Hearing the news of his hourly decline, I had rushed to visit him and was dismayed to see him so changed. He had trouble moving in bed, but his eyes lit up at seeing me and he greeted me with the same warmth and generosity of spirit as he had all year long. He introduced me to the rest of his family and thanked me for my care, which seemed ironic because I felt that care had failed him too early. The day before he died, I was astonished to find him lucid and completely prepared to die.
‘It’s in God’s hands now,’ he said softly as I held his thin hand. ‘I’ve had a very good life and you did your best.’
Many people would have expressed regret but here was Paul absolving me of any guilt.
Most astonishing, however, was the sheer calm that filled the room as a result of Paul’s equanimity. People came and went quietly, unafraid to look at him and say a quiet word. There were tears but also ordinary conversations. His dog lay quietly on the floor, as if sensing the solemnity of the occasion. A nurse came to check if he was comfortable. At Paul’s praise of her care, she broke into a smile. As she insightfully observed, it was rare to see patients play such an outsized role in their own peaceful death.
When Paul died, I felt his loss acutely and attended his packed funeral to pay my respects. The church was filled with mourners – he didn’t lack those who loved him. I sat in the back and listened to people’s memories of him. From the pastor to his friends, everyone hailed Paul’s generosity of spirit. They mentioned his capacity for love and his ability to forgive, but most of all they talked about the same quality that had stayed with me: his enduring calm in the face of impending death. Paul hadn’t denied his circumstances, he’d just been determined not to let them bring him down. Hearing people speak, I felt lucky to have known Paul and learnt something from him about accepting mortality. I saw how his genuine care for others enriched his own end-of-life experience because people instinctively gave back more than they received.
Laura told me that Paul’s religion had been his anchor, which made me think of how uncommon this is in an increasingly secular world. A devout churchgoer, Paul never advertised his religion but it was evident that his equanimity stemmed in no small part from his deeply held faith. We all desire purpose and for Paul religion was part of his purpose. While we may be living in an era where even the mention of religion can create awkwardness, I saw how religion can shape our thoughts and help cultivate calm. My heart ached when Laura lamented that even the dog missed Paul’s equanimity.
Paul could have been forgiven for adopting a very different attitude. His unsuspected diagnosis and unsuccessful treatment could have been a breeding ground for resentment. Patients in Paul’s situation can be the most bitter – never able to overcome the betrayal of their body, their hopes and their future. Sometimes, by expressing our natural sympathy, we can unintentionally aggravate their bitterness. Paul attracted many well-wishers who suggested ways to cure his cancer and it’s surprising he tolerated them all, but his innate calm told him that they meant well.
I had a chance to interview Laura and their two daughters for a radio program I made about the ripple effect of cancer and was curious to learn how Paul spent the last few months of his life. I heard that he located as many friends and family members as he could to request their forgiveness for past wrongs. Apparently, no one could think of such an instance, which shows the measure of the man.
Having promised to buy his daughter her first car, he took the time to find something safe and appealing. He spent hours with Laura, patiently coaching her on how to deal with the paperwork his death would generate, even building her a spreadsheet with the details. ‘He would simply say, “If anything were to happen, this is what I want you to do.”’
In the family’s telling, Paul filled his life with so many meaningful things that there was no room for anger or regret. As we spoke, I sensed their equanimity and couldn’t help reflecting on the impact of one person on an entire family’s outlook.
Paul’s death left a vacuum in my office. Doctors must move on to tend their other patients but Paul’s conduct gave me great food for thought.
One of the most quoted works of Indian mythology, the Bhagavad Gita, is based on the exchange on the battlefield between Arjuna, a gifted warrior, and his mentor, Lord Krishna. As he surveys the ready armies on both sides, Arjuna is overcome by grief and concern for the losses he is about to incur and inflict. Krishna encourages him with the following advice: ‘Wherever the mind wanders, restless and diffuse in its search for satisfaction without, lead it within; train it to rest in the Self.’
We have been encouraged since ancient times to make an effort to seek calm. Paul’s remarkable capacity to train the mind to rest in the self contains wisdom for us all.
Kindness
A part of kindness consists in loving people more than they deserve.
Joseph Joubert
ONE OF THE HARDEST questions doctors confront is not what treatment to prescribe, but what to do about the simple things that can quickly derail people’s welfare, especially at the end of life. Even in the wealthiest societies, these issues often have to do with food, shelter, money and support. Hospitals can help for a time, but it is often beyond their capacity to address the root cause.
Looking after patients affected by poverty, violence or neglect and then caught in the tangle of bureaucracy is challenging. But it doesn’t have to be so complicated – I meet plenty of patients who lead a completely stable life until a serious illness reveals the faultlines and they are left feeling vulnerable and alone.
When these problems occur at the end of life, the urgency to solve them is even greater. In such instances, kindness can arise from the most unexpected quarters, lightening the load for patients and doctors and creating good memories for others.
