A Better Death

by Ranjana Srivastava

  I was dumbstruck when Ian’s cancer returned within months of finishing treatment.

  Again, I walked Ian and his wife down the corridor to my office, their tension palpable.

  I got straight to the point, as he would want. My heart ached as I explained the implications of the recurrence and discussed treatment options that might extend his life but not cure him. Ian’s usual ebullient expression turned pensive.

  ‘All that treatment did no good,’ he said quietly.

  ‘It looks like that,’ I sighed. ‘I’m sorry.’

  It’s tempting for a doctor to fill the quiet space left in the wake of grim pronouncements with new promises, but I waited to take Ian’s cue, wondering whether his calm would finally collapse. I should have given him more credit.

  When he finally spoke, he said, ‘I can’t imagine how hard it must be for you to give this news.’

  I was speechless that a man reeling from bad news would find room in his heart for someone else. Ian’s wife regarded him with the same admiration that I felt.

  The nurses were dismayed to hear Ian’s news. They found that, although he was still friendly, he had grown more serious. During his previous visits, there was the end of treatment to look forward to, but now that was gone, his future hanging in the balance.

  He started chemotherapy and we settled into a new routine. He didn’t like to dwell on his terminal illness, instead choosing to talk about other things.

  The first diagnosis of cancer had sobered him, but its recurrence prompted him to prioritise. He was a keen craftsman who had kept up his woodwork hobby even in the busiest periods of his life. Now he’d decided to rejuvenate his workshop for some large projects, starting with a dining table for his youngest daughter, the only one of his children he hadn’t done this for.

  ‘How long will that take?’ I asked out of curiosity, instantly regretting he would think me out of place for questioning his prognosis.

  ‘In my current state, a couple of months, but I’m happy to be doing it,’ he said, smiling.

  I cheered him on until I saw the pictures of the finished product completed in record time. Next, he made his wife a fruit bowl. Admiring its polish and exquisite workmanship, I couldn’t help asking how he felt while making these pieces. He answered as if he’d frequently thought about it.

  ‘Sometimes I’m sad that my workshop will end with me. But mostly, I focus on the joy it brings people. I like making things that will stay with my family.’

  I thought then of how the consolations of a legacy came so readily to some.

  He mentioned his wife’s fear that he would cut himself and contract an infection in the workshop. ‘But I don’t want to sit in the house and worry. What good is that?’

  I felt honoured to know a patient who lacked pretence. Ian had always had a generous spirit but now his wife noted a determination to craft some of his best woodwork as a way of saying goodbye. Ian’s hobby was a metaphor for life: he would keep at it until he couldn’t go on.

  ‘Beyond thinking grateful thoughts, I need to do something with my hands,’ he once laughed.

  Signs of Ian’s gratitude were everywhere. He regularly thanked the nurses for tolerating him even though he was their easiest patient. He commended the intern when she finally found a vein, and praised the secretary for fitting in a tricky appointment time. Everywhere I saw how he elevated a casual thank you to a high note and watched people beam at the recognition.

  I could have had a transactional relationship with Ian and still done my job, but it was impossible not to be moved by his qualities. As various treatments stopped working, he would distract us both from feeling sad by asking about my children and their paintings, which adorn my office. He’d turn to parenting issues as if there were nothing more important on his mind. He talked proudly about his grandchildren, and when his daughter became tearful, eyes twinkling, he quipped, ‘Well, life must be nearly complete if my oncologist knows all about the grandkids!’ I laughed along but I also saw these remarks for what they were – endlessly innovative ways of paying tribute to the important people in his life.

  Gratitude leavened his life. Without the means to look outward, anger, restlessness and discontentment may have crowded his twilight days. He might have kept asking ‘Why me?’ without receiving a satisfactory answer. Instead, gratitude was his tool of grace, his way of making the best of a bad situation. The result was a journey where he was held closely by everyone and was left in no doubt of the love and the legacy that would survive him. There could be no better dividend from his investment.

  Keeping his word, Ian stopped chemotherapy when the bad days outweighed the good. He spent his last several weeks at home surrounded by his devoted family. He welcomed visitors and thrilled them with his spontaneous recollections of the fun they’d had together. Many were also consoled that they had made a difference.

  Ian left school at a young age and always described himself as ordinary, but I think he was as enlightened a man as I had ever met.

  After Ian’s death, his family wanted to visit me, but I hastily reassured them that wasn’t necessary. It can be trying for loved ones to visit a place associated with sad memories. But they all came and again I was struck by their poise, which pointed to how deliberately Ian had approached his death.

  I told them how much I had learnt from Ian about living wisely and it meant a lot when they told me how fond he’d been of me. From her bag, his wife removed a hand-carved pen and handed it to me. ‘Ian would have wanted you to have this.’ I was touched but hesitated to accept something so precious. She insisted, saying he’d saved it for his final visit, which didn’t eventuate. Knowing Ian, I believed that.

