His doctor tactfully persuaded him to take a family holiday that he’d intended in the distant future. This turned out to be so enjoyable that it helped Andy concede he had an obligation to his family to help them cope with his illness. The ensuing relief opened his eyes to the silent grief that had been building around him and eventually opened the door to palliative care.
For the first time during his illness, he found a way to talk openly to his family, record memories for his children and wrap up his large business, which his wife had dreaded inheriting.
Like many young patients, Andy held on until late and then deteriorated rapidly, surprising everyone. I had often wondered how I’d go about managing his end-of-life care but the gentle perseverance of his family doctor and her rigorous emphasis on the whole family’s welfare ensured that Andy accepted hospice and died there just days after admission. But thankfully, the family had come a long way by then.
The role of the hospital ended with Andy’s death, but Mellie and her children benefited from community bereavement support and the ongoing involvement of a family doctor who’d accompanied them on an arduous journey. The doctor modestly said she’d played an ancillary role in tackling a great challenge but her involvement had been crucial in allowing Andy to experience a better death and smooth his family’s path to recovery.
Apart from their daily work of preventing and treating illness, family doctors serve as a vital sounding board and I recommend that every patient find a good family doctor.
In an era of fast medicine, there’s a noticeable divide. Many older patients have an established relationship with their doctor but younger people tend to go to rapid-service clinics lacking a fixed provider. A transactional relationship might work in the case of a common virus or a pulled muscle, but it lets us down when we face a deeper issue that demands time, engagement and a knowledge of the person behind the disease.
We’re better served by not relying on hospitals to meet all our healthcare needs – this is why I urge patients to find a family doctor they can trust. Distance to the doctor’s office and the language spoken by the doctor are important considerations at the end of life. As the first contact for community providers, the family doctor must also feel comfortable managing terminal illness.
Family doctors are committed to community-based care and want to help their patients die well. However, a lack of communication between specialists and family doctors can hamper this. A practical way to ensure that the family doctor is up to date is to request printed information at specialist visits and keep a file. In the case of unfolding diagnoses, sequential information can be extremely valuable.
A trusted relationship with a family doctor is desirable at any stage but it can transform our experience at the end of life. Confidence and control are ideas seldom associated with dying but we increase our chance of both by building a good relationship with our family doctor while we are well.
Planning ahead
Live as if you were to die tomorrow; learn as if you were to live forever.
Mahatma Gandhi
‘WHAT KIND OF A funeral do you think she would have wanted?’
The question took me completely by surprise.
I don’t know, I thought to myself. Should I know?
Victoria had been my patient for ten years. During this time, I had grown fond of her and could recount almost every detail of her journey. I could remember how I’d broken the news of disease progression, how she’d reacted, and how I’d studiously avoided agreeing with her on the miracles others kept mentioning. We weren’t chasing miracles, I’d gently tell her, just good medicine and compassionate care.
Four months short of turning fifty, she was determined to celebrate her birthday in style although her body had been weakened by the ravages of disease. I told her honestly that having further chemotherapy would outweigh any benefit and, in the worst case, might even prevent her from reaching her milestone birthday. She replied that fifty was just half of where she intended to be.
Victoria turned fifty amid great fanfare and when I thumbed through the photos with genuine interest, I saw that it meant more to her than all the drugs I’d prescribed.
I was happy for her and thankful for her sister, Lisa, who had stepped down from a professional role to look after her. Lisa was curious, sensible and possessed of a calm that ably countered Victoria’s anxiety.
At the end of every consultation, it’s my habit to ask patients if there’s anything else they wish to discuss – I often wished that Victoria would see fit to ask about her future, but all she ever requested was a copy of her results and an update on new therapies.
I was delighted when she once asked if she could fly abroad to visit an elderly aunt who had brought her up. Since I’d expressed increasing concern about her health, I thought perhaps she too was beginning to accept the situation. As I encouraged her to take a break from treatment and travel while she could, I hoped Lisa would throw in her support. Then I remembered that Lisa never intruded, as if she was determined to limit her role to supporting Victoria but not offering her opinion.
Victoria disliked making decisions; consequently, most things happened to her by default. However, as she neared the end of life, I wished her to make informed and deliberate decisions to help her live thoughtfully and die well. After debating the matter for three weeks, Victoria was unable to decide on travel and continued treatment. I fretted that I had fallen short of communicating her poor prognosis but all I could do was leave the door open for dialogue.
Sometime later, Victoria began losing her balance. She attributed it to her sleeping pills, but I gently revealed my suspicion of brain metastases. Indeed, an urgent scan confirmed my suspicion, but Victoria completely surprised me by saying she didn’t want me to tell her the result at all. Usually, I support the right of patients to know as much or as little as they desire, but in this instance, I knew that a lack of disclosure would lead to uninformed decisions.
These issues present a real dilemma for doctors. With a patient’s assent, family members can play an important role in easing fear and tackling avoidance. Lisa, however, showed no such inclination and while I acknowledged her regard for Victoria’s autonomy, I regretted its consequence.
