Speech at the commission regarding Bill 52, An Act respecting end-of-life care
Members of the National Assembly,
Thank you for your invitation. Before sharing my comments on the Bill respecting end-of-life care, I want to acknowledge the remarkable work carried out by the Select Committee on Dying with Dignity. The MNAs who served on this committee established the basis for a serious reflection that now allows us to hold valuable discussions on this important issue that health care professionals, people at the end of their lives and their families are grappling with on a daily basis.
I am highly aware of the sensitive nature of this debate, which calls on rational argument as well as personal values and intimate beliefs. I based my reflection on several major principles:
- Recognition of the fundamental importance of the right to life
- Respect for personal autonomy
- Effective access to palliative end-of-life care services
- Respect for the right to die with dignity
I then examined a few concerns related to the quality of the accountability and the application of the complaint examination process in the health and social services network.
The Québec Ombudsman supports Bill 52
After careful consideration, including an examination of the practices of other countries that have taken this route, I am of the opinion that the balance between the respect for individual rights, and especially respect for personal autonomy, and the protection of vulnerable persons is reflected in all the provisions of Bill 52. I also take note that this bill upholds the rights and freedoms of physicians, specifically by not obliging them to carry out medical acts that run counter to their values and the dictates of their conscience.
Our analysis of the Bill leads us to conclude that it enshrines the essential precautions required to implement medical aid in dying that is strictly limited and that respects the wishes of the dying person.
I will now address a few issues related to the principles I mentioned earlier.
Recognition of the fundamental importance of the right to life
The right to life is the first right guaranteed by the Canadian Charter of Rights and Freedoms and the Québec Charter of Human Rights and Freedoms. Reconciling the right to life with medical aid in dying may, at first glance, seem paradoxical. Yet civil law in Québec has long recognized the right of a capable adult to refuse medical treatment, even if death will be the result. There is reason, therefore, to reconcile this right with the right to life, which is just as important. I believe that Bill 52 achieves this balance.
The possibility of devaluing the right to life, especially for vulnerable people, appears to be a central concern for many people. The three following arguments outline the main fears that are often brought up in public discussions on the matter. Those who object argue that, if legalized, medical aid in dying:
- may be given to people who are alone and vulnerable and have not requested it;
- may be used as a means to free up beds in the face of an ageing society that is putting increasing pressure on the health and social services system;
- may lead to a "duty to die" to avoid being a burden on family or society, especially for certain vulnerable people, such as people suffering a loss of autonomy or the disabled.
Each of these arguments should prompt serious reflection. Before giving my approval to a bill that would usher in the legalization of medical aid in dying, I wanted to make certain that the appropriate guidelines are provided and effectively implemented to prevent such abuses from occurring.
Our brief presents in detail why I believe that these guidelines are provided in the draft bill. I refer to all the requirements and various controls that are outlined, both before and after, to strictly regulate access to medical aid in dying. In this short statement, I simply want to answer the arguments I just brought up:
- A person who has not made a written and countersigned request for terminal palliative sedation or medical aid in dying cannot receive these medical services. Every required mechanism is in place to ensure that the request is free and voluntary, and that it has been made by a person who is capable of giving consent.
- External pressure to free up beds in the situation of an ageing population will result in a refusal to proceed by the physician, due to the fact that the request is not free and voluntary.
- The "duty to die" so as not to be a burden on family or society will be diagnosed during the examination of the patient or the conversations held at different times by the physician and will also result in a refusal to proceed.
In short, I believe that, in its principles and in its actual construction, Bill 52 does not devalue the fundamental importance of the right to life. On the contrary, it places that right in balance with another equally fundamental principle: the respect for personal autonomy.
Respect for personal autonomy
Respect for personal autonomy is based on the free and informed consent to care. Our brief explains why, in the case of a capable person, the bill includes every guarantee required to ensure the validity of the consent.
There remains, however, the difficult matter of a request expressed by a person who has become incapable of giving consent. In this case, the legal recognition can only be granted through the advance medical directives regime. Health care professionals will have the duty to respect and carry out the wishes of the person concerning the care or treatment they wish, or do not wish, to receive.
Subject to clarifications to be made in the future draft regulation, I deem this mechanism to be appropriate to carry out the previously expressed free and informed decisions of people who subsequently become incapable of giving consent.
On the other hand, it is my understanding that access to medical aid in dying cannot be requested in an advance medical directive. The wording of the bill suggests that only a person who is capable can make this request, and, naturally, only if they meet all the other criteria.
Some stakeholders raised the question of whether access to medical aid in dying could be expanded to people who have become incapable, but who have previously clearly made such a request in an advance medical directive.
This suggestion raises major ethical, medical and legal issues. It would be judicious, in my opinion, to entrust the future Commission sur les soins de fin de vie with a mandate to carry out an in-depth examination of this matter before proceeding.
I would like to point out, in passing, that it will be important to ensure that the actors and stakeholders, as well as the general population, fully understand the differences between advance medical directives and a mandate in case of incapacity, which may already contain specifications regarding care.
