The impasse continued all week before the social worker called a meeting to find a solution.
I had to use my best persuasive powers to convince the family that to allow Harold to have his cup of tea actually constituted good medical care. That day, Harold was wide awake to firmly state what he wanted, and I felt quietly triumphant when the meals attendant whispered how happy she was to have served him what he hankered for. Finally, Harold got his cup of tea. He didn’t live happily ever after but the few months he lived were made more bearable by cups of tea.
To an outsider, it might seem preposterous that the thorniest dilemma in the care of a frail old man was whether or not to let him have a cup of tea, but Harold’s story was a case in point that the biggest impact can be made by heeding the smallest desires of patients.
It should be possible to benefit from the best of what medicine has to offer without being a victim of all that it can do, and for this, we must be active participants in our care. We must believe that we won’t live forever, but as long as we live, we will do so in a meaningful way. When we cannot speak for ourselves, we need our loved ones to be our confident advocates, bold enough to distinguish between what we want and what they think we should want.
It is vital that doctors pause their frantic activity and ask what matters to patients. All too often, medicine takes on an energy of its own that loses sight of the patient. In turn, this places a great responsibility on patients to insist on being a part of the conversation about what’s happening to them.
I’m frequently moved to see how my dying patients vex over all kinds of decisions and often get hopelessly lost in the minutiae. Wondering about whether or not to have more treatment, undergo more tests and seek further opinions at the end of life can overwhelm even the most resilient individual but my advice to patients has always been that each decision point comes back to what really matters to them. The answer is different for us all but those who can answer the big questions always manage to find the answers to the smaller ones. The German philosopher Nietzsche put it best when he observed that ‘He who has a why to live for can bear almost any how.’
For Harold, who had led a full life, and greatly missed his wife’s company, happiness meant a cup of tea. For some of us, it might mean going fishing, holding a grandchild, or celebrating one last birthday in style. For others, there’s deep satisfaction to be found in recalling their legacy, sitting in their garden or caressing a pet. When compared to the sophistications of modern medicine, these needs sound simple and unpretentious, but these are the things we ought to take seriously because they form the bedrock of a meaningful life.
When we look around, many of us feel worried about the mismatch between what patients want and what doctors do, but it is possible to receive the best of what medicine has to offer by thinking about our goals in life.
Letting go
It is not death that a man should fear but he should fear never beginning to live.
Marcus Aurelius
THE PATIENT’S SCREAMS reverberated around the intensive care unit until it was hard to fathom how such suffering could exist within the walls of a sophisticated hospital. It was impossible to focus amid the commotion and the many pained expressions that greeted it.
I found out from a nurse that a frail, bed-bound woman with dementia had developed a gangrenous foot. Her family had initially decided against an amputation, as recovery would be impossible, but when her consciousness began to falter due to sepsis, so did their determination to avoid an operation.
The family now decided that the patient should undergo surgery despite the risk. This is a common enough situation and it’s possible that sitting down with the family and absolving them of the responsibility they felt for her impending death would have allowed the patient to die peacefully. This required an explanation that there was more at stake than surviving the surgery itself, there also needed to be some measurable benefit to a cognitively impaired patient. But these negotiations take time and, faced with a deteriorating patient and an insistent family, the decision was made to amputate the septic foot and hope for the best.
The patient survived the surgery but never recovered the little function she’d had. A month later, she remained confused, visibly distressed and unable to communicate. Her background dementia worsened as a result. The intensive care unit was pierced by her cries until she was sent to the ward, where she spent another few months because the family could no longer manage her care. When she finally went home, it was with costly community supports, round-the-clock family attendance, and no insight into her situation.
For all those who met her, this poor woman was a stark representation of the lingering death we all fear, and her case prompted much soul-searching. She symbolised the worst of what happens when we are incapacitated, have not made our wishes clear beforehand, and our loved ones are hard-pressed to decide what is in our best interest.
Watching her prolonged suffering, I couldn’t help thinking back to patients and families who had succeeded in letting go when it mustn’t have been easy. The most memorable of such patients was Ali.
At just twenty-two, Ali packed in the poise and wisdom of someone thrice his age. He had arrived in hospital with abdominal pain thought to be appendicitis but emerged from surgery with a diagnosis of advanced cancer. Everyone was devastated. The surgeon, with children of her own, was clearly shaken when she told him and his parents that she could not offer a cure.
I had dreaded my first meeting with them because I rarely looked after patients as young as Ali. I didn’t know what I could say to console them but I wanted to be truthful. I said that I, along with everyone, was saddened and puzzled by Ali’s diagnosis. His illness was incurable, but I would dedicate myself to helping him live as long as possible. Ali was understandably overwhelmed and quiet while his parents had many questions, which they asked calmly and sensitively. I thought how fortunate he was to have their support.
