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“At some point, I decided not to write about the suicides of cancer patients anymore. Against the backdrop of information about the simplification of the rules for prescribing and prescribing opioid analgesics, it even seemed to me that there were fewer people resorting to such a terrible solution. But it’s not like that…” Nyuta Federmesser, President of the Vera Foundation, talks about what we all have a right to and why we need to know about it now.
“All the same, every weekend people call, to whom these simplifications will never come. And these people live in Moscow, and in the Moscow region, and in Siberia, and in the Urals. Getting the drug on the weekend is still a problem. Getting a drug if the patient does not have oncology is beyond reality.
Only in recent days it became known about three suicides: a cancer patient, 71 years old, a lonely widower, committed suicide directly in a medical facility, and there was simply no doubt about his claims to doctors. A man born in 1955 with a suicide note stating that he was tired of tormenting himself and his family with the disease; and a very young guy with multiple sclerosis. It doesn’t matter that all these cases are in Moscow. It doesn’t matter that not everything is about cancer. Moscow is just like a big magnifying glass, magnifying everything to the point of ugliness. But there are similar cases in other cities: Lipetsk, Ryazan, Yaroslavl … The main thing is that people who so realize their “right to a worthy death” as a result of a serious illness did not suffer from depression at all before the illness, which means that the reasons for their act lie namely the disease.
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- Feel someone else’s pain as your own
The reasons for their suicides are the quality and effectiveness of the care they receive; loneliness, which inevitably accompanies illness; fear of the future and the inability of others to sincerely behave in such a situation; lies wrapped around their doctors, protecting their world of success and victory over the disease and refusing to discuss the prognosis of the disease. The reasons for these suicides are that people need help that no one is able to give them. The reason is the formal approach of the leaders of the healthcare system in the regions to the organization of palliative care – in the vast majority of settlements there is simply no palliative care, not to mention high-quality care. The reason is the lack of faith among people that if a person cannot be cured, this does not mean that he cannot be helped …
Society is not accustomed to compassion. Doctors are not trained to be merciful (yes, this can be taught), they are unfamiliar with the basics of pain relief and sincerely consider pain to be the norm, they do not know the basics of psychological assistance and, most importantly, do not consider this a necessary skill. Heads of healthcare institutions do not consider it necessary to pay the attention of their employees to such trifles as the tone and look when communicating with the patient. There are no programs in the education system for palliative care, for pain management, for oncopsychology, for difficult communication skills; among the specialists necessary for a quality life of seriously ill patients, there are neither trained nurses, nor palliative care doctors, nor oncopsychologists.
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- Anton Buslov: “Cancer is the best thing that happened to me this year”
Therefore, it is not necessary to simplify everything and reduce it to the absence of pain relief. A much more important thing is missing – the ability to empathize, which means that there is still no understanding in the Ministry of Health that patients themselves will soon force the system to work for them. Suicide will not end, because it is extremely difficult to endure the indifference of the world around you if you are terminally ill. People do these things not quietly, but drawing attention to the problem: they write notes, turn to the Ministry of Health, lay hands on themselves right in the clinic. They die in order for doctors to hear what their colleagues around the world have long known:
- Quality of life is possible with any diagnosis.
- You can live without pain and you can die without pain.
- If a person cannot be cured, this does not mean that medicine is powerless to help him.
You can’t save on medicine and constantly reduce healthcare costs, you can’t ignore the needs of the elderly and terminally ill, because this means ignoring the needs of a population that outnumbers the sick and elderly by more than four times (the wife is sick, and her husband, son, sister, mother suffer …).
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- What my illness has taught me
As long as we – healthy – do not form in society the need for quality care, suicide notes will not change their content. And we, healthy, as long as no one is sick in our immediate environment, as long as we are not exhausted by the fight against the disease and the system, as long as we are not afraid that the doctor who is supposed to help will get angry if we begin to demand something, until the catastrophic ignorance of doctors and the reduction in medical costs have not affected our families, it is you and I who must form the demand for quality care at the end of life.
And it is necessary to start with the education of the population; then the leaders of all levels simply will not be able to lie to the top that everything is fine, reporting on the results of the work; the fact that the patient and his relatives have information about how palliative care should help them will lead to the fact that doctors and medical officials will be forced to jointly defend and protect the interests of the patient.
In the meantime, those who have already suffered today will continue defiantly committing suicide in order to bring this blessed time closer … And in order to prevent possible tragedies, we, the healthy, must defend the rights of the sick. And in order not to fall into the number of relatives or acquaintances of such heroes ourselves or not to be one of them, let’s remember our already legalized rights and opportunities.
- Pain can be treated.
- Pain can be treated with any diagnosis.
- Untreated pain eats up the last strength and makes it impossible to alleviate other symptoms of the disease.
- The right to anesthesia is fixed in the Law on the Protection of the Health of Citizens (FZ-323).
- Any specialist, not only an oncologist, can prescribe pain relief today, with the permission of the head physician.
- You can get pain relief by calling an ambulance if you have a confirmed diagnosis and have a chronic pain syndrome.
- No matter what the paramedic tells you, any ambulance has narcotic pain relief (this, alas, is about Moscow and St. Petersburg).
- Doctors in hospitals and polyclinics should note the presence of pain in the patient in your card and in the extract.
- The doctor and patient should rate pain on a scale of 10 to XNUMX, and the doctor should prescribe the drug according to the scale and not according to their opinion of the level of pain.
- When you leave the hospital, they have the right to give you a five-day supply of the drug with you so that you can go to the clinic for the rest without fuss.
- You are entitled to free narcotic pain relief, even without a recognized disability, simply on the basis of a diagnosis.
- You do not have the right to refuse a paid prescription if for some reason the pharmacy runs out of a free drug.
- You do not have the right to require the packaging of used products before the next prescription is issued to you.
- If you have a severe diagnosis and you or your relatives find it difficult to cope with stress, you are entitled to the help of a psychologist.
- If you are terminally ill and are not offered a radical treatment for the disease, you must be offered the help of palliative specialists.
- Hospice and palliative care should primarily help at home, not in the hospital, require doctors to come to the patient’s home when the patient needs it.
- If you have been prescribed pain relief, but it still hurts, then this is not because it should be, but because the wrong remedy or the wrong amount was prescribed.