A Better Death Read online

  And this is the message I want to bring you in this book. I hope this can be a source of inspiration and comfort for one of the most important events of your life.

  Part 1

  The values of those who die well

  Our life is what our thoughts make it.

  Marcus Aurelius

  MARTIN LUTHER, a 16th century theologian, said that in life every man must do two things alone – his own believing and his own dying. Over the years, I’ve discovered what this really means. People who die well tend to hold certain values and attributes that inform and enrich their whole lives. Compassion, empathy, forgiveness, self-worth, equanimity, acceptance and resilience are all important. We may not have them in equal measure, but we can strive to cultivate them and use them in our interactions.

  Amid the turmoil of tackling their illness, my most memorable patients have demonstrated these qualities to ease their own experience and that of those supporting them – their friends and loved ones. They would be proud to know that they left a legacy.

  Believing

  The most difficult thing in life is to know yourself.

  Thales

  DYING GIVES RISE TO deep emotions – to sort through and prioritise them is a monumental task that needs genuine attention and quiet space for reflection, planning, mourning, celebration and consolation. But the irony of modern medicine is that amid all that it seeks to do to the patient, it doesn’t really make room for the person.

  Simply observing my patients shows me the directions they are impossibly tugged in. Tracking appointments, having tests, ensuring providers communicate, planning transport, finding help, grappling with bills, negotiating work, explaining their illness to others, and avoiding stressful well-wishers – these are just the tasks I hear about, but I imagine the list is never-ending. Indeed, it’s reasonable to ask: where’s the time for hapless patients to slip out of their exhausting routine and ponder life and legacy?

  For a striking number of people, this never happens. I’m amazed by the number of people who say that they have never thought about their death, even in the abstract. Not all of them are young; many are middle-aged and well beyond. But I also regularly meet those who’ve handled the subject of death admirably in embodiment of the Talmudic quote, ‘Live well, it’s the greatest revenge.’

  Although our death is certain, I imagine we’d rather suspend belief. Every day at work I encounter fixed views that the solution to any illness is but one prescription away and that death can be forestalled by the right idea. The media has a large role to play in this, peppering unrealistic stories with terms like ‘game-changer’, ‘breakthrough’ and ‘innovative’. Social media compresses them into a format that is digestible but ill-explained. The stories often involve patients who were deemed beyond salvage and laud doctors for rescuing them. Such events are actually rare, but they affect how all of us think about the reach of medicine.

  Recently I read a report about a young woman with a rare and aggressive cancer – one most oncologists have never even heard of – who persuaded her doctor to give her a new drug that had not previously been known to work for her disease. She had endured many painful and unsuccessful treatments for years but immediately after taking the new drug, her disease melted away, permitting her to resume work and heavy workouts at the gym.

  Although the details were verifiably true, I thought that what matched the patient’s remarkable recovery was her oncologist’s sanguine observation.

  Instead of heralding a miracle, he said he was ‘befuddled’ by the result, pledging to devote his life to finding out why his patient was an outlier. I wish more doctors would adopt such a balanced approach.

  I once met a patient who was expected to die from cancer-related liver failure. Palliative care was called but he refused to talk to anyone who even mentioned end-of-life care. He wanted more chemotherapy, which was unsafe as it could precipitate massive bleeding or a coma, but somehow he twisted an oncologist’s arm to prescribe chemotherapy. He died in his chemotherapy chair while receiving treatment, an awful sight for everyone who was present. At the mortality audit, every provider felt contrite and yet everyone knew that it wasn’t the first or last time such a thing had occurred.

  While dying of cancer is a common fear, the truth is that we are far more likely to be diagnosed with one or more chronic diseases that have no cure and lead to gradual deterioration and death. These diseases include diabetes, cardiovascular disease, chronic kidney failure, lung disease, dementia and mental illness and we tend to underestimate their threat. Nine out of ten Australians over the age of sixty-five have at least one chronic disease and seventy-five per cent of all deaths occur due to a chronic disease. Similar figures exist in many developed countries and developing countries are rapidly catching up with the so-called ‘lifestyle’ diseases.

  To understand why deliberate decision-making in healthcare is more important than ever, it’s important to explain the difference between acute and chronic disease.

  An acute condition like appendicitis or pneumonia makes people suddenly ill. Here, modern medicine has the capacity to unleash its power and restore health. A painful hernia, a broken bone or a car accident are other examples. When otherwise fit individuals survive these conditions, they can usually put the experience behind them. They don’t need to take regular medication or attend long-term check-ups.

  Chronic disease behaves differently. As our organs age, they become less resilient and enter a phase of gradual decline. Added insults such as obesity, lack of fitness, smoking and excessive drinking accelerate the decline. Changes to diet and lifestyle can slow the deterioration but not completely reverse it.

  Broadly, our quest is to live well and benefit from the discoveries of modern medicine without being held hostage to medical interventions that make life miserable, but this can easily go wrong.