Sarah was a twenty-six-year-old student and part-time nanny I met in hospital after her year-long struggle against a rare neurological condition that even experts had difficulty pinpointing. Over a two-month stay in hospital, I watched her cognitive and physical capacity deteriorate. She was steadily losing weight, was often drowsy and sometimes confused, and needed increasing help to manage core activities such as feeding and showering. It became clear that her poor prognosis was inalterable.
On a ward round Sarah told me that she’d had an inkling from the outset that she had a life-limiting disease and expressed her wish to go home and live out the remainder of her life in familiar surroundings. She missed her dog and the small garden she had planted in a box in her tiny apartment. Uncomfortable at how long Sarah had spent in hospital with no meaningful gain, I was delighted at the prospect of sending her home with support from the community palliative care team. Except our plans hit an early roadblock. Sarah could no longer afford to pay rent and even if she could, her upstairs apartment was unsuitable for access. Sarah was an immigrant whose family still lived abroad. She thought about going back home but her palliative care needs were determined to be too complex to be met in her home country which, like most of the world, lacked access to morphine, oxygen and other palliative care essentials. In order to be discharged, Sarah needed a home and a carer – even the best-equipped hospital would be hard-pressed to furnish these.
Amid these serious challenges, the first thing that impressed me was Sarah’s kindness towards her providers. She accepted her illness but was greatly concerned for the staff working long shifts, especially when she found out they had skipped a meal. On these occasions, she’d encourage them to look after themselves and offer to wait to be seen. Although the staff always put her needs first, the gesture touched them greatly. I couldn’t help noticing that Sarah was even kind to the other patients, who were all older and in better health than her. Before it became too hard, she would read the newspaper aloud to the elderly patient in the next bed. Sarah’s kindness softened us all. When people see our best qualities, we strive to deserve it.
I knew that as long as she stayed in hospital she wouldn’t lack genuine affection; nonetheless, she n
eeded to go home.
The social worker was looking everywhere for assistance and a staff member had just begun enquiring if she could house Sarah when Sarah’s former employer, Ina, called us. Ina was a young academic who had relied on Sarah to look after her son while she completed her thesis. She had heard about Sarah’s illness through a mutual friend and guiltily enquired whether she had missed any signs. I reassured her that Sarah’s decline had been quite sudden and when she expressed concern about her prolonged hospitalisation, I mentioned the dilemma.
‘Sarah doesn’t have a home to go to,’ I explained. ‘The social worker is exploring possibilities, but everything takes time. Your visits may help Sarah.’
‘I want to do more,’ Ina replied.
Just hours later she called the social worker to say that she and her husband were prepared to care for Sarah. The social worker was sceptical about a young couple with a child coping with the care of a terminally ill patient not much older than them. But Ina explained that they had been greatly aided by Sarah in their time of need and felt that caring for her was the right thing to do.
‘She’d have done the same for us,’ Ina remarked.
I was moved by her gesture and happy for Sarah but cautiously advised that we would need to look at the logistics and Sarah would obviously have to agree.
Social work and palliative care thought the solution was tenable and Sarah, facing the prospect of indefinite hospitalisation, was overjoyed. A few days later, Sarah left hospital and the nurse who visited her at home told me that she had rarely met a more confident couple willing to undertake the onerous task of caring for someone at the end of life.
Although I would never see Sarah again, I kept track of her progress. True to their word, Ina and her husband ensured she had everything she needed, including the company of her dog. They also accepted help from another academic couple. Since Sarah spent most of her time in bed, the academics worked from home while providing her with quiet company.
I heard that Ina and her husband had done a great job of explaining things to their young son who was confidently involved in small but important tasks such as filling Sarah’s water jug and making her bed.
One day, Ina called me to say that although Sarah never mentioned it, it was clear that she longed to see her parents.
‘They speak every day, but do you think there’s time to fly them here?’
Surprised, I advised that time was running out but also that the logistics would be arduous. Nonetheless, I wrote a letter to the immigration department and Ina’s friends organised a fundraiser which provided enough money to fly her parents to her bedside.
Everyone involved was gratified at the compassion shown to Sarah, which disproved the common belief that the world is too self-absorbed to care about others. But my education hardly ended there.
Ina’s house was just large enough to accommodate Sarah but left no room for her parents. At this point, Ina’s elderly neighbour appeared with an offer to house Sarah and her parents in her spacious, mostly unoccupied home. She had heard about Sarah’s predicament and wanted to help.
It would have been impossible to script a better story and the neighbour’s gesture gave fresh meaning to ‘the kindness of strangers’.
The volunteers continued to look after Sarah as she became less mobile and comforted her parents by listening to them reminisce. They learnt how to administer her medication and when to call for help. The nurses were full of praise for how the volunteers thrived on being useful, but never overwhelmed Sarah or her parents with their kindness. ‘It’s like they were born to do this,’ one marvelled.
I wasn’t surprised to learn that Sarah was openly grateful to all her carers. Her restlessness in hospital had been replaced by ease. While she avoided the topic of dying, she accepted her decline and exuded a quiet confidence that she was in safe hands. A nurse reflected that for a woman so young, Sarah was a thoughtful patient who knew the importance of acknowledging her helpers. She recognised if they looked tired, asked after their children and made sure they knew how much she appreciated their sacrifices. For the carers, it was enough to be thanked.
