We all breathed a sigh of relief when the first year passed uneventfully. She fell into a new routine and what she did was determined by how she felt.
Thankfully, Sally mostly stayed well. She took occasional breaks to fit in with school holidays and was able to run a busy household with John. She’d been thinking of returning to work before her illness stopped her. Instead of ruing this, she saw it as an opportunity to devote more time to her children. Much to their delight, she became a helper in the school library and a visible presence in the school canteen. The school community united around her and for a time Sally’s life assumed a heartening normality.
I was always intrigued by this normality, which was genuine, but never doubted that it came from a place of great effort. Where many people would have felt dejected, Sally tended to focus on the positive. Yet this never felt like denial; in fact, the opposite; Sally possessed a preternatural sense of acceptance about her fate and knew exactly how she wanted to live her life.
Partway through the second year, things became spitefully difficult. The chemotherapy stopped working and mounting side effects resulted in several hospital visits. Drugs and antibiotics controlled her symptoms but at the expense of making her tired and drowsy. She was honest about her discomfort, but also unflappable. One day, standing by her bed after yet another disturbed night, I realised that my patient was someone with bravery at her core. I concluded that in accepting that she was dying, Sally had seized on a powerful truth: what was happening to her did not define who she was. It was a difficult concept, which she embraced with self-assurance.
This made me recall her early remark that her situation would not alter her core beliefs or her conduct towards others. Consequently, she remained personable and relatable, and in some way, the obvious goodwill this generated must have made her journey more bearable.
One day, conscious of having evoked more sadness, I said feelingly, ‘Sally, I’m really sorry you’re going through this. I wish there was something I could do.’
Her response stopped me in my tracks.
‘But we’re all going to die,’ she said evenly. ‘I guess my time came sooner than usual. You can’t help that.’
Instead of being the consoler, I ended up as the consoled. Sally’s conduct gave many of us the impetus to match her determination and not be embittered by our fate.
She had always struck me as the engine of the marriage, so I was curious to know how John was coping since all I saw was his valiant but almost wordless support.
‘She keeps us all strong,’ he said, his voice faltering. He went on to explain how every family member drew inspiration from her. She had told her siblings grieving was okay but helping her with errands was even better. The errands included driving across town to collect a ceramic vase for her mother and ordering fancy dress costumes for her daughters. The siblings rolled their eyes at some of these ventures but loved being involved in creating memories. Sally often talked with her youthful parents about the role they would need to play in her children’s lives. And she constantly reassured John that he had all the necessary attributes to be a good parent on his own. Sally also talked to all her children about her life expectancy being short and her confidence that they would thrive without her. Because Sally accepted that she was dying, no subject was left untouched.
The way she led her life highlights the vital role that the dying can play in the lives of others. Sally knew from the outset that she would die much sooner than she had expected. Accepting this, she helped others through consistent actions that celebrated a meaningful life over a long one. Her attitude permeated through the whole family and, while I wonder how many of us could carry off the feat with the same distinction, I found it a powerful thing to watch.
In her final weeks, Sally took a final holiday with her children and went to their favourite beach. Much to my frustration, she ended up in hospital there too, but nothing dented her spirits. Many people would at least mention the hiccup on their return, but she chose to talk about the fun they had.
After the holiday, her pain required more powerful drugs. When she felt weak she liked to sit in her favourite armchair by the window. She encouraged her children to stay home from school if they wished but also advised them that school could be a good distraction in such times. She had arranged to be admitted to hospice in her final days. This is where the family vigil moved, and she died peacefully, surrounded by her family, sixteen months after diagnosis.
I attended her funeral with a heavy heart. There, among other relatives, I met her ninety-year-old grandmother who lamented outliving her grand-daughter. For such a grief-filled occasion, the most extraordinary feature was the almost palpable calm in the room.
Not only had Sally talked openly about dying but she’d also been the family’s anchor on the journey. And now, as every eulogy recalled, she had reminded everyone that death was universal and that they had the capacity to carry on without her. The longer I stayed the more I learnt about the great acts of kindness that Sally had quietly performed.
She had sat down with each child and spoken of her sadness while instilling them with confidence in each other and their father. She left money for her sister’s unborn child, regretting they’d never meet. She bought her brother tickets to a game they had meant to watch together. She consoled her parents and asked them to care for their grandchildren. And she had even comforted her grandmother at the unfairness of losing a grandchild during her lifetime. Many people paid heartfelt tributes to Sally, but her father’s words stayed with me: ‘She made it okay for us that she was dying.’
Witness to the most extraordinary preparation for death I had ever seen, I felt proud to have known Sally. I could almost hear her telling me that my duty to her was finished and to concentrate my energies on other patients. Leaving her funeral service, I too had the feeling that things would be okay.
I have lost more patients since Sally. Many have struggled to accept their mortality, causing consternation for them and moral distress for their carers. I am often reminded of Sally when I meet them. She found a way to live well during a terminal illness. Choosing neither unbridled optimism nor pure nihilism, she stayed on an even keel. She had a strong sense of how she wanted to live, which gave her the courage to say when she’d had enough. Her acceptance helped her avoid the desperation that prompts many people to try bizarre, unrealistic, or unsafe treatments. For someone so young, Sally packed in admirable self-knowledge and poise.
