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.