Helping the person I am caring for with their request for medical aid in dying

Navigating the application process for medical aid in dying

Medical aid in dying “consists of a doctor administering medication to patients, at their request, in order to relieve their suffering by bringing about their death,” according to the Québec government’s definition.

Medical aid in dying is “an exceptional intervention” governed by requirements (ability to make the request, health conditions) and steps for applying.

In this particular context, the person’s decision will undoubtedly raise a number of questions and even concerns, and may affect your own values and beliefs. How can you work with them on their request for medical aid in dying? How can you accompany them on this unique journey?

Seven tips for your journey

These tips are inspired by a conversation with François Rainville, social worker at Maison Michel-Sarrazin. He has extensive experience in medical aid in dying situations and palliative care.

1. Be an active participant rather than a spectator. Depending on your personal preferences, you can stay involved;
2. Remain a caregiver. If you define yourself as a caregiver, it means that you are very committed to the person you are caring for. Give yourself the right to be caregiver to the end if that’s what you want;
3. Accept your own reactions. “It depends, among other things, on our personality, our relationship with the ill person, the context surrounding the request for medical aid in dying and the person’s requests,” says François Rainville;
4. Express your needs for help and support as a caregiver;
5. Organize rituals … or not, while respecting the wishes of the person you are caring for. There’s no easy formula, only the one that best suits the person you are caring for;
6. Share your emotions and needs with the person you are caring for. This is just as important as respecting their own decision;
7. Get informed and understand the situation better. You can familiarize yourself with the medical aid in dying process explained on the gouvernement du Québec website.

Topics related to medical aid in dying

Medical aid in dying raises thoughts about the end of life of the person you are caring for:

• Consent. The patient must be in a position to give free and informed consent to medical aid in dying at the time of their initial request. They are free to change their decision. This is particularly demanding for the caregiver, who must adapt to the situation;
• Dignity at the end of life. How can you support someone in their quest for dignity?
• Pain. We all share this legitimate fear of physical and/or psychological suffering, which the medical team strives to take into account. But who’s concerned about your own pain at the thought of the pain the person you are caring for is experiencing, and the grief you are anticipating?
• Loss of autonomy. This is often cited by people as the reason for requesting medical aid in dying. Faced with the fact that the person you are caring for refuses to be a burden to you, you are torn between all kinds of emotions;
• Palliative care. In addition to medical aid in dying, the Act Respecting End-of-Life Care also provides a framework for palliative care. Stakeholders point out that more people need to know about palliative care.

Questions and possible solutions

Is medical aid in dying only possible in hospital?

It can be administered in hospitals, residential and long-term care centres, or at home. It is also administered in palliative care hospices. In Québec, in 2020–2021, 39% of patients received medical aid in dying at home and 48% in hospital. The location is selected by the person concerned.

My partner is at the end of life. We were thinking about medical aid in dying. Our doctor also talked to us about palliative sedation. What is palliative sedation?

Continuous palliative sedation is part of palliative care. Like medical aid in dying, it is governed by the Act Respecting End-of-Life Care and meets specific requirements. You may also wish to discuss this treatment option with your nurse and/or social worker.

My father’s request for medical aid in dying has been accepted. I’m stunned… What can I expect?

This may come as a shock to you, especially if the date has been scheduled. In the days leading up to the administration of medical aid in dying, the nurse, social worker, psychologist or spiritual care worker accompanies the family and friends. There may be a ritual of goodbyes, and the person chooses who will be present during the three successive injections; you can attend all or part of them, as you wish.

I’ve just learned that my father’s request for medical aid in dying hasbeen refused. What do I tell him when faced with his suffering and disappointment?

It’s completely understandable. The refusal can be difficult for him, as well as for you: feelings of distress, sadness, anger or even suicidal thoughts may be triggered. Discuss with the medical team the realistic solutions that are available now in terms of treatment, therapeutic options and palliative care. Don’t isolate yourself with your emotions in the face of this changing situation. Your social worker can refer you to resources or a helpline service.

I’ve got 100 questions running through my head…

You’re not alone! The Association québécoise pour le droit de mourir dans la dignité (AQDMD) provides answers to the most frequently asked questions about medical aid in dying.