Finally, there is no ‘best’ opioid – ultimately what matters is taking a drug that works, is safe, and provides a sense of control.
Pain relief is an inexact science and an area of medicine that suffers from underinvestment. As a specialty it has gained prominence only in the last few decades; consequently, many doctors have the intention but not the training to help their most complex patients including those at the end of life. But since pain can be so onerous, distressing and disabling, we all deserve better.
While physical pain is evident, there is a category of pain even harder to treat: existential distress.
Uncertainty, anxiety and depression at the end of life are common and have a detrimental effect on patients and their caregivers. Patients with unresolved existential distress frequently experience reduced trust in their doctor, which makes it difficult for them to share their deepest concerns. Prolonged lack of engagement can lead to a poor end-of-life experience.
We all have a role to play in recognising and managing existential distress as it is an important part of dying well. Individual therapy, group counselling, cognitive behavioural therapy and, in some instances, prescription medication play a role in alleviating emotional distress.
We might wonder if the prospect of death isn’t naturally depressing for everyone but I’ve learnt this isn’t true. Many dying patients, young and old, express satisfaction with the life they have led and have reconciled to the things they were unable to do. They have accepted their mortality as an inalterable fact of life; instead of begrudging the inevitable, they’ve slowed down and focused on making the most of their time. This has buoyed their spirits and aided others in the journey.
Pain – physical or existential – does not have to be unquestionable or untreatable. We deserve to die with dignity and comfort and should never be afraid to demand this for ourselves and our loved ones.
What to do about denial
For life and death are one even as the river and sea are one.
Khalil Gibran
I HAD HEARD MANY STORIES about denial, but received my first taste of it when a patient lodged a complaint about me for telling her the truth that she had demanded to know about her terminal illness. Her complaint rattled my confidence and left me questioning the duty of a doctor ever since.
Julia was a woman in her fifties, diagnosed with advanced lung cancer at a time when there were few good treatments. The chemotherapy prescribed by her oncologist had helped her briefly but now she was in hospital with a serious complication of her disease known as spinal cord compression. She had been experiencing several days of leg weakness and stumbling, but when she suddenly became incontinent, she was alarmed.
Scans found extensive tumour pressing on her spinal cord, the control centre of the nervous system. The tumour was inoperable and it was doubtful that any other treatment would reverse the progressive paralysis that had developed from her waist down.
I met Julia for the first time the morning after the tests. One of the hardest situations for any doctor is to reveal bad news at the first encounter. But the worse the news the greater the imperative for disclosure – patients deserve to know the truth.
Introducing myself as an oncologist, I asked if she had pain.
‘I’m comfortable,’ she replied, ‘but I’d really like to know how long I’ve got.’
Everyone agrees that, ideally, this conversation is best had with a doctor who has a history with the patient, who has travelled the ups and downs and knows not only the course of the illness but the social and emotional context within which the illness has unfolded. But her oncologist wasn’t prepared to travel for what he deemed a foreseeable complication of her condition. He didn’t offer to speak to Julia, didn’t return her calls and she was in no fit state to travel to him. It was frustrating, but I confined myself to helping Julia rather than guessing at her oncologist’s motivations.
Cancer patients with spinal cord compression are among those with the poorest prognosis. Due to the lack of movement or sensation in her legs, Julia was confined to bed and had the beginnings of pneumonia. Any infection involving her already compromised lungs did not bode well.
I silently took stock of all the news I needed to convey to Julia, and her husband, Hugh, to help them make decisions in her best interest. When we met, they seemed prepared to hear the bad news they’d probably been expecting since her diagnosis. I had started explaining the futility of further chemotherapy when Julia interrupted: ‘Can you tell me if I will live until Christmas?’
I remember gazing outside at the crisp June morning at the usual rush of cars and pedestrians in front of the hospital. Did Julia have another six months to live? Would she recover from this catastrophe and be like one of the other patients I could spot going in and out of the hospital?
My heart said please, let it be so, but my gut instinct said no. Doctors aren’t soothsayers and one of the most humbling things about medicine is how often we get things wrong but, based on the evidence before me, I had to let Julia know what I thought.
So I told her that while I hoped she’d prove me wrong, I couldn’t be sure she would survive until Christmas and consequently, we should discuss her goals. Julia frowned, and I held my breath at the revelation of a birth or wedding or some immovable event. But she said her main aim was to organise Christmas gifts for her three adult children and plan a lunch with her extended family. This was achievable and, for the next half hour, we discussed how to prepare for what lay ahead. She mentioned writing notes and calling her friends. Hugh wanted to take her away. They both agreed to meet the palliative care nurse. In fact, our conversation took on such a positive energy that I was impressed by the couple’s resilience under the most testing circumstances.
As I left, Julia and Hugh thanked me tearfully for the most honest and helpful conversation they’d had during her entire illness; one that would now help inform several important decisions. Undeserving as I felt of their praise, I couldn’t have asked for a better outcome.
