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To leave without needless suffering

Doctors and patients on why the Russians can’t count on an easy death

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Spring in Ministry of health must pass a closed meeting with participation of organizers of health care and the ICU doctors. Initiate a meeting of representatives of charitable foundations. The main issue I want to discuss: who are terminally ill or their relatives to refuse resuscitation, which only prolongs the suffering of patients. Now this refusal is equated to euthanasia and forbidden. “Ribbon.Roux” tried to understand why death with dignity in Russia illegal.

Last a long way

— Six when Alex died, home came to him twelve police officers, — said Lida Moniava, the Manager of children’s programs of the help to hospices “Belief”. — Photographed, measured, felt body, looking for signs of violent death. Although, it would seem, why could a child die from an incurable disease? Just administration hospital, where he was, appealed to law enforcement bodies with the statement that the parents refused medical assistance.

The boy had a genetic disorder — spinal muscular atrophy (SMA). The most aggressive form. There is no treatment. You can’t even stop progression. Gradually refuse all motor functions cease to work light. Alex was unable to breathe independently in four months, his heart stopped. The doctors managed to “run”, and the child was connected to artificial lung ventilation (ALV).

A month and a half he lay in intensive care, full of tubes. When while “stabilized” and he was allowed to shoot from stationary equipment, the relatives refused further hospitalization. It was clear that baby out. The mother decided to prolong the suffering of the son is too cruel, and took him home. He died quietly and calmly. Among his. But Russian law such a possibility is not allowed. While the patient’s brain works, his body will sustain life, despite the suffering (mental and physical) he is experiencing. Those who think otherwise, will face criminal penalties.

— In our law on health protection of citizens is a legal conflict, explains pulmonologist Vasily Stobnicki specialist care for patients with amyotrophic lateral sclerosis (als — a disease rapidly leads to paralysis of all muscles, even facial — approx. “The tape.ru”). — In one article it is said that doctors can not to perform resuscitation if clinical death is a consequence of knowingly and incurable diseases. But not explained what it is and what diseases. There is another article that envisages prison sentence for failure to render aid, and such cases were many. So when the doctor dilemma — to resuscitate or not, just in case it is selected the first, not to be in the dock.

It seems to be a humane position: save last to everyone who asks and does not ask. However, the Russian healthcare limited. Usually those who managed to return from the dead, and remain in the intensive care unit, confined to a ventilator for the rest of their days. Because to breathe independently. Visitors to the intensive care unit are not allowed. If you’re lucky and any compassionate doctor would allow something for a few minutes a day. And it is important to clarify that many such patients are not in coma. They all see, hear and understand. Including the fact that they never get out of this bed, and his death they’ll meet in this chamber among equally unhappy with the tubes in their tracheas.

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To snatch a close from “prison,” the families are trying to purchase a home ventilator. This is 1.5 million rubles. And then another 40-60 thousand a month is spent on supplies, and special food. Usually help charities. The state in the fate of such patients does not participate. Except that the investigator will want to have relatives directly related to his passing.

— In Europe, in the U.S., the family decides what doctors will do with their child, continues Lida Moniava from the Fund “Faith.” — The family may decide to bring a child on a ventilator. And then the state will provide them with equipment and doctors. With the patient will be on duty at home nurse, and in the afternoon he would be taken to school, to the pool, on walks. But despite all the support, most parents in Europe choose to let the child go, to let him go naturally.

Sensitive subject

According to the Chairman of the Association “families of SMA” Olga Getmanenko, for Russians, the topic of quality of death — too sensitive and has only recently begun to be discussed.

But the inquiry is, — she admits. — We’re not talking about all the children with incurable diseases, but only the most aggressive forms of spinal muscular atrophy. Almost every parent is forced to think about how to leave their child. Ten families from about three would like to choose palliative way, without radical medical interventions, such as resuscitation and mechanical ventilation. And the most important is that baby, no matter how much he was released, spent this time happily, without needless suffering.

