DAYS approved amendmentsincluded in the Federal Law "On the Fundamentals of Health Protection of Citizens in the Russian Federation", adopted back in 2011. The innovations concern clauses that clarify the conditions for the provision of palliative care. We tell you what it means and what will change when the amendments come into force.
Text: Kirill Soskov
What is palliative care
The term “palliative” itself comes from the Latin word “pallium”, meaning “cloak” or “veil”. So, the philosophy of palliative care is to smooth out, mitigate the manifestations of the disease. The WHO explains better than others: this approach improves the quality of life of patients (adults and children) and their families who face the problems associated with life-threatening diseases. Palliative care prevents and relieves suffering by diagnosing, assessing and treating pain and solving other problems - physical, psychosocial or spiritual. Palliative care can be provided at any stage of the disease; when attempts to cure the disease become impractical, palliative care remains the only support for the patient - in which case it is called hospice.
The importance of palliative care can hardly be overestimated. For example, patients with advanced cancer often experience pain around the clock. It happens that they cannot move independently or take care of hygiene, that is, they depend on outside help. In this case, palliative medicine is the only way to maintain the quality of life at an acceptable level and alleviate the situation of loved ones, who sometimes have to give up work and an active lifestyle in order to care for a terminally ill relative.
According to a 2014 WHO study, about one third of people in need of palliative care are cancer patients. The rest are people with progressive heart, lung, liver, kidney, brain disease, or chronic life-threatening diseases such as AIDS and drug-resistant tuberculosis. More than twenty million patients need palliative care at the end of life every year, about 6% of whom are children. WHO notes that if you take into account people who could use palliative care in the earlier stages of the disease, then this number will grow by another forty million.
What changes have been made to the Russian law
It is important to understand that as such a law on palliative care does not exist in Russia. We are talking only about the adopted amendments to the Federal Law "On the Fundamentals of Health Protection of Citizens in the Russian Federation." Based on its first edition, the 36th article on palliative care took exactly two paragraphs. In the first of them, a definition of such assistance was given, and in the second it was said who could provide it. Unlike the WHO definition, the law dealt exclusively with the medical side of the issue, and the socio-psychological aspect was not touched upon.
In the new version of the law, which is available on the official website of the State Duma, the definition has been supplemented. Now palliative care in Russia is a complex of measures, including medical interventions, psychological work and care, which should improve the quality of life of people, including relieving pain and other severe manifestations of the disease. In addition, the law states that it will be possible to take care of such patients not only in the hospital, but also at home. Moreover, they will be guaranteed to be provided with everything necessary to maintain the functioning of the organs and systems of the body.
It is clarified that medical organizations providing palliative care will also have to interact with the patient's relatives, volunteers (volunteers), social service organizations and religious organizations. Another very important amendment that brings the law closer to WHO standards is the provision of medical interventions related to pain relief with the help of narcotic and psychotropic drugs.
Finally, palliative care can be provided even “if the citizen's condition does not allow him to express his will and there is no legal representative” - that is, the patient's consent to alleviate his condition is not required. The decision on this will be made by a medical commission, a council of doctors, and if it is impossible to collect a commission or a council, then by the attending physician or even the doctor on duty.
Why these changes were possible
According to doctors, statistical calculations and some high-profile cases became the catalyst for changes in the legislation. Surgeon-oncologist Pavel Gorobets notes that experts have repeatedly informed deputies and ministers about the depressing statistics of cancer - and many people with malignant tumors become palliative patients. There are problems with pain relief and care, not to mention psychological assistance, even in large cities: there is not enough information and places in hospices.
The doctor believes that individual episodes of a terrible picture reached the officials, when a person dies in terrible conditions and alone: “A colleague from Yekaterinburg said that a local deputy arranged an unscheduled visit to an emergency house. I walked around the apartments and found out that there are three terminally ill, whose relatives have been seeking pain relief for their loved ones for several months. After four days, the problem was resolved. Of course, this was partly a demonstration of the so-called manual control, but I'm sure that the share of empathy was also quite high."
