Quebec’s Act Respecting End-of-Life Care

The Quebec government has followed up on its plans to legalize doctor-assisted suicide. On June 12, 2013, the government tabled in the National Assembly Bill 52, An Act respecting end-of-life care, which besides its main goal of ensuring that end-of-life patients are provided with care “that is respectful of their dignity and their autonomy,” establishes specific requirements for certain types of medical assistance to die.

The Bill follows the guidelines offered by the 180-page report “Dying With Dignity” tabled March 22, 2012, and has two major components:

1. The rights, organization and management related to end-of-life care, which consist of palliative care, including palliative terminal sedation, as well as medical assistance to die; and
2. The implementation of rules for an advance medical directives regime and the specification of conditions that must be met in order for such directives to have binding force.

The Bill advocates that:

• The care provided must be respectful of the person’s dignity, autonomy, security, needs, and recognize the primacy of the patient’s wishes with respect to end-of-life care when expressed and given freely and clearly
• The person facing end-of-life care must at all times be treated with understanding, compassion, courtesy and fairness
• The members of the team responsible for a person’s end-of-life care must establish and maintain with that person open and honest communication

The Bill provides for the following rights for end-of-life care:

• Any person whose condition requires it has the right to receive end-of-life care
• Any fit adult of full age has the right to refuse to receive care that is needed to keep him or her alive

Thus, the Bill would allow a dying patient with an incurable disease “at an advanced state of irreversible decline” and suffering “unbearable physical and psychological pain” to decide their moment of death.

Except as otherwise provided by law, a person of full age who is capable of consenting to care may, at any time, refuse to receive, or withdraw consent to, a life-sustaining treatment or procedure; the refusal or withdrawal may be expressed by any means.

The physician must ensure that such a decision is made freely and provide the person with all information needed to make an informed decision, in particular information about other therapeutic possibilities, including palliative care.”

However, physicians will be allowed to refuse for moral reasons to administer end-of-life treatment.

Such end-of-life care may only be provided to a person residing in a Quebec facility maintained by a health institution or a palliative care hospice, or their own home.

General requirements for providing end-of-life care include:

• Every institution (e.g., hospitals, nursing homes and residential care facilities) and palliative care hospice in Quebec must offer and have a clinical program for end-of-life care and ensure that it is provided to the persons requiring it in continuity and complementarily with any other care that is or has been provided to them.
• Institutions and palliative care hospice must also adopt a policy with respect to end-of-life care that is consistent with ministerial policy directions (the Minister of Health and Social Services determines the policy directions that are to guide institutions and agencies when organizing end-of-life care) and communicate the policy to personnel of the institution, to the health and social service professionals who practice in the institution, and to end-of-life patients and their close relations.
• Information on end-of-life care services and rules governing access to the end-of-life care provided by the institutions and palliative care hospices in its territory must be available on the health and social services agency websites.
• The executive director of an institution must report annually to the board of directors on the implementation of the policy. The report must state the number of end-of-life patients who received palliative care, the number of terminal palliative sedations administered, the number of requests for medical aid in dying, the number of times such aid was administered and the number of times such requests were refused, including the reasons for the refusals.
• Every institution and palliative care hospice must include in their code of ethics a section pertaining specifically to the rights of end-of-life patients.
• When an end-of-life patient requests in-home palliative care from an institution, but the person’s condition or environment is such that proper care could not be provided at home, the institution must offer to admit the person to its facilities or direct them to another institution or to a palliative care hospice that can meet their needs.
• An institution must offer a private room to every patient who is receiving end-of-life care in its facilities and whose death is imminent.
• Every palliative care hospice must inform (must also be included in the agreement) persons of the end-of-life care it offers before admitting them.
• End-of-life care may be provided at the patient’s home by physicians and, within the scope of their practice, nurses who practice in a private health facility within the meaning of section 95 of the Act respecting health services and social services. However, such a physician may not provide terminal palliative sedation or medical aid in dying otherwise than in association with the local authority of the territory where the facility is situated. The terms of the association must be set out in a written agreement. The agreement must include the monitoring mechanisms that will allow the local authority, or one of its boards, councils or committees determined in the agreement, to ensure that quality care is provided.
• On the request of the local authority, the physician must communicate any information required for the carrying out of the agreement. The manner in which such information is to be communicated is specified in the agreement.

The Bill outlines strict protocols and criteria for continuous medical supervision of patients who must meet specific conditions in order to be eligible for end-of-life treatment.

