, I knew that I held the knowledge that would irretrievably change her life. From here on, things would never be the same. Gone were the relaxed appointments and the easy banter about family life and school holidays; in their place a revolving door of fears and concerns. A literal pronouncement that her cancer had spread would shatter her hopes and convince her that she was imminently dying. Bland advice that there wasn’t much to say would be deceptive. I tensed with the task of arranging my words and expression with extra care.

  I sat down so Lucy and I were eye to eye.

  ‘Actually, there are some new changes in the liver,’ I began, with a calm I didn’t feel. Her usually amiable expression faded as I continued, ‘They represent cancer.’ This felt like a needless assault, but it was even more unbearable when patients sighed, ‘Thank god they’re only spots.’ Every oncologist learns this the hard way. ‘I know this is disappointing but it’s very small progression and there are many promising drugs.’

  I stopped there, knowing the rest would go unheard. At the inevitable progression of their cancer, some patients weep, others are bewildered and yet others slam the desk in anger. She sat absolutely still and, much as I yearned to stifle the silence with my own noisy plans, I took my cue from her. My silence was an appropriate homage to a lull that would never return.

  Her face crumpled with disappointment, she asked to see her scans and I pointed out the silent invaders. She asked if she must start the new drug today and I said no. She asked if, despite my disappointment, I would still be her doctor and at this, my reserve crumbled.

  ‘I’m not disappointed in you,’ I protested, tears now stinging the back of my eyes. ‘I’m just sorry it came back.’

  Her phone rang, and she said apologetically, ‘That’s my mum, she always checks in.’

  Lucy’s mother attended the appointments her husband couldn’t, so she’d never be alone. Today, Lucy had felt so well that she’d come by herself. This was a tight-knit family and I hated to imagine the ripple effect of my pronouncement. I made myself think of the fact that the children had strong supports beyond their mother.

  ‘My mind feels wobbly,’ she said softly. I knew why. Inside, she was already thinking a thousand things – whether she had taken her medication faithfully for all those years, what about that weekend she forgot, if that pain she suffered last month was a sign, what would she tell her mother, what if the new drug didn’t work, how would the children react, how much should she tell them, would she grow suddenly unwell now, would there be time to finish remaining things?

  I imagine I’d be the same and there seemed to be nothing remotely comforting to say, so I told her what I thought. ‘I will look after you to the best of my ability.’

  If Lucy was unsettled, she didn’t show it outwardly, instead leaving the room politely and leaving me with my thoughts.

  Did she sink into her car seat and cry or did she plug her emotions to drive straight home? Did she call her mum back or temporarily spare her the sorrow? Did her husband take the day off or save up precious sick leave? And what did she do that night – feign normality at the dinner table or tell her children the truth? That afternoon, as I calculated the dose of her next chemotherapy, striving to give her all the benefit minus the worst side effects, I was also thinking of the countless calculations she would inflict on herself about how long she had left to live.

  I couldn’t help worrying if she’d lost a little faith in me because I didn’t order the scan. Did she consider me blasé about her illness? Did she fear that I’d let her down again? I tried not to let these worries discompose me, remembering that they’re common to doctors whose work knits close bonds with their patients.

  After she left, I saw other patients. Some were straightforward; others needed encouragement. Some were experiencing hiccups in their treatment and required interventions, from minor troubleshooting to a perhaps unexpected conversation about a poor prognosis. Every patient needed attention, kindness and, occasionally, a curtailing of my impatience.

  But in a corner of my mind, I kept thinking that I couldn’t leave any stone unturned for Lucy. So, I vexed over drugs, trials and the literature. In between, I dreaded meeting her elderly mother and shuddered at the thought of spotting her children in the waiting room. My mind would run ahead of itself and picture her in hospice. I’d hastily rewind it and imagine still undiscovered drugs keeping her well indefinitely. And even as all these sentiments jostled for attention, I reminded myself that I’d been here before and would be here again. These occurrences are an oncologist’s burden and privilege. It’s why some doctors say they could never do this job – and others can’t imagine doing anything else.

  I kept thinking of how Monday mornings are the hardest, in spite of the fact that I’ve never considered my work a chore. The respite of a weekend is erased the moment I walk into the ward to meet patients admitted to hospital over the weekend. Monday morning brings me face to face with patients whose anxieties have swelled over an entire weekend and who are convinced that they are in the worst possible situation. Some are right – people know enough to avoid coming to hospital on the weekend unless they are seriously unwell – but many have smaller problems that can be treated with antibiotics, painkillers or plain reassurance.

