Medical assistance in dying from the perspective of loved ones

Nathalie: It is still very taboo, in the sense that people tend to defer to the authority of medicine and focus on the person’s physical condition, and there’s also the religious aspect, which is still very present, the idea that a person will pass away when God decides. It’s not yet something that’s openly discussed with caregivers. It’s often very taboo because caregivers generally want to keep their loved ones alive as long as possible, despite the exhaustion and everything else. Medical assistance in dying is a personal choice for the person who requests it. And I think caregivers feel very uncomfortable bringing up the subject.

Dr. Laperle: I would say yes and no. Yes, in the sense that we’re uncomfortable with death, which may also be normal. Death is huge, so it’s normal to feel unease. But at the same time, death today is institutionalized, meaning that we die in designated spaces that are, in a way, hidden. Not so long ago, the body would be displayed—in the home, for example. Death was everyone’s business.

Death has also been professionalized. I myself am part of this professionalization, the idea that death and mourning are matters for experts. In the past, support for people in mourning was provided by ordinary people, our neighbours, our community. So yes, it’s a taboo, and at the same time we are fascinated by death. It’s as if we want to get closer to it, and yet it scares us. We hear a lot in the media about medical assistance in dying for others. But when we come into contact with death first or second hand, our own death or that of our loved ones, that’s where it’s more of a taboo subject. That’s when it becomes very difficult to talk about, because obviously it affects us.

Nathalie: Very much so. They already feel constant guilt about not doing enough. The decision has to be up to the person who is ill. But throughout the journey, the caregiver has been torn by this guilt. Then they reach the end of the road and they’re exhausted. The emotional burden is always very heavy.

Dr. Laperle: Many people come to see me because they have no space where they can open up about death or their grief. But if it were more common, more encouraged, to talk about it, people would probably feel much less alone. The entire system, all the scientific and medical advances, are geared towards defying death, delaying death, fighting death. At some point, though, it must be accepted, and it may be harder to talk about for all those reasons. Perhaps medical assistance in dying emerged in part because of this, because we tried to medicalize death, to increase the quantity of life, but at the expense of quality. For some people, medical assistance in dying is literally a way to regain absolute control over their own narrative and say: it won’t be up to medical professionals to determine how my life ends, it’s up to me.

Dr. Laperle: Rituals, in general, are beneficial for caregivers. They help reconnect the pieces that have shattered, and they offer symbolic meaning and comfort at the beginning of the grieving process. However, I would qualify that: the ritual that’s right for one person may not be right for everyone. And that’s where the challenge lies. Most people who receive medical assistance in dying have loved ones with different needs. So a ritual that is very suitable for one person may be hurtful to another. Can families create a space for dialogue to try, as much as possible, to imagine a ritual together? Something that may not be perfect for everyone but in which everyone can find their place. Obviously, when it is discussed beforehand, when everyone’s perspective is heard and respected, there are no unpleasant surprises when the time comes. But we must keep in mind how complex it is to find the right approach for everyone involved. When emotions run high, our ability to reason, think, and reflect is impaired. Some people need company; others experience this more privately. People often want to have a ritual but in fact there can be several—including ones held months after the person died.

Dr. Laperle: Increasingly, the scientific literature indicates that it is neither easier nor more difficult in general than, for example, a natural death with palliative care. When we meet with individuals, we find an incredible range of possible reactions: some people experience it with great peace and feel that it helps their grieving process. At the other extreme, there are people who will have post-traumatic stress reactions afterwards, who may feel abandoned. Even if the person receiving medical assistance in dying is prepared and their loved ones are grateful for the opportunity to prepare for death and say goodbye, it happens very quickly. Learning of the medical assistance in dying request, the imminence of death and the beginning of the grieving process are a lot to process. 

Dr. Laperle: As psychologists, we sometimes help people think about how to open that dialogue—how to bring it up, how to adjust expectations. Medical assistance in dying can be highly polarizing: some people strongly support it because it aligns with their values and makes sense to them, while others feel it contradicts deeply held beliefs, especially about the sanctity of life. People may become entrenched in their positions and it can feel like there is no middle ground where meaningful conversation can happen. 

What are the values that will guide us? This does not mean giving up our beliefs but at least trying to understand the other person’s perspective and respecting their boundaries. If I have a brother who doesn’t want to be present at the medically assisted death because it goes against his values, how can we talk about it and respect the fact that he won’t be there but we can get together afterwards? 

Nathalie: To make peace with our own emotions throughout the grieving process, which is a time of great sadness even when you are at peace with the decision. Be aware of your limits, then allow yourself to experience this with the person who is making the request. You deprive yourself of something meaningful when you avoid sadness, because it has a positive side. It brings us closer together, it creates a space of intimacy, it breaks down certain barriers when we allow ourselves to be sad, to cry together. So, by preventing ourselves from crying, we also deprive ourselves of that closeness. We mustn’t forget about ourselves and put that sadness aside. It is precious too, even if it is deeply painful.