SALLY WOULD HAVE BEEN moved to think that her short life could provide universal lessons in dying. She would have described herself as an ordinary woman whose greatest wish was to have children and take them on lots of picnics. She wasn’t a sage or a philosopher and had never had to think deeply about mortality before being forced to confront it after her holiday. But I think Sally had something many of us lack – the ability to be at one with our fate and seek to change only what lies in our control. Death was inevitable and, for her, it had come early but she could still live the best life possible. This was an exceptional attitude to bear witness to and I will always be indebted to Sally for the lessons she taught me.
Meaning
The mystery of human existence lies not in just staying alive, but in finding something to live for.
Fyodor Dostoyevsky
THE BEST OF MEDICINE sometimes has surprisingly little to do with the medicine itself and much more with fellowship on the journey of life. The pace of modern medicine seldom permits such luxury but when it happens, it’s rather special.
Charles knew he had irreversible lung disease. At just fifty, he was suffering from end-stage emphysema and was reliant on home oxygen to help him breathe. I met Charles on the ward during one of the months I worked as an internal medicine physician.
It was his sixth admission to hospital that year – a bad sign. This time, he’d contracted influenza during a particularly harsh winter.
Charles lived alone in an apartment in a nice part of town with great amenities. A
successful businessman, he’d spent several years living abroad, having moved away after a relationship breakdown. He’d been stealing cigarettes from his dad since he was a boy but a wholesale renewal after the end of the relationship meant quitting smoking, curbing alcohol and taking up regular exercise. Therefore, he could hardly believe it when a series of lung infections led to the diagnosis of severe emphysema. The lung specialist thought it unusual to develop the disease at a relatively young age. He sent him to a transplant physician who warned that a lung transplant was highly complex surgery and that most patients died during the waiting period for a deceased donor to become available. By the time I met Charles, it was evident to me that he had missed his chance, but I found him clinging to the hope of receiving a new lung.
The first week in hospital was occupied by treating his influenza. The infection settled but his lungs had taken a blow and Charles was too breathless to even get out of bed. He kept hoping that he would improve in time to attend his next transplant appointment and brought this up at my daily rounds.
Charles was articulate, polite and an easy conversationalist. His smiling eyes made it even harder to deliver bad news. ‘Let my transplant doctor know I’m here,’ he once suggested. ‘He might have some clever ideas.’
‘We’ve spoken,’ I assured him. ‘He has no other advice than to wait for improvement.’
His disappointment was obvious.
A week later, Charles had grown even more deconditioned as a result of staying in bed. He needed a nurse to help him stand and was too breathless to participate in even gentle rehabilitation. One day, as I watched him step gingerly into the bathroom, leaning on his nurse, the truth dawned on me that Charles might not have more than a few months left to live.
‘Your patient won’t get home’: a rehabilitation physician confirmed my fear. Up to this point, everyone had been expecting slow but eventual improvement.
Patients like Charles can easily languish in hospital if no one nudges the biggest conversations forward. I, and others, knew that we needed to broach the subject of his mortality, but his mind was a long way away, fixated on a transplant.
I wondered whether his family could help but found that he had few friends and one sister who seldom visited. From his demeanour, I very much doubted that he’d ever considered his condition to be a terminal illness. In fact, despite being bedbound for weeks, I didn’t think he even understood its severity.
One day, I sat down with him as he lay propped in bed.
‘Charles, I know you’re waiting for things to turn around, but I’m afraid your lungs are very weak.’
‘I know. I just wish they would hurry up and transplant me.’
‘I think that chance has passed.’
His eyes widened.
‘You really think so, doc?’
‘I do.’
But before I could go on, he became distracted, making me suspect that the lack of oxygen to his brain was affecting his cognition.
The next day, I sat down with him again. This time he was attached to oxygen tubing, arranging small pieces of plastic on his bedside table.
‘What’s that?’ I asked curiously.
‘My hobby’s building miniature cities and landscapes. My sister brought these in.’
I bent down to admire his neat and detailed work. It was the first time I’d seen him engaged in a task.
He was clearly delighted by my interest and I felt unkind changing the subject. He told me he still felt weak.
‘Charles, I don’t know if you’ll get much better. We need to plan ahead.’
Instead of his usual breezy reply that he would soon get back on his feet, for the first time he gave me a pensive look.
‘Do you think I’m dying?’ he finally asked, taking me by surprise.
‘I think you are,’ I said, filled with regret but also relieved that we had reached this stage.
‘But I’m not done with life,’ he protested. ‘I have so many ideas in my head.’
His lament spoke to me because my own head is constantly churning with ideas that I always assume I will have time for later.
He continued wryly, ‘I thought you had to be eighty or ninety to think about meaning. I’m only fifty.’
I didn’t know what to say. So, I simply listened to him as he formed his own correct view that he was dying, and I saw how just allowing his thoughts to unfold brought about a thus-far-elusive realisation. Charles acknowledged the short time he had left and declared that absent further useful interventions, he’d like to leave hospital and enjoy building his miniature cities. He had us cancel his various respiratory appointments.
