Die with dignity

Is Russia ready for palliative medicine? Discuss Sergey Mokhov and Natalya Savva

• In many countries of the world, there is palliative medical care for patients with deadly diseases.
• As the population of Russia ages, the problem of palliative medicine, which helps incurable patients, is increasingly agitating.
• The task of palliative assistance is to ensure the best, as far as possible, the quality of the patient's life.
• In Russia, palliative medicine is still in its infancy: there are not enough funds and qualified doctors.

Sergey Medvedev: They talk about the ancient Greek philosophers Antisthen and Diogenes : Antisthen at that moment was very sick, and he asked Diogenes: "Who will save me from pain?" “Knife,” Diogenes answered him. “From pain, not from life,” Antisthenes said. So they first formulated the problem of euthanasia and palliative medicine.

As the population of Russia ages, the problem of palliative medicine arises more and more acutely. This is an incurable patient in worthy to finish their days. In February 2019, the State Duma and the Federation Council approved the draft law on palliative assistance in Russia. But is the country ready for palliative care? Who will pay for her?

Correspondent: In February 2019, the State Duma adopted a bill on palliative assistance, which provides for the provision of such assistance in hospices and specialized institutions. In countries where euthanasia is prohibited, there are palliative medical care for patients, an integrated approach that improves the quality of life of patients of different ages faced with the problem of deadly disease. It prevents and facilitates suffering as a result of early diagnosis, assessment of health, treatment of pain and psychosocial problems of the patient and his loved ones. The task of palliative assistance is to ensure the best, as far as possible, the quality of the patient's life. Death in this case is considered as a natural process. This type of medicine has no intention of delaying or bringing it closer to its offensive.

Palliative help includes three approaches: symptomatic therapy, psychological and social support

Palliative help includes three approaches, each of which is important to achieve the maximum effect: symptomatic therapy, psychological and social support. There are not very many narrow -profile institutions ready to provide support in Russia, so very often their duties are forced to fulfill ordinary hospitals, where staff does not always have specialized training. And the wording in the law of "additional financing is not required" raises the question of how such a costly service will be provided in the conditions of free Russian medicine.

Sergey Medvedev: We have a guest Sergey Mokhov , the scholarship of Oxford Russia Fellowship, expert of the Khamovniki Social Research Foundation , and Natalya Savva , director of the methodological work of the House with a Lighthouse .

As I understand it, the meaning of palliative is different from medicine.

Natalia Savva: This is, first of all, medicine. It continues to give the opportunity to live qualitatively, despite an incurable disease. Modern palliative help began in the middle of the last century, when we began to understand that there are curative things, when we can completely save a person from illness, but there are things that we cannot cure, but we can make sure that a person does not feel them. Due to the fact that the disease exists in a person all the time, he is forced to take drugs.

Without a physician, nothing can be done here. Good doctors go with their patient to the end, escort him, facilitate his departure. Even the protocols of comfort in the last 72 hours of life are also medical support. And then, after us, psychologists, social workers, confessors, and so on can already go.

Palliative medicine is a separate medical science, which was formed after a lot of things have learned to heal, including oncology and AIDS. And the first palliative departments were for children with AIDS and oncology. Then they learned to treat these children with AIDS, now they are practically not in palliative departments, only 15%. Now these are basically not oncological children whom we still cannot treat: these are genetics, cerebral palsy and so on. There is something to do to doctors.

Sergey Medvedev: As I understand it, Palliative is practically not included in the training of Russian medical workers. Hospitals simply abandon hopeless patients, because they are not interested in such a patient purely economically.

Sergey Mokhov: Of course, the very understanding of the palliative was born earlier than in the XIX century: from the 16th century, in medicine, an attempt begins to determine what is curable and what is incurable. But it is very important to understand that palliative assistance is a comprehensive public movement.

There is such a wonderful researcher Kenneth Doka, one of the main editors of the leading American magazine Death and Dying. He believes that palliative help is the most successful grassroots phenomenon in the twentieth century. It is ideologically very related to the changes that occurred in modern society in the twentieth century. This is, first of all, the birth of the concept of pain, because for Christian European culture the concept of physical pain as a certain unbearable, unnecessary phenomenon was a long -term manifestation.

Sergey Medvedev: Initially, it was like God's punishment that a person must endure.

Sergey Mokhov: This is a certain causal relationship: your suffering at the end of life always has a certain reason, and it is clear that it should not be eliminated drug.

