August 26th, 2021,
We thank you for the opportunity to share our experience and our views with you, through our written brief and our oral testimony and discussion with you on August 12, 2021.
We write now to expand on two important questions that arose during the discussion following our testimony.
The situation in Quebec health care under the current law
We had the impression that some Commission members were surprised and troubled by our presentation of the situation in Quebec health care under the current Act respecting end-of-life care. We are aware that it is very different from what is heard in many quarters.
As we gave only a few examples in support of our statements, despite them being the fruit of the widespread experience of our members, we would like to share further examples with you, to illustrate better that a true problem exists.
Following is an excerpt of an email we recently received (among many others):
Is it normal that my father was asked what he wanted (terminal phase of lung cancer), that he answered “life” when he was admitted [to the hospital] and that he was then told about medical assistance in dying without asking for it, after a few days of hospitalization and follow-up in palliative care? Isn’t the rule that the patient should ask for medical assistance in dying? And I would add that Dad said yes at one point. It was [someone] who knew my father and his values well, who asked him again to make sure he understood. Dad eventually came around. We took him to my house so he could live out his last days surrounded by Mom and family members.
Another problem is that MAiD is administered in a situation that seems hopeless because no one has followed all possible avenues to the end with the patient and family. This is not surprising in a situation of lack of resources. For example, many patients refuse CLSC services, which could support them in their homes in safety, because they are afraid to let strangers into their homes. There are CLSCs that close the file when refused. There are others where a professional accepts the case. The challenge is to establish a bond of trust with the patient, to reassure them that we have the same objectives as them (their autonomy and safety), and to gradually introduce services, whilst keeping in constant dialogue with them. In this way, we manage to create a safety net around the patient. This can take several months of seemingly useless visits, but often the result is very good.
A doctor told us about an 80 year old man who lives alone and suffers from depression and the onset of Parkinson’s disease. He does not take his medication regularly, he does not eat well, and he has lost weight and muscle strength. He often goes to the emergency room because of falls and panic attacks about his health, but he refuses CLSC services. During one of these visits to the emergency room, he asked for medical aid in dying. To our colleague’s great surprise, two doctors approved the request for MAiD, giving a diagnosis of “terminal, stage 4 Parkinson’s disease”. The patient subsequently withdrew his request. He was sent home without a follow-up appointment, and without any request for home services. Very logically, his family asked the following question: If the patient is so sick, even terminally so, why wasn’t he kept in the hospital long enough to arrange for home care or relocation to a CHSLD? But the diagnosis was wrong: he does not have “terminal, stage 4 Parkinson’s”. He has several geriatric syndromes and a loss of autonomy that could improve if he had the necessary support at home.
Patients receive MAiD even if they do not truly meet the criteria in the law, because the medical assessments are rushed and inadequate. Patients receive MAiD even if they are not truly capable of consenting to it, because their decision-making capacity is not well assessed. Patients receive MAiD even when their consent is inadequate because they do not fully understand their diagnosis or prognosis; because they have just received distressing news about their condition and have not yet come to terms with it; because they feel unsafe in the hospital or CHSLD and see MAiD as the only escape; because other existing treatment options are not available to them or they are not aware of them; because they fear being a burden on their family; or because someone proposes MAiD to them, eliminating any hope they had left.
We do not judge the intentions or professionalism of the physicians involved. Some truly believe that death is a better outcome than old age or disability or serious illness. Some internalize a patient’s despair and see no other options. Some lack knowledge or expertise about other possible solutions. All work under many constraints, and as MAiD is widely promoted, they may accept a patient’s request for it too easily, as a solution to the lack of resources and the patient’s immediate suffering.
What these physicians write in the report to the Commission des soins de fin de vie no doubt reflects their honest assessment of the situation, but the cases we present illustrate clearly that patients who are receiving MAiD could have lived happily and with tolerable symptoms. The CSFV has no way of determining whether and when this is the case.
We urge you to use the present opportunity to render the present law safer for our citizens. For example, it could be required of all health care establishments to review MAiD proposals before the patient’s death. The review would study: diagnosis, including the degree of certainty of the diagnosis; patient’s mental health and decision-making capacity; sources of suffering; other therapeutic, psychosocial and spiritual support options; and stressors on the patients, families and professionals; with the goal of ensuring that the decision is freely made without constraints and that all means of relieving suffering have been explored and made available to the patient before allowing death through MAiD. This could be added to the present mandate of the Groupes interdisciplinaires de soutien (GIS), which would need more resources and the authority to determine whether the request can proceed or not.
This is of course more important than ever, now that the law no longer requires that a patient be at the end of life to die by MAiD.
Advance request for MAiD through a notarized document
In discussing the question of MAiD by advance request1, Mr. Girard asked our opinion on the discussion earlier that day with representatives of the Association des retraitées et retraités de l’éducation et des autres services publics du Québec, and the notion that such requests could be safely made through a notarized document.