End-of-life treatment includes terminal palliative sedation, which places patients in a state of unconsciousness and where they are deprived of food and water, and would require written consent beforehand in writing and filed in the patient’s record. Death often occurs within days of terminal palliative sedation but can sometimes take longer.

Before giving consent to terminal palliative sedation, a patient who wishes to receive such sedation or, where applicable, the individual authorized to consent to care on behalf of the patient, must among other things be informed of the prognosis, the irreversible and terminal nature of the sedation and the anticipated duration of the sedation.

Medical assistance to dying patients would involve the injection of a yet-to-be-determined drug, administered by a physician after terminally ill patients who met all the strict criteria has freely complied with the procedure.

To be eligible for medical assistance to dying, the patient must:

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, i.e., have a Quebec Medicare card);
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.

The patient must request medical aid in dying themselves by means of the form prescribed by the minister. The form must be dated and signed by the patient or, if the patient is physically incapable of doing so, by a third person. The third person may not be a minor or an incapable person of full age or a member of the team responsible for caring for the patient. The form must be signed in the presence of a health (attending physician) or social services professional who countersigns it.

Before proceeding with the medical aid in dying, the physician who will actually administer the injection must ensure that the patient is informed, that the consent was given freely without any external pressure and that the procedures and criteria are met.

A patient may, at any time and by any means, withdraw their request for medical aid in dying. If the physician determines that medical aid in dying cannot be administered, the physician must inform the patient of the reasons for that decision.

The council of physicians, dentists and pharmacists established for an institution must, in accordance with the clinical standards established by the professional orders concerned, adopt clinical protocols applicable to terminal palliative sedation and medical aid in dying.

The physician administering end-of-life medical assistance must within 10 days notify their council of physicians, dentists and pharmacists once it has been done. The council must then investigate that the quality of care, procedures, rules and protocols were followed.

A commission for end-of-life care will be established to advise and report to the minister on the status of end-of-life care, and ensure the implementation and evaluation of legislation with regard to end-of-life care.

As for medical directives, a person of full age who is capable of giving consent to care may specify, in advance medical directives, what care required by their state of health they consent or do not consent to, in the event that they become incapable of giving consent.

The directives may include the names of one or more trusted persons who are to give them, at the appropriate time, to the attending physician or to another health professional providing care to the person.

A medical directive must be given by a notarial act en minute or in the presence of witnesses on the form prescribed by the minister. This written document is similar to a living will. This directive must be registered with the minister who will establish and maintain an advance medical directives register.

So what about the Criminal Code of Canada, which prohibits euthanasia and assisted suicide?

Social Services Minister Véronique Hivon insisted that the Bill is compatible with the federal Criminal Code because the proposed end-of-life treatment would be part of a “continuum” of health care that falls under provincial jurisdiction:

I want to repeat that euthanasia, for example…is not forbidden in the Criminal Code. There are general provisions and there is something specific about assisted suicide but nothing on euthanasia.”

Federal Justice Minister Rob Nicholson said in a statement that the federal government will review the implications of Quebec’s proposed legislation and that euthanasia and assisted suicide are federal matters and currently illegal. I doubt that will discourage the government in Quebec if it is determined to pass the Bill.

If it does pass, its execution will create an interesting legal and political situation. The federal government will likely be hesitant to interfere with a decision of Quebec’s National Assembly, in order to avoid political tension, but to avoid setting a precedent for other provinces; the federal government would have little choice but to challenge the law in court.

Despite Social Services Minister Hivon’s comments, there seems to be no doubt that this is a challenge to the Criminal Code and the federal government’s treatment of euthanasia and assisted suicide as criminal matters. I’ve also no doubt that other provinces are watching closely to see what happens, since Quebec is not the only one agitating for change. In a major decision from 2012, British Columbia’s Supreme Court found the ban on physician-assisted suicide was unconstitutional and gave the government one year to “take whatever steps it sees fit to draft and consider legislation.” However, the government decided to appeal.

It’s all speculation at this point which way it will go, but I suspect that the Supreme Court of Canada will eventually have to review their previous pronouncement on euthanasia and assisted suicide, and will have a lot to think about. In the 1993 case of B.C. resident Sue Rodriguez, the Supreme Court of Canada acknowledged the state interest in protecting human life by upholding the current law on euthanasia and assisted suicide as criminal matters.