“Some patients come to feel guilty for living or to demand a programmed death”

The palliative care consultation is unique in that you take your time.

Time for a unique encounter between a sick person, their loved ones and caregivers, in a team with volunteers. Time to listen to a journey often strewn with pitfalls and emotions.

Time of truth where we sit down to take a picture of the situation, the scope of the possible and the edifice of a care project co-constructed, together, according to what is important to live for the person. Time to relieve symptoms, and team up with loved ones, often on the front line, to improve logistics for greater autonomy at home.

The dignity of patients

Oncology medicine is rather aggressive in its treatments. Also, the care of the person as a whole and his humanity is necessary to allow him to draw resources to treat himself. This is our way of honoring the dignity of those who entrust us with part of their life: always trying to relieve, following and respecting their unique path, not giving up, teaming up regardless of care decisions, getting along about what is possible.

Speech is open, often free: “Where do you draw your resources from? How do you see the sequel?What are your loved ones saying about your situation? What do you expect from us? »… So many questions that put the person back at the heart of care, to provide the fairest and most reasonable care possible in accordance with the patient’s wishes.

help to live

These wishes are sometimes volatile and fragile, abused by a poorly controlled symptom, a difficult announcement or the comfort of a visit. You may want to stop everything on Monday and want treatment on Tuesday. For the person transformed by illness, disability or old age, opinions and desires evolve and change, ambivalence is frequent.

Some are still calling for a futile treatment, even a clinical trial, while the curative has given up.

But the ultra-majority request is to be helped to live despite the disease, and to keep a place in society. Mobilization to relieve pain is imperative, for this we are equipped with a multidisciplinary team. We must tirelessly seek progress in the field.

However, the prevailing media discourse over the past few years on the end of life has clearly raised doubts and concerns. Some come to feel guilty for living or to claim a programmed death before even knowing the field of the possible.

“Will this be the medicine of tomorrow? », spear, worried, a patient. “I know you can’t do anything for me, so I inquired about Switzerland”, says another to actually know what is possible here. At the same time, a patient tells us that a “oh no not you” of his daughter at the mention of a programmed death had given him back the desire to live, and shows us how fragile and complex all of this is.

Palliative care and sedation

We spend more and more time unraveling received ideas and explaining the care available at home and in an institution. Obtaining trust is more difficult. It is a question of reassuring on the follow-up, learning how to handle analgesic treatments or confirming the call procedure if necessary, helping the relatives more.

Some think that in palliative care all patients end their lives under sedation, whereas we have used this technique for only four of them this year. Most go out peacefully. We could not continue this work if it were otherwise.

The request is sometimes more pressing and demanding; however, very clearly, we cannot do everything. We are only caregivers, not magicians.

The affection of a family

We cannot replace the affection of a family when it is absent, nor can we alone accept the assurance that each person has a value in society. We cannot prevent someone from thinking that he is a burden for others and that his disappearance would be of service to everyone, especially when his situation is on the euthanasia list in the country next door. We cannot blame anyone for choosing death over life if they are in a healthcare wasteland with no access to quality relief. We cannot take away the sadness of the approaching disappearance, nor the physical weakness of the last days. We are sometimes at a loss when faced with a family demanding that everything stop, while the sick person never asks us for it.

But this time, outside the timed time of our daily life, is to be invested. One of our difficult roles is to help a loved one find their place at the bedside of someone whose life is coming to an end, or to help them detach themselves from it a little to breathe. Because the one who is going to die sometimes takes his time before letting go. Time deemed sometimes too long, time deemed sometimes too short.

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