My mother is terrified of developing Alzheimer’s disease. Having watched my grandmother’s dementia progress to the point where she no longer recognized her own daughter, I can understand her fear. She told me recently, “If I ever get dementia, I don’t want to go to a nursing home. I’d rather be dead.”
In February of 2015, the Supreme Court of Canada ruled in a unanimous decision in Carter v. Canada, that an absolute prohibition on physician-assisted death violates the Charter rights of these individuals, and is unconstitutional. Federal lawmakers now have until early June to regulate physician-assisted death. Physician-assisted death is already legal in Quebec. Canada’s first patient underwent physician-assisted death in Quebec City this month.
The specific criteria laid out by the Supreme Court are that for an individual to access physician-assisted death, they must:
- Be a competent adult (This means they must understand the information that is relevant to making the decision. The patient must understand and appreciate the history and prognosis of their medical condition and the risks and benefits of each treatment option.)
- Clearly consent to the termination of life
- Have a grievous and irremediable medical condition (including an illness, disease or disability)
- Experience enduring suffering that is intolerable to the person
Despite the College of Physicians and Surgeons of Ontario’s recently released draft document and the report from the Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying, I have concerns that doctors still have very little guidance in how to interpret what constitutes a “grievous and irremediable medical condition” that causes “intolerable suffering.” Grievous is presently defined as a legal term that applies to serious, non-trivial conditions that have a significant impact on the patient’s well-being. Irremediable is a broad term to capture both terminal and chronic conditions that by their nature cannot be cured.
In an effort to point out some of the complexities of physician-assisted dying that have yet to be resolved, I have written three stories of patients. These are patients who could attempt to access physician-assisted dying that are based on real cases I have been involved with over the past three years of residency. At a time when dialogue and debate around physician-assisted dying is incredibly important, I encourage you, reader, to share your opinion by voting in the poll below and adding your thoughts in the comments.
Scenario 1: Mrs. M
Mrs. M is a 96-year-old woman with advanced Alzheimer’s dementia. She is unable to walk and spends the majority of her day in bed. As a result, she has developed bedsores. She relies on the nursing staff at her long-term care facility to dress, bathe, feed her and change her diaper. She was a very intelligent woman who worked as an accountant. Due to her severe cognitive impairment, she is unable to recognize her family members. She once had told her daughter that if she were to lose her mental faculties, she would prefer to be dead.
Mrs. M would not be allowed to undergo physician-assisted death, since she does not have the capacity to consent to the procedure, and that capacity cannot be bestowed to a surrogate decision maker specifically for physician-assisted death. However, she had clearly outlined a situation whereby life would not be worth living when she was capable, and now exists in that state. But is she suffering? Does her cognitive impairment allow her to have insight into her current state of health? Is it fair to bestow such a decision upon her daughter? Does her daughter have personal beliefs or motivations that might impair (or possibly encourage) her ability to carry out her mother’s express wishes?
It would seem callous and irresponsible to provide physician-assisted death (if requested) when a patient is first diagnosed with dementia, given that these individuals are usually functioning relatively well and have mildly impaired cognition at the time of diagnosis. And yet, once patients deteriorate to the point where their quality of life is no longer acceptable, they would be deemed incapable of consenting to physician-assisted death.
On one hand, I recognize there are many ethical concerns with a surrogate decision maker consenting to assisted death for someone who does not have the capacity to consent. On the other hand, as a resident doctor with experiences in palliative care, I know that many of my patients have expressed a desire for physician-assisted suicide once severe dementia sets in (including my dear old mother). If a patient has set out clear advanced directives (such as in a living will) when they were capable of doing so, why do we not honour those when they are no longer capable?
