Palliative care in Russia

Sonkina: the struggle for life extension does not apply to palliative care

Medicine is developing by leaps and bounds all over the world, but in many situations it is still powerless. In cases where it is not possible to cure the patient, doctors can alleviate his condition in recent months, weeks or days, relieve pain and other torments. Anna Sonkina, a specialist in palliative care of the Orthodox Mercy Service, pediatrician, told RIA Novosti correspondent Irina Zubkova about the problems associated with providing care to the incurable in Russia.

– Anna Alexandrovna, what is palliative care?

– I usually answer this way: it is the desire to ensure the best quality of life for the patient and the best quality of care for incurable progressive fatal diseases. This means the elimination of physical symptoms, emotional, psychological and social suffering, helping loved ones in the experience of tragedy. Please note: this is not only about a decent quality of life (as in the official definition), but also about the quality of death. Sometimes it seems that death does not exist in our official medicine. In any case, if we are talking about children.

– So this is helping the terminally ill at the last stage of life?

– Not always. It is important to distinguish palliative care from curative care. There are many incurable diseases, but not all of them are fatal and not all progress. Moreover, with many even fatal and progressive diseases, it is possible to prolong a person's life for a long time with the help of various methods of special treatment. For example, if it is difficult for him to breathe on his own, then special devices – supplying air through a mask or artificially ventilating the lungs – can help. But this is not palliative care. Or, for example, removal or chemotherapeutic treatment of tumors that cannot be completely cured, but their size and spread can be reduced. This is not palliative, but specialized oncological care. The doctor may try to stop or slow down the progression of the disease, to prevent complications. Palliative care focuses exclusively on the quality of life and the quality of death, and sometimes this quality comes into conflict with life expectancy. The struggle for its extension – "let him live for a few more days or weeks" – often gives a person torment.

– So, resuscitation does not belong to palliative care?

– Of course, it does not apply. This does not mean that people receiving palliative care do not have the right to resuscitation, a set of measures to "revive", "pull out" them. It's just not part of the tasks of palliative medicine. They are completely different: not prolonging life, but also not bringing death closer, to reduce suffering, and it is better to eliminate them altogether, to make sure that the departure from life was calm. All medicine is fighting for the quality of life. For the quality of death – only palliative care. By the way, this is not only medical, but also social activity. Unfortunately, its availability in our country is very low. Many things that are absolutely necessary for it are simply not provided for by our healthcare system, its entire system.

– Are you talking about the fact that hospices are not provided for by law?

– Not only by law, but also by the order "On the procedure for providing palliative care to the adult population", which regulates palliative activities and the budget associated with it. It mentions departments, special rooms, centers, services at these centers – anything, but hospices are not mentioned at all – it is unclear why. There, palliative medicine is generally understood as all medicine for terminal incurable patients. But this is a perverse idea. Its main task is to provide such patients with a decent life and quiet care from it, and hospices have historically been created precisely for its fulfillment. Hospice cannot be called a hospital. This is a house, because they no longer treat there, but help to live to the end. Probably, they are unprofitable for the budget, but hospices cannot be paid in principle, this contradicts the concept.

– But isn't the Ministry of Health developing a separate order on hospices?

– Well, then they will exist as something separate from the general system. And it will be unclear how to send patients there. The order on palliative care regulates everything clearly: who, in what cases, where and why. In addition, the money issue is hanging in the air: the order on the functioning of the hospice does not guarantee its financing.

But all this is far from the only problem of Russian palliative care.

– Not the only one? And what are the others?

– In Russia there is no basic system of patient care at home, primarily nursing. He, by the way, would be needed by many other patients, not only incurable at the stage of the near end. The system does not provide for a nurse to come to a serious patient's home. What can we talk about if no one can even make a bed for a bedridden patient, turn him around, bandage his wounds? Because of this, the palliative program simply has nothing to rely on. Visiting hospice services have to come and do a lot of routine work that could fall on the shoulders of less specialized services. Here's a look at the paradox: our district doctor has to come to his house on a single call from a patient, even if he just caught a cold. There is no such thing anywhere in the world, it is a Soviet anachronism. And at the same time, we do not have any basic home care for serious patients, including postoperative ones, who require bandages, care, massage, feeding. If you need to take tests or you need to put an IV, they take you to a hospital.

– Is such home care organized in other countries?

– It is not just organized, it is also highly specialized. Five different nurses will come to a child with complex problems – with a tracheostomy, a gastric probe, a urinary catheter, and so on: for the main disease, for rehabilitation, for feeding, for dressing, for general care. In our country, relatives do all this, often incorrectly, and it is unclear where they will be helped. We have to look for money to pay for some simple things, for help at home. One hope is for the non–governmental sector: for charitable organizations, mercy services such as ours, field services of the same hospices.

We need a state policy to optimize medical care, moving it home as much as possible from hospitals and placing great emphasis on middle and junior staff.

– But at least the family does not have to spend money on medicines and care products?

– I have to, unfortunately. But that's half the trouble. The problem of drug availability is much more serious. Strict control of their use makes medicines necessary for pain relief in severe patients inaccessible. Until recently, this applied only to narcotic analgesics, primarily morphine. Now many other medications have also been included in the list of strictly controlled ones: sedatives, psychotropic, antiemetics… We are told that this will not affect their availability to patients in any way: they say there is a mechanism for prescribing such drugs, and if the doctor does not use them, then the doctor is to blame. But that's not true. The pediatrician is afraid to prescribe the right drug to the child: after all, he is controlled more strictly, and he is not responsible for relieving pain. In conditions when doctors are not motivated to do what they should, but are intimidated by strict rules, it is simply stupid to expect heroism from everyone.

– But what about pity for the patient? After all, the doctor understands how much it hurts him?

– In our healthcare system, the patient is far from in the first place, to put it mildly. The quality of medical care in Russia is assessed from the point of view of those who provide it. To make it good, high–quality from the point of view of the patient - such a task is not even set. Everything is aimed at meeting certain standards and rules, even if they are not always logical and reasonable. If a patient's beloved dog can be brought to a hospice abroad, then our parents may not be allowed to go to the intensive care unit to a dying child. In the last minutes of his life, they will push a tube down his throat, catheters into all the holes, connect him to all kinds of loud buzzing machines, staff will run around – and not a single native person.

Our medicine is always and everywhere fighting for life. It is not customary to talk about death, our doctors are not ready for these conversations, unlike their Western colleagues, who are specially trained to talk about such complex topics. Western medicine has recognized that doctors are not omnipotent, and if death is inevitable, we can do a lot to ensure that death is "good" – worthy, without suffering. And our doctors behave as if there is no death.

– What are the ways to solve all these problems?

– First of all, they need to be realized – at all levels. Unfortunately, we do not have an institution of self–regulation in medicine - by the way, provided for by law. Each of the medical specialties requires a national medical association with mandatory membership, but we do not have one. This means that professionals who have been specially trained in how to help incurable patients at the last stage of their lives do not have the opportunity to get together and define, formulate: "Palliative care is this and that, for its organization, this and this is necessary." Such a democratic institution of civil society as professional self-regulation allows medicine to develop. This would be the first step to start solving all these problems.

Portal "Eternal youth" http://vechnayamolodost.ru16.10.2013