“We shouldn’t have to choose between suffering and dying”

Does the bill relating to the right to assisted dying, currently under discussion in the Senate, seem respectful of the person?

After agreement by the medical profession, this project provides for a delay of only two days before the administration of the lethal substance. A few days is too little time to consider that there is real consent.

Accessing euthanasia or assisted suicide could be faster than obtaining a pain consultation! Furthermore, if access to palliative care is insufficient – ​​therefore if the material conditions to cope well with death are not met – can we really speak of choice? Under the guise of defending the patient’s autonomy, the latter ultimately has the choice between suffering and dying. It’s an abandonment of people.

What vision of death does the bill reveal?

By only considering death as a moment of suffering to be removed, it shows our need for control. Assisted suicide and euthanasia have, in fact, the advantage of having a very “clean” and controlled procedure. We want to control everything in our lives, even our death. Is man all powerful? Our whole existence teaches us that no. In support and palliative care, we can only try to provide relief, we cannot control everything.

This project also demonstrates the way in which our society struggles to consider interdependencies. He who is cared for also contributes to others. This is the last step of the “care»*: receive something from the other, show them that they have something to give. It’s not because I no longer have the capacity to do much that I don’t contribute anything to others.

Why did you choose to work on the particular time of agony?

We often say that we are “afraid of death” But it seems to me that we are more afraid of the moment of death and the suffering that accompanies it. I wondered what really happens during agony. Is it just a moment of suffering to be suppressed, or is something else at play? Today, we see death as a moment where there is only misfortune, and the person at the end of life only as a dying person.

But this is not what palliative care caregivers, nor their accompanying loved ones, feel. During these last moments, there is also life, joy, affection, relationships. Beautiful surprises can arise until the end. The last word, the reconciliation, the last look. Until the last breath, a revelation of the person plays out, to themselves and to others. It is reductive to say that there would only be pain and suffering.

Why do we have this reductive conception of the end of life?

The death of others confronts us with the fear of our own death. Our representations, our imagination mislead us. We tend to think that when we experience loss, dispossession, then there can be no good. During our lives, we already have difficulty accepting our addictions. We struggle with the question of our finitude. If we were more accepting of weakness, we would view moments of illness and the end of life differently. We would see them as moments of suffering but also of attention to others, of relationships.

What would a better reception of our fragilities change in our relationship with others?

If we recognized that fragility is part of each of our lives, we would be more attentive to those who are most vulnerable. If I accept my limits, I can be more humble and considerate of those of others. I don’t immediately ask myself what it can bring me. I stop evaluating myself and others by measuring what we are capable of doing, but I am developing a culture of gratuity. I then become more available for the encounter, and more attentive to what the other truly is. We are used to first looking at what our impact is, what we bring. We could relearn how to simply be present for each other.

What does support allow in these moments?

The treatment provides a secure space for the person. Its role is to make surprises possible, right to the end. We can’t guarantee them, but we can say “I won’t abandon you, I’ll stay here and we’ll try to look for something together.” But for that you have to have a life a priori. The connection must be maintained until the end, even for people in an altered state of consciousness. Is treatment only a technical act, the follow-up of a procedure? Or is it a relationship? Euthanasia breaks the pact of non-abandonment which is the basis of care and the relationship.

What can a very suffering person bring to those who accompany them?

A caregiver told me that caring for her patients’ bodies had reconciled her with her own body. The caregivers also say that with the patients, they have a very real, very authentic relationship. Through contact with them, they learn to live better, they remember what is truly essential. It is sometimes even difficult for them to return to a life full of entertainment afterwards. The companion learns with the dying to simply be present. The important thing is to be there. Vulnerability requires us to be rather than to do. It leads us to review our relationship with time. Instead of fragmented time, made profitable minute by minute, it brings us closer to time lived in the moment.

What have you learned from contact with caregivers?

They taught me that in all cases, the most important thing is to listen. You must first hear a complaint and recognize it as legitimate. Then, you have to hold the connection, be there. The caregivers also taught me humility. Indeed, there is no “good death.” We cannot determine what successful support is. We try to predict everything, we make “decision trees”.

Yet there is always an uncertainty, a worry. The teams discuss a lot before making a decision. What are the indicators of good care? Caregivers like to say to themselves: “He is peaceful, so that means I did a good job.” But have they done a bad job when the person is not peaceful? Some people think that they absolutely have to be there when the person dies. Otherwise, they feel like they are bad caregivers. But sometimes the person chooses to die alone. Studies show that the timing of death is never completely random.

Isn’t this delegation too heavy for caregivers to bear?

Those who work in palliative care tend to enjoy their job. When they are faced with deaths in other services, it is more difficult for them. They have the feeling that death is not yet integrated, that it remains on the sidelines.

Can we prepare for our death?

Maintaining the ideal of a “beautiful death” is normal and necessary. But this is not necessarily what we will be able to experience. We would like to die either by controlling, or by welcoming, or by abandoning ourselves… The fact remains that we will die a little as we can. Some rare people want their death to be like their entire life. They have decided how they want to die and they are finding ways to get it. But most often, when death approaches, we change our frames of reference and we learn to welcome what is happening. Everything we believed to be true can be turned upside down.

In reality, I don’t think you can learn to die. I think that philosophy, when it considered that “to philosophize was to learn to die”, meant that preparing for one’s death helped one live well. We are made for life, so we never fully learn how to die. On the other hand, we can learn to live well, by acquiring more authenticity, for example.