Scenario 2: Mr. S
Mr. S is a 73-year-old man with recurrent episodes of heart failure and severe kidney dysfunction. He is on oxygen and is unable to leave his house or perform any activity requiring physical exertion due to his breathlessness. He has eight hours per week of help in his home, but he still finds it difficult to manage without any family around. He is adamant that he will not live in a nursing home. Mr. S has had seven visits to the emergency department in the preceding year. Doctors have told him many times during his hospital admissions that they did not expect him to survive that particular visit, but each time he has managed to recover. He has asked his family doctor about the possibility of pursuing physician-assisted death.
Heart failure is a deadly disease with a significant negative impact on a person’s quality of life. It could be seen as a grievous and irremediable medical condition that causes intolerable suffering. However, Mr. S does not appear to have received palliative care, which focuses on the relief of suffering in an individual by reducing their symptoms. I would personally ask that Mr. S explore their services first before proceeding with physician-assisted death and re-evaluate his experience of suffering after. While the current government framework encourages the involvement of palliative care in end-of-life care, it does not make it a mandatory component in determining the provision of physician-assisted death. I feel that it should, in order to ensure that suffering is not prematurely deemed unbearable. This will require that all patients have timely access to a palliative care physician, which is not the state of affairs in Canada at the present time.
Scenario 3: Mr. J
Mr. J is a 64-year-old retired mechanical engineer who was recently diagnosed with incurable lung cancer that has spread throughout his lungs and to his liver. The palliative care team has worked hard to address and relieve his symptoms, which had largely consisted of pain and shortness of breath. He is too weak to eat and spends his day lying in bed. He has discussed with his palliative care physician that his current state of living is “unacceptable” as he previously derived joy from spending time outdoors with his family and being physically fit. He asked the doctor if there is any way to end his life early, to avoid having to continue on in this way and having his family witness his suffering.
It appears that every attempt to relieve Mr. J of his emotional and physical suffering have been made, including the involvement of palliative care. Despite these efforts, Mr. J’s ongoing quality of life is unacceptable to him. Doctors should look into his psychological symptoms, however, to see if they are consistent with depression and if treatment options for depression may improve his overall view on life. It is unfortunate, in my opinion, that the CPSO draft policy on physician-assisted death provides no specific guidance regarding how to ensure depression is not factoring into a person’s wish to die. With his permission, involvement of his family in this discussion will help them to understand his fears and may have a positive long-term impact on the family in terms of understanding his request. Likewise, the CPSO policy makes no specific recommendations about endeavouring to contact family.
Physician-assisted death is already a reality in Canada. I think it is important we recognize all of the complexities involved in these decisions. As a physician who cares for patients with chronic and incurable illnesses, I am a glad that physician-assisted death can be a treatment option on the spectrum of end-of-life care for many individuals. But in order to help both the patients and physicians involved in this sensitive decision, society and physicians need clear guidance on the complex issues that exist within the decision to undergo physician-assisted death.
The comments section is closed.
The fact that PAD is even legal at all is a huge step for those who are suffering right now. I have always been in favour of this but now that it is reality, I believe we should adhere strictly to the rules as set out in the Supreme Court Decision.
For me, the sample cases were obvious. The only doubt I had was whether Mr. J had clinical depression. Once that was settled then I was fine.
Until we have gained more experience with the current system I do not think we should be pushing the envelope at all. It will take some years for society and physicians to gain experience with PAD,
Thank you for a very thoughtful and well-informed article, Dr. Quinn.
Something that struck me as I was reading each of these cases is just how much conceptions of well-being, personhood, and “quality” trade on embodied experience – i.e. doing – in Western society. After all, it’s already embedded into your operating assumptions that these are the kinds of cases that are potential candidates for medically-assisted death. I get that. But I think it’s important to be mindful of this massive dominant cultural lens in meeting with candidate patients to try to help suss out “would this be intolerable to you with x, y, or z social supports/existential supports/built environment supports?” And, related to that, how much of the suffering is the result of the individual’s response to the disease entity, or the lack of supports to manage and wring quality out of the lived experience. In short, I think these kinds of conversations are often overlooked in clinical settings, but could go a long way in teasing out important subtleties in what is (in)tolerable.