It is very cool that we started a conversation about palliative help and euthanasia, because in the 19th century the boundaries between these discussions did not exist. It was all a good dying. What needs to be done to die well? And then for the first time understanding appears in Victorian culture: the London gentleman cannot die in vigor, in bowel movements, because this does not correspond with the concept of decent death. And of course, in the twentieth century this is born on a general humanistic project related to human rights, with the concept of autonomy and dignity.

Sergey Medvedev: This is probably a post -war discourse? The sixties, the flow of human rights, including the right to decent death.

Sergey Mokhov: Yes. This is happening on the wave of the emergence of a social state, primarily British, which had the main thesis "from the cradle to the grave." Of course, palliative help is a very political project that could not be realized if it had not been supported by social activists.

Sergey Medvedev: But he is political purely demographically. As the population is aging, as we learn to treat diseases and endlessly extend human life, more and more people will be statistically in the zone where palliative help is needed. Death now occurs much later and is accompanied by large stages of dying.

Sergey Mokhov: We all the time confuse palliative help and hospices. Palliative help is not necessarily about dying as such. A person can be in a palliative state for a very long time if he has an incurable, deadly disease. A person with diabetes, which is in the critical stage of this disease, is also a palliative patient. This is not necessarily oncology or some other diseases where the calculation goes on days.

Sergey Medvedev: What is the average duration of the patient in the hospice? Or are there people who can be there for years?

Natalia Savva: Yes, there are such people. Previously, in the 50-60s of the last century, hospice help appeared, and then the word "palliative" appeared-only because at first the "hospice" meant-"connected with the help of life at the end of life." And then in the 70s a doctor from Canada Balfore Mount came to the UK purely accidentally in the UK and was in the Hospice of Cecilia Sanders. He also wanted to realize the hospice model in Canada and decided that he would come up with a new word for his country. And then he came up with the word "palliative", having the goal of helping where the cure is impossible.

Sergey Medvedev: And at the same time, there is, as I understand it, a separate discipline - End of Life Care, that is, the last 72 hours?

Sergey Mokhov: I do not agree.

Natalya Savva: This is, as a rule, specific help, including medical, when the patient begins to die. Then we must talk with patients and parents, minimize treatment, prescribe special comfort drugs. There are three drugs: morphine, haloperidol, diazepam - and the rest of the treatment is canceled.

Sergey Medvedev: There should be a balance between treatment and relief, because treatment often brings pain.

Natalya Savva: Even if it is already clear that a person with an incurable oncological disease will definitely die if oncologists said that it is not necessary to torment him further, a person usually lives another three to six months. Accordingly, we understand that he will have a period of deterioration, and then there will be a period of the end of his life, when the organs refuse, and he will leave for three days. We must be able to alleviate the condition, be close to relatives and try so that they do not cause resuscitation, do not go to the hospital, do not plant a person on the Ivl and did not extend his suffering. It is very difficult to see how your loved one dies.

Sergey Medvedev: Is this exclusively the prerogative of such funds, individual hospice? Or, for example, in the same UK this can be available within the framework of general insurance medicine?

Sergey Mokhov: In all countries, this is arranged differently. Unfortunately, there is no finished model for import. We know completely fantastic and unusual success stories like Poland, where very high -quality palliative help was built in a fairly short period, and we know examples of failure. And the financing system is also very different everywhere. Great Britain is a social state with very wide support, where everything is free. And there is the USA, where palliative help is very expensive. There are three options for financing - either these are large private donors, or many small donations, or state funding. As a rule, funds are guided by one of the chosen strategies. If you watch world experience, then this is always a team game. How it will be built in Russia is a big question.

Sergey Medvedev: There is a law on palliative assistance here. What does it mean for your activity, for medical institutions?

For the first time, palliative help was legalized in Russia in 2011

Natalya Savva: For the first time, palliative assistance was legalized in Russia in 2011: then the Federal Law 323 on the protection of the health of citizens said that the state now guarantees palliative medical care. Just after this, the state began to take part in the development of palliative assistance. The question was in the qualification of employees and in money. It was written that this should happen at the expense of local budgets. But the budgets have no money, probably only Moscow, Novosibirsk and Yekaterinburg can afford such great expenses for palliative help. I can talk about children's palliative help, which in the regions very much skidded.

Sergey Medvedev: Why is this to hospitals? They have indicators, there is a person who occupies a bed-month, you could skip through it and cure five people, and then one lies.