  Unlike the patients I see in my clinic, many of the ward patients are new to me. I might later inherit their care or learn they already have an oncologist at a different hospital. Other doctors might have promised them that come Monday everything will be clearer but often it just isn’t so. Good medicine takes time, though the labyrinthine hospital system can drown even the most capable patients in a sea of vulnerability.

  On the rounds, my team gives news of improvement, deterioration and, occasionally, impending death. I often rue that there is no chance for us to ease into work – one of my routine tasks on Mondays is to tell total strangers that I’m an oncologist and they have cancer. There is no ideal time for it but starting the week like this is to rush headlong into emotions that got parked for the weekend. It’s also a powerful reminder of the necessity of treating life with respect and people with consideration.

  The stories of my patients are confronting at first sight. A common theme is a lack of acceptance of death as a corollary of life. In fact, tackling this hurdle uses up most of my time. There are many reasons for this: the reticence of doctors and the relucta
nce of patients to discuss dying and the attitude in modern society that every problem has an instant solution and every ailment a quick fix.

  Denial of death is so common that many of my consultations with the sickest patients hinge on broaching the notion that we are all mortal. Interns and junior doctors may never have heard such a conversation. I prepare them by insisting that we can entertain other things – the latest blockbuster therapy, the miracle cure on the evening news, the neighbour whose disease simply vanished – but we must never forget to bring our patients back to the truth: that we have limited lives and it is for us to decide how best to spend our time. This, I believe, is the hardest part of all medicine.

  The belief that a conversation is needed doesn’t make it easier to have. If it were so, all the great lectures, compelling stories and grassroots movements about dying well would have worked by now. Ordering another test or prescribing a last-ditch drug requires the mere tap of a keyboard; a conversation about something as significant as mortality takes space and time – and hence money – and there’s always the risk of alienating a patient. No one objects to the doctor who orders an extra test; complaints abound about those who declare there is no treatment left to give.

  Patients are willing to put up with a lot but the longer I’ve been a doctor the more I realise that to be a doctor is to care about much more than organs and drugs. Indeed, the burst of information technology has set unprecedented amounts of scientific literature, research and innovation at our feet, more than any doctor can possibly grapple with. Where there is more and more data, there seems less and less heart, but what has never changed is the requirement for a doctor to approach the human condition with a gentle touch.

  Especially when it comes to dying, what we ask of our doctors isn’t just professional confidence but also kindness, comfort and consolation. We long to meet someone who has mulled over the idea of mortality and understands what it is like to be cloaked in a set of desires, fears and hopes. We want to be cared for by someone who will take the time to listen to us, advise us but ultimately empower us to make our own decisions. Patients are best served by such doctors – and it’s the duty of all of medicine to aspire to this ambitious but by no means impossible task.

  My most onerous responsibility as a doctor is helping my patients come to terms with dying. Who knows, I ponder, one day I might be like them – plaintive and puzzled, inwardly fearful that I might be dying but not daring to think any further because of the sheer thought, work and heartache involved. Our mortality is guaranteed but, sadly, conversations about dying aren’t. In fact, in an era of unprecedented medical progress where interventions can easily spill into futile medical care which is individually painful and societally wasteful, it’s never been more important to think about how we want to die. But if we treat the subject of death as insurmountable, we risk depriving ourselves of a considered life and a peaceful death. We’re born with many instincts and reflexes, but we have to develop the ones that tell us how to live and die well. That’s okay, because we humans have a great capacity to learn from others.

  The final consult of the day was with the son of a patient, who burst into tears as he handed me an envelope. ‘I promised myself I wouldn’t cry, but then I saw you.’

  ‘That’s my job,’ I shrugged, half-despondently, making him laugh.

  His card thanked me for a curious thing: ‘for worrying about Dad, but not always in front of him’. It applauded my whole team for ‘showing compassion even when we all knew you couldn’t save him’. It wouldn’t have struck me to do otherwise, but his words were like raindrops to parched earth. I knew how much the writer’s elderly father had wanted to keep on living – sometimes, we measure the strength of a doctor–patient relationship by a patient’s longevity but that’s unfair to everyone. Trust, empathy and communication rank highly too. When dealing with the challenges of the dying, the antidote to our own vulnerability lies in discovering meaningful ways to help them.

  Knowing ourselves is a very good start, but to die well, we must articulate our thoughts and make purposeful decisions towards achieving a better death. This has never been more important: I’ve lost count of the patients and families who are plunged into needless grief because they’re unable to navigate increasingly complex healthcare systems that have an impetus to push for more when less might be better.

  Our ancestors were acutely aware of the ubiquity of death. Babies died; women succumbed to childbirth; infections, poverty, starvation and accidents wantonly destroyed lives.