Ali began chemotherapy but unfortunately kept running into complications that put him in hospital. After his third admission in seven months, he suggested a family meeting attended by his parents and twin sisters, which I convened with considerable trepidation. I invited a pastoral care worker and a palliative care nurse to the meeting, glad that doctors have able people to help them have difficult conversations if they only ask.
Ali was supposed to be at university, tackling things not much harder than what subjects to study and how many hours to work at his local library; instead, he was confronting the prospect of dying. How did someone so young reconcile to his fate while his grandparents were still playing golf? How could he fairly look back at his life and say he’d had enough?
As I would discover, Ali had been reading, talking and thinking about his illness and its implications all along. I watched in admiration as he capably took charge, acknowledging that the circumstances were grim, but everyone needed to talk openly.
He told us that he didn’t want further treatment for his terminal illness because it impacted his quality of life. He felt sad at missing out on future experiences with his family but was eager to make the most of his time. He believed that time well spent would reduce his regret and leave his family good memories to cherish. Some things he wanted to do included a fishing trip with his dad, a karaoke party with his siblings, and baking his favourite cake with his mother.
Until then, I had been to hundreds of meetings but had seldom seen one where I needed to do nothing except sit back and reflect on the impossible courage and equanimity of a young man. I know that the other professionals were also holding back their tears.
I had been dreading the mood in the meeting. It would have been tragic to see an outpouring of grief or, worse, conflict about the direction of care. But the way Ali spoke, with care and conviction, actually lifted the heavy mood and succeeded in energising his whole family to help him achieve what he wanted.
No one tried to dissuade him; instead, the focus shifted immediately and excitedly to getting
him out of hospital to do what he wanted. It was a beautiful thing to be a part of the concerted effort to make Ali’s last days count. His acceptance made it easier to have frank conversations with him and allowed a string of professionals to express their admiration for him and say goodbye.
Ali went home with palliative care and his mother kept in touch with the hospital. I learnt that he fulfilled his first list of wishes and moved on to a second. Not having treatment spared him its toxicity and, as he often reminded his family, allowed him to be home, the place he loved the most.
The palliative care team was invaluable in providing pastoral support and buoying the family’s spirits by praising their dedication to Ali. Ali’s family doctor had known him since he was a child – she too swallowed her sadness and dedicated herself towards helping him.
Ali’s mother reflected that, while no parent imagined losing a child, what really struck her was the family’s ability to persevere through its pain.
There were times, she said, when they were together as a family and forgot that Ali was dying. I was curious to know how this was possible when many grieving families struggled to maintain a semblance of normality in the face of death. She acknowledged that from time to time it was inevitable that they talked about events that Ali would not see, including the twins graduating, his parents’ golden wedding anniversary or the next family reunion, but mostly, they savoured the present.
She observed that the family worked hard at being stoic, mentioning their devastation coupled with the determination that Ali would die on a positive note. Her words felt like a weight on my heart because they renewed my regret, but I felt privileged to see that people of any age could work towards a better death.
Thanks to his attitude and the family’s help, Ali enjoyed his life for a few months before declining over two weeks. As he grew weaker, the activity around him slowed. Visitors were politely limited, and the family closed ranks. They kept a quiet vigil at his bedside, spoke softly and moved gently. Ali and his family were brave to the end, reminding each other to be grateful for their time together.
We are not born with a rulebook for letting go but Ali’s family learnt how. The family sat with him as he breathed his last. They had always known that his death would leave a hole in their lives and they worked through his death as through his life, with unity, forbearance and love.
Not long after Ali died, I came upon a Buddhist quote that summed up perfectly my unforgettable experience of knowing him and his family. ‘In the end only three things matter: how much you loved, how gently you lived, and how gracefully you let go of things not meant for you.’
Part 3
Advice for patients and their families
For it is in giving that we receive.
Francis of Assisi
DOCTORS ENTER MEDICINE with the aim of making a difference, and understand the need to provide holistic care, but can be let down by the constantly whirring wheels of medicine. Something that hampers my ability to care for patients is the amount of paperwork and authorisations required. While adequate documentation is necessary, the problem arises when it takes precedence over actual care. There is no substitute for talking to patients and understanding their circumstances and motivations, and a growing frustration among many health professionals is that the time to do this is lost to filling out forms to satisfy bureaucratic demands.
This problem is particularly pointed at the end of life in an institutional setting, commonly a hospital or residential care, where eighty per cent of patients die. The most important aspect of caring for the dying is to administer care and comfort and provide physical touch and emotional sustenance but even in this phase of life, the notes, forms and checklists leave surprisingly little time for the patient and even less for families. All this makes dying much less of the communal event it once was and underlines the loneliness of the experience.
For those in hospital, the changing guard of doctors and nurses is overwhelming. The average patient can expect to meet dozens of different professionals without a clear idea of who they are and what role they have. People who die at home have a variable experience depending on the availability of practical help and professional expertise. Even the most prepared patients and the most motivated families need help to navigate one of the most challenging periods in their lives.
