A Better Death Read online

  Praise for A Better Death

  ‘Death is a subject most of us try to avoid, and all of us need to discuss. I can’t imagine a better starting point for that conversation than Ranjana Srivastava’s illuminating, inspiring and intensely practical book. The things we most want in a doctor – kindness, compassion, empathy and the reassuring blend of technical skill and professional integrity – are all here, shining through every word’ Hugh Mackay AO, author of The Good Life

  ‘A book brimming with pathos and profound insights on facing death with compassion, kindness and forgiveness, for ourselves and those we may be caring for who are dying. In helping us grapple with our own mortality, with unflinching honesty and pragmatism, Dr Srivastava empowers us to live our lives to the full with an urgency and authenticity that will transform all our lives for the better’ Kon Karapanagiotidis OAM, author of The Power of Hope

  ‘At last, a book to help us prepare for the end of life. With tremendous warmth and wisdom, Dr Srivastava is a compassionate guide – there is comfort here, but also practical advice about the issues we will all face, and how to die with kindness, courage and perhaps, if we are lucky, grace’ Caroline Baum, author of Only

  ‘Equal parts moving and informative, this book will leave an indelible mark on anyone looking to cultivate meaning and purpose in life’ Australian Women’s Weekly

  ‘Ranjana Srivastava is the wisest of doctors. A Better Death brings together a wealth of experience both as an oncologist and as a human being. Srivastava knows that death is far more than a clinical problem. It is the end point of a complex journey, and medicine is only one of the resources that the traveller might require. This book is alive to all the other needs such as friendship, honesty, purpose, touch, love and gratitude. Even a cup of tea. Dr Srivastava shares many stories from her work and does so in an uplifting and forthright manner. A Better Death exudes a calm and positive energy from every page. It is the perfect balm for a fearful and technocratic world. It celebrates the mystery of life’ Michael McGirr, author of Books that Saved My Life

  ‘Doctor Srivastava takes your hand in these pages, and leads you skilfully but gently along the road to the end of life. She lights that way vividly and with great thoroughness, as she knows it well, both by heart and by practice. You may be reluctant, but Dr Srivastava is irresistibly convincing and wise. Few among us will have the privilege of Dr Srivastava by our side, but this book is surely the next best thing’ Morag Zwartz, author of Being Sam

  ‘With her distinctive combination of empathy and vision, Dr Ranjana Srivastava has written an indispensable book full of warm and wise advice on how to care for those we love at the end of their lives. Further, she invites each of us to consider how we live now, and to think about our own mortality with a new and clear-eyed compassion. What a gift! Read it and give it to everyone you love’ Kate Richards, author of Madness: A Memoir

  Contents

  Epigraph

  What I have learnt about dying well

  A day in the life

  Part 1 The values of those who die well

  Believing

  Acceptance

  Meaning

  Forgiveness

  Equanimity

  Kindness

  Gratitude

  Part 2 Conversations

  What doctors say, what patients hear

  Giving patients the worst news

  How people die

  Deciding where to die

  Getting the best care at the end of life

  Letting go

  Part 3 Advice for patients and their families

  Handling conflict within families

  Friendship and grief

  Deciding between work and rest

  Caring for a loved one with dementia

  Helping our loved ones die comfortably

  Being a good advocate for the dying

  Ensuring the whole family gets help

  Planning ahead

  The pros and cons of clinical trials

  Protecting our health

  Tackling pain at the end of life

  What to do about denial

  Dealing with a sudden death

  Facing the aftermath

  Epilogue

  Acknowledgements

  About the Author

  For my patients, who teach me

  Ars longa, vita brevis

  The art is long, life short.

  Hippocrates

  What I have learnt about dying well

  I ENTERED MEDICAL SCHOOL with stars in my eyes. After all, doesn’t everyone? Crossing the threshold of the cavernous lecture theatre for the first time, I dreamt of changing the world. The portraits of eminent clinicians that lined the corridors never seemed to me as distant things to be admired; rather, they were a living inspiration to earn the privilege of being a doctor.

  Like so many young doctors, I was uncertain about my future. I met brilliant physicians and skilled surgeons who excelled in one area, but I always wondered whose job it was to embrace the whole of the patient, especially when things went downhill. Many times, I saw a laser-like focus on the disease dissipate to nothingness when the treatment failed. This happened especially when people were dying. It was often unintentional, but when a specialist slowly detached from dying patients and their families at a time when they most needed help to navigate what came next, it was really a form of abandonment. Consequently, the people who inspired me were those who chose to stay with patients to the end, who saw their duty in larger terms. They recognised that the end of treatment did not mean the end of care. They were good doctors but importantly, they were thoughtful people and I was moved by what powerful consolation they had to offer.

