Who has the right to die?

Who has the right to stop life-sustaining therapy for a person with a terminal illness—the doctor, the patient, or a government regulation? Why do doctors strive to treat “to the bitter end”? Where should we draw the line between fulfilling the patient’s will and euthanasia, which is prohibited in Russia? These and other questions were discussed by doctors and sociologists* at a round table organized by InLiberty and the Live Now charity foundation. “Takiye Dela” publishes the main theses of the meeting.

What does the patient want?

The prognosis of such an incurable disease as amyotrophic lateral sclerosis (ALS) is known with an accuracy of two to three months. With ALS, a person loses the ability to move, speak, swallow and breathe - this is an irreversible process. The patient has the opportunity to decide which medical interventions he accepts and accept the amount of treatment that suits him in advance. Or refuse any treatment.

For example, one of the patients with ALS said from the very beginning of treatment that she would like to refuse artificial life prolongation , including artificial ventilation. She asked not to connect the corresponding devices if her muscle weakness reached the limit. Despite this, her relatives called an ambulance, and doctors hospitalized the girl in intensive care. She spent the last month and a half of her life completely immobilized and completely alone.

Another story is refusal of already started treatment . A doctor by profession with the same diagnosis agrees to carry out artificial ventilation of the lungs and spends immobilized in bed for about a year. His wife spends almost all the time with him in the ward. Then the man decides that he can no longer live like this - the device, although it keeps him alive, makes it difficult for him to communicate. The doctor considers himself a burden to the family, but he cannot ask to turn off the machine - he knows that this is practically equivalent to murder. So he simply refuses nutrition and antibiotics and dies in misery from dehydration and infectious complications.

Stories like this are very difficult to generalize. But they show that much of the work of a physician is an attempt to combine the individual characteristics and preferences of the patient and his family with professional and legislative guidelines. Doctors have to find out what the patient really wants and help him understand what he wants. After this, the specialist needs to act in accordance with his informed decision and bring the whole family into agreement with him.

One of the tasks of doctors working in such situations is to collect conflicting legislation on this subject to a point that will allow them to respect the will of the patient and their own legal safety. The patient has the right to make any decisions in such cases. Here it is important to determine the patient’s ability to express his will, how adequate he is. But you need to understand that there are no legally ideal solutions in this area - moral and ethical issues are always broader than legal ones .

Everyone has a right

Legally, situations with refusals can be divided into several areas: euthanasia (prohibited in the Russian Federation), patient refusal of medical intervention, cessation or failure to carry out resuscitation measures. Very often these situations are mixed, although each of them has marked solutions.

If we are talking about mixing refusal of treatment with euthanasia, it is worth paying attention to the fact that a person, being a citizen and a patient, has the right to life , according to the norms of the Constitution. The only restriction on life may be the death penalty, on which a moratorium has been imposed in the Russian Federation.

At the same time, a person has the right to integrity , including physical integrity. According to the Federal Law on the Fundamentals of Protecting Citizens' Health, a person has the right to both consent to medical intervention and refuse it. Based on this, it is worth clearly distinguishing between euthanasia and refusal of treatment.

Euthanasia is a person’s request to hasten his death by one or another method, including by stopping artificial life support. But in refusing treatment there is no direct cause-and-effect relationship with the desire to hasten one’s death; there may be other motives - reluctance to suffer, distrust of certain procedures, religious motives. So until the patient asked the doctor to hasten his death, we cannot apply the concept of “euthanasia”.

The right to refuse treatment is prescribed by law; it must be in writing, indicating the consequences of this refusal (including if we are talking about death). Perhaps the patient’s refusal is intended to hasten his death, as with euthanasia, but legally these are different things. Doctors are often afraid of being accused of murder for failure to provide medical care, and in the conditions of our state this is a fair fear, but if you know all these norms and apply them correctly, there should not be any confusion with euthanasia.

A separate issue is the failure to perform resuscitation or its termination. There are conditions in the law that allow both. If we talk about palliative patients, the legal condition for this is clinical death due to a progressive incurable disease. But we need proof of this. This could be the protocol of a consultation of doctors, which the patient’s relatives and himself are familiar with, but it must be drawn up in advance, two months or better even six months before the cessation of resuscitation.