My mother had Huntington’s disease and watched her mother suffer with the same disease. She told us that if she were ever to the point of having to be placed in a nursing home that she would rather have Dr Assisted dying but that was not available to her. She suffered terribly until her death. She lost her ability to walk, talk, swallow, care for herself, she had involuntary muscle movements all of the time which I am sure caused her pain. Not enough nutrition to sustain the calorie loss from the non stop movement. I am sure she was exhausted, would be like running a race without being able to provide nutrition to sustain your body. Your muscles would be cramping and in pain. There is no cure!!! Some medications can be used to treat some symptoms but you have to choose what is the most important to treat because you can’t treat all symptoms! If I had the disease I would was Dr assisted dying! I would want the choice to die with dignity. That choice my mother and grandmother didn’t have!
Good Morning Donna,
Thank you for sharing such a personal and what sounds like very distressing experience with one of the progressive neuro degenerative diseases such as Huntingtons.
Criteria as pointed out by the author are important as they attempt to provide guidelines and simplify factors pertinent to decisions. However, to foster understanding, it could also be argued that to blindly follow criteria or modestly “find a way to make them work” can in itself be problematic and even more so with an issue such as Physician-assisted dying (PAD).
Starting with the last case study, it is clear to see there are more social concerns being raised by the client besides the “unacceptability” of the circumstances and those his family will have to come to witness.
For example, if we view this case through the lens of care providers hoping to guide and teach a client, instead of circumventing the consequences of a diagnosis and its correlations, we may be able to critically examine the significance of the criteria.
Of course, helping a client and a family to understand what is happening during the final phase of embodied life is a challenge. Death and its stages at this point in the larger process of life seem contrary to what we are taught to value and idealize. Yet what help and avoidance of injury are we demonstrating to our clients and family with PAD at this point? What harm are we saving a person from if all we are demonstrating to them is means to avoid consequences for our actions and outcomes of our responsibilities?
Palliative care, of course, is key. However, because palliative care has been unable to reach its full potential to guide and teach those with terminal diagnosis beyond the physical symptoms, we regard the systems failure to enhance this specialty as recourse for PAD.
In the second case study, we find again an example of a lack of implementation and planning for the needs of a client. To be blunt, studies abound in LE statistics for those with CAD as well as it being known for some time that those treated are done so for a progressive disease
(Bogers, Kappetein & van Domburg, 2009). So the question that remains is not whether the criteria fit the needs of the client. Rather, it is whether a system which had over ten years to prepare, with ample evidence from which to work, has done more harm to clients by not assisting them to cope with life changes then will be reduced by PAD.
Again, a Palliative approach along with supporting health teaching resources could have prevented much of the psychosocial harm exhibited by this client. In fact, if we return to this case study knowing what could have been done, it makes one wonder if the client is not asking for PAD for acute suffering, but for relief from decades of untreated mental frustration.
Looking to the final case study, ironically an example the author thought should be first, we now see the cumulative effects of a lack of psychological and social preparation. We see, as if by design, having not created the health care tools to assist clients to learn, adjust, adapt and be partners in the short and even moderate termination of embodied life, a poverty of sapience in what to do for longer journeys of goodbye.
To put it another way, it’s as if the Mrs. S. case says beyond the hints of the others that if we ever get to a place where we do not have the answers or are unable to know what to do or what direction to turn, well, we can always just quit. After all, it is argued we should not let happen to people what we would not let happen to our pets.
However, humanity, what it means to be human, tells us we are not pets. Why? Because we should be to one another more than mere creature comforts. Furthermore, let us not forget, we are creators of elements, we are the originators of myth, we are the makers of light and the architects of dreams. Yet for all these qualities that set us apart, what does it say when we put more value to tossing away the challenge another human offers than learning about being more human as a result?
