Dr Fourcade: "Each care is to be considered individually and emotionally extreme"

Dr. Claire Fourcade has been practising as a coordinating physician for a palliative care team and currently chairs the French Society for Palliative Care.

Patients at the end of life

Is the end of life a matter for caregivers or a societal issue?

We can't separate one from the other. France is probably the country that has legislated the most on the issue of the end of life. It's primordial because the three major laws (note 1) which regulate palliative care convey a strong message of solidarity: "You matter to us, and that's why you get to decide in what way your life will end, that's why your caregivers will ease your pain whatever the cost, even if in the end it speeds up your passing." We physicians are required to follow patient guidelines, and for this, we have a wide range of sedative practices, from anxiolysis to deep and continuous sedation until death.

The current legal framework seems sufficient to me. However, these laws must be known by all – patients and caregivers – and applied. In 2021, the SFAP surveyed all those involved: caregivers, psychologists, social workers, etc. 75% of respondents say that they have experienced difficulties in implementing existing laws. One possible consequence is the termination of treatment.

Another survey, carried out by the French Medical Association, showed that one in two patients does not consider themselves sufficiently informed about the end-of-life legislation.

The SFAP defends a simple idea: palliative care must be early, everywhere, for everyone. We're a far cry from this. Two-thirds of patients who would need such care do not have access to it. Why? Lack of knowledge, resources, or training.

The end of life was one of the themes discussed during the French 2022 presidential campaign. Is that a good sign?

Presidential candidate Macron mentioned a Citizens' Convention project. After such a hectic time as the Covid epidemic was, there comes a time for consideration. What changes does French society wish to make regarding the end of life?

On this matter, the debate is often simplistic, or even black-and-white. It usually only deals with medical assistance in dying, be it euthanasia or assisted suicide. However, within my medical practice, these two options are in fact rarely addressed by patients. We are much more sought after on issues related to the limitation or termination of treatment.

Palliative caregivers are very open to the idea of a Citizens' Convention, as long as their voice is heard. What we experience daily makes our voice very legitimate, and we will have a lot to say. For example, that situations in palliative care are both singular and complex, that there are what I call "50 shades of grey".

During this Convention, we also remind everyone that given we are by their side in these moments when they themselves don't know what they want, we are aware that patient expectations cannot be reduced to a desire to die. This is another limitation of this type of debate: by definition, palliative care patients cannot express their opinion in it. Only healthy people can be heard.

How do French caregivers position themselves concerning euthanasia and assisted suicide?

Another reason palliative caregivers need to make their voices heard is that they are intimately affected. About euthanasia, a senator said that "physicians' qualms come after the interests of society". I find this shocking because the physician will be the one performing the lethal action.

Sometimes, entering the room of a patient nearing the end is very difficult. So how could you be both the person who listens and the one who plans to give death? How can we start anew with other patients and commit to other relationships, when we already know what comes next?

According to our 2021 survey, 96% of palliative care stakeholders are opposed to the idea of caregivers participating in euthanasia. For physicians, this figure reaches 98%. If the law made euthanasia possible, 40% of the physicians surveyed would leave their positions and the same proportion would use their conscience clause to refuse to practice it. Of the 20% who decline to answer, some simply cannot imagine themselves in this situation.

We fear that, in the event of the legalization of euthanasia, palliative care will be profoundly destabilised. 80% of all respondents to our survey believe that this would cause tensions within the teams.

Assisted suicide is another matter. Perhaps this is something to consider because for the time being the law addresses the problem of people who are going to die, not those who want to die. However, this is a societal issue and involves caregivers less directly.

Are physicians adequately trained in palliative care?

We need to train more specialized physicians in managing complex cases. But the priority is for any physician, especially a general practitioner, to know the basics of palliative care. Yet, during their initial training, the teaching of palliative care only adds up to about ten hours. How can a young physician then feel confident to take care of patients facing suffering and death so violently?

We would like any future physician to complete a few days' internship in a palliative care team during their training. To understand its philosophy, but especially so that they have the reflex to call upon these teams when necessary.

What about palliative care at home?

70% of people would like to die at home. This type of care is becoming more and more frequent but remains tricky. The conditions are not always met – such as family or relatives supporting this project, a suitable home, caregivers and volunteers on site, etc. Some therapies are also difficult to implement at home: sedation is a complex procedure. Because you have to guarantee 24/7 staff availability and have an available bed to fall back on in case of an emergency. That is because you also have to attend to loved ones.

At home, the general practitioner becomes the pivot of an "ephemeral team" during the palliative care phase. This very accurate expression, which I borrow from a younger colleague, indicates a team that encompasses the paramedical staff, the palliative care team, and the families.

Many caregivers talk about their profession losing purpose. What can palliative care do for us?

In the 90s, palliative care took over a field deserted by physicians. They did not enter the rooms of people at the end of their lives. Nowadays, the whole hospital grows empty. Caregivers throw in the towel because it doesn't make sense to do a consultation or a bed bath in only 5 minutes.

This crisis in purpose, in the name of "profitability", seems extremely serious to me. I don't know how we will get out of this situation, but I can see how palliative care teams are much more stable than others, with lower turnovers and fewer sick leaves.

I think it's because we're constantly giving meaning to what we're doing. Each medical support is both singular and emotionally extreme. So, we have to constantly reassess ourselves. And we do it in teams where all voices are equal. Perhaps this "philosophy" could help other caregivers.

The HIV epidemic was a turning point for you. Why?

When I was an intern, I wanted to work in neonatal intensive care. Suffice to say that my interest then lay at the other end of the spectrum! But then I did two internships, one in oncology and the other in an infectious disease ward, at the height of the HIV epidemic. The way all these patients died, abandoned by the physicians, shook me to my core. I wanted to do better, but palliative care in France was at its tottering beginnings.

Many people who are now campaigning for active assisted dying were also deeply troubled by these HIV patients. We shared the same dread in the face of outrageous deaths. However, we have come to two opposite positions: they would like physicians to have the power to give death, but I for one think that we can still improve the way patients die.

This epidemic has also opened a gap in medical paternalism. Patients at the time were young and very knowledgeable about their illness. Unlike most cancer patients, those with HIV completely understood what was happening, that they may be dying. This notion of "team" emerged for the first time: patients and caregivers co-constructed therapeutic support, including end-of-life support.

What do you remember about your years abroad in Canada?

After these internships in oncology and palliative care, the two years I spent in Canada have profoundly changed my practice of medicine, and not only in the field of palliative care. That's where I discovered a much less pyramidal and hierarchical team structure. Suffice to say that afterwards, I was no longer compatible with the usual hospitals!

Of course, Canada remains an example for us. While we are fighting to have one palliative care bed per 100,000 inhabitants, our Quebec colleagues have one bed per 10,000 inhabitants and are fighting to further improve this ratio. This contrast reinforces the idea that in France we die badly, so the law should change. For my part, I strongly argue that we must, first of all, have the power to apply existing laws.

You have a lot of experience in palliative care. Do you sometimes feel apprehensive when entering a room?

Of course. Sometimes, I need to take a very long breath at the door. Every first meeting is unique, and experience does not change a thing. Over time I have gained greater confidence in the strength of the relationship with the patient. Now I'm more easily convinced that together we can find the best path for them.

Yet, I still have this apprehension about not meeting the patient's expectations. Not in terms of technicality, but in terms of humanity. That, I believe, is never a given.

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