  Since the earliest stages of my career, I was struck by how lonely the end of life could be. I met helpless patients and their loved ones who didn’t know what to expect at the end of life. I noticed the strain of carers who bickered with each other and fought against their internal conflicts. But I also breathed the calm of patients who had made peace with dying and sensed the quiet determination of relatives joined by common purpose. I admiringly watched social workers deal with practical matters like paying off debts and recording a legacy and then finding time for existential questions that didn’t have straightforward answers but nonetheless deserved attention: Why me? Why now?

  I shouldn’t have been surprised that one sentiment I repeatedly encountered was how much patients valued the kindness of their doctors. Dying patients and their relatives obviously appreciated the advocacy of their doctors in keeping them well but they reserved their most profound gratitude for those who cared for them and about them at the end of life.

  The other crucial thing I learnt was how ill-equipped medicine is to help patients deal with the universal fact of life that is their death. Patients and caregivers described how difficult it was to get to the truth of an illness and how unprepared they felt to make major decisions about how far to go and what to do. For every patient who dismissed the need to talk about death and dying, there were many more who needed help to say the things they meant to say and do the things they longed to do.

  Six years of medical school. Twelve more years of training. Eventually, I followed in the footsteps of a mentor to become a specialist in two areas: oncology and internal medicine.

  Oncologists specialise in the diagnosis and management of cancer and possess detailed knowledge about cancer treatments, their relative merits, and their side effects.

  Internal medicine physicians care for a broad range of patients such as those who have heart disease, stroke, diabetes, dementia, infections, chronic pain, lung disease and other chronic medical conditions. Nine out of ten people over the age of 65 have at least one common chronic condition and many pat
ients consult a specialist for each organ. The most important role of an internal medicine physician is to avoid piecemeal medicine and provide a cohesive approach to the whole person.

  My main work is as an oncologist. For three months each year, I also work as an internal medicine specialist. For two decades, I have worked in a public hospital located in one of the country’s most multicultural and also most socioeconomically depressed regions – an area of high crime, entrenched poverty and crippling illiteracy. Practising medicine in this environment and effecting change is twice as hard. I have felt despondent, been threatened and robbed, yet I have never thought to leave. Because tucked away amongst these oppressive problems is something else: an unparalleled chance to learn not only the vagaries of medicine but importantly, how people from different corners of the world experience life and face death.

  My patients hail from a staggering 160 different countries. Many don’t speak English as a first language, follow different faiths and have unique customs and traditions. In this melting pot, I care for professionals and labourers, migrants and asylum seekers, people blessed with friends and those who have no one, those who’ve made it in life and those who doubt they ever will. I consult priests and chaplains, imams, monks and rabbis who come to tend dying patients. I observe who keeps vigil at the bedside, what binds a grieving family, and how different people learn to let go, and I realise that this is in fact the unprecedented and richest reward of my work – a chance to contemplate a meaningful life and a peaceful death.

  As an oncologist, I see how death from cancer is often emotional and public. Many professionals are dedicated to caring for terminally ill cancer patients who are the beneficiaries of enthusiastic healthcare funding, community sympathy and a steadily increasing pool of resources. It should be so. Unfortunately, in the role of an internal medicine specialist, I see that the same can’t be said of patients dying from dementia, heart disease, stroke, infection, or progressive organ failure. Their death is often slow, their trajectory unpredictable and their dying no less tragic, but such patients and their family members frequently find themselves short of information and counsel at a vulnerable time.

  Needless to say, it’s not only the elderly who die; people in their thirties and forties also die of terminal illness, usually with an entirely different set of needs, regrets and responsibilities. A just and humane society recognises that all of us deserve to die well.

  We all desire basic independence and dignity; where there is suffering, many of us think it’s preferable to see a life end than turn into a series of slow disasters. Modern medicine has made this an all-too-familiar sight but even when such patients die our relief is tinged with sadness for what the death represents: the loss of a unique individual as well as a beloved partner, a devoted parent, a loved child, or a fond sibling.

  Being a doctor has taught me that discoveries, treatments and cures are important and exciting but what’s even more important is the ability of doctors to help patients navigate what happens when the discoveries disappoint, treatments fail, and cures never arrive. Somehow, amid all the advances of drugs and technology, medicine forgot to allow for people to die. Academic journals, scientific gatherings and popular media are rife with stories about the next big breakthrough in medicine, some of which are a just cause for celebration. But we are all mortal and each one of us must contend with the great subject of our own dying. This is where medicine often falls silent, losing its confident tread, ambivalent about how exactly to mention the obvious: that we are all slowly dying and that being afraid of death or not talking about it isn’t going to make it go away.

  Doctors play an instrumental role in end-of-life care. They can ease pain and bring peace by helping people understand that it’s time to call a halt to futile and uncomfortable treatment and ponder some bigger questions.