To conclude, criteria, like standards and frameworks, can be key components to the approach of decision-making. However, as we have come to learn from colonization and patriarchal institutions, if criteria are not relevant to all factors, the return on their application will be problematic. Moreover, before we surmise all you need to do to propel forward is pat yourself on the back, we may want to look at not only what we are doing but also what we have done. Why? Because to be a human being denotes taking up a position contrary to those we embody this space with, and so consequently, should we seek to find a way through and not out of this responsibility.
Ron T. van Domburg, Arie Pieter Kappetein, Ad J.J.C. Bogers. (2009). The clinical outcome after coronary bypass surgery: a 30-year follow-up study. European Heart Journal, 30(4) 453-458; DOI: 10.1093/eurheartj/ehn530
Mr. S is the only case that I thought to immediately deny the request for physician assisted death.
Here are my thoughts:
Mr. S’s scenario is a far too common situation for many older adults with complex needs and so this seems concerning to me that allowing such kinds of cases may lead to a slippery-slope. CHF is a top chronic condition in Canada and many older adults are bedridden, need help with ADLs and are socially isolated. Although it does indicate that he has discussed the possibility of PAD with his family physician, based on the information provided, it does not seem that his request for PAD is due to intolerable suffering. While his quality of life may be low, many programs for complex elderly exist that might improve his QoL. It indicates that he receives only 8 hours of help per week in his home which, to me, seems low given his level of complexity and the number of ED visits. It would be worthwhile to increase his level of personal support so that he receives more support with his day-to-day tasks as well receive more social support. It is also possible for Mr. S to have a mental-comorbidity such as depression as it is common for older adults and this should be addressed before exploring the option of PAD. I believe that Mr. S has alternative options that should be explored before beginning to explore the option of PAD.
I voted that all three should be able to access physician assisted death but I agree that this should happen only if all options, such as clear advanced end of life directives, counselling and palliative care are put in place and made available to everyone seeking to end their lives.
Well your mother is not proactive. All you have to do is download the SAGE dementia test from the University of Ohio, take it two times a year and you will catch the early window where you are still legally competent. Then demand your rights under Carter vs Canada. In Ontario there is a glaring loophole in that the College suggests the patient administered drugs but there’s nothing stopping you from just saving them up and taking them later in the progression of your illness. There is no routine cognitive testing done in Ontario. The first is at age 80 in the seniors driving test questions. People just don’t want to know and by the time they do it’s too late to do anything about it.
I am a physician who specializes in care of the elderly. I runs two memory clinics designed to identify early dementia and I am responsible for approximately 307 residents in long-term care, about 150 of whom have dementia. I would like to reply to your statement. First, there is a difference between mild cognitive impairment and dementia and I would be very concerned about the validity of a two-minute self-administered test. Many people in the early stages of dementia may not have insight into their memory loss or may be concealing it as well. My memory clinics are comprised of multiple allied health professionals including nurses, social workers, occupational therapists and myself and we are very comprehensive in our approach. It is not as simple as one test.
There is a reason that routine cognitive testing is not done in Ontario: there is no indication for mass screening at this time when there is little to offer in the way of treatment; currently. There are many things on the horizon but they are not available as of yet. There are studies published on the hazards of mass screening and the implications (statistically speaking, imagine the risk of false negatives and false positives if every single person over the age of 60 was screened for cognitive impairment!). This is incredibly complex: as physicians, we still require more guidance on physician assisted death (which will be coming). We each have our own opinions, values, beliefs that need to be kept in check as this is a very controversial topic. Intolerable suffering is up to the individual experiencing it. Much like we all have different pain thresholds, some people have a much lower threshold for what they feel is unbearable from a physical or psychological standpoint. It is very difficult to say with any degree of certainty what we would do in a situation we have not experienced. e.g., if I got Alzheimer’s I would want to end my life. It is, again, up to the individual to determine and, keep in mind, with the current guidelines, patients will have to submit two requests in writing and a verbal request for PAD and then be assessed by two different physicians and possibly a capacity assessor. It’s not as simple as stopping in your doctor’s office and getting a prescription.