How experts reacted to the law
One of the first to express her opinion was Nyuta Federmesser, director of the Moscow Multidisciplinary Center for Palliative Care and founder of the Vera Hospice Fund - she and her team actively promoted the necessary amendments. She called the law "the beginning of a new era in palliative care" and acknowledged that it would make life easier not only for patients, but also for their relatives. The latter will receive not only the right to help in full for their loved ones, moreover at home, but also the “right to grieve”.
“In the event of the death of a child at home, the parents found themselves under incredible pressure from the police and began investigative actions against them, they could be accused of causing death by negligence, of refusing to provide assistance - and instead of doing the funeral, they endlessly summoned the investigator … they are forced to relive it anew and again, and at the same time the thought is in their heads that they need to buy clothes, sorry, in a coffin, they need to think about how to arrange it all. This is incredible humiliation and powerlessness, "- said Federmesser in the blog" Vera ".
At the same time, she also notes that the law is only the upper level of work. For example, it is impossible to provide adequate pain relief as long as doctors are afraid of criminal liability - and it is provided for any mistakes during the work with opioid analgesics, that is, during their appointment, storage, issuance and disposal. Any mistake that does not even entail harm to health or leakage of drugs into illegal circulation is punishable, which means that doctors will be afraid to provide palliative care to people with chronic pain. Another challenge is that people need to be informed that pain is important, cannot be tolerated, can be treated, and the right to pain relief is now written into law.
To track the progress of palliative care, a number of indicators need to be recorded - now these are the number of occupied beds and the volume of opioid analgesics consumed. Since, in accordance with the new law, palliative care should be provided mainly at home and not be limited to pain relief, these parameters are no longer adequate. According to Federmesser, effectiveness should be measured by the satisfaction of relatives who remained after the death of a loved one - and this is more than fifteen million people annually.
Oncologist, head of the Oncological Center for Combined Treatment Methods and winner of the “Headliner of the Year” award Andrey Pavlenko notes that there is a lot of work ahead, but gradually the number of places where palliative care is provided at a high level will increase. According to him, today in half of the districts of St. Petersburg there are no conditions at all for the provision of palliative care.
Anna Sonkina-Dorman, pediatrician, specialist in palliative medicine, founder of the school of professional medical communication skills "Communication", noted that the adopted amendments are "wrong and wrong." Firstly, the state tightly controls the circulation of narcotic drugs, and it is a dangerous undertaking to oblige doctors, clinics or pharmacies to ensure the availability of that which the state intensively controls. Secondly, there is no clause in the law according to which a doctor can make a decision without consequences to stop treating a dying person.
How are things in the world?
In January 2014, WHO, together with the World Alliance for Palliative Care (WAPP), launched the first World Atlas of Palliative Care. In 2018, the second edition was supposed to be released, but so far it is not in the public domain. The document contains the classification of countries according to the level of development of palliative care - and Russia fell into the 3A group. It is characterized by scattered initiatives and palliative care centers that do not receive sufficient support; often such centers are highly dependent on financial support from donors; access to opioid drugs is limited; there are few palliative care centers, often home-based care, and its resources are insufficient in relation to the population. Together with Russia, seventy-four countries are on this list, including Vietnam, Venezuela, Guyana, Gambia, Ghana, Botswana, Paraguay, the Philippines, Sri Lanka, Ethiopia, Ecuador and others.
In the neighboring group 3B, which includes countries with a "more systematic organization of palliative care", there are only seventeen states, including Belarus and Swaziland. At the same time, group 3A, which includes Russia, is the second largest. One more country (seventy-five) only in the very first group - these are countries in which palliative care is not found. Things are doing better in groups of twenty-three countries where resources for palliative care are accumulating, twenty-five countries where it is pre-integrated into the health system, and twenty leading countries where hospice and palliative care are well integrated.
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