Knowing when it’s a time to die

MANY years ago, a medical oncologist and I reported how we ran a combined clinic to teach medical students about care and support for the chronically ill. While we recorded benefits from our program for both students and patients involved, as I age, I wonder if another area is still insufficiently dealt with in our current student preparation for medical practice.

I think many young people who choose medicine as a lifetime occupation do so as part of a dream of fighting disease, prolonging life and even challenging death itself. As we age and acquire clinical experience, we begin to discover there are limitations to our expertise, despite our growing ability to help heal the sick and save lives. I have written about how I feel accompanied on my passage through life by my past patients, who share my journey, like friendly ghosts, reminding me how much I have learned from them but, in particular, pointing out my past mistakes so I don’t repeat them. I realise now, as time passes, possibly more importantly they also teach me about dying as well as living.

I remember a 50-year-old gentleman with diabetes and vascular disease whom I had treated for a long time. When we first met, he declared with cheerful bravado: “Just you keep me going to 60 years of age and I don’t care if I die the next day”. I smiled and said, “Okay, I will do my best, but I don’t think you will feel the same way about it on your 60th birthday”. Years passed and his 60th birthday loomed. “What do you think about dying now?” I asked. He boomed at me: “Just get me to my 70th birthday and I don’t care if I die the next day”. I remember he lived just long enough for a last conversation just after his 70th birthday, vowing he only wanted to see 80 and then die. I think of him fondly, recognising how my own perspective on ageing has changed over the years.

For example, I was recently quite peeved to hear our young registrar classify patients in my own age group as “the old”, but then suddenly recalled how, when I was a 24-year-old resident myself, I heard the surgeons discussing the sudden death of a senior surgeon saying “he was so young to die!” I genuinely felt surprised. I knew he was about 55 years old, so surely he must have had a full and long life by then? How age has changed my perspective on a long life.

Another patient tugs at my sleeve, to remind me to mention her story. She was a solitary, hard-working woman. Her diabetes remained poorly controlled, as she absolutely refused to take insulin. Despite this, she would dress immaculately for my clinic, enjoying our regular conversations as an opportunity to talk to a caring person about her isolated life and the challenges in ageing alone while determined to maintain independence. I still could not persuade her to take insulin, but she avoided hospital admission for many years despite persistently high blood glucose levels. Finally, the day came when the registrar took me to her hospital bed after an admission with severe pneumonia: the dreaded insulin injections had been commenced. Her blood glucose levels were reasonable for the first time in many years. It was concluded she would need transfer to a nursing home for continuing care on discharge, as she had no home support. We spoke gently to her about the nursing home, knowing it was something she dreaded. Unexpectedly, the morning of the planned transfer, she was found lying peacefully, dead in her hospital bed. She would not give herself insulin after all and she lived (and died) exactly as she wished. I think of her often when I see many patients defy our expert advice but still outlive our predictions of worsening disease and death (often for a long time).

She also reminds me of another patient who was, in contrast, always compliant with my advice about his care, but did not survive long despite his good compliance. He was a big, burly, single man whose much-loved dog was his closest companion. He was strong and healthy, but he often told me he couldn’t go on living if anything happened to his dog. When the worst did happen and the dog perished, this strong, tough dog-owner began a physical decline and soon died, without a definite medical explanation.

As physicians, we cannot predict the exact timing of such pivotal events, but we have a duty to provide comfort and support in that final process.

A geriatrician whom I respect for his wisdom and kindness called a family conference, which I attended, to discuss our elderly patient with dementia with her two daughters. He told them: “I want to warn you now that you are going to be sad. I am recommending your mother’s treatment be withdrawn and you take her home to enjoy her last weeks at home”. I requested she continue insulin, but non-essential medications were stopped. A couple of months later, I was delighted to encounter the mother and her daughters at the theatre: she was clearly not dead, and I can only say I was elated to see her enjoying the performance with her daughters. Despite good medical advice, she clearly was not ready to die yet.

After a long, distinguished medical career, my own mother had slow cognitive decline, eventually living with us for several years. I have previously written about asking her sign a condolence card after the death of a dear old friend, expecting only a scrawled signature. To my surprise, she had written warmly, recalling their years of friendship, which she said she would remember till she too followed her friend. After my mother required full-time care in a nursing home, we were called one night and told that her grip on life was slipping. She lay peacefully alert, almost as if watching something we could not see. For a long time, I tried to tempt her to drink or eat whatever was brought to her bedside, until I was startled to see her turn to me and look directly into my eyes. “You really don’t understand, do you?” her look seemed to say. I stopped attempting to force her to drink or eat and sat quietly stroking her hand until the end.

It may seem disrespectful to describe next how a strangely similar thing happened soon afterwards to my mother’s old black cat, who had lain many hours next to her in the bed, in her last years. The cat suddenly vanished from our house and was returned to us by our neighbour, having hidden under the hedge next door. After two similar escapes, we took the cat to the veterinarian who said she had chronic renal failure and would not live much longer. Somehow sensing what was to come, the cat had crawled away, seeking solitude for the inevitable. I followed her with food and water bowls to tempt her, but she didn’t touch them. Finally, she looked up and stared at me directly, as if asking the same question as my mother: “Don’t you understand anything? Just let me go”. I did as requested, letting the cat lie quietly for her last moments. She died with feline dignity, and was buried in our garden, where she used to play.

I know I have much more to learn about such acceptance of death. My strong medical instinct is to fight to prolong life with all resources at hand, trying not to yield victory to death. But it is clear that for the severely ill, there can come a time when a person knows the battle is ending and the time has come to die. How that insight — and, sometimes, an amazing acceptance — occurs remains a mystery to me. I do understand I have much more to learn from my patients who have such a calm acceptance of death.

Perhaps within the medical course, as well as teaching about prevention and cure of disease, we can integrate more discussion about care and support of the dying, considering that, whatever the increasing wonders of medical science brings, we are all going to die. Maybe as a result, as physicians we will also recognise more accurately the stage of acceptance in our patients and be more able to help them with appropriate support and comfort. As medical carers as well as teachers, we must accept our duties include both active treatment for the sick as well as empathic support when their time comes to die.

Professor Lesley Campbell AM, is a third generation doctor, a practising endocrinologist with over 250 published research articles in diabetes and obesity, including psychosocial aspects of diabetes and medicine. She works currently at the Garvan Institute’s Diabetes Centre, St Vincent’s Hospital, Sydney.

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.