There are difficult cases when the patient asks to be disconnected from the artificial life support system; but then he will die right before the eyes of the doctors. In essence , this is euthanasia, but in fact it is a refusal to intervene . World and Russian judicial practice shows that suicide is not punishable and the patient has the right to refuse intervention, even if death follows. Medical workers do not have the right to provide medical care against a person’s will. The exception is those cases when there is a threat to life, and the patient is unable to fully express his will. However, the implementation of this assistance must also be accompanied by the decision of a council of doctors.

What remains outside the law

Some doctors consider themselves absolutely powerless within the framework of existing legislation. No matter what a person says, the doctor is forced to perform resuscitation or something similar in order to avoid criminal liability. In fact, this is distanasia (denial of death and dying - TD's note). It is rarely possible to smooth out this situation and bring it to common sense. Now there is no optimal paper or exemplary situation, no indisputable authority with the help of which such cases can be regulated.

The question arises: who is the main responsible player? There are three of them - the patient, the doctor and the patient's relatives. Based on medical practice, nursing staff should also be included here. This is extremely important because nurses care for a terminally ill person 70-75% of the time.

In itself, a person’s stay in the intensive care unit usually takes place in an unfriendly atmosphere. All over the world, doctors agree that a person needs to be transferred from intensive care as soon as possible - it is impossible to create comfortable conditions for staying there, even if he is surrounded by loved ones (in Russia they have only now begun to let them in). This must also be taken into account in cases where the patient most likely will not leave this department.

Why palliative education is needed

Medical education should include some kind of palliative care - sometimes people cannot be saved from death, and they must die efficiently and well . Many specialists now simply do not know this, they try to continue treatment to the end, reaching extreme overloads for themselves and the patient, arriving at a predetermined result. Someone should tell them that there was no defect in their work and that they did their best.

For palliative care doctors, conflicts most often arise with other medical professionals. They are easily resolved within the team, with relatives too, and even with patients, but with doctors they are the most difficult. As a rule, none of them is ready to admit the pointlessness of treatment in such situations and insists on treatment to the bitter end - they were not taught any other way. Therefore, palliative doctors should attend the consultation regarding terminally ill patients on an equal basis with everyone else.

A palliative care doctor is needed to defend the rights of the patient, alleviate his symptoms and speak the same language with both him and the professionals, forming a connection between them. And also, in order to lend a helping hand to professionals at the right time, to take the patient away from them - they work within the framework of the attitude that they cannot help but continue treatment.

What solutions does world medicine offer?

The global trend in medicine is partnership , interaction on equal terms, resolving the main dispute: who is the main doctor-patient in a pair. The doctor is a specialist in medicine, and the patient is a specialist in his own life, in his values ​​and views. When a decision is approached through the intersection of these two expert positions, then success is achieved.

The institute of clinical mediation is being developed - creating a system of understanding between medical staff, patients, and health officials. The patient must know absolutely everything - all the complications, all the consequences of any intervention; In addition, he must understand how he will live further (and die, if this is the case).

Sometimes continuing treatment for a person will amount to torture, and he begins to experience things that our imagination cannot contain. The doctor here finds himself in a dilemma with a trolley - will it run over one or five? There is no good solution here . Many doctors take the position that a person cannot make decisions about dying, even in such cases. In addition, the patient can change his desire several times: say that now he does not want artificial ventilation, in an hour he does not want a catheter, and in another hour he wants to live, no matter what.

Experts say that most Russian patients, when on their deathbeds, prefer to end their lives at home, among their relatives. Moreover, the closer a person is directly to death, the less individual this decision is - it is made by his circle of family and close friends. Death now is not a matter of individual human decision.

*Participating in the discussion were: doctors Lev Brylev, Diana Nevzorova, Anna Sonkina and Dmitry Troshchansky, oncologists Mikhail Laskov and Andrey Pavlenko, lawyer Polina Gabay and sociologist Dmitry Rogozin.