But it actually never struck me that a series of events, which included Victoria’s visible decline, my decision to halt treatment, her idea to stop attending clinic, and the increased involvement of the palliative care team, would not add up to the fact for either sister that Victoria was terminally ill.
Then she died suddenly one night from a brain haemorrhage, and it was the morning after this that Lisa called me, asking my advice on Victoria’s funeral.
‘I just don’t know what she’d have wanted,’ she cried.
I was simply floored. Despite being so close, the sisters had never discussed this and, while it would have been a difficult conversation to have, Lisa’s genuine bewilderment now was no less heart-wrenching.
I was dismayed to watch Lisa go about the task of arranging the funeral, having to contend with her own loss and the tricky logistics. Lisa felt alienated from Victoria’s church, which she thought had aggressively distracted her from the idea of death. There was no private note or will, and Victoria’s closest friends were not any wiser to her intimate wishes. I felt embarrassed that, despite countless visits, I was in the same boat.
Engulfed in sorrow and experiencing a touch of resentment, Lisa spent days arranging a funeral service befitting her sister. Taking her responsibility seriously, she trawled through archives, letters and personal effects to discover Victoria’s core beliefs. I attended the funeral to pay my respects and was impressed by her effort but it was obvious to see the substantial emotional burden Lisa had to shoulder alone. From the stories of others, I imagined she would have a long journey to recovery.
To this day, I grapple with how complicated Victoria’s death was despite the many years leading up to it, and what I could have done better. Unfortunately, her story matches t
hose of many patients.
It’s in our nature to avoid upsetting the people we love – and love commonly accompanies denial. But I have learnt that when we spend our entire lives without ever contemplating our mortality and giving our loved ones a window into our thoughts and desires, we risk leaving them a burdensome legacy.
The bereaved are left to wrestle with poignant questions. Did they miss saying something? Could they have done better? Did they do the deceased justice?
Victoria’s death should be a cautionary tale for us all. Not even the most well-intentioned and caring professional can compel us to dwell on their mortality and most professionals would rather avoid the issue too. Therefore, ultimately, this is a task that falls to the individual.
To care about our loved ones means thinking about the toll that our death will exact on them and help them prepare as best as they can.
Some of my patients have movingly taken care of the smallest detail, such as clearing their wardrobe and donating their belongings, but at least, we owe it those left behind to mourn us without anxiety and second thoughts.
What would we want in the twilight of our life? What matters most? What might be our legacy? Such questions should empower us to lead our life deliberately. If not for our own sake, we must answer them for the sake of those who love us and who don’t deserve the heartache of doubt after the first heartache of their loss.
The pros and cons of clinical trials
Dum spiro, spero.
While I breathe, I hope.
Saint Andrew
CLINICAL TRIALS may seem an odd thing to mention in a book about dying well, but judging by the number of people I meet who hold out hope for a trial before dying, they are worth discussing. While we commonly hear of clinical trials in the context of cancer, they exist for all sorts of conditions – from insomnia and migraines to diabetes and stroke. Doctors suggest enrolling in a clinical trial when conventional options don’t exist or have been exhausted. Trials are also used to study therapies that have shown promise in the lab but require more evidence before being approved for common use.
It was through clinical trials that we learnt about the importance of administering aspirin during a heart attack and how to limit brain damage after a stroke. It’s how we got better at treating asthma, anaphylaxis and diabetes and how we found that strong drugs like morphine cause more harm than good in conditions such as chronic back pain.
Clinical trials have also shown us that drugs cannot reverse dementia, antibiotics don’t work against viruses, the removal of a cancerous breast lump is as effective as a mastectomy and some cases of appendicitis can be managed without an operation. In my own field of oncology, there isn’t a week that goes by without the report of a promising clinical trial to ease the burden of cancer sufferers.
The knowledge gained from clinical trials betters millions of lives, which is why doctors, advocacy organisations and patients clamour for access to trials. Indeed, we ought to be indebted to all trial participants for advancing the cause of patients all over the world.
However, the fact is that less than five per cent of the patient population enrols in trials and most seriously ill people or those at the end of life are ineligible due to stringent qualifying criteria, geographical location, or other intensive logistics. Yet I can’t help but notice that the incentive to participate in a trial is never greater than when life is nearing its end and there is a deep urge to extend it. As an oncologist, I have a front seat to the phenomenon, and I believe that the lessons from patients enrolled in cancer clinical trials hold meaning for many of us.
First, a brief explanation.
Early-stage trials (Phase 1 and 2) run over several months to a few years and are designed to determine whether a drug is safe in humans, what dose works and what are the side effects. These trials establish basic knowledge about a drug, with approximately a third of early phase trials progressing to the next phase.
Late-stage (Phase 3) trials take several years to complete and study how the trial drug compares to the existing standard of care. Between a quarter to a third of drugs move to Phase 4, where the drug’s safety and efficacy is monitored in volunteers who have the condition.
One way of accessing therapies not yet approved by regulatory bodies for widespread use is by enrolling in a clinical trial.
