Advance request for medical aid in dying: “This SNP urges caregivers to speak up more about their needs”

“Specialized nurse practitioner” means I wear two hats: I provide nursing care, but I also have a medical role. I can follow patients independently—investigations, diagnosis, prescribing medications, therapies—without reporting to a physician.
“Primary health care” refers to the very first point of access patients have. The second level is specialty care, and the third is subspecialty care. That’s the structure. Recently, palliative care has been officially included in primary care.

Good question… Some physician colleagues who provide medical aid in dying don’t practice in palliative care at all.
For me, it has to be part of it. I work on a palliative care team, and I also provide medical aid in dying. In the continuum of care I offer to my “palliative patients,” medical aid in dying is an end-of-life option for some of them.
In Québec, the law changed in 2023 to authorize specialized nurse practitioners to evaluate and administer medical aid in dying. The law uses the term “competent professional”—which includes both physicians and nurse practitioners.

I had been a nurse practitioner since 2014 and was already involved in medical aid in dying since 2016. When nurses refused, for reasons of conscience, to place IV lines or accompany the physician at the bedside, they called me.
So when the law changed in 2023, it was natural for me to administer this care. What drives me is the patient’s autonomy and self-determination. That matters enormously to me; I am convinced that people should have the right to end their lives the way they want.

All along the way! Every time our palliative care team takes on a patient, caregivers are there. Their role is essential—especially when care is provided at home. It would be impossible without them. From the start, we build an alliance. And when I meet a patient following a medical aid in dying request, the caregiver is almost always present. Often, the subject has already been discussed between them.

I use very precise words with people because I want to avoid any confusion. I tell them: “This is the administration of medication that will cause death. We give the medications, it will take a few minutes, and death will occur.”
But it’s more than a technical act. It’s a space where we accompany people in extreme vulnerability, at a moment when their personal defenses and social masks no longer exist. We must be delicate and nuanced in our interactions. Supporting caregivers also requires rigor and an enormous amount of humanity.
Advance request for medical aid in dying exist for people with neurodegenerative diseases that lead to incapacity. Few people are concerned. At the time of the request, they must still be capable—at a very precise stage when the disease is present but not advanced. It’s a choice made now, for later. It’s new, delicate terrain, and it needs to be approached with gentleness and compassion.

Yes. Clear explanations are essential. To avoid breaking trust. Because these people place their trust in us.

When the patient signs the request, I’m often—but not always—present, sometimes simply because I’m on call at the hospital. Sometimes I’m called later for the first evaluation.
There are always two evaluations: evaluator number 1 and evaluator number 2. The first is the one who will administer, the second confirms eligibility. Most of the time, I am evaluator number 1, since I’m the only member of my four-person team who provides medical aid in dying. From the first meeting with the patient, I’m responsible for the entire process, including medications. I am with caregivers every step of the way.

Most of the time, they are grateful that this care exists and that it’s an option.
Often, caregivers step into the background, leaving the spotlight on the patient. So I always ask the patient, in front of the person they care for: “What does your caregiver think about your choice?” Most of the time, the patient answers: “We’ve already discussed it, we’ve been on the same page for a long time.” Then I turn to the caregiver to give them the chance to voice their feelings. And in their answer—“I don’t want to go against my loved one’s wishes”—there is always so much love.

Yes, but they rarely name them! This is what I want to say to caregivers: I wish they would verbalize their needs more. I invite them to express their need for support, for recognition of their lived reality, to be accompanied and to understand what’s happening. I encourage them to ask questions so we can explain concretely what they will see and experience—how long it will take, in what order, what the steps will be.
When we tell them that ambivalence is normal, it brings relief! They feel reassured that the person they care for will no longer suffer, but at the same time they grieve the loss. It’s important for caregivers to know that this ambivalence is universal, and that it’s okay to welcome these emotions.

It depends on the expressed need—and on the region. If I can address it myself, I do. Since I’m based in Sorel-Tracy, if grief support is needed, I refer to Maison Victor-Gadbois. In our CLSC team, we also have a social worker specialized in bereavement follow-up.
When patients make a request, I’m not always there; my colleagues hand out the official documents from the Ministère de la Santé et des Services sociaux.

This role applies to advance request for medical aid in dying, not current requests.
Trusted persons become guardians of a choice made earlier by the patient. Some find peace in this: “I will carry the voice of what the person I'm caring for wanted.” Others feel fragile: “I’m afraid of making a mistake. With cognitive decline, my loved one has already changed… Will this still be what they want?”

It takes a lot of listening, support, and clarity, so they don’t feel the weight of the decision on their shoulders. I put things into perspective: “Today, we are signing a document together. This is the decision that will apply. As a caregiver, you won’t have to choose for the person you are caring for.” It’s the patient’s legal will that takes precedence. Consent isn’t transferred to caregivers. It was given beforehand by the patient.
Caregivers are not there to decide. We must dispel that belief. The trusted person’s role is to accompany, not to decide.
Sometimes, when people make advance requests, they struggle to find healthcare professionals willing to support them—since not all are obliged to. More tools are still needed, even though a guide for patients and caregivers already exists. This is new for everyone. Over time, we’ll see what needs emerge.

Even if justified, a refusal feels like a blow to a suffering patient. Families feel helpless, abandoned, unheard.
These situations require extremely delicate communication. We must explain, keep supporting, and remain present. We must tell patients and caregivers that they have the right to feel disappointed and angry, that their emotions are valid, and that they are not alone. When I have to deliver a refusal, often in front of the family, I say: “It’s a no for today, but you can make another request.” And as a palliative care team, we stay with them.
With advance request for medical aid in dying, there’s a lot of misunderstanding. Some think they can be made “for anything and everything,” which isn’t true. A refusal can be destabilizing. The worst thing would be to say no and then withdraw! That could lead to tragic outcomes. We need to set up support, refer them to community organizations and resources, and keep accompanying them. Plant hope again.

During evaluations, when I ask patients why they’re making a request, they often reply: “I don’t want to be a burden on my family.” Caregivers usually respond: “You’re not a burden! I don’t mind being with you, enjoying this time together!”
So, look “behind the words.” Why does the person your care for feel the need to request medical aid in dying? Open that conversation.

Ask for help in finding appropriate care. What more can we do for this person? How can we make their journey softer, their path gentler?

The first thing… Well, I’m not sure I want to say this, but here goes: there is a human cost. Sometimes patients ask me: “Marie-Josée, how are you? How does this affect you?” Every time, it brings me to the verge of tears. It leaves a mark on the soul, no doubt. You have to accept that vulnerability, express it. If needed, I call a colleague to talk. I adjust my schedule for balance between medical aid in dying and “regular” patients. Each time I grieve a patient and their family, I close the loop—and then move on.
Secondly, patients teach me so much through their serenity and acceptance of death. It changes me. It reminds me how fragile life is. The dignity people show in their final moments, the affection they share with one another… Often, when I walk into the room for the procedure, I feel the love in the air. At the end, there is nothing left—except love.

• Medical aid in dying
• Advance resquest for medical aid in dying
• CISSS de la Montérégie-Est
• La Maison Victor-Gadbois
• Helping the person I am caring for with their request for medical aid in dying
• End of life dossier
• Find resources

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