Jocelyn Downie clarifies the final draft of Bill 52 as Quebec legislators prepare to vote.

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In a few days, when the Quebec National Assembly resumes sitting, the legislators will be called to vote on Bill 52, An Act respecting end-of-life care.

It is important to be clear on precisely what will be put to the legislators.  Much has been written on the original draft of Bill 52, but there is very little commentary on the amendments to the Bill. On January 16, 2014, the Quebec National Assembly Committee on Health and Social Services held its last meeting on the clause-by-clause consideration of Bill 52, closing the process with 57 amendments. A significant number of these amendments can be characterized as “tidying up”. Other amendments, however, are substantive.  In particular, it is worth noting the following:

Changing terminology  The term “terminal palliative sedation” has been changed to “continuous palliative sedation”.  This is a useful change as it removes the possible implication that the sedation necessarily causes the death of the patient.  There was ambiguity with the original terminology inasmuch it could have meant that the sedation was provided when a patient was terminal, or that the sedation would be the anticipated cause of death.  “Continuous palliative sedation” removes the potential for that confusion.

Defining terms  Many people criticized Bill 52 for not defining its key terms.  The legislators clearly heard these criticisms and responded by adding definitions for “palliative care”, “continuous palliative sedation”, and “medical aid in dying.” Below are unofficial translations of the definitions developed for these key terms.

“palliative care” is defined as: “active and overall care provided by an interdisciplinary team to people with a disease with a poor prognosis, in order to alleviate their suffering, without hastening or delaying death, to help maintain the best quality of life possible and to offer to these people and their families the necessary support.”

“continuous palliative sedation” is defined as: “a treatment offered in the context of palliative care consisting of the administration of drugs or substances to a person at the end of life in order to relieve his suffering by making him continuously unconscious until his death.”

“medical aid in dying” is defined as: “a treatment consisting of the administration of drugs or substances by a physician to a person at the end of life, at that person’s request, in order to relieve his suffering resulting in his death.”

These definitions usefully clarify the scope of the legislation. Quebeckers will have a right to end of life care and, by definition, all of the above interventions are included in such care.

Criteria for access to medical aid in dying The amendments include the addition of a criterion for access to medical aid in dying.  For an individual to access medical aid in dying, he/she must be “en fin de vie” (at the end of life).  While it might have been argued that someone who meets all of the other criteria would be at the end of life, this amendment makes it crystal clear that medical aid in dying will only be permitted for those who are at the end of life.  A further amendment also makes it abundantly clear that all of the listed criteria for access to medical aid in dying must be met.  This is a sensible (if redundant) amendment, given that opponents of the Bill were erroneously suggesting that the Bill would permit medical aid in dying when only some of the criteria were met.

” 26. Only a patient who meets all of the following criteria may obtain medical aid in dying:

1 is an insured person within the meaning of the Health Insurance Act (chapter A -29);

2 is of full age and capable of giving consent to care

3 is at the end of life;

4 suffers from an incurable serious illness;

5 suffers from an advanced state of irreversible decline in capability;

6 suffers from constant and unbearable physical or psychological pain which cannot be relieved in a manner the person deems tolerable.”

Criteria for “continuous palliative sedation”  The revised legislation now includes  criteria for access to continuous palliative sedation.  In this way, the legislators have determined that with the two most controversial kinds of end of life care – continuous palliative sedation and medical aid in dying – the patient must be at the end of life.  The amendments also include the requirement that “[t]he doctor must also ensure the voluntary nature of the consent to continuous palliative sedation by checking inter alia, that the consent is not the result of any outside pressures.”

Advance directives for medical aid in dying The amended Bill clearly prohibits the use of advance directives for medical aid in dying.  This usefully removes ambiguity in the original Bill about whether requesting medical aid in dying through advance directives would be allowed under the legislation.

In closing, there are aspects of Bill 52 that I and others wish were different. For example, I wish that access to continuous palliative sedation and medical aid in dying were not restricted to those who are at the end of life. I think end of life care (as defined in the legislation) should be available to those who are experiencing intolerable suffering, for whom death may not be imminent.  Having said this, however, I support the revised Bill. It is based on extraordinarily thorough research (including expert and public consultation), and extremely thoughtful reflection.  It is the result of a truly participatory democratic process. It is consistent with the Canadian Charter of Rights and Freedoms. For all of these reasons, it deserves full respect and support.

The documentary record of the entire process in Quebec (including Bill 52 in English) is available here.

An unofficial translation of the amendments is available here.

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Jocelyn Downie is a Professor of Law and Medicine at Dalhousie University, Halifax, Canada