  I was recently reminded of this when I met a cognitively impaired man whose wife was distressed about him having dialysis three days each week. By the time he travelled in and out of dialysis, he was exhausted and often confused. He spent the days in between dialysis recovering only to go back to the same situation.

  Everyone agreed that he had a poor quality of life but his inability to articulate what he wanted to do when his decade-long renal failure came to a head meant that he entered dialysis by default. His cognition was good enough to make decisions about what to wear or eat but he lacked the capacity to weigh up the consequences of having treatment versus declining it. When there is doubt, medicine frequently errs on the side of overtreatment. Intuitively, no one wants to end up like that man, but the balance between hope and reality is genuinely hard to strike and for people who don’t consider their mortality, the task can be next to impossible. This is why in order to live well we have to start believing that we are mortal. This belief is the first step towards making informed decisions at critical times.

  One of the great privileges of being an oncologist is seeing how good some people are at this. Amid the turmoil of a life-threatening illness, they somehow make room for calm discussion, acceptance, forgiveness and generosity that eases their own experience of dying and imparts strength to others. We think of them as resilient but, in my view, their resilience is a product of their other attributes. They are resilient because they have a bigger view of life.

  As a doctor, I can provide much information to my patients that is backed by evidence and research. Medicine still doesn’t have all the answers, but it has more answers than it used to. There are thousands of protocols to manage disease and good advice on how to manage symptoms at the end of life. The fluid world of information makes it easy to obtain a professional opinion via the touch of a keyboard.

  But there is no protocol for how to help patients reconcile with their mortality. Here, doctors must listen closely, tread carefully and plumb the depths of their own beliefs. They must interrogate their own conscience, examine their own biases, and decide how much or how little to give a patient.

/>   Doctors don’t know how to broach death with their patients because the emphasis of medicine is on sustaining life. Doctors fear death as much as their patients do; perhaps even more because of what they know. And ultimately, doctors humbly recognise that their thoughts on what constitutes a meaningful life and how to die well are just that: no more or less valid than those of the next person.

  Sometimes I fear that a career in oncology has been prematurely ageing but I hasten to add that it has introduced me to a very satisfying world of patient care. It has also made me engage deeply with what dying well should mean.

  First of all, it’s hard to contemplate dying without some basic information. Amid the practical things, we should want to know what to expect. Understanding that there are individual variations, what is known about the natural course of our illness? How would aggressive management with its inevitable side effects help in contrast to limited intervention whose aim might be to keep us comfortable? What impact would certain treatments have on the quantity versus quality of life? Some treatments improve both, many don’t. We know that many people, especially as they grow older, prioritise independence over prolongation of life. Access to some basic information influences all other important decisions.

  The human body is complicated and the process of navigating the healthcare system keeps getting more and more complex. Expert advice is crucial, but one should not be a slave to it, looking to include the counsel of family and friends who have known us as a person first and a patient later. We owe the dying our considered thoughts rather than reflexive responses, which often have to do with chasing miracles. Finally, we should welcome advice from nurses, social workers, allied health professionals and chaplains who usually stay in the background but who can help us live well in ways that are not always apparent to doctors.

  More philosophically, we should constantly take stock of the things that bring us pleasure and satisfaction and prioritise them. Most people at the end of life simply don’t have the energy to indulge every passion and passing interest. Those who know which pleasures to sacrifice and which to hold on to are often the ones who enjoy the quality of life that proves elusive for so many others. For some of my patients, the ability to read is important. For others, it’s living independently, enjoying their garden, or spending time with their children. Recognising what’s important to us brings us a step closer to the goal.

  We need to know that even the most stoic among us can be ready to die and still be afraid. I commonly encounter such patients on rounds. Some people fear physical experiences like pain, nausea and fatigue. Others are perplexed by emotions like regret, conflict or guilt. Still others find it hard to put a finger on what they are feeling. Seeking help to identify what bothers us and what we can do about it is a sign of maturity.

  It isn’t easy to contemplate our presence being erased from the world. There’s always something else that needs taking care of. Parents want to see their children grow up; the builder wants to complete the house; grandparents want to see another grandchild born. However ordinary we think our lives to be, most of us can find some incentive to keep living.

  As onlookers, we must discover sympathy for those who cannot bear to leave the world, but also develop the tools to do better when our time comes. To do justice to the final act of our life, we should want to act with poise and dignity – for ourselves, those we love, and those who love us so deeply that they cannot imagine life without us.

  I watch the most profound acts at the end of life and yet I honestly can’t say how many I will be able to replicate in my own life. We can’t predict whether we will live up to our high expectations, but we should know that, through deliberate thought and conscious action, it is possible to achieve a better death.

  Acceptance

  We cannot live better than in seeking to become better.