My experience of caring for the terminally ill has attuned me to the disempowerment of patients and loved ones. They are particularly afraid of getting things wrong. Are they strong enough advocates? How can the whole family survive the process? Is it okay to grieve? What should they ask friends to do?
Years of such conversations have illuminated my understanding and shown me that learning from others can give us all the confidence to help the dying.
The following section contains advice for patients and families on how to help each other in the quest for a better death.
Handling conflict within families
If you want to change the world, go home and love your family.
Mother Teresa
JOSIP AND MARTA had been married for fifty of their seventy years. They met at age five and couldn’t remember a time without each other. Together, they had a son but Marta’s pregnancy was so complicated that she was unable to have the brood she desired. But their son was wonderful and all that they had hoped for.
In the same month as she retired from her teaching job, Marta became my patient. She hadn’t been well for a few weeks but when her breathing grew more difficult, she came to hospital. She was sent home but soon returned feeling worse. This time, she was diagnosed with advanced cancer and admitted to the ward, where I was scheduled to meet her the following day. But a concerned intern urged I should see her sooner.
That evening, I found Marta lying in bed looking very tired. Her laboured breathing was making her pale and clammy. She hadn’t eaten or slept in a few days and my first thought was that she might die during the night. Making a mental note to commend the intern, I set about making Marta comfortable with the help of an insightful nurse. Together we set up a morphine infusion and watched Marta relax as the drug took effect. But before going home, I had the heart-wrenching job of telling Marta and Josip that she might not have long to live. Marta nodded, too ill to speak. A downcast Josip pleaded with me to do my best. I sensed their unspoken question about whether her care had been delayed and truthfully told them that, while an accurate diagnosis two weeks ago would have been psychologically beneficial, it would not have altered her survival. I know how much the question gnaws at families long after a patient dies.
After forty-eight hours, Marta turned the corner. Morphine eased her breathing and she was able to speak although she was still precariously ill and not fit to receive any treatment beyond supportive measures.
In an era where modern drugs and technology keep some patients alive for years, it can be baffling for others to hear that they aren’t suitable for any treatment. But Marta had appraised her situation and concluded that she was dying and too weak to go home.
In the following days I noticed that Josip kept a constant vigil at his wife’s bedside and only went home to shower and change. Nights of sleeping in a hard chair were taking their toll on him and I became concerned at his increasingly worn look. Bad news sometimes leads to a string of visitors; I saw a few of Marta’s friends but never met her son, who I kept expecting to have many questions on behalf of his quiet parents.
‘He should come some time,’ Josip said tentatively as Marta dozed. I caught the strain in his voice.
That weekend, I slipped in to see Marta to see if her morphine infusion needed adjusting to reach a balance between symptom relief and sedation. I was gratified to hear that she felt comfortable and well cared for. Josip, meanwhile, looked haggard and sheepishly admitted to surviving on canned food.
His remark piqued my curiosity about his son’s support but I didn’t want to pry. Perhaps Josip was at the end of his tether because the next question he asked was whether he could see
a psychologist. His request caught me by surprise, and I told him that I could call for a chaplain, but he’d need to see his family doctor for more help.
‘Everyone has been so good to us,’ he said.
‘That’s because you’re easy to care for,’ the nurse just entering the room smiled.
Her remark broke his reserve. With tears flowing freely, he took out a folded letter from his wallet, handing it to me. My eyes widened as I read a stinging diatribe from the son, criticising Josip for neglecting Marta and ‘putting on a show’ in hospital. The son professed his hatred for his father, squarely blaming him for the unfolding tragedy of his mother’s death. The vitriol contained in the letter left me aghast.
As I read the letter, Josip wept with shame.
Half-awake now, Marta reached out for his hand. ‘He is angry and doesn’t know what to do.’ Overcome with emotion, she stopped but the nurse and I sensed he had more to say.
We heard about the son’s marriage breakdown and his subsequent mistrust of close relationships and descent into substance abuse. He had reacted poorly to the news about his mother and couldn’t bear to visit her in hospital. Since the diagnosis, father and son hadn’t spoken and Josip revealed he was afraid of repercussions when Marta died.
I held the letter limply in my hands, wishing Josip would tear it up. All too often, I’d seen the conflict unleashed through unguarded speech. As Marta lay dying, the son’s words had caused the kind of pain that no medicine could reverse.
Marta was deeply hurt by her son’s actions but recognised that she didn’t have time to help him, and was determined that he remember her as a mother who loved him till the end. Marta deteriorated rapidly and in her final days made the monumental decision to not see her son at all, wanting only Josip by her side.
I could scarcely imagine the wound in her heart. It was saddening for Marta to be deprived of the closure she deserved and for Josip and his son to have lost the opportunity for reconciliation. But people with close knowledge of the situation thought that Marta had acted wisely.
A Better Death Page 10