Jocelyn Downie clarifies what Quebec’s proposed legislation on end-of-life care means for terminally ill patients.
On June 12, 2013, the Quebec government introduced “An Act Respecting End-of-Life Care.” This Bill establishes that “every person whose condition requires it has the right to receive end-of-life care, subject to the specific requirements established by this Act” and end-of-life care includes “medical aid in dying”. If passed, Quebec will become the first province or territory in Canada to permit medical aid in dying.
Given an earlier report produced by a Select Committee of the National Assembly, and a committee of legal experts who advised the government on the implementation of this report, the legislation comes as no surprise. It is nonetheless momentous.
To date, most media and blogosphere attention has been focused on the Bill’s provisions about medical aid in dying. Unfortunately, myths are already being constructed about these provisions, so it is important to be clear about precisely what the Bill requires.
First, the Bill establishes criteria for access and requires that patients who are given medical aid in dying:
“(1) be of full age, be capable of giving consent to care and be an insured person within the meaning of the Health Insurance Act (chapter A-29);
(2) suffer from an incurable serious illness;
(3) suffer from an advanced state of irreversible decline in capability; and
(4) suffer from constant and unbearable physical or psychological pain which cannot be relieved in a manner the person deems tolerable.”
It also requires that requests for medical aid in dying be voluntary and informed and made by the patient.
Second, the Bill requires that physicians who provide medical aid in dying meet a set of procedural requirements. The physician must, for example, ensure that the above criteria for access are met, obtain a second opinion from an independent physician, and document the request and all other relevant material in the patient’s record.
It is also important to note that the Bill provides for oversight mechanisms at multiple levels to ensure that the law and the clinical protocols are being followed. Physicians providing medical aid in dying must report all cases within their institution and to the Commission on End-of-Life Care (see below). Executive directors of health care institutions must report annually to their Boards of Directors on the number of requests for medical aid in dying, the number of requests granted, and the number denied (and the reasons for any denials). The Commission on End-of-Life Care must ensure compliance with the legislation (in every case), evaluate the implementation of the legislation, and report every five years on end-of-life care in Quebec.
There are also other noteworthy (and praiseworthy) elements that have not yet received the attention they deserve. First, the Bill makes the right to refuse treatment explicit, and requires that physicians ensure that refusals are voluntary and informed (in particular with respect to “other therapeutic possibilities, including palliative care”).
Second, the Bill improves palliative care by requiring that institutions offer palliative care, report annually on the number of patients who received palliative care, and offer a private room to every patient who is receiving end-of-life care and imminently dying. This builds upon the announcement in May 2013 of $15 million of new funding for palliative care in Quebec.
Third, the Bill clarifies the legal status and regulation of terminal palliative sedation (deep and continuous sedation combined with the withholding or withdrawal of artificial hydration and nutrition). The Bill establishes that terminal palliative sedation is legal and requires that consent to terminal palliative sedation be informed (with respect to “the prognosis, the irreversible and terminal nature of the sedation and the anticipated duration of the sedation”), in writing, and filed in the patient’s record. In addition, clinical protocols must be developed for terminal palliative sedation, and the executive directors of health care institutions must report the number of terminal palliative sedation cases to their Boards of Directors. Physicians must also report administration of terminal palliative sedation to the council of physicians, dentists, and pharmacists.
Fourth, the Bill establishes a system and a register for advance medical directives (directions written while the patient is competent that state what treatment decisions are to be made, or who is to make treatment decisions on their behalf should they become incompetent).
In sum, the Quebec government has proposed a uniquely comprehensive, consistent, and coherent approach to end-of-life care. The proposed Bill recognizes that: there is a spectrum ranging from palliative care to the withholding and withdrawal of potentially life-sustaining treatment to medical aid in dying; the underlying principles should be the same across the spectrum (including respect for autonomy and protection of the vulnerable); and residents of Quebec have a right to all forms of end-of-life care.
For more information on end-of-life law and policy in Canada and updates on this and other key developments, see eol.law.dal.ca
Jocelyn Downie is a Professor of Law in the Schulich School of Law, Dalhousie University, Halifax, Canada