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26 lacible | Août 2019 FEATURE ARTICLE WHEN ILLNESS STRIKES Patrice has come to see you because his doctor informed him, last week, that he has amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease). Patrice explains to you that ALS is a neuromuscular disease that attacks the neurons and spinal cord, gradually leading to paralysis. ALS progresses rapidly and generally leads to death within five years of diagnosis. Patrice wants to put his affairs in order. As you talk with him, you realize that he is against aggressive life-extending treatment and does not want his life to be pointlessly prolonged, but also does not want to suffer. He would like to know his options for making certain his wishes will be respected. You explain to him that a protection mandate or a specific document can contain end-of-life clauses, commonly called a "living will," that express the wish not to be kept alive artificially and not to receive futile therapies to prolong his life. These documents carry no binding or legal weight, however. Patrice understands your explanations, but since living wills have no legal scope, he is wondering whether there are other options. Otherwise his family and his medical team may choose not to respect his end-of-life wishes. The Act respecting end-of-life care 1 governs palliative care and medical aid in dying. It offers an option for people who have explored all therapeutic, curative and palliative treatment options without success and wish to die rather than continue to suffer. This law has legal weight and health care professionals must comply with 1 CQLR c S-32.0001. 2 Ibid., s. 24. 3 Ibid., ss. 26 to 42. François Archambault M.Tax, DDN, LL.B., B.B.A., F.Pl. Senior Advisor, Expertise Centre National Bank Private Banking 1859 wishes that have been clearly and freely expressed by the patient. The law has two components: 1) The legislative framework for end-of-life care, which includes palliative care and medical aid in dying; 2) The recognition of wishes expressed freely in a document concerning advance medical directives. Palliative Care: Continuous Palliative Sedation Palliative care 2 is all care provided to people with a disease that curtails their lifespan. The purpose of palliative care is to offer patients the best possible quality of life while providing their families with the support they need, without hastening or delaying death. This is often a matter of administering drugs or substances to a person at the end of life in order to relieve their suffering by rendering them continuously unconscious until death. The conditions that must be met in order to benefit from palliative care are the terminal nature of the medical condition and the written consent of the person in question or the person authorized to provide consent on their behalf. Medical Aid in Dying 3 Medical aid in dying is when a doctor administers drugs or substances to a person at the end of life, at their request, to relieve their suffering by ending their life. Many conditions must be met in order to receive medical aid in dying. The person must be of full adult age and an insured person within the meaning of the Health Insurance Act. They must be suffering from a serious and incurable illness and be at the end of life and in an advanced state of irreversible decline. The doctor must observe constant, unbearable physical or psychological suffering. The wish must be expressed directly by the person in question using the prescribed form. Advance Medical Directives 4 Advance medical directives (AMDs) are expressed in a document in which a capable, adult person states in advance their wish to accept or refuse certain kinds of medical care in the event that they become incapable of consenting to care, in

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