  Socrates

  SALLY WAS JUST FORTY when she was diagnosed with advanced cancer. She had four children, the youngest just seven. She’d consulted her doctor to report a persistent stitch in her side after a family holiday, wondering if she’d hiked too vigorously. Instead, the doctor discovered something far more serious.

  I wouldn’t have met Sally except for her disastrous first experience with another doctor. As anyone who has waited for a medical appointment knows, the process of getting to the actual visit can be quite involved. Initially, Sally saw her GP who agreed with her hunch and prescribed anti-inflammatories. But when the pain didn’t subside, Sally had tests that raised the suspicion of cancer. These tests prompted others over the next two weeks and then it was another wait for an appointment with an oncologist.

  I can’t imagine how heavy those weeks of waiting must have felt, with each result striking a blow, but somehow, Sally and her husband, John, managed to maintain a normal family life while they waited to see what the oncologist would say.

  On the day of their appointment, they noted a very busy clinic and waited patiently all afternoon to find out what it meant to have advanced cancer. Afternoon faded into evening and some doctors left. Finally, her name was called out by the only remaining person, a trainee doctor. He looked tired and frazzled and his pager kept beeping. The couple ignored the interruptions and concentrated on the conversation. What happened next would be etched in their memory.

  The trainee started by telling Sally outright that she had incurable cancer with a dismal prognosis. However, she could try chemotherapy if she wanted.

  ‘I sat there, completely frozen,’ she later told me. ‘He behaved like an automaton – there was no sympathy in his voice, no sense of the tragedy we’d been hit with.’

  ‘What does this mean?’ John dared to ask, when he found his voice.

  What they heard was that Sally needed to start planning to die.

  ‘I laughed at him in disbelief,’ Sally recalled. ‘I laughed and said, “I have four children. I’ll sell my house and everything I own in order to live for them.”’

  The trainee looked at them tiredly as if he had heard it all before.

  Night had fallen by the time Sally and John walked out hand in hand. They had gone to their first oncology appointment with hope, but it had proved too upsetting for words. They had thought they’d be discussing treatment logistics on the way home, but instead they ended up debating how to move to another country to have good treatment. This panic felt so foreign to the usually calm couple that they called a nurse they had briefly met at the hospital to share their consternation. She convinced them to see someone else before deciding. Sally reluctantly agreed, and I had a cancellation, which is how we met.

  I have seen many reactions to a cancer diagnosis – patients who are stunned, hyperventilating, sobbing, or occasionally even close to collapse, but what struck me from the minute she walked in was Sally’s poise. I knew from reading her history that she had no risk factors for cancer. There was no family history, she herself was young and fit, and had never been in hospital after childbirth. That a stitch in the side turned out to be cancer was bad enough but her experience with the first oncologist had been awful.

  Many patients might justifiably start by flagging that experience as a warning to the next doctor, but I’d never have known from Sally’s expression that she had met an oncologist the previous day. Her face was wiped clear of any grievance, but when I began with the apology she deserved, her eyes clouded.

  ‘It was late,’ she said, peaceably accounting for the unacceptable behaviour. I could see John trying hard to control his emotions.

  ‘I want to forget about that incident and find out everything you know,’ Sally continued.

  Slowly, I told her the facts. Her cancer was advanced and inoperable. There was nothing she could have done to prevent it and in fact she was part of a growing trend of relatively young people developing cancer. There were treatments to shrink and stabilise her disease. If she benefited from all the available treatments, her life expectancy was between two and three years, and I would do my best to help her get there. My to
ngue felt stuck at each pronouncement, but I continued because I respected her need to know and understood how important mutual trust was to a therapeutic relationship between us.

  Sally and John absorbed the news quietly. I expected her to cry, protest or finally unleash her anger; instead, all she said was, ‘Okay, what do I do next?’ Much as doctors welcome our job being made easier, I was taken aback by her composed reaction. Patients rarely behaved like this, especially those with a very young family and great responsibility on their shoulders.

  My first reaction was to wonder if she had somehow misunderstood the gravity of her situation or was concealing her true feelings but realised that neither seemed the case. People twice her age would be rattled by lesser tragedies, but Sally really did turn out to be the calm, collected woman of my first impressions. And since we were roughly the same age, I took a special interest in her journey that seemed to me like a mother’s worst nightmare come alive.

  Good news was around the corner. Sally had a great initial response, which buoyed us all. Childlike, I hoped it would last forever, although experience told me otherwise.

  When thinking about what the best care means, doctors are taught to ask themselves this ‘surprise question’ about patients. ‘If the patient were to die in the next twelve months, would I be surprised?’ The answer is remarkably accurate in predicting survival. While every patient is unique, and every doctor has a different slant on the same facts, this question encourages doctors to think about which interventions are still helping a person with a limited prognosis. With a heavy heart and feeling treacherous, when I applied the surprise question to Sally, I hoped ‘Yes’ but answered ‘No’. There was the potential for far too many things to go wrong.