The social worker found him a nursing home close to his sister. It was a sad day seeing Charles leave, as he was one of the nicest patients I’d ever met. He gladly greeted my team each morning like long-lost friends. Although we constantly delivered bad news, he never withheld a compliment and frequently told us how fortunate patients were to be under our care. His words were like balm to his providers, who often fought their own emotions at the unfairness of his situation.
Every eye in the room was moist as he shook hands with the team and told us he’d miss us.
Charles contracted another infection and died in his sleep three months later. His sister marvelled that he was a changed man in that time. He stopped hoping for a turnaround, embraced his relationships, enjoyed good food and wine, and wrote a generous will, forgetting no one. He gave away his prized miniature collections to a little boy who used to visit his grandmother in the nursing home and always peeked in to see what Charles was building next. He left a fine reading lamp to a nurse who was a former refugee and who practised speaking English with him. He never failed to tell his sister how much he loved their long car trips when they reminisced over their lives. According to everyone who met him, there were countless such gestures of goodwill as his health deteriorated. Charles had always had a streak of kindness in him but reconciling with mortality had magnified it.
His sister warmly reflected that her successful and ambitious brother had fretted over finding the meaning of life, reminding me of his lament in hospital, but she thought he had found it in a hundred small acts of consideration. This reminded me of Ralph Waldo Emerson’s words: ‘The purpose of life is to be useful, to be honourable, to be compassionate, to have it make some difference that you have lived and lived well.’
Our exchange prompted me to wonder how any of us finds meaning in life. Would I myself scramble to create it or would there be a pre-existing stock waiting to be unwrapped? How and when do we find meaning in life? What does meaning feel like? Who gets to think of meaning?
Meaning can seem like a towering concept better suited to the intellectuals among us, or perhaps those who have time to gaze at the ocean and contemplate the minutiae of life, than ordinary people. Most days, it is more than enough to manage our daily needs of buying groceries, paying bills, finding childcare and employment. It might even strike some as mildly indulgent to contemplate what imbues our lives with deeper meaning – and I suspect that most of us wouldn’t even know where to begin. But in fact, the search for meaning is hardly an intellectual exercise, it’s a thoroughly practical one. To identify our values, our motivations, and what lies at our core is essential to dying well.
I have learnt this from years of working in a metropolitan hospital with a high share of socially disadvantaged and impoverished people, asylum seekers and refugees. My patients are not academics, intellectuals or philosophers; many have no formal education. Some have indescribably difficult stressors running through their entire life before they become seriously ill. But when it comes to finding purpose and meaning, there seems to be little correlation with status, income, or age. Those who acquit themselves well have often accepted the vagaries of fate and focus on their own actions. It’s instructive to see how they remain calm amid trying circumstances and a lot has to do with knowing what matters.
I once cared for a patient, Maya, whose sensible exchange
s put every doctor at ease. She was on the ward after sustaining a severe heart attack and when asked about her views on resuscitation, replied, ‘I have lived through a lot. If you feel you can help me, I’d like you to do what you can. If you think I am dying, I’m ready to go.’ The distinction she drew between staying well and merely existing without quality of life was clear and wise and yet Maya had never finished school. After fleeing war, she’d spent her life working on a factory line where she met her husband, yet she could encapsulate the meaning of her life in one word – family. She told me she was proud to have raised four children with seven professional degrees between them. In a life that could have taunted her with abundant missed opportunities, Maya chose simplicity. She regretted that she had never had the chance to study and prove herself but derived frank happiness from the achievements of her children and grandchildren. ‘I want to live forever to enjoy them, but I will die knowing my job is done.’ To hear Maya satisfied was to be satisfied.
She survived without needing resuscitation, but her heart function did not restore itself. She went downhill over a period of months, able to exert herself less and less. So, when I received a call from a community nurse, I could confidently say that Maya was ready to die with the least possible fuss. The nurse started a morphine infusion and Maya died peacefully. Though her passing was sad, it was consoling for everyone to know she had lived and died happily, as she had herself said many times.
Another memorable patient, Hugh, undertook a unique search for meaning. Hugh came from a distinguished family and when I met him in hospice, he told me that his grandfather and father, both eminent judges, had written widely on important judicial matters. In his late forties and himself a judge, Hugh had embarked on a memoir about the two legendary figures in his life when he’d fallen ill unexpectedly. He knew that time was running out and he wanted to finish his book as a tribute to his family and a gift to his children. As a writer, I was intrigued, never previously having met a dying man racing to the finish of his book. I learnt a remarkable lesson in perseverance and promise. Hugh woke up early and used his saved strength to type his manuscript. On days he didn’t feel like typing, he dictated, and his large family took turns at the keyboard. I wondered sometimes whether his wife and children resented his preoccupation, but I saw that finishing the book became the family’s joint mission. It fuelled them and brought them together. It was both their way of grieving and of celebrating and his room frequently rang with laughter while overflowing with dictionaries and references. For this family, it was too hard to make sense of fate, but they found meaning through writing.
A Better Death Page 4