Hugh managed to write a complete draft and the family had it beautifully bound. It rested at his bedside and he told me that whenever he felt sad about dying, he thought of the book as his legacy. Hugh’s loss was forever accompanied by a sense of victory at his and his family’s extraordinary achievement.
The common thread in dying well is the capacity to find meaning in things big and small. These days, it’s common to receive treatment towards the end of life but I see that most discerning patients never invest all hope in the outcome and are deliberately mindful about quality of life, even when it means upsetting those who don’t agree. Instead of dwelling on what could go wrong, they take continuous stock of their lives. Their blessings might range from a long marriage to healthy children, a few close friends, a thriving beehive, a flourishing garden or a late-life companion. Where gratitude abounds, meaning thrives.
It’s not that their lives have no missteps or tragedy but even from these, they have learnt something about themselves or the world. One of my favourite patients recently asked me to stop her treatment. Since her divorce, she and her children had been especially close, and she was determined to attend her son’s wedding. The break allowed her to conserve enough energy to attend the ceremony with a front-row seat and enjoy much pampering. Less than twenty-four hours later, she was brought to hospital in an unconscious state. The emergency doctors couldn’t believe she had survived the wedding, but I wasn’t surprised. She had known what mattered and gone to great lengths to make it happen. Consequently, she gave her son the best wedding gift of all: her presence.
I have seen through the eyes of many patients that the things that give meaning to our lives need not be public, popular or impressive. Indeed, they should be enough to console us and our loved ones that our lives have been worthwhile. Being insistently familiar with our purpose in life doesn’t banish all regret but it cushions our falls. This is why it’s never too early to start thinking about what a meaningful life looks like for ourselves.
Forgiveness
Home is where you are loved the most and act the worst.
Marjorie Pay Hinckley
‘SHE’S GROWING THIN and her stomach pains won’t go away, so the doctor has sent her for some sort of a scan,’ reported my friend Leela, an artist who had mostly lived her life among talented, healthy people. Unused to the realm of medicine, she didn’t realise how much her words chilled me. We had gone to school together and I’d grown up watching her mother consuming cigarettes as if they were food.
Leela’s mother had an affair that led to the breakdown of an anaemic marriage. Her father moved out and found love in the arms of a very distant cousin, which proved socially excruciating. The subsequent relationship between her parents was acrimonious and volatile, and rather than dissipating with time, it got worse. To protect herself, Leela quietly distanced herself from both parents and went abroad for a few years, only to return home to a battle that had never ceased. She was aghast at the contempt she was surrounded by and often rued her dysfunctional family. Nonetheless, she strived to maintain a relationship with both parents, something that she increasingly valued after she became a parent to twins. Sadly, the relationship never achieved the harmony she was after. Leela’s closest contact was her brother but he lived in another city with his family.
Against this backdrop of stress, Leela’s mother was confirmed as having advanced cancer and I waited with dismay to see what would happen next. The news affected everyone differently. Her mother was sanguine, Leela and her brother were shocked, and their father showed no outward emotion.
Leela accompanied her mother to the oncologist, who was truthful and sensitive. He told them he would do everything possible but the chance of a sustained response to treatment was small. Leela’s mother enquired about her prognosis and when he replied between six to nine months, she was floored. Seized by a fervour to beat the odds, she began chemotherapy but most noticeable was a change in her outlook: she began taking stock of her life.
Assuming this amounted to clearing her debts and writing a will, Leela was surprised when her mother repeatedly expressed a wish to see the family together. She waited for her mother to change her tune but when she didn’t, Leela arranged lunch at her house.
Leela’s parents were meeting again after many years and it would also be the first time her mother met her ex-husband’s new partner. I winced at the disaster that could be in the making. As if reading my thoughts, Leela called me.
‘It was quite nice,’ she reported. ‘Everyone behaved well and there was genuine concern and sympathy for Mum.’
The family was so complicated that I found this fascinating. I asked about her father and she told me he’d been mostly quiet because he felt bad. He’d offered to take her mother to her appointments and she had said she’d consider it. Leela added that her mother had kept up a brave face in front of the others but when they’d left, she had clung to her and broken into sobs. Her mother had always been spirited and combative and to see another side of her was confronting. Later, Leela’s father had called her to confess his guilt that the divorce had exacerbated his ex-wife’s smoking habit. Meanwhile, Leela’s younger brother was still processing things, worried that there wasn’t the time for any fruitful reconciliation.
I sympathised with the emotional storm engulfing Leela, who after all had no preparation for handling such a complex situation. Sadly, her mother only lived six months past her diagnosis, but in those months, I was privileged to watch the profound healing that people are capable of.
The family dynamics were undeniably messy. The stress of a terminal illness can unleash people’s worse tendencies, but this was a family determined to make the last few months count.