So, nothing could have prepared me for the reception next morning when a senior nurse approached me to say that, hours after our conversation, Julia had filed a complaint about my conduct, alleging that I had inflicted extreme distress on the entire family by discussing her prognosis. I was dumbfounded.
The nurse reflected that Julia was in denial and best given some privacy although the irony didn’t escape me that the nurse had chosen to stop me in the middle of the busiest thoroughfare where I was surrounded by medical students and residents, all of whom had witnessed my indictment.
Despite my roiling sentiments, my first instinct was to apologise to Julia, thinking that the antidote to her vehement reaction was to approach her with kindness. But to my horror, Julia had banned me from her bedside. My humiliation felt complete but, putting on a brave face, I told my team that such setbacks were part of one’s career and they shouldn’t dissuade us from doing the right thing.
Not only did Julia refuse to see me but she also turned away other doctors and discharged herself from hospital. I discovered later that she’d apparently never understood from her oncologist that she had a terminal illness, although he refuted this.
Julia’s public outburst prompted widespread dismay and soul-searching amongst professionals. A nurse who’d witnessed my exchange with Julia and Hugh consoled me that I’d done nothing wrong. A junior doctor said she’d lost the courage to raise such a sensitive subject with the next patient. I kept replaying the scene in my mind, wondering what I could have done differently.
The palliative care team stepped in to help, but she was determined to prove everyone wrong. Out of respect, I didn’t contact Julia again, but I heard that she died within some weeks of going home. It must have been a particularly difficult time for Hugh and her children, who had to manage on their own.
Many years on, I remember the incident as if it happened yesterday. I hate to think that my words were ultimately responsible for a patient’s suffering and a family’s
consternation and even now the prospect of a family meeting to discuss prognosis makes me pause.
Every year I meet a few extremely ill patients engaged in circular conversations about their mortality. They can’t believe there’s no reasonable treatment left for their illness and insist on a solution. Multiple family conferences explore their deterioration but fail to produce insights. These patients are exhausted in body but resistant in their mind. Consequently, many feel chronically dissatisfied and restless, waiting for medicine to propose a solution.
Denial at the end of life is a problem that impacts everyone who encounters it. It’s said to arise from misinformation, misunderstanding and a lack of communication between doctors and patients. All this is true, but my experience of patients in denial have taught me something else. With enough humility and insight, the errors of communication can be corrected, information gaps can be plugged and understanding reached. But what no one can touch is the resolute denial that resides within people, and which refuses to acknowledge that we are all mortal. This type of denial involves fear, sadness and panic, but at its core is a failure to have thought about life as a gift – and an ephemeral one at that. Helping people overcome denial is the most challenging aspect of caring for the dying.
It’s instructive being a doctor to these patients. While they are hard to satisfy, the challenges their professionals face pale in comparison to the stress endured by their loved ones. Their caregivers deserve sympathy because, although they might appreciate the truth, they are frequently reduced to being hapless bystanders. It takes great patience and love to look beyond their frustrations and accord the individual dignity and respect.
What I have learnt is that strong denial never goes away in one grand leap of realisation. Instead, it requires a series of small steps.
Many times, denial dissipates as a patient confronts unavoidable realities such as growing fatigue and disability. But sometimes, denial actually demands graceful acceptance on the part of the rest of us. We don’t stop caring but we stop feeling bad about the situation.
Medicine has a long way to go towards helping patients in denial. But I can’t help thinking that ultimately this is a task that belongs intimately to every one of us. It’s never too early to learn that we have a limited life in which to give and receive. A child needs to know why a grandparent is dying. An adolescent must make sense of the death of a parent. When elders bury their young, and the natural order of things feels disrupted, we should mourn with them but also acknowledge the universality of death. This is how all of us, young and old, can accept our mortality.
Confucius said that we have two lives, the second of which begins when we realise we only have one. Two thousand years later psychiatrist Elisabeth Kübler-Ross reflected that ‘It is the denial of death that is partially responsible for people living empty, purposeless lives; for when you live as if you’ll live forever, it becomes too easy to postpone the things you know that you must do.’
Perhaps it’s by blending ancient wisdom with modern perspective that each one of us can define for ourselves what it means to live well and die well.
Dealing with a sudden death
Let us endeavour so to live that when we come to die even the undertaker will be sorry.
Mark Twain
BEING AN INTERN for a year in a large hospital is a lesson in hard work performed in virtual anonymity. An intern is expected to quietly follow the rules, avoid controversy and generally shun the limelight. Like all interns, I became used to being at the back of the herd of doctors at the bedside each day, dutifully recording the specialist’s instructions. Busy specialists operate through a hierarchy: they mainly talk to the fellow, who briefs the senior resident, who manages the junior resident, who works with the intern. An intern may have very little direct communication with the specialist and being so far removed from the real decision-making can be an almost innocuous experience were it not for the responsibility one feels as even the most junior member of the team.
That’s why I nearly jumped out of my skin when, the next year, I became a junior resident and was assigned to work with a prominent specialist who greeted me by my full name and shook my hand. While I furiously searched my brain for a reason he would know me, he pleasantly reminded me that we had met when I had dropped in to see patients in the intensive care unit where he worked. He always remembered names, he said. He sounded genuine, but I was dubious that he could file away hundreds of names and associations just like that.
