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.
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Thank you James,
Having the privilege working in a team caring for persons with frailty (PWF), that are Veterans, can bring a prism to split your white beam. Veterans fought battles to survive and risk grievous and irremediable medical conditions. At Sunnybrook, the average age of the 475 Veterans is 95 years old. It is interesting to be that this population continues to have less requests for MAID compared to peer group ageism. Is the answer to this a reason worth taking their lead?? Again. After all the final battle is here for them.
Let me add my thanks for beautifully-addressing all the points I found troubling. I was privileged to be one of the witness for the paperwork required for MAID for the Brickendens. To any of the arguments put forward by Dr Koch, I say: ‘If you want to face, and face-up to your own fragility, or be unafraid of your own infirmity – go for it. Don’t assume that how you feel is how someone whose fragility affects all that is meaningful to their quality of life feels.’
“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.”
I’m glad this was said.
Yes, in the interest of transparency, it is good that this statement was made.
However, in the interest of equity, it is NOT good that this statement is true.
Really appreciate this discussion and rebalancing of Dr Koch’s position on the Brickenden’s decision to use MAID
Also glad to see this article reflect MAID as a component of palliative/end of life care continuum. Was not the case for my husband and I with the palliative care physician in out community in Alberta
Many thanks for sharing this information. As choice was the first gift given to us by our Creator, choice should be our last gift to honor our lives with integrity and peacefulness forever…
Dear Dr. Downer, Thanks for your comments. Let me reply, briefly, to your comments.
1. I did not suggest that “age is just a number.” After 30 years of working with and caring for fragile seniors and their families I’m well aware of the vast differences that attend to longevity. But aging is a real process, a social as well as biological phenomena.
2. And, yes, folk should not fear the limits that inevitably attend advanced age for most. Indeed, folk of every age should not fear the fragility that some will face irrespective of age. Over the years I have worked with many whose chronic conditions–neurological (like MS)–or advancing conditions (cancer, dementia, Parkinson Disease) make their status tenuous. It is, or should be, our job and that of the society to support folks facing such challenges and limits. The question is whether medical termination–a blunt term but an accurate one–is the best help we can give.
3. Yes, Mrs. Birkenden has Rhumatoid ARthritis and complained about an exacerbation. But many with this condition of every age are challenged by it. The question I raised was whether this was a reason for her demise or if better treatment for the pain wasn’t a better alternative. I suggest it was. And, yes, her husband has had multiple hospitalization for infections and influenza. But at the time of his death he, and she, were relatively healthy and seemed to be well situated. So … why death?
4. The physician assessing Mr. Birkenden used age-related frailty as the rational for approving his medical termination. Neither he nor she was not facing a terminal stage of illness, irremediable pain, extreme loss of mobility or function. Was this ageist? I would say yes. The test is simple: If the couple were in their 30’s with similar diagnoses (RA, infections, one with a history of cardiac dysfunction) would medical terminaton be accepted? Obviously not, given the diagnosis. So this is about “age related” and not about just “frailty”.
5.Some will say “Well, they asked for it.” The reson seems to be fear of future limits, the possibility of future medical failures. The deeper question is do we simply shrug and accept those fears of what might but likely will not occur as a rationale? Again, think age: If a 30 year old says “I’m afraid of what will be” do we accede to their request (perhaps after an adverse diagnosis, or a debilitating injury) or do we fight for their continuance and care. I would say we tell them they don’t qualify for medical termination but for the best in rehabilitation we can offer. I would argue the diagnosis and subsequent termination was a failure of medicine and of society’s goals in passing enabling legislation.
Finally, I certainly accept the reality of frailty. It can happen at every age. A visit to Sick Kids, where I was a research associate for six years, makes this clear. But unfounded fear is not an appropriate rationale for termination. Nor is fragility in the absence of end-stage irreversible conditions and untreatable pain. This whole story was about age. I would submit that actions in this case violate both the spirit of the Supreme Court’s decision and at the least skirts close to a violation of the tenants of good medicine.
Tom, I will not presume to speak for Dr. Downar, but it seems like you are still making a lot of assumptions about the Brickendens. For example, you say that “But at the time of his death he, and she, were relatively healthy and seemed to be well situated.” How do you know this? Had you ever met them in person? Were you privy to _all_ their medical concerns and issues, other than what was summarized in the Globe and Mail article? Did you not consider that perhaps their underlying health and their day-to-day functioning might be more compromised then what could explained in an article in the mass media? Do you know what sort of treatments they had been offered and had tried prior to choosing MAID? If not, how can you presume to judge their choice to pursue MAID?
You also say that “The reson [sic] seems to be fear of future limits, the possibility of future medical failures.” Again, if you are only relying on a newspaper story, without having actually spoken to them and learning what their daily limitations and suffering was like, how can you presume to say that their MAID request was based strictly on fears of the future? You are conveniently ignoring the fact that in order to qualify for MAID under the law, patients need to demonstrate that they have “illness, disease or disability or [a] state of decline [that] causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable,” and that they they “are in an advanced state of irreversible decline in capability.” As a MAID provider, these criteria are subjects of utmost priority that I explore with each and every patient that I assess.
