Information needs of the public and health care professionals regarding medical assistance in dying
| Stage of patient’s journey | Need(s) expressed by members of the public and professionals | Need(s) expressed by members of the public only | Illustrative quote |
|---|---|---|---|
| 1. Reflections and discussions as end of life approaches | Where can MAiD be delivered? How does MAiD align with current (and future) laws? How should the eligibility criteria be interpreted? | How is MAiD distinguished from other end-of-life practices? What are the eligibility criteria for MAiD? How can a patient express his/her last wishes and ensure that they will be respected? | “It seems that every time they come up with a new term, there is a whole new semantic field appearing, which escapes ordinary mortals that are patients.” (Public) “Currently, the situation is ambiguous as to the role and obligations of some end-of-life care settings that seem to be resisting the law.” (Public) “Who determines the time it takes for a patient to be considered at the end of life?” (Public) |
| 2. Formulating request for MAiD | Who can make a request? To whom can a request be made? Is psychosocial support available when a patient is considering a request? How can the “openness” to initiate a conversation about MAiD with relatives and health care professionals be created? Where does MAiD fit along the full range of end-of-life care options? | When can a request for MAiD be made? | “What are the dispositions of the law for minors, dementia and all those who are not capable to consent? Can the representative of a patient (legal representative, family council, etc.) apply for MAiD?” (Professional) “How can we create an openness between professionals and patients to properly discuss all these choices?” (Public) “Will psychological support be provided? Deciding of the day and time of one’s death is somehow empowering but nevertheless distressing.” (Public) |
| 3. Evaluating requests | How are requests evaluated and by whom? If a physician refuses to evaluate a request, how will the request be transferred to another physician? What is the scope of conscientious objection to MAiD? If there is a disagreement in the evaluation of the request, is there a mediation process? | What are the expected delays for evaluating a patient’s request? Can a patient have access to MAiD if he/she is experiencing psychological suffering only? | “What is acceptable in terms of reasonable delay? … If his condition worsens, can the patient get [MAiD] imminently?” (Public) “If a physician refuses to practise MAiD and relies on the chief executive officer [to forward the request to another physician], how will the request be assessed in reasonable time? This is an urgent request since, to meet criteria, one must be dying!” (Professional) |
| 4. Communicating decisions | How are decisions communicated in the case of both approval and refusal? | If a patient changes his/her mind after the request is accepted, can he/she reapply? Is it possible for a patient to apply to another physician if a first request has been refused? | “Will it be possible to see another doctor, if, for instance, I don’t meet all the criteria? Is there some form of mediation process?” (Public) |
| 5. Delivering MAiD | Are the necessary resources available in all institutions (and in all regions) to provide MAiD? What is the waiting time for practising MAiD once a request is accepted? What is the role of the health care team and relatives during the process? What support is provided to the care team and relatives before, during and after the administration of MAiD? What are the possible harms and side effects associated with administering MAiD? What measures are in place to preserve the confidentiality of MAiD? How can the process of delivering MAiD be humanized? | How can continuous communication between the patient and his/her physician, from the moment a request is made to the moment MAiD is delivered, be ensured? | “In a hospital, the doctor often changes every week. Several doctors may see the patient, and the interviews are quite short. How can we make sure that [the dialogue] will be done to the patient’s satisfaction?” (Public) “Where are the interdisciplinary team and, especially, the relatives? Are they excluded?” (Public) “Do we have support after? Are there any resources after all these steps? It is a pretty traumatic way to end a life! Nothing is mentioned in the law, as much for the health professionals as for the patients and their relatives. I know there is an interdisciplinary support group for MAiD … but is it functional? (Professional) “What are these drugs [used for MAiD]? Most importantly, what effect do they have on vital organs and on the brain? How can we measure the level of consciousness? Studies have shown that patients in a coma can feel pain even if they look peaceful on the outside!” (Public) “Is the injection method really foolproof? Could it happen, during the process, that something doesn’t work? ‘We thought the patient was dying,’ but a problem occurs! Are there ways to solve these kinds of problems? (Professional) “How can a hospital medical environment provide a meaningful environment for the patient receiving MAiD? For instance, would candles, usually not allowed in hospitals, be allowed for MAiD?” (Professional) |
| 6. Documenting and evaluating practices | Who is evaluated and accountable? How will the results of the evaluation be made public (and what will they be used for)? | Who evaluates the practices and how? | “The Act [Respecting End-of-life Care] creates a Commission on End-of-Life Care for the whole province, but each institution does not appear to have any evaluation or control mechanism other than the Council of Physicians, Dentists and Pharmacists of Quebec.” (Public) “What are the obligations imposed on the [health care] institution with regard with the quality of the patient’s environment? How will a calm and respectful environment be ensured for patients and their relatives, just like in palliative care units?” (Professional) “What are the consequences for the physician if the Commission on End-of-Life Care judges that he/she made a mistake?” (Public) “Ultimately, will [the Commission] only give us statistics on the places where there is more MAiD and where there is less?” (Public) |
Note: MAiD = medical assistance in dying.