Medicine advances on the shoulders of trials. Participants usually gain the advantage of close monitoring and are the first to enjoy any benefits. It is gratifying to see patients with little option respond to an experimental therapy. Depending on the circumstances, some can remain well for a long time while others succumb to their illness quickly.
The evidence shows that there is poor understanding of the entire clinical trials process but especially the reason to enrol in one. Researchers take pains to explain that trials are fact-finding missions. The vast majority of drugs that appear promising in early-phase trials fail to get to market; less than five per cent are eventually approved. Late-phase trials don’t help everyone gain quality or quantity of life. Participants might benefit but they’re mainly laying the foundation for future patients by helping refine our understanding of disease.
Like most doctors who want to help their patients, I welcome the availability of clinical trials. Unfortunately, there is a gulf of understanding between what doctors know and what patients think. In my own experience, patients enrolling in clinical trials widely believe, or hope, that the trial drug will provide a cure, or at the very least meaningfully extend life. Consequently, when serious side effects erode quality of life, patients and their loved ones can feel very let down. Expectations gone awry can inject uncertainty into the dying process and make it more complicated.
Nisha worked at a grocery I used to frequent on my way to work. She’d cheerfully pick out the freshest produce for me as we exchanged hurried pleasantries. Nisha had great regard for my work because some of her friends were undergoing cancer treatment. I used to marvel at her ability to run a business and yet find the time to care deeply about the people in her life. When economics forced the closure of her shop, I missed our short chats. Years later, I was taken aback to see her on a hospital ward round. Her face lit up at our unexpected encounter but it took all my effort to suppress my alarm. Her gown half open to reveal her gaunt frame, she was struggling to manoeuvre her IV pole to get to the bathroom and collapsed at the edge of the bed to catch her breath. I could barely reconcile the image with that of the woman who used to greet me every morning.
I discovered that she’d been undergoing cancer treatment for two years at a different hospital. Her oncologist had put her on a ‘last-ditch’ drug, which kept making her sick; she was spending a lot of time in hospital, where blood transfusions and antibiotics did nothing.
Given the visible extent of illness and the poor progress she was describing, I knew she didn’t have long to live. Clutching her side in discomfort, she said, ‘But if this treatment doesn’t work, I’m waiting to go on a clinical trial. And if they don’t take me, I’ll sell the house because I’ve heard good things about the drug.’ With this, my dismay was complete.
I knew that she had a family who would never recover from the financial stress of funding a drug that was still undergoing testing. Nisha wasn’t my patient, but I felt protective of her.
She asked me what I thought of her situation. Sitting down beside her, I replied truthfully that she looked unwell and that, before making any significant decisions, she should talk to her long-term oncologist. I couldn’t imagine him recommending she sell the family home, but I also hoped that he’d broach the issue of her mortality, which she seemed unaware of.
I gently proposed that sometimes the best option was to accept one’s illness and focus on quality of life. In her case, this meant getting home with palliative care, having home oxygen, and adequate pain relief. She brightened at the thought of going home but felt helpless to make it happen.
‘I’ll probably die here.’
I promised to spea
k to her doctors and she thanked me.
As she held my hand, I couldn’t help but notice hers, pockmarked by attempts at intravenous lines.
Afterwards, my day felt overcast as I mulled over things. How could Nisha feel helpless in the very system meant to help? How much responsibility lay with her oncologist who didn’t want her to give up? Was she one of the ‘fighters’ who couldn’t bear to face reality? Or did she have a family who believed that modern medicine had an antidote to every ill?
In all likelihood, it was a bit of each.
Not long afterwards, Nisha died. Overcome with sadness, I called her husband and learnt that she’d managed to get home for two weeks. Admiring her courage, he lamented her inability to have the trial drug. It felt ironic to reassure him that she’d never have qualified for a trial and that there was no evidence that the drug would’ve extended her life.
‘Not even by a year or two?’ he asked hopefully.
My heart sank at the wildly unrealistic estimation. Nisha had been looking to join a Phase 1 trial, the type that investigates whether a drug works at all. But his words were a testament to the desperation patients feel.
‘I’m afraid not,’ I replied, moved by the guilt he must have been harbouring.
Reflecting on how ill she’d been, he conceded that the last few months of her life would have been calmer had they known that she was dying. Despite being only fifty, she would have opted to stop treatment and cherish her time at home. His words were a reminder that when discussing the benefits and risks of a clinical trial, doctors must be constantly vigilant about discussing life expectancy.
While Nisha was dying, someone I knew with a rare autoimmune disease did manage to enrol in a clinical trial. Vince was an artist who saw his life being slowly compromised by severe fatigue, joint pain and reduced social engagement. After receiving just one dose of the experimental drug, he reported new symptoms. The next few doses exaggerated his troubles and the drug was stopped, but not before it left him with profound nerve damage, chronic pain and, worst of all, an inability to paint. As his outside interests were curtailed, painting had filled many empty hours, but now he could no longer hold a paintbrush.
A Better Death Page 14