  I toyed with keeping the gift in my office but on second thought, took it home to join the collection of objects and cards left behind by patients that remind me of the privilege of being a doctor.

  Part 2

  Conversations

  The art of conversation is the art of hearing as well as of being heard.

  William Hazlitt

  THE BEST PART OF medicine is having meaningful conversations that allow people to make decisions that are in their best interest. Genuine conversation does not compete for the loudest voice or the strongest view but is an attempt to understand different perspectives. When we stop to listen, people become visible to us in all their complexity. We are all too used to walking the corridors of our own minds; conversations have the power to help us understand how others think. Ultimately, conversations bring us back to a better understanding of ourselves. They prompt us to define who we are and what really matters in our lives.

  My whole work revolves around conversations. Doctors around the world complain that increasing administrative work is slashing the time actually spent with patients. Everyone knows that good conversations form the bedrock of meaningful decisions and the ones I have with patients nearing the end of life can be divided into three parts.

  Early conversations necessarily focus on diagnosis and treatment. The ones in the middle are about helping people maximise their lives. The last have to do with dying well.

  Not unlike our lives, the divisions aren’t neat but they make for a useful framework.

  An ancient Chinese proverb says that a single conversation with a wise person is the equivalent of a month’s reading of books, but patients often protest that bookish knowledge is far easier to access than wise counsel.

  There is tremendous pressure on doctors to know the answer to every illness. After all, this is the primary reason people consult us, to find out what’s wrong with them. There would be fewer hit television dramas if doctors admitted the truth: many times, we aren’t sure what to do and this is especially pertinent at the end of life.

  In conversations about dying, an apprehensive doctor might say to a patient, ‘Let me help you understand.’ But it requires wisdom and maturity to ask the patient, ‘Help me understand.’ Experience has shown me that pretending to be an expert on mortality is to go on
a fool’s errand and it’s far wiser to approach the task with humility and a willingness to learn from others.

  This section of the book recounts some of the most important conversations that I have had with my patients at the end of life. Their stories illustrate the universal questions, dilemmas and practicalities people face.

  Anyone who helps them navigate these issues understands how sensitive and difficult they are to ponder, but they are also essential in the quest to die well. Our conclusions may differ, but there is consolation in knowing that we are not alone in facing these challenges and there is wisdom in gleaning what we can from the lives of others

  What doctors say, what patients hear

  The single biggest problem in communication is the illusion that it has taken place.

  George Bernard Shaw

  THERE ARE FEW THINGS more upsetting to doctors than a terminally ill patient who says at the end of life, ‘I had no idea.’ I know it leaves me awash with questions about whether that patient might have made different decisions along the way had there been a greater appreciation of what an illness implied and an earlier acceptance of mortality.

  But in an era where information rests at our fingertips, the idea of mortality is tucked far back in our minds. Studies show that most patients are unaware of a terminal prognosis and vastly overestimate their life expectancy. Sometimes patients are not told the facts, or they have misunderstood, but many people simply don’t want to know.

  In studies where cancer patients have been trained to ask questions about prognosis and end-of-life care, and their oncologists have consented to answering those questions frankly, the majority of patients choose to focus on more immediate issues such as the result of their blood test or the next line of treatment rather than a discussion about their preferences at the end of life. This might be human nature but not discussing mortality doesn’t make it go away. It just robs us of the opportunity to decide how we live and how we die.

  A lack of understanding about prognosis is responsible for causing immense emotional upheaval and hampering decision-making at the end of life. It is the single biggest reason for aggressive, expensive and futile medical interventions when it would be more appropriate and kinder to focus on supportive care. Precious days and weeks can be wasted like this, with the end result of universal dismay because the patient usually dies, the family is exhausted and the professionals are disillusioned.

  Hilda was one of many patients I failed to convince of the limitations of medicine. She’d had worsening heart failure for three years and, by the time I met her, had developed such severe breathlessness and fluid retention that her equally elderly husband could no longer look after her. In hospital, the diuretics to offload excess fluid worsened her kidney failure and the cardiac medications dangerously lowered her blood pressure. She easily lost her balance and was deemed a high falls risk. Confined to bed, she became quickly deconditioned. This is the path of many chronic diseases but poor Hilda was flummoxed: why could no one fix her instead of just talking about things such as her kidneys or blood pressure that were invisible to her?

  ‘What will you do for me?’ she asked me every day. Unfortunately, I was doing all that I could. She could no longer keep up with the gradual deterioration in her health. This was the best septuagenarian she could be. Modern medicine hadn’t failed her; in fact, it had helped her live as long as she had.

  In this situation, it would have been best for Hilda to accept that further aggressive treatment would neither help her live longer or better. However, if the focus were to shift to quality of life, options such as oxygen, home help or residential care, something Hilda’s husband wanted, could be explored. But Hilda was unmoved by my repeated requests for a frank conversation about her health. She scoffed at the notion that organ failure could result in the death of a patient who had survived breast cancer some thirty years earlier.