  I experienced this myself at a young age when my first pregnancy suddenly ended in the late-term loss of both twins. In the course of a single day, I went from a completely fit woman and a newly-minted oncologist to a terrified patient who was losing both twins through a rare condition I had never even heard of. The bad news was piling up too fast for my shaken mind to absorb it all. But amidst the confusion, I asked the veteran obstetrician a single question that would be my saving grace: ‘Will the twins die?’

  To his eternal credit, and my infinite gratitude, he responded yes. Then, he quietly and patiently described why. His eyes were moist and his sympathy palpable.

  I can’t overestimate the significance of this straight answer that removed my doubt, stopped my husband and I from looking for answers, and set us on the path to acceptance. The death of the twins was always inevitable; but our experience could have been tainted in so many ways. The right words spoken by the doctor at the right time not only made the sorrow bearable but also put calm and courage in our next steps. The twins were laid to rest and we went on to have three healthy children.

  For a doctor who started out dreaming of making change, it’s taken nearly two decades of practice, searing personal loss and soul-searching along the way to realise that a fine medical education and costly training can be justifiably used for a purpose other than extending the lives of patients – doctors can also help patients die well.

  After all, some day we’ll all find ourselves in the situation of caring for a loved one or, perhaps more importantly, caring for ourselves at the end of life. None of us on our own could expect to gain all the practicality, knowledge and wisdom needed to die well, but we can all learn something from sharing stories. As the philosopher Michel de Montaigne said, it is good to rub and polish our brain against that of others.

  The Mahabharata is a three-thousand-year-old major Indian epic that holds sage lessons for the modern era. It contains a dialogue between a celestial figure and a nobleman. ‘What is the most surprising thing in the world?’ the spirit asks Yudhishthira.

  He responds: ‘Day after day man sees countless people die but still, he acts and thinks as if he will live forever.’

  This is at once a profound philosophical question for humanity and a personal quest for every human being.

  I KNOW THAT MY PATIENTS would be delighted, humbled and ever so proud that they could illuminate the lives of others. Indeed, there is a lot to learn from the experiences of people dying in this extraordinary time of progress. Many of my patients wish they had more time left for family and better friendships, more laughter, less conflict, more contentment, less stress. But with support and advocacy, they also come to recognise that amid all the twists and turns, there are many moments of happiness, fulfilment and discovery to be cherished that give meaning to life, no matter what its duration. This knowledge and its accompanying consolations can be found if we look for them. The power to achieve a better death lies within each of us.

  My greatest hope for this book is that it gives a sense of control to readers. Popular culture might frame it so but dying is not about accepting defeat or letting go. Death is a universal destiny, not the price we pay for living; rather, a natural conclusion of living. Dying well is about treating ourselves and others in the last act of life with grace and goodwill. We can persist with qualities that exacerbate our suffering or adopt those that celebrate the time we have left. For the bereaved, death need not be associated with intractable grief but spur the creation of a hopeful legacy. This is why, for all of us, a better death should not be a mere hope but a worthy goal that honours the life we have led.

  A day in the life

  ‘HOW DO YOU KEEP calm when you see such terrible things?’ my host quizzed me at a social event. I felt relieved, yet vaguely guilty that the tumult in my mind was not apparent on my face.

  Today was gut-wrenchingly difficult, I wanted to tell her. The seven years spent in the shadow of a cancer diagnosis had been broadly kind to my patient, Lucy, although I could appreciate that at age forty-five she might not concur with my definition of kindness, which considered her improved prognosis, a lack of hospitalisation, sta
ble scans and her ability to continue working as a beautician.

  Also, her medications hadn’t caused unacceptable side effects; she had avoided regular blood tests; and she was not beholden to her doctors to tell her when to take a holiday.

  What this definition did not acknowledge, however, is that she had an incurable malignancy which would one day result in her untimely death, and Lucy felt considerable pressure to make each year, even each month, count as if it were her last. Every annual event such as a school concert, dance performance, or Christmas contained the poignancy of it potentially being her last. No one knew. But a silent clock was ticking somewhere and there was all that living to do before it ran out.

  Her medications were not toxic, but they were by no means benign, and she had to bend her mind to get used to them. The catalogue of irritations including insomnia, aches and pains, diminished libido, fatigue and a vague but permanent dread might seem mild or expected according to the drug insert; for Lucy, they were the necessary price for staying alive. Medicine could not restore her former self; life was about adjusting to change. It was an important distinction: every time I assure a patient that a new drug isn’t ‘too toxic’, what I’m really telling them is that on the whole, the trade-off is good but there will be days when it won’t be so. A new uncertainty has entered their life that medicine will not be able to displace.

  However, doctors must still be able to relate to the illness of their patients.

  ‘I feel fine,’ Lucy sometimes reported with puzzlement as I frowned over some test abnormality.

  ‘I’m so pleased. Remember, not all cancers cause problems.’

  What I omitted was to say, ‘But one day, you and I will both feel devastated.’

  ‘Will it ever go away?’

  ‘Not completely.’