In her last days, Sarah went to a hospice, where she died peacefully. Her young volunteers were sobered by her death but took rightful pride in their ability to join together and help in a way they had never imagined. They humbly reflected that it had been a life-changing experience for them which had made them appreciate their own good fortune.
I often think about Sarah and Ina and the way they illuminated the lives of others with their remarkable kindness. Their conduct was a lesson in practising kindness even when we may feel limited by our circumstances.
We can be challenged by the act of dying and the act of caring for the dying. In both cases, behaving with kindness towards others can be an antidote to our preoccupations – in fact, there are few things more transformative. I’m routinely humbled by the capacity of my patients to be kind to me while contending with their own weighty issues. They ask after my children, write a kind note, or bring honey from their collection. Their kindness spurs me on to be a better doctor and a better person. Well-wishers often ask me how best to help the dying. The answer is often quite simple: by being present and by being kind. My patients often wish someone would read aloud to them, help them write letters and record a legacy. Almost everyone I meet would be overjoyed to have someone just sit quietly with them, which may be the greatest act of easing the loneliness of dying. Kindness need not be loud and overwhelming, only consoling.
All too often we underestimate the power of small gestures but in debating how best to be kind, we would do well to be persuaded by Oscar Wilde’s remark that the smallest act of kindness is worth more than the grandest intention.
Gratitude
If the only prayer you ever say in your entire life is thank you, it will be enough.
Meister Eckhart
I AM PASSIONATE ABOUT BEING a doctor, but some days I feel as if the world, to quote the poet Yeats, is ‘more full of weeping than you can understand’. Many of my patients are old, sick and helpless, with children who are themselves sick, busy or simply unavailable. Even younger patients with a terminal illness have often been cast adrift from the personal and societal connections they might otherwise have. One can’t help but be struck by the physical, emotional and existential concerns faced by the dying, but the story of medicine would be incomplete without mentioning all the people who find the capacity to conduct themselves with grace, composure and, most of all, gratitude. In my view, this is one of the best parts of being a doctor.
Although one might think it unusual in an era of instant gratification, there are people who never bemoan their fate. They don’t downplay their problems, they ask probing questions and challenge doctors’ verdicts but they defy the notion that all dying must be dramatic or complicated. At a time in life so commonly associated with a lack of control, there is no doubt that they are in charge. They strike me as resilient and pragmatic, but if I had to pick their most important invisible underlying trait, it would be gratitude.
These are people who, over the course of their life, have catalogued all kinds of reasons to be grateful. When nearing the end of life, their most consequential choices are illuminated by the same approach. My most grateful patients have made things easier for themselves and their caregivers. And I can’t mention gratitude without recalling Ian, another one of my favorite patients.
It was a busy day and Ian had been kept waiting. Many of my patients recall their first appointment with absolute clarity and I often wish that the most significant appointments in a patient’s life, such as when they discover a diagnosis or receive serious test results, could run like clockwork, but unfortunately, this rarely happens because human beings have feelings.
The patient before Ian had suddenly crumpled under the weight of her circumstances and there was no way to wrap up the consultation on time. By the time I had calmed her, found a nurse, and called her husband, I was running co
nsiderably late. I remember accompanying Ian and his family from the waiting room and apologising for the delay.
‘The last patient needed a bit more time,’ I explained.
‘It’s okay, I imagine everyone here needs more time,’ Ian responded lightly and I was instantly moved by his consideration.
At seventy-one, he had recently retired from his job as a baker, joking that after forty years in the business it was time to see why people liked sleeping in. The small community had bid him a fond farewell as he handed over the reins to his grandson. Ian took his first extended holiday with his wife and came back feeling unwell. He teased her that unemployment didn’t agree with him but she insisted on tests.
In the room, I explained to Ian that the surgeon had skilfully removed his cancer and now he required a course of chemotherapy to reduce the risk of recurrence. Sobered by his diagnosis, he told me he wanted to do everything possible to stay healthy in the next phase of his life.
Ian quickly became known for his friendly demeanour. Early on, his nurse commented that a life of customer service had really given him the ability to read people. He could interpret body language and was pleasant without being intrusive. I thought her description apt.
In clinic, he was polite and unassuming. He brushed off the frequent blood tests and long waits as minor inconveniences and never failed to say thank you. What I especially liked about Ian was his clear sense of what was important to him. He told me very early that he valued his independence and quality of life and would rather stop treatment than live to regret the toxicities.
Although conscious of the sheer number of appointments he had to keep, I looked forward to Ian’s visits. He always came with his wife, and at least one of his five children. Having watched so many patients navigate this difficult time in their lives alone or with unreliable support, I grew to admire his close-knit family. But I could also see that, despite his openness, a part of his life belonged only to him. He was interested in people’s opinions but everyone knew who made the final decision. At a time when so many people feel jostled by their circumstances, his composure seemed all the more admirable.
A Better Death Page 6