The Act Respecting End-of-Life Care sets out an overall, integrated vision of palliative and end-of-life care. It ensures that persons at the end of life can have access to quality care and support to suit their situation in the final stage of life, particularly by preventing and relieving suffering. The Act follows the recommendations of the Select Committee on Dying with Dignity.
The Act has two components:
- the rights of persons at the end of life, and the organization and framework of end-of-life care, which includes:
- palliative care, including continuous palliative sedation;
- medical aid in dying.
- recognition of the primacy of freely and clearly expressed wishes with respect to care, in particular by establishing an advance medical directives regime.
Every action taken towards a person must be imbued with respect for them and recognition of their rights and freedoms. A person must at all times be treated with understanding, compassion, courtesy and fairness, and with respect for their dignity, autonomy, wishes, needs, and safety. In addition, members of the care team responsible for a patient must establish and maintain open, honest communication with them.
Rights of a person receiving end-of-life care
A person has a right to receive the end-of-life care and treatment required by their state of health and to have access to quality care in accordance with their needs, particularly to prevent and relieve their suffering.
End-of-life care is provided in institutions in the health and social services network, in palliative care hospices, and at home. Every institution or palliative care hospice must have a policy on end-of-life care specifying the nature and extent of care provided under its roof. It is important that patients and those close to them consult this policy before choosing the place where they will receive care.
Also, institutions in the health system must provide any patient at the end of life or who is eligible for medical aid in dying with a private room in the final days leading up to their death.
Medical aid in dying
Only a person of full age and capable of giving consent to care may request to receive medical aid in dying. No other person can do so for them. In addition, end-of-life patients must meet all the criteria set out in the Act respecting end-of-life care and the criteria set out in the Criminal Code in order to receive this treatment.
In 2019, the Baudouin decision struck down the end-of-life requirement. As of 2020, a person who is not at the end of life but who meets all criteria set out in the Act regarding end-of-life care can request medical aid in dying.
Right to refuse or withdraw consent to care
Any patient, whether at the end of life or not, has the right to refuse a treatment or to request that a treatment be stopped. This includes the choice of being fed, of being artificially hydrated, or of receiving palliative care. Regardless of the reason for their decision, a person has the right to refuse treatment, even if this risks shortening their life. A patient’s right to end-of-life care cannot be denied because they previously refused to accept or withdrew their consent to treatment.
Right to be represented
In order to receive care, any person must freely give their informed consent to health professionals. When a person becomes incapable of giving consent to care, they can no longer take decisions regarding the care that their state of health requires. In this case, someone else may consent to care on their behalf. This someone can be their legal representative (mandatary, tutor or curator), a close relative (for example their spouse), or a person who can demonstrate that they have a particular interest in them. In all circumstances, this person must act in their interests and, as far as possible, comply with the wishes that the patient expressed when they were capable of doing so.
People requesting medical aid in dying cannot ask others to represent them. They must be able to consent to all stages of care. However, as of June 11, 2021, the Act respecting end-of-life care allows people at the end of life who meet all criteria for receiving medical aid in dying to receive this aid even if they have become incapable of consenting to the care at the time aid is administered. However, these people must have consented to receive this care in writing in the presence of a healthcare professional within 90 days before the date of administration of medical aid in dying.
However, any refusal to receive medical aid in dying expressed by a patient must be respected by the physician. Medical aid in dying must therefore not be administered.
Right to express wishes for care
Any person, whether at the end of life or not, has the right to express their wishes for care in the event of incapacity to consent to care. They can do this by:
- verbally informing those close to them of their wishes for care;
- writing a living will;
- writing down their wishes on a sheet of paper, dating it and signing it;
- recording a video in which they express their wishes;
- making a mandate in anticipation of incapacity;
- expressing their wishes in a discussion with a doctor, who will record them in a levels of medical intervention form;
- expressing their wishes through advanced medical directives.
Persons and those close to them can at any time file a complaint regarding treatment or service received in the health and social services network with the Complaints and Service Quality Commissioner, or regarding treatment or service received from a physician outside the health and social services network with the Collège des médecins du Québec. Complaints relating to end-of-life care will be dealt with as a priority.
Commission on end-of-life care
The Act established the Commission on end-of-life care (La Commission sur les soins de fin de vie). Its mandate is to examine all matters relating to end-of-life care and to oversee the application of specific requirements relating to medical aid in dying.
The Commission sur les soins de fin de vie is composed of 11 members appointed by the Government of Québec. These members represent health and social services professionals (doctors, nurses, pharmacists, social workers), legal experts (lawyers and notaries), users of institutions, the ethics community and institutions.
You can contact the Commission:
Commission sur les soins de fin de vie
2535, boulevard Laurier, 5e étage
Québec (Québec) G1V 4M3
Last update: May 25, 2023