Such a proposal does not answer the objections we raised in our brief:
- That advance consent is not equivalent to consent at the time of the act, as it can never be truly informed;
- That the Quebec law allowing for advance medical directives permits expression of a desire to be left alone, i.e. to refuse certain interventions, never to require a specific intervention;
- That no jurisdiction in the world allows for a binding advance request for MAiD, and that in the very few countries that permit it through non-binding advance requests, euthanasia of incapable adults is fraught with ethical problems and controversy;
- And that competing interests related to burden on family and professionals, cost, inheritance, health care resources and other factors are always present in the lives of people with dementia.
In addition, we would like to comment on the role and expertise of notaries. As stated by the Chambre des notaires du Québec2:
Notaries are unparalleled legal advisors whose approach focuses on prevention and conciliation, and who hold the exclusive status of public officer.
Notaries are experts in determining and certifying that a document complies with the law and reflects the wishes of the signatory. They do not profess to have medical knowledge or expertise in assessment of decision-making capacity. They ensure to the best of their ability that the person before them understands the document being signed, but they refer the person to a doctor if there is any doubt about capacity.
However we have often seen notarized protection mandates that we find very troubling, because they contain clauses giving medical instructions that neither our patients nor the notaries with whom they signed them seem to fully understand.
We have frequently seen the following example:
The mandatary in office shall make all decisions concerning the care required by my state of health, to the extent that it is advisable under the circumstances and taking into account the following facts, namely:
(i) That I am opposed all heroic diagnostic measures, namely, tests and examinations of any kind that are superfluous given my condition.
(ii) That I am opposed to all heroic therapeutic measures, namely, disproportionate measures or treatment that are superfluous given my condition, and that merely increase or prolong my suffering needlessly (e.g. force-feeding, resuscitation, chemotherapy and similar treatment, artificial life-support systems, and respirators, where my condition is deemed irreversible or there is no reasonable expectation of me being one day able to breathe on my own).
(iii) The mandatary shall insist on palliative care, and in particular, any medication that may alleviate my suffering and result in increased comfort, even if such medication hastens the moment of my death. However, after discussion with medical personnel, the mandatary shall determine whether it is in my interest to be kept hydrated until the moment of my death.
(iv) That I am opposed to any operation or treatment that could cause serious after-effects or leave me in a vegetative state.
All the terms underlined in this text are ambiguous and could be understood in many different ways, depending on the personal views and perspective of the health professional or family member reading them. It has often been evident to us that even the patient signing them did not understand their meaning clearly, but rather accepted them on trust from the notary.
Exactly which condition would render certain diagnostic or therapeutic measures “superfluous” or “disproportionate”?
What is an irreversible condition? Does it mean that the person is not likely to recover to the exact state of health they were in before? Or that they are not likely to recover at all? How would it be categorized if the person might recover but with some degree of disability or dependency?
No doctor would propose an operation or treatment that is expected to cause serious adverse consequences, but for many treatments it is a rare but possible outcome. How does one decide what level of risk is acceptable?
These drastic oversimplifications of critical care and end of life decisions appear regularly in mandates drawn up by notaries in Quebec. Since many of the texts we see are virtually identical, we assume they receive them from a trusted source and copy them into their clients’ mandates. The content is beyond their area of expertise, and they are not in a position to explain the subtleties of these decisions to their clients. Clients sign them because the notaries are, for them, a trusted source, and all seems well until the directives must be acted upon, and the outcome might be very different from what the sick person intended.
If the government of Quebec permits death by advance request through a notarized act, a similar situation can be expected. Texts will be composed and proposed to all clients, who will sign them without being informed of their meaning or their possible weighty consequences, which in this case would mean directly causing their death. We can conceive of no other means of accomplishing the stated goal. But the situation will be very far from the informed consent that ethics and law require.
We are convinced that it is impossible to protect vulnerable Quebecers if MAiD by advance request is permitted. A notarized act would in no way provide the protection that is sought.
We do not envy your position of hearing so many conflicting opinions on the questions under study, and having to reach conclusions that will not please all stakeholders. We urge you to hold to facts, not opinion, not political pressure. We urge you to exercise caution, considering that what is at stake in these deliberations is not material prosperity or other goods, but the very lives of our citizens, including many who have no power to defend themselves.
We wish you wisdom.
Sincerely,
Catherine Ferrier, MD
Physicians’ Alliance against Euthanasia
1650 Cedar avenue, Rm# D17-113,
Montreal, QC H3G 1A4
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1 http://www.assnat.qc.ca/fr/travaux-parlementaires/commissions/cssfv-42-1/journal-debats/CSSFV-210812.html#9h30
2https://www.cnq.org/en/your-notary/role-of-the-notary/