  A proud and self-sufficient woman all her life, Hilda’s denial came to define her and became her downfall. She spent a month in hospital without improvement. Then, annoyed by her perceived neglect, she discharged herself only to call an ambulance the next day to take her to a different hospital, where she languished from a hospital-acquired pneumonia. Her husband was near breaking point from driving to visit her every day and being asked to make decisions on her behalf when she became confused. Tragically, Hilda fell, fractured her hip and died. I was disheartened by how damaging a month of hospitalisation had been for her and how it had sapped her husband’s energy. I kept thinking how different things might have been but for some tough conversations along the way.

  But Hilda was far from alone; hospitals are full of patients who end up there through the revolving doors of modern medicine. Chronically ill and gravely deteriorating, they present to a hectic emergency department, which addresses their immediate problem but has neither the time nor the capacity to explore their expectations in detail.

  Patients and relatives are asked what they want done but this is an unfair question when there is asymmetry of information between doctors and patients. Vulnerable patients reply they want ‘everything done’ because they’re afraid their doctors will give up on them. But this reply only serves to trigger interventions about which questions are asked much later, often at mortality meetings where doctors and nurses wonder why no one suggested that doing nothing but providing comfort measures would have been the best option. No one I know is proud of this kind of medicine but it’s what awaits us if we have never thought of ourselves as being mortal.

  Nearly eighty per cent of people in developed countries wish to die at home surrounded by family and friends, but just ten per cent manage to have such a death. Sometimes practicalities prevent this but mostly people haven’t thought ahead and run out of time to arrange the many logistics. Our lives will be to an extent unpredictable and the most careful preparation can still result in a fraught death, but many deaths would be better, and our loved ones spared the resulting trauma, if we took control.

  This starts with being curious about our health. We should expect and demand better communication from professionals about diseases and their ramifications. But importantly, we must be willing to engage in conversations even when they test us. We must figure out how to broach the subject of dying and use the knowledge to live purposefully. Communication with professionals should be open and transparent and always let in a ray of hope. It should include trusted family members, recognising that they are the ones who help us carry our burden.

  With foresight and preparedness, we can live meaningfully with the knowledge that death is universal and, when our day arrives, find ourselves prepared to face it.

  Giving patients the worst news

  The truth is never pure and rarely simple.

  Oscar Wilde

  THE INTERPRETER GOT TO me first, with a face grown pale with concern. She whispered conspiratorially, ‘Every time you say the word “cancer”, the children want me to skip repeating it.’ I sighed – all the seasoned interpreters were accustomed to such requests.

  We would manage, I reassured the newcomer.

  The children appeared more on edge than the patient, Yen, who sat in a wheelchair. Her forearm was plastered, a result of her latest fall on the way to the bathroom. Her rehabilitation was said to have been hampered by a diagnosis of cognitive impairment. Then she complained of abdominal pain and was unexpectedly diagnosed with cancer. I inferred from the notes that she didn’t have long to live.

  A discharge summary stated, ‘In accordance with the family’s request, cancer diagnosis not disclosed to patient.’ I had to suppress my frustration.

  No sooner did the family enter the room than the daughter made a beeline for me.

  ‘We want you to tell Mum she has an ulcer.’

  In my early years as an oncologist, my face would have revealed my incredulity. Now, I just said gently, ‘She doesn’t have an ulcer.’

  ‘An infection then.’

  I stayed quiet.

  ‘
People of her generation, they don’t know any better,’ she persisted. ‘She doesn’t know what any of it means but hearing “cancer” will kill her.’

  Her claim sounded presumptuous, but it came from a place of love.

  ‘Then it’s my job to help her understand,’ I gently replied.

  Her brother stepped forward as I started to feel awkward at leaving Yen out of the conversation. ‘In our culture, this is normal,’ he insisted.

  ‘I will understand if she doesn’t want to know but I must give your mother the opportunity.’

  ‘She has dementia, why burden her even more?’ he reasoned.

  I hated my predicament but had a duty of care towards Yen.

  ‘If she has dementia, she won’t understand me anyway, but at least I should try,’ I negotiated.

  He looked so downcast that I pledged to be kind as the interpreter wheeled the patient forward. The children closed in, as if poised to catch the grenade about to be lobbed.

  ‘How are you?’ I asked Yen.

  ‘Quite well,’ she replied via the interpreter. ‘The arm hurts a bit but that’s to be expected.’

  From the way she answered my questions, her cognition seemed fine and I realised that pain and the language barrier must have made earlier assessment difficult.

  ‘My inside hurts sometimes,’ she offered when I asked about new symptoms. ‘This is a new feeling.’

  ‘Would you like to know why?’ The children’s gazes were on me, but I kept my eye on Yen.

  She nodded eagerly. There was no doubt she wanted to know.

  ‘You might remember having some scans. Unfortunately, they found cancer.’