Leela’s father voluntarily apologised for the hurt he had caused his ex-wife. Listening to, and acknowledging, his ex-wife’s remorse was also helpful. His second wife was polite but stayed out of major family discussions. Prudently, she offered neither effusive friendship nor solicitous concern but encouraged her husband to do what he needed.
Leela requested flexible working hours and attended every appointment with her mother. Her brother had a much harder time warming to their mother but supported Leela. He became her confidant as they discussed the changes in their mother, who had gone from being disillusioned and dismissive to shedding much of her judgmental side. Their conversations unearthed strong feelings and regret that they often struggled to understand. More than once Leela sighed that it would have been easier to lose their ‘other’ mother.
I saw Leela’s mother once or twice and reassured her that she was in capable hands. She told me that she was apprehensive of the future but felt secure around her family, confessing that she felt undeserving of their support. However, it was gratifying to see how their support sustained her.
I also know from my conversations with Leela what intense emotion swirled beneath the family’s newfound equilibrium. She felt cheated that just as she had gained the maturity to put the past behind her, her time with her mother had been slashed. Her brother was hurting that his future children wouldn’t get to know their grandmother and they both relived their disappointment at being let down by their parents. Compassion didn’t come naturally under those circumstances but the catharsis it brought was evident. It was impressive to watch the family put forgiveness first, because the topic comes up all too often for my patients at the end of life. Pride is an important part of our makeup but when we let pride rule us, we can’t make appropriate decisions for ourselves and those we hold dear. Misplaced pride prevents us from making amends, understanding different perspectives and meeting others in the middle. Forgiveness turns out to be a noble concept that’s difficult to implement but it’s a cause worth pursuing for its rich rewards.
It is rightly said that trust takes years to build, a moment to destroy and a lifetime to rebuild. Leela’s mother wisely understood that she could not take back her mistakes but what she got right was to graciously accept even the smallest gestures
her family made. Whereas she would previously have thumbed her nose at a regular lunch or a nightly phone call, now she welcomed it. Her genuine remorse fuelled her motivation to change what she could in her limited time. The hardest and most significant thing she did was to sit down with both her children to explain aspects of her conduct that had hurt them and ask for their forgiveness. Leela described this as the most powerful amend she made and the most consoling memory.
Before Leela’s mother died, the siblings spent weeks caring for her at home, something they did not foresee at her diagnosis. Although those weeks could not replace lost time, they were therapeutic and memorable. Her relationship with her ex-husband was cordial without being cloying. She acknowledged his pain, described hers and openly forgave him. To hear her say this was a turning point in his life opened the way for them to discuss their hopes for their children and grandchildren, a meaningful rite of passage.
The last time I saw Leela’s mother, she looked tired, but I thought that her tumultuous life had moved to a calmer place. She had fulfilled some personal wishes and reconciled with the most important people in her life, her family. Her contentment was mixed with humility, as if she accepted responsibility for some actions.
I was inspired to see that a difficult road had led to a hopeful future. At her funeral, there was sadness but also recognition that our lives can be enriched by forgiveness and reconciliation.
It has been eye-opening for me to see that the way we treat each other is critical to dying well. Death is insufficient to erase our reservations about a fraught marriage, a tense friendship or a broken bond; unresolved tensions cause enduring harm. Leela’s family shows us that the power to forgive ourselves, forgive others and repair relationships lies within us all. When confronted by troubled relationships at the end of life, we might try to remember that the wounds of love are best healed by those who made them.
Equanimity
Equanimity is calamity’s medicine.
Publilius Syrus
OF ALL THE QUALITIES I observe in my patients, I’m most attracted to equanimity; that calmness and composure some people demonstrate, especially in difficult situations. Equanimity interests me because I routinely see how people who acquit themselves with calm fare better in almost every walk of life and, unsurprisingly, in death. The capacity to retreat into an inner sanctum of calm is one of the greatest gifts we can hope to possess amid the hype of medicine and the noise of life.
Occasional unruly emotions and disorganised thoughts are common at the end of life, but if they become persistent, they can be very troubling for the patient and taxing for caregivers. A common worry of many terminally ill patients focuses on a specific subject: how to avoid dying. In turn, this translates into a very difficult question for doctors: what can medicine do to prevent death? To face the finality of death is no ordinary task even for the most prepared among us, but the task is much harder when we are primed by circumstances for most of our lives to deny the thought of death.
We are all influenced by the breathless media reports of miracles and breakthroughs that paint death as the ultimate failure. Uncertain how to handle the topic, we shield our children from it and avoid discussing it with our friends. Even in a workplace like mine, where death might be thought to feature openly, it mostly isn’t. We spend our lives curiously, knowing that everyone dies but unable to draw closer to our own mortality. Partly, this is necessary, for if we were to continuously dwell on death, we would not achieve much in life. However, failing to reckon at all with our mortality risks living a life devoid of meaning. But with its seemingly unlimited offer of drugs and interventions, combined with a reluctance to view our lives as limited, modern medicine makes equanimity in death harder than ever.
