publication in The worldon January 16, of the story of our journalist Vanessa Schneider on the end of life of his father, the writer and psychoanalyst Michel Schneider, who died of cancer in July 2022, aroused a rare echo, whether on the site of Worldin the letters of the readers or on our social networks.
These reactions are almost all in the same direction, that of denouncing the inability of the medical profession to support patients and their families and the lack of training of doctors in this area. Here are some excerpts of reactions from readers of the World.
“At times, I felt alone and abandoned by the medical profession”
Chantal Catzeflis-Benassy, Les Matelles (Hérault): ” (…) Everything you relate resonates deep inside me and touches me particularly, as this journey and its mysteries resemble point by point what I went through throughout the fourteen months of my husband’s illness until his death, at our home, on November 25, 2021, at age 68. He was director of research (biologist) emeritus, had just retired a year ago when the disease broke out (lung cancer with brain metastases).
(…) I consider, in this painful ordeal, to have been very lucky, very lucky to have crossed paths, met wonderful caregivers (for the most part), competent, dedicated, passionate but at the end of their tether. Very lucky to have benefited from a medical system – free or almost – efficient and at the cutting edge, but which suffers from serious dysfunctions because it is out of breath, as you describe it yourself.
(…) And to conclude, tell you how much, at times, I felt alone and abandoned by the medical profession, helpless, absent, unable (sometimes) to put words to this approaching end of life. The lack of training of certain doctors, oncologists in particular, to be empathetic, to speak about death with frankness, modesty and simplicity. Because they just don’t have any training. »
“Unacceptable behavior of caregivers”
Philippe Serrier, Paris: “I just read the article you wrote, published by The world. It dismays the doctor that I am. If it is the perfect reflection of the catastrophic situation of today’s hospital, it highlights an unacceptable behavior of caregivers. Refusal to make a home visit by a GP is unacceptable. This man needs to change jobs.
Before being a pulmonologist, I was a general practitioner, and I can say that I have never refused a request for a visit, the lack of time is not an excuse or a pretext, or even an explanation. He is witness to a change both in society (“I have a family life, it is essential”) and in mentality (“I do my job and it is not a priesthood”).
(…) What you are saying is unbearable. There is only one explanation for this: the loss of the duty of a doctor. Moreover, to the (relative) discharge of hospital workers, we have been alerting successive governments for twenty years to the risk of shipwreck. But, as this is in reality a scuttling for the benefit of the private sector, which no government dares to display, nothing has been and will be done to save the institution. »
“How is it acceptable that those around you are not informed? »
Joelle Bolloch, Paris: ” (…) One day when I go get the tray [repas]I hear myself say that it had been decided to stop feeding [mon mari]. To the questions I ask, I am told that you never cause the death of patients by starving them to death. I reply that it is the first time that my husband is dying and that I am not familiar with the practices of palliative care services.
I ask to see the doctor, the one who had welcomed me the first day, I ask him the reason that led to this decision. Answer : “Madam, we have not decided to stop feeding him, it is he who is not able to do so, and besides, why do you insist on him eating?” Taken aback, I look for an answer… and the doctor continues: “Madam, when you do something, you have to know why you are doing it.”
I stammer: maybe so that he has the taste of something he likes in his mouth, and also because it’s the only moment of sharing that remains. She ends the interview by telling me that he lives on his reserves… and has no needs since he has no activity. To my request concerning the time he has left to live, answer: it is not counted in months.
(…). On France Inter, questioned about the debate which should open on the end of life, Olivier Véran [le porte-parole du gouvernement] explained it well: today, palliative care at the very end of life consists of stopping feeding and hydrating the patient, while administering sedatives. How is it acceptable that the closest entourage, who is there every day, is not informed of the reason for this decision to stop food and hydration or of the content, dosage and effects of the sedatives administered? »
“Why don’t legislators and society look the end of life in the face? »
Laurence Andréo, Castres (Tarn): ” (…) How to end his ordeal otherwise? How to respond to the request clearly expressed by dad, when the legal framework does not authorize lethal sedation in France? This is the dilemma faced by the medical profession and its families. What response should be given when the situation becomes unbearable for the patient and his entourage? How to relieve when no drug solution can alleviate moral suffering?