Sergey Mokhov: This is a key problem for the functioning of general humanistic projects in Russia. We see how the federal government reacted to the political protests of 2011, turning it into the theory of small affairs, into very materialistic things: benches, bicycle paths, everything you want. In this regard, palliative help, being ideological, politicized project, actually experiences the concept of conceptualization: what is good care. We all return to the concept of "worthy end of life", "autonomy of the patient" and so on. These are things that are very difficult to display in numbers for the authorities, very difficult to represent. Therefore, palliative assistance turns into a resource supply: you want beds - there will be, you want bedside tables - here you are, diapers - here you are. But care is, of course, not about the number of diapers, although this is all insanely important, this is about very subtle relationships of people and about professional skills, about those people who will provide this palliative help, who understand what they do, on the basis of which bases, what values. This is a very complex process.

Sergey Medvedev: Often, probably, people simply prefer to die in the hospice, and not at home, because the best conditions are provided there.

Natalia Savva: Yes. In general, ideally, the task of palliative care is so that people really do not go to die in hospitals.

Sergey Medvedev: I watched statistics: about 50–55% would like to die at home.

Natalya Savva: Usually, when people understand that they want to see them at home, there are conditions and help, many people want to stay at home. But if a person is not anesthetized, he understands that he strains relatives, and he simply has no choice. Our people have no choice today. Of course, it’s easier to go to the hospital, to the hospice and at least somehow get something.

Sergey Mokhov: Palliative help begins with pain relief. And, which is important for WHO, anesthesia is recognized as human right.

Palliative is now used to obtain resources. Everyone knows that you can ask for something and knock out from the center for palliative: they get beds, and then they leave the palliative at the rest of the hospital.

Natalya Savva: The UN and WHO just a couple of years ago signed the Convention that the non -ordering of palliative care was equated with torture and torture.

Sergey Mokhov: We approximately understand that the growth of charity is associated with the protests of 2011, with the great departure of the number of these former polyactivists into charity. We approximately see how the federal government reacts to this, creating a fund of presidential grants, turning them into conductors of social services, that is, taking control.

Natalia Savva: There are different models. We can try to realize some things even without money, although in Russia, a rich country, of course, I would like to have some basic financing.

Sergey Mokhov: Palliative help is still a European project in its value and technological embodiment, but this is very well implemented where there is an old infrastructure, and this is the houses of mercy, nursing departure and so on. Why did Poland shoot this way? Because these are Catholic communities that were very successfully integrated. The Soviet Union, in addition to destroying all these houses of mercy, also destroyed such a value phenomenon as private charity, the phenomenon of altruism.

Natalya Savva: In general, a Soviet man is a strong man who endures everything to the end and dies standing.

Sergey Medvedev: As far as the current power pressure, despite the fact that the services for combating drugs are constantly looking for some cases, is it difficult to get painkillers?

Natalya Savva: For the past five years, it has become easier compared to what has been before. Three funds-“Vera”, “Give Life” and “Children's Palliative”-made a huge amount of effort to still reduce control, redo the documents and say that some kind of microscopic share is leaving for illegal circulation, it is not interesting for drug addicts to take it out of medical momentum. The regulatory framework is now very facilitated, there are drugs. Question: Who knows how to prescribe drugs? And Rear Admiral Apanasenko shot himself not because he was not given or forbidden something, he was simply not painkilled correctly. Doctors do not know how to anesthetize, because students at universities still do not teach the basics of modern anesthesia. And they come to the old department to the doctor, who thinks with protocols of the 50-60s and the same drugs and ways of administration. The courses that are (and they are good) can be counted on the fingers, but the number of doctors who scroll through them is negligible to cover the whole of Russia. This is a huge problem!

Sergey Mokhov: This is a difficult process of selecting drugs for each patient.

Sergey Medvedev: In Russian universities there are some departments, departments that prepare doctors for palliative?

Natalya Savva: In basic education - no. Now a lot of effort is being attached to at least a little to introduce palliative medicine in different departments: in pediatrics, therapy, surgery, oncology, so that people have at least basic knowledge. But we do not have a specialty - a doctor of palliative medical care, there is only such a position. Accordingly, people who come to this profession are not trained.

Sergey Medvedev: Who can and should pay in the Russian case when the law says that "without finding new funds"?

Natalya Savva: Here in the last formulation of the law and in the state program it was written - at the expense of the regions. It is clear that the regions could not find money for the whole thing. Москва, как богатый регион, наверное, единственная, кто мог позволить себе это развивать.

Сергей Медведев: А можно включить это в ОМС?

Наталья Савва: Теоретически – да, но это тяжело. Сейчас это погрузили в федеральный бюджет. И соответственно, очень многие вещи будут покупаться из федерального бюджета и оплачиваться из него, только должен быть очень хорошо проработан механизм. Но в условиях коррупции в регионах, допустим, тот же аппарат искусственной вентиляции легких для паллиативного человека, который стоит 500 тысяч… Клиники покупают тендеры и все остальное за 1,5–2 миллиона, это откаты… И никому не стыдно. Паллиативная помощь – это очень дорогая штука.