  ‘Death is as sure for that which is born as birth for that which is dead. Therefore, grieve not for what is inevitable,’ exhorts the Bhagavad Gita, an ancient Hindu text.

  ‘Let us eat and drink because tomorrow we die,’ counsels the Book of Isaiah in the Old Testament.

  On a humbler note, I grew up listening to my elderly Indian relatives talk openly about a time they wouldn’t live to see. There was no discernible judgment, desire or angst in their voices – they talked about death as we might about sunrise or the ocean tides, each with an inevitability of its own.

  Unlike past eras, death in modern times is rarely sudden or unexpected. We’re living longer, healthier lives and, compared to past generations when it was quite common to lose a parent or a grandparent at a young age, many generations can now expect to grow old together. Few things bring my oldest patients more pride than counting the number of grandchildren and great-grandchildren in their lives. Their elders would have been lucky to see their own child grow up.

  Today, infection control, better housing and sanitation, improved literacy, prevention programs, and advances in medical technology have made it possible for us to forget about death. We think we’ll deal with it another time – next month or next year, when we’ve negotiated retirement, when the youngest child has left home, or when something actually goes wrong. After all, the world’s full of people who are alive, isn’t it?

  Alas, in doing so, we fail to invest our lives with the thought and meaning they deserve before circumstances force us into this reckoning. I see this frequently when I talk to patients about their limited life expectancy and ask what’s important to them in their remaining days. They look at me with confusion and reply with utter sincerity, ‘I don’t know; I never thought this would happen to me.’

  In death, I’ve seen awe-inspiring courage, indescribable love, remarkable sacrifice, insurmountable anger and genuine bewilderment. A good death can be hard to define because it means different things to different people, but most of us have an intuitive sense of it when we see it. And while all death stings, there is great consolation to be found in a peaceful death, while its opposite can leave long-lasting lament and soul-searching.

  ‘Even death is not to be feared by those who have lived wisely’, Lord Buddha said. The conversations, prayers and meditations of our elders contained many reminders of our mortality and the importance of leading a simple and meaningful life. Global progress has gradually led us away from such active considerations, making our lives fast and far-flung and our relationships transactional. The thrilling march of medicine has tamed diseases once thought incurable and brought both quantity and quality to millions of lives, but in the process has sheltered us from the idea that our lives are ultimately limited. The vast majority of deaths in the western world now take place in an institution, but medical education teaches doctors very little about the twilight of life and end-of-life care.

  An important part of being an oncologist is caring about and for people who are dying. Consequently, I’ve gained a foundation of medical knowledge and practical experience with which to help others navigate death. There may be no joy in tending the dying but there is something else. There is perspective. Doctors who are drawn to my line of work learn about the impermanence of health and the vicissitudes of life. We see how, even inside a failing body, a spirit can still mend, bit by bit. We witness the transformative effect of a loving family. We see how kindness moves mountains like no medici
ne can. Caring deeply for patients makes us confront our limitations and deal with our own mortal fears. Every day we learn what really matters.

  Behind me are photographs of my three children, whose happy faces greet me whenever I turn around to find a form. They are beginning to understand what my work entails but mostly, their days are filled with innocence and play as any parent would wish. My children ground me and remind me of my good fortune. But what I find most touching is that the patients just love them. I can’t count the number of times their moist eyes have swung from me to the photographs behind me, as if to say, ‘If you have children, you must know something about how I feel’. It is at once a formidable and magnificent expectation to rise to.

  Modern life is awash with tips on how to live well, reminding us to practise gratitude, meditate, discover meaning and ponder our legacy. Nothing underlines the importance of these things as dwelling on the lives of others and, in turn, our own. For it’s not only other people who are dying; we are all dying. To pretend otherwise is naive. But to learn from each other may be the wisest thing we can do with our lives. This is the challenge and consolation that bookends many of my days.

  THIS IS NOT A book I could have contemplated, let alone written, at the beginning of my career. But years of sharing the journey with all kinds of patients with nearly every mentionable illness has equipped me with two beliefs. One, it is possible to die well. Two, doctors owe it to their patients to show them how.

  This is not a book that ignores the tremendous and unprecedented advances of science. This is not a book about giving up or giving in. There is a Buddhist proverb that when the student is ready, the master appears. I have found this to be true for some of my most memorable patients, who were leading ordinary lives until they had to contend with their mortality. They didn’t have a textbook to help them but plumbed their own depths to decide how to tackle the journey. Similarly, I have met countless carers who would never have imagined being charged with the responsibility of helping a loved one die and hardly thought themselves equal to the task but who rose admirably to the occasion.