“Frailty can be just as grievous and irremediable as cancer”
I remember the first time I had to complete a death certificate for a patient who died in hospital. Near the top of the certificate, I had to write an “immediate” cause of death. This was a bit of an issue, because I didn’t actually know why he had died. I knew that it was sudden, probably peacefully in his sleep, and without anyone noticing anything. He had been admitted because of “failure to cope”—he wasn’t able to remain at home despite the help of his spouse, children, and home care. Perhaps he had developed a mild respiratory illness, but there was nothing on his X-ray and he required only minimal oxygen. He was in his 80s, with mild cognitive impairment, mild chronic kidney failure, mild congestive heart failure, mild osteoarthritis, diabetes… common health problems for someone who lives into their 80s. He had no shortage of illnesses, but there was literally nothing that I could write on the death certificate as the cause of his death.
Years later, I learned the term “frailty,” a term that refers to physical vulnerability, a loss of reserve, and deterioration in the function of most organ systems, making a person susceptible to sudden or severe deteriorations when they develop otherwise minor health problems. Frailty is now well-recognized in the medical literature, and we even have a federally funded research network devoted to this field.
Frailty is common. The Canadian Frailty Network estimates that a million Canadians are medically frail, a number that includes a quarter of all seniors. Frail individuals have frequent encounters with health care due to their many co-morbidities and vulnerability to routine stresses. And frailty is a common “cause” of death—the Canadian Institutes of Health Information estimates that more than 30 percent of Canadians die with a frailty trajectory. This sometimes becomes an issue for epidemiologic studies, since our health care systems and administrative forms are geared toward patients with a single or overriding diagnosis (e.g. cancer, stroke). So it turns out that I wasn’t the only one struggling with this problem.
Frailty was recently in the news when the Globe and Mail reported the story of George and Shirley Brickenden, an elderly Toronto couple who received medical assistance in dying (MAID) simultaneously. The article detailed the couple’s deterioration over the year prior to their death—Mrs. Brickenden was quite frail to begin with, suffering from severe rheumatoid arthritis and heart disease, and Mr. Brickenden was in and out of hospital with infections and had recently nearly died of the flu. MAID is legal in Canada for any capable adult who has a grievous and irremediable condition, and the Brickendens were both assessed as meeting the criteria for MAID, based on their advanced frailty and intolerable physical and existential suffering.
But a recent article by Dr. Tom Koch questioned the use of MAID in the cases of the Brickendens, and his arguments reflect some of the core misperceptions that drive the opposition to using frailty as an indication for MAID. I will paraphrase them here, along with my thoughts.
1. Age is a number, and many elderly Canadians are neither frail nor suffering.
This is true but not relevant. Frailty is not the same as aging. The risk of frailty increases with age, but many people arrive in late life without being frail. Others become frail earlier due to an accumulation of chronic medical problems. The Brickendens were not in good health—their numerous medical issues and suffering were described in detail in the article. Others might have been content to live with that degree of frailty, but that does not affect the eligibility of the Brickendens.
2. People shouldn’t be afraid of growing old and infirm.
This is also true but, again, not relevant. Most seniors are not frail, and most people will not develop advanced frailty before they die. But people are not eligible for MAID simply because they fear the potential for developing frailty. They must be in an advanced, irreversible state of frailty, with intolerable suffering, as the Brickendens were.
3. We need to provide better care for our seniors.
True, but is there any evidence that this couple wasn’t getting excellent care? They appeared to be in a supported environment, with a large, supportive family. They had good access to medical care. What sort of care did they need that they were not receiving?
It is a common misperception that people seek out MAID because they are unable to access medical or supportive care, or because they lack access to good palliative care. In reality, those who receive MAID are usually better-educated, wealthier, and better supported than the average dying patient, and they are almost universally seen by palliative care providers before receiving MAID.
4. MAID should not be seen as the solution to end-stage frailty.
Agree, but nothing about this case suggests that MAID was viewed this way. Mr. Brickenden was initially turned down for MAID, and only considered eligible a year later, after there was a substantial change in his medical condition. The latest national statistics from Health Canada reveal that the large majority of MAID procedures were for patients with cancer and neurodegenerative diseases (e.g. amyotrophic lateral sclerosis), which is also the case worldwide. Frailty is not mentioned specifically in the Health Canada report, but only 10 percent of MAID procedures were performed for indications other than cancer, neurodegenerative disease and organ failure, and MAID is performed in fewer than one percent of all deaths in Canada. In the Netherlands, where MAID has been a legal and widely practised option for almost a generation, it is used by less than one percent of those dying of non-cancer illnesses. That number has remained stable for a decade.
The debate about the acceptable indications for MAID will continue for some time in Canada. It is a vital part of policy discussion and should be encouraged. But it should also be informed, and we should be careful not to fall into false dichotomies. We all agree that ageism is a bad thing, that people can be healthy in old age, and that we need to improve the way we care for our frail elderly. But MAID requests are almost never driven by uninformed stereotypes or poor care. They are usually made by well-informed people with grievous and irremediable medical conditions. And frailty can be just as grievous and irremediable as cancer.
James Downar is a critical care and palliative care physician at the University Health Network and Sinai Health System in Toronto, Ontario.