What should I know about medical aid in dying?
In the spring of 2016, we brought together patients, family caregivers and health professionals in order to better understand their information needs as well as partnership issues in the context of end-of-life care.
What should I know about medical aid in dying?In the spring of 2016, we brought together patients, family caregivers and health professionals in order to better understand their information needs as well as partnership issues in the context of end-of-life care.
The results are presented below.
What should I know about medical aid in dying? - Synthesis report 2017
In June 2014, Quebec enacted legislation governing medical aid in dying. However, the discussions around the adoption and implementation of the law, as well as certain studies, highlighted a need for more information among the general public, patients, family caregivers and health professionals.
In this new context, it is important to understand how to foster partnerships when requests are received for medical aid in dying.Antoine Boivin, MD, Ph. D.
This is why, in the spring of 2016, the Centre of Excellence on Partnership with Patients and the Public (CEPPP) organized two forums called “What should I know about medical aid in dying?”.
What is medical aid in dying?
Medical aid in dying is defined as care consisting in the administration by a physician of medications or substances to an end-of-life patient, at the patient’s request, in order to relieve their suffering by hastening death.Act respecting end-of-life care
Two forums were held: one was a face-to-face event (in Montreal) on May 27, 2016 and the other was held online over a 3-week period (June 1 to June 21, 2016).
Members of the public
- Face-to-face forum 51%
- Online forum 49%
These forums were organized to bring together members of the public and health professionals to discuss two major questions:
What kind of information on medical aid in dying is needed by members of the public and health professionals?
What factors facilitate or limit the partnership between patients, family caregivers and health professionals in the context of medical aid in dying?
A rigorous analysis of the discussions at these forums revealed many information needs. Seven major themes were identified, along with courses of action for future research and initiatives to support partnership around medical aid in dying.
The participants expressed their needs for information within six stages of medical aid in dying.
Thoughts and discussions as the end of life approaches
Making a request for medical aid in dying
Evaluating a request for medical aid in dying
Communicating the decision made in response to a request
Administering medical aid in dying
Documenting and evaluating practices
AMM – Citation 4
What does the law say about minors, dementia and people who are not capable of giving consent? Can the request for medical aid in dying be made by someone’s representative (a legal mandatary, family council, etc.)?[translated from French]
AMM – Citation 5
If there should there be a dispute, between the family, the family caregivers, the care team, the attending physician, the second physician and even the patient, if there should be differences of opinion, conflicting opinions, disagreements, (…) what happens then? It’s the whole issue of risk and crisis management. Who manages this, who’s responsible?[translated from French]
AMM – Citation 3
When someone enters a CHSLD (a residential and extended care centre), you could say that death is just around the corner. It could take two years, but death is imminent. You go in knowing that you won’t be leaving.[translated from French]
AMM – Citation 2
Currently things aren’t all that clear about the role and obligations of certain end-of-life homes, which seem to be resisting the law.[translated from French]
AMM – Citation 1
If we give the public a law, aren’t we responsible for providing complete information, so that people will be well-informed before they submit a request? As far as I know, the hospital doesn’t have a document to give to patients and their families, something to help them think about the issue and support them in their request.[translated from French]
The care partnership is a model that can help respond to many of the concerns expressed about requests for medical aid in dying. Seven main themes emerged from the forums:
Reduce the information asymmetry
between the partners on medical aid in dying
Support the partners
so that they can take part in informed conversations about end-of-life care
Integrate human, social and relational considerations
that are outside the strictly clinical, legal and administrative considerations in medical aid in dying
Clarify the roles and responsibilities
of the various partners
Foster the implementation
of a process for dialogue and mediation as a way to resolve conflicts
Reinforce the relationship
of trust between the care partners, for better teamwork
Create institutional, political and social environments
that are favourable to the various stakeholders collaborating in the exercise of leadership
AMM – Citation 7
The more that people receive relevant information on this subject, the more they will be able to make informed decisions that fully respect their dignity. Knowledge: it’s the power to transform events as they unfold.[translated from French]
AMM – Citation 8
Here the idea of partnership makes so much sense. To support and redirect, without judging. To help! The physician who receives the request (…) must first make the patient feel that he or she understands and welcomes the request WITHOUT JUDGING! No-one on the team should try to change the patient’s mind by making him or her feel guilty, or by lecturing.[translated from French]
AMM – Citation 10
Building a partnership between a patient, family caregivers and health professionals entails engaging in discussions and making decisions together, providing support along the path of life and death…[translated from French]
AMM – Citation 6
One of the big problems lies in the fact that patients, as well as most of the people working in ‘health care,’ aren’t familiar with the eligibility criteria and, in particular, with the problems around the concept of being at the ‘end of life’ and assessing psychological pain.[translated from French]
AMM – Citation 9
Ensure that everyone on the team of professionals around the family in this process is comfortable with medical aid in dying, and support them, despite our uneasiness with death. As someone who has provided support to people at the end of life, I can say that you still need some support each time.[translated from French]
Three courses of action for proposing practical responses to the concerns of the public and health professionals as we implement medical aid in dying.
Course of action 1
Develop common tools to support conversations on end-of-life care.
Course of action 2
Better integrate human, social and relational considerations.
Course of action 3
Support contexts for partnership and conflict resolution.
Download the complete report
(PDF, 3.9Mo)[available in French only]
Questions? Contact us!
An initiative of the Université de Montréal
Direction collaboration partenariat patient
Faculté de médecine de l'Université de Montréal
Canada Research Chair in Patient and Public Partnership
CHUM Research Centre
Institut de recherche en santé publique de l'Université de Montréal
Canadian Foundation for Innovation