Effective access to palliative end-of-life care services
This draft bill is generous in its principles and grants everyone the right to receive quality palliative end-of-life care, which I naturally support. Organizational realities and budget constraints may weigh heavily in the materialization of this right, however. Already now several regions do not meet the standard for the number of palliative care beds available, as set out in the 2004 end-of-life palliative care policy. A concrete effort is required to rectify this situation.
This will be all the more critical once medical aid in dying is available. I will state this directly: the Québec Ombudsman's support for medical aid in dying is conditional on access to quality end-of-life palliative care. This, it seems to me, is the first guarantee of protection for vulnerable people.
The challenges will be enormous. As described in the bill, medical aid in dying is part of a therapeutic relationship between the patient and the attending physician. In a situation where nearly 40% of Quebecers do not have access to a family physician, access problems will inevitably arise.
This is why I recommend updating the 2004 end-of-life palliative care policy to include the commitments outlined in this bill. Likewise, an action plan to develop palliative care in the short term in all regions that require it must be prepared and implemented.
Respect for the right to die with dignity
At the end of life, it is of crucial importance to have the benefit of a stable environment that offers quiet and privacy. Final words and signs of affection from friends and family are private, and access to a single-patient room is a condition of respecting privacy.
I am concerned, however, about access to such private end-of-life rooms in all the institutions in Québec. Given the foreseeable increase in the demand for such rooms and the current situation of public finances, how can the 280-some public and private institutions in the network rise to this challenge? We know that in many regions of Québec there are already too few palliative care beds to meet the objectives and respond to the needs of the population. This makes the ministerial action plan that I recommended earlier all the more essential to fulfil this legislative provision.
This guarantee must also be effectively offered to all citizens. Otherwise, exercising the right to live one's final moments in privacy would be reserved only for those people able to pay the cost of the room, which appears highly unfair. I therefore recommend that the bill and a current regulation be amended to strengthen the guarantee of no charge to the users in the very specific circumstances when their death is imminent.
Everyone agrees that Bill 52 raises sensitive issues and that it will be important to carefully monitor the impacts of its implementation. In this sense, I endorse the creation of the Commission sur les soins de fin de vie, which will be charged with providing an independent, external opinion on the matter.
The expertise of its members will be the first guarantee of its credibility. It will be important to appoint the best experts, not interested parties. I would like to add two other conditions: the quality of the information that the Commission will have to carry out its mandate and the perception of independence that will make it credible with the stakeholders concerned and, more broadly, with the general public.
In terms of accountability, the information required from the institutions is sufficient. But what about the overall situation across Québec? To gain an idea of this situation, will these same people have to read the annual management reports of all these institutions?
This role should, in my opinion, be the responsibility of the Commission sur les soins de fin de vie. All the statistics collected by the institutions, including the number of refused requests and the reasons for the refusals, should be submitted to the Commission. This information will allow the Commission to prepare an in-depth annual report and a more complete five-year report to provide insight into the impact of the law and the consequences of its implementation. This is one of my recommendations.
A few words, also, on the perception of independence. In the proposed formula, the Commission sur les soins de fin de vie would be under the authority of the minister of Health and Social Services, to whom it will have to report. Without suggesting inappropriate intentions on anyone's part, it seems to us that the mechanisms provided for in the legislation in Belgium and Luxembourg, where the oversight entities have to report directly to their parliaments, appear better able to reinforce independent accountability and avoid any appearance of conflict of interest. This ensures that the findings of the oversight entity are sheltered from any criticism related to possible interference.
One solution would be to dissociate the Commission's administrative authority and its line of accountability. The administrative authority would be entrusted to the minister, as planned, but the accountability report would be submitted directly to a National Assembly committee. This is another of my recommendations.
Application of the complaint examination procedure
It is inevitable that the application of the new provisions set out in the bill will lead to dissatisfactions that will have to be handled. By way of information, and as a conservative estimate, over the last three years, the Québec Ombudsman has received 30 second-level complaints about end-of life-palliative care, 21 of which were substantiated. People at the end of life, or their mandataries, complained in particular about the lack of quality in palliative care, fees charges under those circumstances and inappropriate room transfers within an institution or from one institution to another.
My understanding is that the general complaint examination process for the health and social services network will implicitly apply to Bill 52. I note, however, that the bill is silent on the practical way that citizens will be able to exercise their recourse with regard to these services or the lack thereof.
In short, I recommend that Bill 52 explicitly specify that the complaint examination process in effect in the health and social services network applies, with the required modifications, in particular with regard to the applicable time line for processing the complaints.
My reflection is based on a holistic vision of end-of-life care. In my opinion, the development of the palliative care offer is intrinsically linked to the openness to offer medical aid in dying. This is of capital importance.
This is why I support this bill, on the grounds that it is up to every person who is capable of giving free and informed consent to decide whether or not to access the care available to them. It up is to this person and this person alone to choose to take advantage of medical aid in dying, insofar as they meet all the criteria set out in Bill 52. The sphere of independence granted to every individual must be able to include this ultimate decision, to allow people to die with dignity. In this regard, I applaud the courage the legislator has shown in this bill respecting end-of-life care.