Сергей Медведев: В британском бюджете здравоохранения, по-моему, 25% уходит на паллиатив.

Активисты сидят в каждом конкретном хосписе, больнице, отделении и контролируют, что не так сделано

Сергей Мохов: Мы прекрасно видим, как функционирует бесплатная медицина – как бесплатный паллиатив может хорошо функционировать в этих условиях? Активисты, волонтеры сейчас в ручном режиме создают эту работу, то есть сидят в каждом конкретном хосписе, больнице, отделении и контролируют, что не так сделано, почему пролежни мажут зеленкой и так далее. Но на сколько этого хватит?

Сергей Медведев: Как я понимаю, эвтаназия часто находится в некоем противоречии с паллиативом. Я иногда побаиваюсь эвтаназии для России, учитывая социал-дарвинистские тренды, которые прослеживаются здесь в социальной политике. Эвтаназия может показаться слишком легким выходом.

Сергей Мохов: Важно понимать, что эвтаназия – это не альтернатива.

Сергей Медведев: Я читал, что там, где введена эвтаназия, например, в Голландии, ухудшилось качество паллиатива.

Сергей Мохов: Да, есть ощущение, что паллиативная помощь поменялась. Но паллиативных болеющих и умирающих людей очень много, а эвтаназия даже в Бельгии и Голландии – это тысяча человек в год. А в штате Орегон, где это принято, это десятки, незначительное количество людей. Но, как показывают исследования, для многих людей эвтаназия – это очень важный способ почувствовать свою автономию. Они не выбирают эвтаназию, но чувствуют, что это можно обсуждать. Это становится альтернативной формой, но не индустрией, в которой людей убивают десятками тысяч.

Процедурно это выглядит очень сложно. Это не то что вы говорите: "Мне надоело", – и на следующий день к вам приходят и что-то вкалывают. Это сложный многоступенчатый процесс обсуждения, чтобы комиссия, которая принимает решение, была уверена в том, что это ваше решение. И эта процедура оказывается куда важнее для людей, чем ее конечный результат.

Сергей Медведев: Но в России разговоры об эвтаназии, как я понимаю, – это отдаленное будущее?

Наталья Савва: Мне кажется, мы пока не имеем морального права говорить про эвтаназию в России. Эвтаназия – это когда уже не справляются паллиативная помощь и медицина. Очень многие страны законодательно подписали возможность детской эвтаназии, и вся международная детская общественность, специалисты паллиативной помощи подписали протест, потому что, например, в Бельгии нет паллиативной помощи, там только-только начинается что-то такое, а они уже говорят про эвтаназию. Это неправильно ни с моральной точки зрения, ни с какой иной. Эвтаназия – это введение смертельного лекарства по просьбе пациента. Получается, что ребенок может озвучить просьбу, чтобы его умертвили, так как у него есть какая-то проблема. Практически 90% случаев детской эвтаназии разруливали с психологами. Было много семей, где родители очень устали, а паллиативной помощи нет, психосоциального сопровождения нет, а у ребенка симптомы, которые всех безумно мучают. И ребенок чувствует, что родители уже устали от него, и озвучивает желание уйти.

А у нас нет нормального института ни психологической, ни духовной, ни социальной помощи, и говорить про эвтаназию очень сложно. Но в России действует закон пассивной эвтаназии. И когда человеку действительно пришло время умереть, и ему противопоказано проведение реанимационных мероприятий, его все равно реанимируют, потому что врачи боятся быть обвиненными в ничегонеделании, в пассивной эвтаназии. И вот это ужасно! Вот это деление эвтаназии на активную и пассивную в России надо однозначно менять.

Сергей Медведев: Хочу поговорить об осознанности смерти. В России с этим проблемы? Смерть больше табуирована, меньше проговорена, чем в других странах?

Наталья Савва: Допустим, врач не говорит умирающему больному, что он умирает: семье говорят, а ему нет, и он не может построить план на жизнь. Этот патернализм пришел из советской медицины: мы не спрашиваем пациента, чего он хочет, не говорим с ним на тему смерти. Вопрос в отсутствии образования. Врач не говорит потому, что он не знает, как это сделать, чтобы пациент не пошел вешаться.

Сергей Медведев: Смерть так же важна для человека, как и жизнь. Поэтому базовое право человека – это право на достойную смерть, которую обеспечивает или паллиатив, или эвтаназия. В любом случае, это проблема общественной дискуссии, общественного консенсуса.