No one is disputing that they had age-related frailty, but it is well-known and repeatedly proven that people in this state are much more likely to deteriorate and die a natural death in the short term than those who are not frail. People who are elderly, and perhaps mildly slowed down in terms of their functioning, but who do not meet the two criteria just mentioned, do not qualify for MAID, regardless of their age.
It seems that you are trying to massage the Brickendens’ story to fit your own philosophical outlook and to make a point, without knowing all the relevant details that could explain why these two people in particular chose to avail themselves of a legal option to end their suffering. No one is suggesting that MAID is the right choice for everyone who is old and frail, nor should it be. But _some_ people who are in this condition, and who meet the criteria that the federal government established, and who do not wish to pursue other avenues of support or treatment, should be able to avail themselves of this choice if they want to, if this is what they feel is the answer to their suffering, after having made an informed decision.
Thank you for your intelligent and well informed response Ed.
I find it astounding that people feel that they can jump to conclusions and immediately pass judgement, on The Brickenden’s decision (to opt for medical assistance in Dying), based entirely upon one newspaper article.
The process to “be approved” for MAID is an extremely rigorous and daunting undertaking (as it should be).
It isn’t simply a case of waking up one day feeling unwell, making a request and having it magically granted.
Obtaining approval for MAID requires the applicant (Young or old) to have enormous tenacity and resolve, in addition to qualifying based on their disintegrating health condition(s).
I have enormous respect for the empathic and humanitarian Doctors who provide this option to those who qualify. THANK YOU!
A great review, thank you! Defined as “failure to cope”, frailty should be consideration in deciding for surgery. In this case, frailty is inability to withstand a double burden of illness and surgical intervention.
Thank you for this insightful article
Thanks James for highlighting the point that frailty is “grievous and irremediable” and makes death “reasonably foreseeable”. Ironically, it seems that it’s taken MAID to alert and inform the Canadian public that frailty is life limiting. They majority of very frail patients don’t even receive a palliative approach to care, and the ongoing aggressive decisions are made which often lead to increased harms. Only recently has positive correlation been made between clinical fragility scale (CFS) and the palliative performance scale (PPS) demonstrating the lowest functional performance status for those with the highest clinical fragility (Grossman D, et al 2017). Fortunately the Brickendens appeared to have had excellent care and thus supports that good medical/palliative care for frailty is critical but does not necessarily obviate that MAID will not be sought for the intolerable suffering of frailty/multiple co-morbidities. As a wise man once said ” the golden years can be a little rusty”.
I believe that a very ill person should be given this choice, regardless of the cause. It is humane!
Thank you James for your informative insights into “frailty”. Surely, as you point out, the patient’s own perception of their co-morbidities that combine to define their frailty should be the guide to qualifying for MAID.
It is interesting that very recently Prof. Ken Hillman, an Intensive Care specialist in Australia gave an excellent lecture on “Frailty” and how many such people who would normally have died in their own bed at home or their aged care facility are now rushed to Intensive Care for futile and expensive end of life treatment. His lecture is here http://www.unisa.edu.au/Business-community/Hawke-Centre/Events-calendar/Care-Considerations-for-the-Frail-Elderly-at-the-End-of-Life/
Great article on frailty and the “failure to cope”. I have an ancient mother (99) spiralling slowly like a dandelion seed and some days crying because anything and everything takes too much effort; even conversation. Prolapsed rectum and major psoriasis are her “only” afflictions but compromise her quality of life. She is mentally done with it all.
I agree whole-heartedly with your comments. I have been following most of MAID stories and when the time comes for me, I will definitely ask for their help. Our healthcare system is overwhelmed and it takes forever to see a specialist, or get a CT Scan or an MRI. I also find that the older you get the less important you become.
Ms. Blackwell,
No one should be seen as less important as they age. That is a damning indictment on any society. Unfortunately, it often happens south of your border in the US, too. That should never be a reason to request medically-assisted death, even one qualifies for it on it legal/medical grounds.
P.S. They’ll have to stop providing me with all the medical treatment I desire, even near the end of life, at their own peril, even if I live to be 100!
Thanks, James, for a very clear and concise take on frailty in the context of MAID.
I was contemplating this very subject and I thought it might be useful to offer an analogy that could put the frailty issue into the context of everyday life: owning a house.
Scenario A: You live in a comfortable 30 year old detached home in the suburbs. The house is in great condition and because you’re diligent about maintenance, you’ve never had any major problems with it, other than needed to replace the furnace and the roof every 10 years. Suddenly, there’s a major earthquake, and the house suffers damage to the point where it is no longer structurally sound. Would anyone blame you for moving out?
Scenario B: You live in a 95 year old home in the city. Although you’ve been reasonably good at maintaining it over the years, it’s starting to show its age. There have been a few floods and there’s mould growing in the basement. The roof leaks. The floors are warped and tilted. Squirrels are taking residence in the walls. The old wiring is starting to fray, and you’ve already had a small electrical fire once. The appliances are unreliable and starting to not work properly. You suspect that the foundation may be cracked. Sure, you could try to fix all these things, but you run the risk of causing further damage and besides, the house will probably just continue to deteriorate over time. Although there’s nothing catastrophically wrong with the house, and some people might choose to stay and just deal with the problems one by one, would anyone blame you for moving out?
Food for thought, I hope!
Good analogy!!