If the duty of a doctor goes beyond diagnosing and prescribing and encompasses the task of helping people live and die well, by far the most challenging part of my job is addressing the existential distress of patients who cannot accept that they are dying. If their fears can be resolved, it feels like time well spent. If they are not, the disquiet is very hard to shake. Perhaps this is why it’s easy to be drawn to patients who are composed, even poised, about their death. Among doctors, nurses, and even other patients, they are regarded with respect and awe because I think we all wish we could be like them.
Paul was in his fifties when he was diagnosed with lung cancer. There is such stigma attached to the diagnosis that he took pains to reassure me that he had never touched a cigarette in his life. I believed him and saw the unfairness through his eyes.
Sometimes a moment becomes frozen in our mind – it was like this at my first meeting with Paul. I remember the room and the bed he was in and how he leant towards one side because his other side hurt. He had arrived the night before with pain thought to be related to kidney stones but a short while later scan results would devastate him and his wife, Laura. Cancer dotted his spine – the excruciating pain in his side had nothing to do with stones but widespread bone metastases. But where had they come from? Paul had to endure another wait before tests confirmed him to have advanced lung cancer.
Fit, healthy and at the peak of his career, Paul was stunned by the diagnosis and thought there must be a mistake.
‘I don’t smoke,’ he frowned.
‘I know, but some non-smokers develop lung cancer too,’ I sympathised, feeling as hollow as my explanation.
Laura sat at Paul’s feet on the narrow bed as they listened carefully to the new language of cancer. His tumour profile meant that he could be spared chemotherapy in favor of a pill, which had fewer side effects.
‘I’ll follow your instructions to the letter,’ Paul promised.
‘We’re putting our faith in you, doctor,’ Laura pleaded.
Their world had been upturned in twenty-four hours, but they were calm on the exterior.
From that day on, Paul kept his word despite all the ups and downs. He responded very well to treatment; the cancer shrank and his pains eased, lifting all our spirits. I fervently hoped that the medication would see him through to a time when even better drugs became available. With cancer medicine moving at breakneck speed, new and effective treatments are announced regularly.
For nearly eight months, Paul stayed largely well and worked full-time. Occasionally, he had pain, nausea and insomnia as well as an angry rash but in all the time I knew him he never once complained about his fate. He intuitively appreciated that he was better off than many others and drew a certain consolation from this.
Paul was an experienced migration professional who took pride in helping people navigate the complexities of the migration process. A migrant himself, he understood the stress and emotion involved and took great care to accompany people on the journey. He once told me that although our jobs differed, people also came to him with hope and it was his duty to treat them with compassion. I was moved by the comparison and not at all surprised to hear about Paul’s popularity at work.
The hardest thing about looking after people who are adored by family and colleagues alike is getting to know them well while knowing that their reprieve will have an end. When Paul’s pain re-surfaced and he complained of feeling weak, my fears of disease progression were confirmed. Paul took the news with his customary equanimity and asked what was next.
By a stroke of luck, a brand-new pill became available, whose efficacy looked extremely promising. I grasped at the thought of extending Paul’s life by another year or more, which might sound bleak unless one realised that the average life expectancy in advanced lung cancer is measured in months.
My enthusiasm doubled when another oncologist marvelled how the drug had melted away his patient’s disease. With a bow to modern medicine, I told Paul about the drug.
Since I had always been honest with him, I made it clear that it wouldn’t cure him but hopefully would keep his disease at bay for many months.
‘I trust you,’ he simply said. ‘I know you’ll do your best.’
His words would follow
me for the rest of his life.
I would have doubted it had I not seen it myself, but almost overnight his pain vanished and he felt better. The emotional release of such unexpected results is indescribable.
I will never forget the memory of an ecstatic Paul and a relieved Laura sharing my hope that the drug would work as long as it took for something even better to arrive. I encouraged them to make plans that they had kept putting on hold.
And then, as suddenly as it had started to work, within weeks the tide turned. Paul came to hospital feeling weak and tired and his condition kept deteriorating. Doctors, including me, racked their brains until it became obvious that the drug had stopped working and Paul was dying. Paul and I talked daily during this time. He asked questions to refine his understanding, but never expressed frustration, anger or doubt about what was happening to him. My own mind was in knots those days, desperately wondering where I went wrong – Paul’s composure was as reassuring as it was inspiring.
There were many tears shed on the day Paul went into hospice. He went there willingly and died in the presence of his large extended family and his loyal dog.
A Better Death Page 5