ICan medicine, in 2023, provide dignified support for the end of life at home? The law of February 2016 creating new rights for patients and people at the end of life provides that everyone has the right to “a dignified end of life accompanied by the best possible alleviation of suffering. Professionals implement all means to ensure that this right is respected. (…) At the patient’s request, deep and continuous sedation can be implemented at home.. But there is a long way from principles to practice.
Rock [Scheffer], my husband, a retired surgeon, died on October 15, 2022 from a glioma. He conscientiously debated with the doctors at every stage of his illness, of which he knew the outcome. He clearly affirmed his refusal of therapeutic relentlessness, gave priority to quality over lifespan, refused the deterioration of his condition and the vision he had of himself. A standing man, passionate about life, but also about self-respect and respect for others in all their integrity. Pierre wanted to die at home, surrounded by his family, his music, his books.
We have done everything to respect this will. Alas, a real obstacle course resulted in his death in a palliative care unit (USP). For a month, we suffered from the wanderings of the organization of home hospitalization (HAD): medicines delivered several times a day and at any time, equipment installed late, transmission problems. Transferred to the hospital via the HAD itself, Pierre still received calls on his cell phone for home deliveries. The equipment was recovered from us more than ten days after his death. A month later, a service provider called again on his cell phone to retrieve equipment.
It was a constant struggle to limit his moral and physical suffering as much as possible. Caregivers, certainly empathetic, were often put in difficulty by the context. Not to mention young nurses poorly trained in the autonomy required in the patient’s home.
Medical follow-up and coordination between the oncology department, the HAD, the patient and his family were also nothing but pain. All this to finally tell us that deep sedation at home was impossible, for lack of continuous medical presence. “ There is the law written for the citizens, and the medical reality”, the doctor told us! It’s up to us to choose: transfer Pierre to USP or keep him at home.
Inescapable degradation
On October 12, Pierre was transferred to USP. He died there on the 15th. We were present until the end, but we were unable to respect his wish: to leave before entering into physical and psychological suffering which affected him to the very depths of him. We can only hope that he did not notice his transfer, because he would have experienced it as a betrayal, as we experienced. Our history illustrates the current impasses faced with the end of life, and the limits of the law which does not respond to the legitimate citizen demand to die with dignity, before an inevitable degradation.
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