Psychiatrist, geriatrician, doctor of philosophy and ethics, Véronique Lefebvre des Noëttes takes us into the complex end-of-life issues that mark her daily life.
Why doctor – You just published “To die by prescription, or to be accompanied until the end?” (Editions du Rocher), and for 35 years you have been following people who stay in one of the largest geriatric hospitals in France. What do the end-of-life patients you see suffer from most?
Véronique Lefebvre of Noëttes – Contrary to what one might think, most of my patients are not afraid of dying per se, but rather of leaving this world in excruciating suffering.
Many also have a hard time being alone at such crucial moments, because there is still too much avoidance of the dying person’s room, even among healthcare professionals.
Many are also sad at the thought of dying in hospital, because the majority of my patients would prefer to leave our world at home.
Why do the majority of French people die in hospital?
Because it is very complicated to organize a death at home. Often, we put the devices in place, but the family cannot bear the ordeal and sends the patient back to us.
How do you prepare your patients for death?
It’s very difficult, but I tell them that we will be by their side when the final hours have come and that we will increase the morphine or sedation if necessary.
I also encourage them to talk about their lives and how they perceive themselves, often with the help of psychotherapy.
Do you have the same approach with people whose lucidity is impaired?
Yes, I do psychotherapy with everyone, including people with Alzheimer’s disease. It is not because they have cognitive disorders that they have nothing to say about their lives.
End of life: “often, a simple caress is enough to soothe the dying”
Concretely, how does agony happen?
Word “agony” means “to struggle against”. It is an extraordinary moment in the literal sense of the term, during which the person generally emits groans, pauses in breathing and makes withdrawal movements. All these manifestations are not necessarily synonymous with suffering: often, a simple caress is enough to soothe the dying.
Do you encounter any difficulties in your work, and if so, what difficulties?
In general, there are problems when the family does not accept that the person is at the end of life and demands that they continue to be fed or cared for.
There are also inverse problems. For example, I was confronted with a lineage who wanted the 102-year-old grandmother to be euthanized because she had had a stroke and her children and grandchildren no longer recognized her. However, this woman had clearly told us that she did not want to die at all.
Another example: a 70-year-old gentleman one day asked me to euthanize him because he could no longer do… a marathon!
What do you do in these cases?
In these cases, it is necessary to see the patient, his family, the doctors and psychologists of the hospital so that everyone can express themselves and thus find an adequate time frame for care.
What do you do once the person dies?
Our team meets to find out how the person left. It also allows me to verbalize if I am confronted with life stories that upset me too much. We also take the time to announce to other patients in the department that the person has died, with a notice that they can choose to open or not.
End of life: “my job still impacts me psychologically”
Does your job still impact you, or has it become routine?
Yes, my job still impacts me psychologically, even if I know my limits.
What are they ?
I started my career in a pediatric hematology department, and I stopped because it was too hard for me to see the lives of all these babies disappear.
Do you need to be trained to do your job?
Yes of course, because once again, it’s not easy. Not everyone can do that.
Do we now have the means to reduce all the physical pain linked to the end of life?
Yes, caregivers today have a pharmacopoeia available that can reduce almost all physical pain, even if it means putting the person to sleep or sedating the person for treatment that is too painful.
Many French people notice that their loved ones “die badly”. In your opinion, does our French system currently allow us to always die in good conditions?
No not at all. The implementation of palliative care was initiated a long time ago by François Mitterrand. However, today there are still 21 French departments which are not provided in this area. And when this is the case, staffing levels are very often insufficient. In my structure, for example, we only have four palliative care beds, a “half-psychologist”, “half-doctor” and a single nurse per thousand beds. It’s scandalous.
End of life: “the palliative culture of care would also benefit from being developed”
Review of the new end of life bill must begin in May in the National Assembly. What do you think it should contain to change things?
Finally, more human and financial resources should be given to palliative care.
I think that the palliative culture of care would also benefit from being developed, because it is currently very insufficient in France. Many doctors still think, for example, that losing a patient is a failure, whereas supporting someone until the end is not.
Finally, existing end-of-life laws should be brought to life and developed.
Does the Leonetti law have any weak points, in your opinion?
Yes, it is not well known and not developed enough. Furthermore, we still do not have any concrete figures to evaluate it, so we are constantly guessing. It is not normal.
What does it actually allow?
It makes it possible to refuse treatment, limit resuscitation, give opioids and initiate deep sedation until death. This framework, when properly implemented, makes it possible to cover almost all end-of-life cases.
End of life: “the Belgian model is not applicable in France”
Is Belgium a model to follow when it comes to end of life, in your opinion?
I think that the Belgian model is not applicable in France, in particular because we do not have the same culture.
To give you an example, I recently presented at a conference in Brussels the case of a 92-year-old man who had just made three suicide attempts. Arriving in my department, he explained to me that he was indeed very depressed to have AMD and to no longer have news of his only daughter. So I prescribed him antidepressants, and after a while, he no longer wanted to die at all. My approach greatly shocked a Belgian doctor present in the room: he directly called out to me to tell me that he would have directly helped the nonagenarian to die without going through the medication box.
What about the Swiss model?
Same thing as for Belgium, because in my opinion it leaves people at the end of their lives too much alone in the face of their distress.
Is there “death tourism” between France, Switzerland and Belgium?
We must be right: only around fifty French people have died in Switzerland or Belgium over the past ten years. We are very far from the notion of “tourism”.