Very nice job Dr. Quinn! Here are my thoughts:
Mr. J is NOT clinically depressed in the manor of patients whose clinical depression is unrelated to any stresses or events in their life. His request for assisted dying is a perfectly rational one, and a physician who knows him well should be able to delineate that. He has a terminal illness and he is suffering intolerably. He does not require a psychiatric evaluation and SSRI medications will not alleviate his existential suffering. He should be a candidate for PAD if that is his wish.
Mr. S is more of a grey area, but I wonder what you think a palliative care physician could offer him that you couldn’t? Was the hospital’s palliative care service consulted on his last admission? Would palliative care even accept him as patient without a clear prognosis of death within a few months? I respect and admire palliative care physicians, but some of the best ones I know are also internists and family docs and I think the palliative approach of focusing on quality of life and symptom relief, even if it hastens death, could be practised by all specialties. I think Mr. S may meet the Carter criteria but if I were the attending physician, I would make sure that his social vulnerability has been explored and that he repeats the request over time. He should NOT however, be denied PAD and have to continue to suffer just because he’s unlucky enough not to have an involved family.
Mrs. M is unfortunately out of luck. She isn’t competent to ask for PAD. Going forward, now that PAD will be legal, I hope that legislation allows a competent person with a grievous medical condition but who is not suffering intolerably yet be able to set out in an advance directive the conditions under which they would want PAD if they do become incompetent in the future. Dementia is a perfect example. I’m with your mom on this. If I got the diagnosis, I would have my lawyer draft a new advance directive that states that if I don’t recognize my children, if I am unable to toilet myself, I would want PAD.
Good Morning Ms Taylor,
Thank you for your insightful comments. I wonder if individuals will set out advanced directives/living wills outlining their wish for PAD under certain circumstances as a proactive measure in the event that the legislation changes to allow these advanced wished to be honored in the future?
I will certainly recommend my parents do the same!
My mother – after she needed help in the bathroom and didn’t know who I was – was nonetheless sweet and happy and a great blessing to all she came in contact with – including her ten caregivers!
Hello Sharon,
Thank you for your comment. I find this to be the most challenging issue with PAD.
So many individuals I have cared for with advanced dementia are “pleasantly confused” and do not appear to be suffering, despite discussions with their family earlier in their disease that it would not be an acceptable state of living for them. I have yet to reconcile personally what I feel is “right” for my patients when it comes to this tricky situation, and I had hoped to highlight this in my discussion of Mrs. M
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Count me in too, Maureen.
And lo, the privacy-compliant Advance Directive form I created (not as a healthcare professional, but as a layperson) is being completed by many who’ve been diagnosed with Alzheimer’s (or other Dementias).
While PAD isn’t an option (yet) on this form, it’s an indication of the need to document wishes when ‘competence’ can’t be counted on. http://www.bestendings.com/bestendings-advance-directives/
Thanks for starting the discussion, Maureen. You mention:
“Mr. J is NOT clinically depressed in the manor of patients whose clinical depression is unrelated to any stresses or events in their life. His request for assisted dying is a perfectly rational one, and a physician who knows him well should be able to delineate that. He has a terminal illness and he is suffering intolerably. He does not require a psychiatric evaluation and SSRI medications will not alleviate his existential suffering. He should be a candidate for PAD if that is his wish.”
To my understanding, a crucial factor in this scenario, as Dr. Quinn laid it out, is that Mr. J. was RECENTLY diagnosed with incurable lung cancer. While he may not have major depressive disorder, he could certainly have situational depression that some time and perspective may shed light on. That his current state is “unacceptable” to him may not be tantamount to “intolerable suffering” or be a “rational” decision, as you have suggested. It may be a decision/response that is attached to his sense of personhood, which – again – some time, distance, and existential exploration may help to gain clarity on. (In short, I don’t think the case is anywhere near as straightforward as you do, and think time plays an important role.)