“Medical aid in dying leaves no one indifferent”

Let’s start by saying that people who ask for medical aid in dying don’t want to die. They want to stop suffering. They hear a lot about medical aid in dying, but they don’t know exactly what it is.

Someone who is suffering physically, spiritually or psychosocially, may come to think about medical aid in dying, when their life no longer makes sense to them. But the definition of a meaningful life is not the same from one person to the next. For one person, losing their freedom and no longer being able to drive may represent intolerable suffering, whereas another person would have no problem with it. A person in a nursing home, bedridden 100% of the time, would have no problem with their situation as long as they can have visits from a significant other, while another might find the condition unbearable.

Today, medical aid in dying no longer concerns only an end-of-life situation. It is also available to those who have a serious incurable condition that generates suffering that the person affected considers intolerable.

Medical aid in dying leaves no one indifferent. The person we accompany is suffering so much that they want to die! We’re all affected by it. All sorts of reactions are possible. We respect the person we’re caring for; we know it’s their wish, but we react all the same, and we’re never indifferent! As Josée Masson of Deuil-Jeunesse puts it so well, all reactions have their own PIN: Personal, Impredictable and Normal. Among other things, this depends on our personality, our relationship with the person who is ill, the context surrounding the request for medical aid in dying and the person’s requests.

Obviously, the dynamics depend on the location: hospital, CLSC, home, etc. In the case of the home, the doctor, along with the nurse, is very involved, and there isn’t necessarily an interdisciplinary team involved in the process.

I currently work at the Maison Michel-Sarrazin, so I can speak more about the context of palliative hospices and end-of-life care. In this context, the social worker is immediately involved in all situations related to medical aid in dying, because it’s not a trivial matter for anyone. As soon as a request is made, a physician assesses the situation, then there is a second assessment by another physician, and a nurse is involved from the outset. The social worker meets with the person and their loved ones, and explains their role in the process and, above all, how they can assist the family, depending on their needs. It’s up to the family to decide how much they want the social worker to support them.

When a person starts talking about medical aid in dying, it doesn’t mean that we should organize it as quickly as possible without asking any questions, telling ourselves that it’s their right. First and foremost, you need to inform them of the criteria, what exactly medical aid in dying is and what other options are available. You have to ask questions and discuss the issue with them. Why is the patient asking for medical assistance in dying? What is the source of their suffering? We also need to discuss the other treatments available: pain relief, care for depression and anxiety, home adaptations, etc. This can help a person make a more informed choice. Obviously, we go along with what the person wants. And if the person chooses medical aid in dying, we must not abandon them, and we must do everything we can between now and the chosen date to try to ease their suffering.

Absolutely. Here, the context in which I work is solely that of individuals who are facing end-of-life situations. The role of the social worker is to accompany individuals and their significant others and caregivers, to make sure that everything is clear to everyone, and to facilitate communication between all these people. I’m also there on the day the medical aid in dying is performed. I don’t attend the medical aid in dying; I retire to a separate room, where loved ones can join me if they wish. And I’m there before and after. After the death, we talk together about what has been experienced, and I talk about the bereavement services available at Michel-Sarrazin.

I try to make sure that everyone feels at ease and that they respect each other. They often say, “I respect their decision.” My job is to ensure that the person requesting medical aid in dying also respects the wishes and needs of their family and friends. I try to mitigate anything that might interfere with the grieving process and, if there are barriers, I try to remove them. Sometimes this isn’t possible; we have to act with humility, respecting people’s need for privacy and their decisions.

There aren’t any! The most beneficial rituals are those chosen by the person and their loved ones. These may or may not be religious rituals. For example, I recently asked a family what they wanted. They didn’t want any planned, prepared rituals, it just didn’t feel right. On the day of the medical aid in dying, there was a whole ritual. The person receiving the medical aid in dying placed everyone around her, including the doctor, the nurse and me, and paraded each person in turn to tell them what she wanted to say… She created her own ritual.

Some families may be less adept with words or find it difficult to create a meaningful ritual. Some ideas can be suggested by spiritual care workers, whether lay people, priests, imams or others, who are qualified to lead rituals. Sometimes, too, it’s quite simple: people have sushi delivered, laugh together, eat, chat and then that’s it. The “right” ritual is the one chosen by the person and their close relations.

First, I need to be informed. Then I can talk to the caregiver, accompany them and see what can be done to prevent it from turning negative. It’s a question of working together to find some meaning in what is being experienced. For example, we can try to put ourselves in the shoes of the person who has chosen medical aid in dying, or try to understand the suffering that led to this decision.

Is the caregiver who disagrees feeling guilty for not having done the right thing, or for not having done enough? I dig deeper to understand this disagreement and discuss with them the fact that they don’t have to agree with the decision. They can give themselves the right to disagree without being rejected from the whole process. Will the opportunity for dialogue be lost? Will the caregiver stay with this conflict of values, or will they move beyond it? How can they still be active participants in the process and do something meaningful? I can try to facilitate these elements, but ultimately it's the people involved who are the actors of their own situation.

Absolutely. If the person identifies as a caregiver, they’re bound to be very invested. If there’s disagreement, there’s probably also a strong sense of guilt: “I’m giving everything for her. Am I not good enough?” This can be a difficult issue to live with, especially for caregivers who have been caregivers for some time and who have helped the sick person a great deal.

The caregiver wants to be involved. They identify as someone who takes special care of the person who is ill, and they invest a lot of energy, time, involvement and effort in this relationship. Identifying as a caregiver means being very involved, and it means that the person is important to us. A decision to provide medical aid in dying without being involved in the process of what will happen can be difficult to live with; you can feel rejected. In this sense, I think it’s all the more important for the caregiver to be involved when it comes to providing information about medical aid in dying, in the process and in the days leading up to the administration of medical aid in dying: ritual, choice of clothing, music, people present, etc.

I believe that it is all the more crucial for the caregiver of a person who has requested medical aid in dying to take an active role: to remain involved with the person, in short, to be a caregiver to the end. To be able to say: I was the person’s caregiver right to the end. As a caregiver, you want to actively help. Playing an active role rather than being a bystander helps you adapt to the situation, and makes mourning easier.

In the context of medical aid in dying, the place, day and time of death are known. This brings anticipation and a measure of the magnitude of what will be experienced. The opportunity is there: I know what’s going to happen and when it’s going to happen. So, in the meantime, I can remain active in the preparations: a last supper together, rituals, making sure we say what we need to say to each other, using the time ahead of us to settle things that remain to be settled and avoiding regrets. I can maintain an active role in the medical aid in dying process and in funeral arrangements. This active role helps with the grieving process. But sometimes, the time available is short and it’s a challenge for those around us.

I’ve learned that it’s never a simple affair. All caregivers experience something unique, depending on the type of relationship they have with the person requesting medical aid in dying.

I’ve also learned to make sure that I always understand what caregivers need, and that my approach is individualized to the person and the situation.

Finally, I learned that medical aid in dying is an extremely intimate matter, and that needs differ from one situation to another, requiring a humble and individualized approach.

• Maison Michel-Sarrazin;
• Composer avec l'anticipation et le deuil des proches en contexte d'aide médicale à mourir;
• Helping the person I am caring for with their request for medical aid in dying;
• Dealing with grief;
• Managing guilt;
• Talking about advance medical directives with the person I am caring for;
• Épisode 7 - Le deuil dans le balado des proches aidants;
• Finding resources.

Subscribe to the Appuilettre, the Newsletter for caregivers, and receive each month, testimonials, thematic files and interviews.