But Ramesh would soon prove me wrong. On one of our first medical ward rounds together, an elderly, sleep-deprived patient was so startled by our presence that she dropped her orange juice, which bounced off her tray and landed on the floor, but not before collecting Ramesh’s pressed suit.
The other doctors reflexively jumped out of the way but he calmly retrieved the empty tub, reassured the mortified patient, alerted the cleaner and continued the round without missing a beat. Some hours later, I returned to write my notes and found the cleaner at the desk. With tears in her eyes, she related that in twenty years, many specialists had summoned her help, but none had known her name.
‘It’s because no one thinks I’m important.’
Her remark is etched in my memory because I think she was right.
Ramesh turned out to be one of the nicest doctors I ever worked with. He was blessed with erudition and etiquette. In a deep and sonorous voice that had once graced the cricket commentary, he conducted bedside and teaching rounds that left a mark on doctors and patients. In matters of respect and collegiality, he didn’t distinguish between a top surgeon and a student nurse; in conversation, he could skilfully explain a concept to a puzzled patient and provide a scientific explanation to the keen doctor. To those who knew him, he epitomised good medicine.
Ramesh was an intensive care specialist and I was training to become an oncologist, leading to a professional parting, and it would have been rather easy to lose touch had he not been an early and enthusiastic advocate of my writings on the intersection of humanity with medicine. A great believer in compassion and empathy in dealings with patients, he was frequently found debating the meaning of medicine with young doctors. He also wrote eloquently, so as I embarked on my writing career, few things brought me more joy than a handwritten note from him.
Ramesh mentored me through my early years of training, saw me become an oncologist, consoled me when I lost a late-term twin pregnancy, celebrated my newborn children, read my early drafts, commended my books, and invited me to speak about the art of medicine at the conferences he organised. He once told me that his favorite part of the conference was watching young doctors prosper, as it meant his job was done. But I think for many in the audience, the most memorable part of every conference was the tribute he insisted on paying the hard-working kitchen staff, who were brought out to a standing ovation. This was a man who saw the best in everyone.
In an all-consuming career, Ramesh was fortunate to have an extremely capable and patient wife who’d willingly given up her own career in medicine to support their children. As we became busier, Ramesh and I spoke and emailed more than we met. In his early fifties, he felt pulled in many directions but was beginning to realise the need to slow down and spend more time at home.
I had just finished seeing the last patient of the morning, a pleasant eighty-year-old man who’d recovered well from surgery and left me thinking gladly about some of the wonders of modern medicine, when there was a knock on my door. A doctor had dropped in to say hello.
‘You don’t know?’ he asked
‘Know what?’
‘Ramesh died an hour ago.’
I thought I’d misheard him, or he was talking about someone I didn’t know.
‘What did you say?’
‘Ramesh suffered a cardiac arrest this morning and couldn’t be revived.’
Looking at the disbelief on my face, the poor doctor added, ‘I’m really sorry, I thought you’d be one of the first to know.’
> But I was still reeling from the news. An arrest, yes, but had Ramesh actually died? Perhaps people were still working on him.
‘Is it a rumour?’
‘No, I spoke to a doctor who was there. He couldn’t be saved.’
I took a deep breath to calm myself and declared that I had to see Ramesh myself.
My hands were on the steering wheel, but my mind felt numb as I mechanically drove the familiar route. Reaching the hospital, I rushed to the cardiac unit and spotted his wife standing forlornly outside a single room.
Ramesh’s body lay on a narrow white bed, his expression as serene as if he were asleep. His hands felt warm, his complexion had yet to take on the greyness of death. There was not a single sign of the grim fight to keep him alive, involving every expert at hand. I sat beside him, robbed of speech and thought, just one word ricocheting in my head: ‘Why?’
Aware of the health risks of a middle-aged man, he had undergone a normal cardiac workup just weeks ago. That morning, he had been getting ready for work when he experienced mild chest pain. Reassured by his recent health clearance, he nevertheless decided to get checked. His wife offered to take him to the nearby hospital where he was scheduled to work.
They assumed he’d be fine and conduct his ward round there but what happened next would turn into a recurring nightmare.
Nearly at the hospital, Ramesh slumped in his seat. His doctor wife had to make the unenviable decision between stopping on the freeway and driving another few minutes, and decided to keep driving. Minutes later, the emergency department leapt into action and experts flooded in to try every known intervention. But according to the person whose hands ached from performing prolonged chest compressions, Ramesh had sustained such a massive cardiac arrest that he never had a chance. Following three hours of non-stop effort and an unimaginably emotional ordeal, the very doctors who called Ramesh a colleague and friend had to admit defeat and pronounce him dead. The people preparing to do a round with him that morning had to make room for his lifeless body, write his death certificate, and still carry on with the work of looking after their other patients. That day and the ensuing days and weeks would be some of their worst. As for the family, their trauma had just begun.
A Better Death Page 16