The Leonetti law defines the rights of end-of-life patients who can make known their wishes expressed through advance directives, doctors must not practice unreasonable obstinacy or therapeutic relentlessness. This law is certainly a step forward, but it does not take into account the critical situations that doctors and relatives of end-of-life patients face on a daily basis. We leave the interveners to manage with these ethical questions.
(…) Faced with the absence of legitimate responses from the medical profession, I considered responding to the end-of-life request expressed by my father. How can the legislator continue to leave families in such disarray? Pushing them to consider and sometimes to take action by committing extreme gestures…
Why don’t legislators and society face the end of life? Why don’t they push the doors of hospital services where the end of life happens out of sight? Until when are we going to continue not to hear the extreme distress of patients who want their suffering to be shortened?
Faced with this tsunami that fell on our family, we found a way to listen to the staff of the hospital’s palliative care service. It is important for me to talk about these health professionals who, beyond medical techniques, put humanity into the care of the patient and his relatives. We have always been aware, with my sister, that in this flood of misfortunes we were “lucky” that Dad was admitted to this service where listening, consideration and benevolence are not empty words.
Simply thank you to the whole team who supported us to prevent us from falling into these particularly trying times. They were by our side to accompany dad in his end of life. »
“Fortunately, dehumanization has not yet fully reached the remote province”
Chantal Guillaud-Abramson, Perpignan: ” (…) My emotion is linked to the fact that I live what she lived, my husband being suffering from the same type of cancer as that of his father. I could add that he also experienced various long hospitalizations, including one at Gustave-Roussy where, kindly, we were told to go home because there was nothing more to do. With us, it’s Perpignan! We went through Montpellier, where we heard the same story, with less coldness all the same.
Here, everything has been done for six months so that everything goes as well as possible: palliative care in the context of HAD (hospitalization at home), hospitalization for four weeks with various attempts to contain the jaundice. Back home with the kindness and care of the HAD structure. The tunnel is long and I know the exit.
I simply wanted to say thank you to Vanessa Schneider for her very complete article and above all to tell her that, fortunately and so far, the dehumanization of the hospital in the capital has not yet fully reached the distant province – and I hope , the nearest province. I’m afraid, however, that we lose nothing by waiting! »
“The profession of doctor requires a minimum of empathy”
Francois Anglade, Valencia: “I am a 78-year-old general practitioner and I cannot explain to myself how we were able to live the course of care that you describe with a moderation of expression that makes your description even stronger.
How can we explain the behavior of the attending physician, the attitude of the various stakeholders during this long ordeal? I find that the ambient discourse evoking the “misery” of the current health system has a good back, and that this profession requires a minimum of empathy. »
“Your article freed me from this anger that I carried within me”
Annie Bessagnet, Deuil-la-Barre (Val-d’Oise): ” (…) My husband passed away in March 2022 from generalized cancer. I wish that no one had encountered the same difficulties that he experienced and that we experienced, my children and me. Your article attests to the contrary, and I am sincerely sorry.
I note glaring similarities between the end of life of your father and that of my husband: effective implementation of medical protocols but very cold, even very clumsy communication, diagnoses or assessments, lack of time and empathy from doctors, difficulties in caring for the patient in the terminal phase of his illness (emergency treatment, feeling of having to fend for himself against the medical community to find a solution, conflict with the doctors to keep the patient in palliative care), unacceptable attitude of the attending physician who is of no help during the illness but who does not forget to charge for a consultation to fill out an administrative form…
Your article certainly made me relive those painful times when we had to fight this fight against the health care system, instead of devoting our time and energy to my husband. But above all, he calmed me down, freed me from this anger that I carried within me. I had promised myself to write to the doctors concerned in order to inform them of my revolt in the face of all these dysfunctions, of which they are also the victims. Your article, which sums up our obstacle course in every way, did it for me, in a way. (…) »