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Not much to do this. Need support — both medical and moral. Representatives of the Russian Association “Family of the AGR” I met with American and Italian doctors. There when get a bad diagnosis, talking with relatives. Explain all versions of the disease. Find out what you would like close. According to Italian statistics, is usually 90 percent choose palliative way. When the time comes to care, and this can be seen by certain symptoms, experts connect. They do everything to carry out the process painlessly. The child is given oxygen, anesthetic. With family psychologists.

Russian parents this is no choice. To consult about the patient’s condition just do not have anyone. Even in Moscow experts on rare diseases is very small. In regions practically are not present.

— The child with the AGR sooner or later there comes the agony — the lungs cease to work, — says Olga. — He gasps, blue eyes. Who, seeing this suffering, would not call an ambulance? Even if you firmly tuned to natural death. General doctors often don’t know how at home to alleviate the condition. Either they don’t have the right equipment. Even numb I can’t. Non-cancer patients to receive narcotic analgesics is still almost impossible. Remains intensive care. We recently talked with a resuscitator. He said: “We all explain that the ventilator prolongs life. And in the case of such children is a prolongation of dying”.

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Olga asks Germanenko to emphasize that the parents in any case not in favour of euthanasia and don’t want to artificially hasten death. They are for the relief of the last days.

Bear in mind, nobody says that incurable does not need to reanimate it. But we that was the right choice. For not the doctor, not even someone else’s, and the family decided, as she looks at a disease, are you ready to let go of a terminally ill baby, or will go to the end, whatever happens. And it is not enough just to give the opportunity to make a decision, you must support the family and patient on the outcome of the disease.

What is the beginning of fascism?

When the hospice charity Fund “Vera” started talking about “natural” care immediately showered with accusations. Someone wrote that Hitler started with the same selection. Other suspected that in a palliative way in the first place will identify patients with an apartment as an inheritance.

— Fascism does not begin with, does not agree Dr. Vasily Stobnicki. — Fascism is when the government is not focused on the person, does not comply with the right to dispose of his own life. The state it would be correct to indicate their position on this issue, eliminate the law of contradiction. Abroad perfectly healthy people can Express their will about what to do with it, if they make it incompatible with life condition. And we have some patients trying to leave a will, write even notarized statements. But for doctors and for the Prosecutor’s office — these papers, as well as the will of the dying, the grounds are not.

According to the specialist palliative medicine, trainer of communication skills Center for continuing professional education of the First MSMU n. a. I. M. Sechenov Anna Soncini, legislative collision pushes terminally ill patients desperate measures. As an example, she recalls the story of one patient with the BASS. He was a doctor, was well aware of the prospects. Relatives persuaded another to “stay” with them a bit. So he agreed to the ventilation of the lungs. The family bought a home machine. A year later the patient developed complications and pain. He began to despair. Signs, because it’s already gone, asked to disconnect the unit. Neither the doctor nor the wife are unable to do so. When the patient has inflammation of the lungs, he refused to give her antibiotics and forbade relatives to feed and water themselves.

— You need to give people the right to refuse resuscitation and any other measures to prolong life, which they consider inadequate, — says Anna Sonkina. — That this right is implemented, there should be a procedure that allows you to capture decisions in advance or appoint a person who will take all decisions in case the patient is rendered unconscious. The absence of such rights and such procedures blatant inhumane and violation of human rights to retain personal dignity. Because today we do not ask: “do cancer patients opioids?” All believe that they are necessary. And here.

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Even the guardians of Christian morality from the Orthodox Church there is no consensus about whether a seriously ill according to his own desire to end their suffering.

Over the past five years, there are many pastoral problems in connection with scientific discoveries and new methods of medicine — shrugs priest from the town of Kalach-on-don, Volgograd region Dmitry Klimov. — Take, for prenatal diagnosis of incurable diseases. New challenges require new responses. I don’t have.

In the social concept of the ROC says: “the Prolongation of life by artificial means, in which there are actually only some organs, cannot be viewed as obligatory and in any case desirable task of medicine. Attempts to delay death will sometimes prolong a patient’s agony…”

Everything seems to be clear. However, clerics arguing about how to understand when “it’s time”, and in some cases it is necessary to wait. Suddenly tomorrow will invent a miraculous cure?

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