Not just anesthesia: What is palliative care?
ON DAYS APPROVED AMENDMENTS, introduced into the Federal Law "On the Principles of Health Protection of Citizens in the Russian Federation", adopted in 2011. Innovations relate to items explaining the conditions for the provision of palliative care. We tell what it means and what will change when the amendments come into force.
Text: Kirill Soskov
What is palliative care?
The term "palliative" comes from the Latin word "pallium", meaning "cloak" or "veil". So, the philosophy of palliative care is to smooth, mitigate the manifestations of the disease. WHO explains it better than others: this approach improves the quality of life of patients (adults and children) and their families, who face problems associated with life-threatening diseases. Palliative care prevents and relieves suffering by diagnosing, evaluating 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 inappropriate, palliative care remains the only support for the patient - in this case it is called a hospice.
The importance of palliative care is difficult to overestimate. For example, patients with advanced cancer often experience round-the-clock pain. It happens that they can not 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 family members who sometimes have to give up work and an active lifestyle in order to care for an incurable 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 diseases or life-threatening chronic diseases like AIDS and drug-resistant tuberculosis. Palliative end-of-life care is needed every year for more than twenty million patients, about 6% of whom are children. WHO notes that if you consider people who could use palliative care at earlier stages of the disease, this number will increase by another forty million.
What changes have made to the Russian law
It is important to understand that, as such, the law on palliative care does not exist in Russia. We are talking only about the adopted amendments to the Federal Law "On the basis of the protection of public health in the Russian Federation." If you rely on its first edition, then the 36th article on palliative care took exactly two paragraphs. In the first of these, the definition of such assistance was given, and in the second it was said who could provide it. In contrast to the definition of WHO, the law dealt exclusively with the medical side of the issue, and the socio-psychological aspect was not addressed.
In the new version of the law, which is available on the official website of the State Duma, the definition is 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 alleviating pain and other serious 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 are guaranteed to be provided with everything necessary to maintain the functioning of the organs and body systems.
It clarifies 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 intervention related to pain relief with the help of narcotic and psychotropic drugs.
Finally, palliative care can be provided even “if the state of a citizen does not allow him to express his will and there is no legal representative” - that is, the patient’s consent to relieve his condition is not required. The decision on this will be made by the medical commission, the consultation of the doctors, and if it is impossible to assemble the commission or the consultation, then the attending or even the duty doctor.
Why these changes are possible
According to doctors, statistical calculations and isolated high-profile cases became the catalyst for changes in legislation. Surgeon-oncologist Pavel Gorobets notes that experts repeatedly told deputies and ministers about the depressing statistics of cancer - and many people with malignant tumors become palliative patients. There are problems with anesthesia and care, not to mention psychological help, even in large cities: there is not enough information and places in hospices.
The doctor believes that some episodes of the terrible picture reached the officials when a person dies in terrible conditions and alone: “A colleague from Yekaterinburg said that the local deputy had an unscheduled visit to the emergency house. He went through the apartments and found out that there are three terminally ill patients , whose relatives have been seeking pain relief for their loved ones for several months. Four days later the problem was solved. Of course, this was partly a demonstration of the so-called manual control, but I am sure that the share of empathy would also la quite high. "
How the experts reacted to the law
One of the first to express her opinion was the director of the Moscow Multidisciplinary Palliative Care Center and the founder of the Hospice Help Fund “Vera” Nyuta Federmesser, who with 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 for their loved ones in full, and at home, but also the "right to mourning."
"In the event of the child’s death at home, the parents found themselves under incredible pressure from the police and began investigating them, they could be accused of causing death by negligence, of failing to help - and instead of engaging in funerals, they were endlessly called to the investigator ... They all they have to worry again and again, and they’ve got the idea that they need to buy clothes, excuse me, in the coffin, they need to think how to beat it all up. This is an incredible humiliation and lack of rights, ”said Federmesser in the Vera blog.
However, she also notes that the law is only the top level of work. For example, it is impossible to provide adequate anesthesia as long as doctors are afraid of criminal liability - and it is provided for any errors while working with opioid analgesics, that is, when prescribing, storing, issuing and writing off. Any mistake that does not even entail harm to health or the leakage of drugs into illegal circulation threatens with punishment, which means that doctors will be afraid to provide palliative care to people with chronic pain. Another difficulty is that people need to be informed that pain is important, it cannot be tolerated, it can be treated, and the right to anesthesia is now spelled out in the law.
To track how the development of palliative care is going on, you need to register a number of indicators - now it is the number of occupied beds and the amount of opioid analgesics consumed. Since, in accordance with the new law, palliative care should be provided mainly at home and not limited to anesthesia, these parameters are no longer adequate. According to Federmesser, efficiency should be measured by the satisfaction of relatives who remained after the death of a loved one - which is more than fifteen million people every year.
Andrei Pavlenko, an oncologist, head of the Oncology Center for Combined Therapies and winner of the Headliner of the Year award, notes that a lot of work is 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, a pediatrician, a specialist in palliative medicine, the founder of the school of medical communication skills “Message”, noted that the adopted amendments are “wrong and wrong”. Firstly, the state is tightly controlling the turnover of narcotic drugs, and it is a dangerous undertaking to oblige doctors, clinics or pharmacies to make available what the state is strenuously controlling. Secondly, there is no clause in the law, according to which the doctor can decide without consequences on stopping the treatment of a dying person.
How are things in the world
In January 2014, WHO, together with the World Palliative Care Alliance (WAPP), presented the first World Atlas of Palliative Care. In 2018, the second edition was to be released, but for now it is not publicly available. The document contains a classification of countries according to the level of development of palliative care - and Russia fell into group 3A. It is characterized by the presence of disparate initiatives and palliative care centers that do not receive sufficient support; often such centers are heavily dependent on financial support from donors; access to opioid drugs is limited; there are few centers providing palliative care, often help is provided at home, and its resources are insufficient in relation to the population. Together with Russia, this list includes seventy-four countries, including Vietnam, Venezuela, Guyana, Gambia, Ghana, Botswana, Paraguay, the Philippines, Sri Lanka, Ethiopia, Ecuador and others.
In the neighboring group 3B, where countries with “more systemic organization of palliative care” are gathered, there are seventeen states in total, including Belarus and Swaziland. In this group 3A, which includes Russia, the second largest. One more country (seventy-five) only in the very first group - these are countries in which palliative care was not found. Things are better in groups of twenty-three countries, where resources are being accumulated to provide palliative care, twenty-five countries where it is pre-integrated into the health care system, and twenty leading countries, where hospice and palliative care is well integrated.
PHOTO:dailydisco, aerostato - stock.adobe.com
