Steps: From Initiative to a Sustainable System or the Path from 2 to 4b

On 30th October 2023, a webinar was conducted by the Paced team.

During the webinar, we discussed levels ranging from 2 (initiative) to 4b (sustainable system) and explored strategies for transitioning from early stages to advanced palliative care.

You can watch the video recording in English and Russian on our YouTube channel.


Nyuta Federmesser, founder of the "Vera" Hospice Charity Fund, head of the Moscow Palliative Care Centre

Anastasia Zhdanova, lawyer of the Moscow Palliative Care Centre

Nuta Federmesser, the main speaker of the webinar, is the founder of the "Vera" Hospice Charity Fund and the initiator of palliative care development in Russia. She shares her experience and knowledge about the development of palliative care, including aspects such as legislative support and the availability of narcotic medications.

Federmesser describes the four stages of palliative care development in Russia, starting from the emergence of the first hospices in the 1990s, which were poorly integrated into the healthcare system. This period was characterized by a need for more continuity between the regular healthcare system and institutions providing care to terminally ill patients. She emphasizes that even today, palliative care is unevenly developed in different regions of Russia.

The importance of combining the efforts of the government, non-profit organizations, businesses, and the media to create an effective palliative care system is further discussed. Speakers highlight that palliative care should be based on a strategy that includes training medical professionals and public awareness.
The webinar also addresses topics such as the accessibility of morphine and other opioid pain relievers, the lack of awareness among officials and medical workers, as well as cultural and social barriers. Federmesser discusses the challenges of implementing palliative care in regions with different religious and social beliefs.

At the end of the webinar, the role of the PACED Foundation in promoting palliative care and the importance of joint efforts of all stakeholders in this process are emphasized. Current initiatives and projects of the foundation aimed at improving the quality and accessibility of palliative care are also discussed.
Nyuta Federmesser: In preparing for this meeting, we have divided the development of palliative care into four stages. Overall, these four stages of palliative care development in Russia correspond to the step levels we see in the World Atlas of Palliative Care.

Anastasia Zhdanova: The nineties are characterized by the emergence of the first hospices as separate centres in Russia. They were opened in St. Petersburg, Moscow, Tula and Ulyanovsk regions. At this stage, hospices are not included in the unified healthcare system. The population and medical workers have only a little information about their activity. Continuity between the regular healthcare system, specialized primary healthcare, and hospices is absent. People in need find out about the existence of hospices, as a rule, by chance. Clinics and hospitals do not route incurably sick people to palliative medical organizations.

Nyuta Federmesser: This situation in the atlas is called "level two". At this level, unfortunately, palliative care is currently in Kyrgyzstan, Tajikistan, and even in Georgia and Armenia.

The first period is the emergence of separate care centres, held by enthusiasts, specific people capable of strong character and belief that they are doing the right thing, trying to break the walls.

This is a unified format of the emergence of palliative care. It was the same in England, it was the same in Canada, everywhere—a typical approach - when everything starts with a specific enthusiast. With the fall of the Soviet Union in the 1990s, this Initiative appeared in our country, too. We began to learn to notice a person. In the first decade of the 2000s, rare practices started to multiply, and legal recognition was needed. The exact process was going on in Belarus, but a little earlier. I would also attribute Kazakhstan to the second level.

The third level, or the third stage of development by the World Atlas - is the recognition by the state of the need to create a systematic legislative base and the participation of non-state non-profit organizations. In the same period, the topic becomes very relevant for the media.

The fourth stage began in Russia in the "pre-covid" 2019, and it continues and will continue for many more years if not decades. This is related, among other things, to the fact that palliative care inside the country needs to be more developed. Even the unity of legislation has yet to lead to the alignment of processes. A unique situation has been created where everything is made at the legislative level, and at the infrastructure level, some regions are still at the first stage - in the 1990s.

The first hospice in St. Petersburg started in a small wooden house in Lahta; Andrey Gnezdilov founded it. The first Tula hospice was founded by Elmira Shamilevna Karazhaeva, who left us a month ago. We hope that the hospice in Tula will be named after her shortly.

The First Moscow Hospice is named after Vera Millionchikova; its co-founder is Victor Zorza. The first Moscow hospice appeared in 1993-94. We consider Vera Vasilyevna Millionchikova, the founder of adult palliative care, and Galina Chalikova, who passed away less than a year ago at the First Moscow Hospice, the founder of children's palliative care.
Vera Vasilyevna Milionchikova and Galina Chalikova, media base "Vera" foundation
Events intensify when separate centres multiply in the second stage, and "word of mouth" spreads the information wider. 1994, a hospice opened and was the only one for many years. By 2000, at the Initiative of Vera Millionchikova, there were already eight hospices in Moscow. However, these were eight buildings, which meant something other than implementing the philosophy of palliative care in each.

Benefactors always helped the First Moscow Hospice, but no official structure, Foundation, or union existed. Charitable help was provided anonymously and was not deliberately advertised. The "Vera" Foundation only appeared in 2006, named in honour of Vera Vasilyevna Millionchikova. From the outset, the Foundation was created exclusively to support the First Moscow Hospice. I want to address all our listeners: foundations must be created! Learn from the experience of other countries and develop foundations when organizing. It is optional to have a single charity foundation that will help everyone. A foundation in an organization will expand your opportunities and bring more freedom of action.

In 2007, we already started helping other hospices in Moscow; we wanted at least one city for all hospices to be standardized in terms of service provision.

In 2008, when Russia was still a relatively free country, and legislation was improving, a law on endowment appeared, and we created an endowment - a target capital. Our fund's endowment remains the only one in the healthcare field in Russia; there are also target capitals in culture and education. Also, for the first time, we started an informational and educational campaign on a national scale to talk about what a hospice is. One of the British hospices had a slogan: "We can't add days to life, but we can add life to days". This British slogan inspired us to read the text "If a person cannot be cured, it does not mean that he cannot be helped" - "if one can not be cured, one still can be helped". This has primarily changed the consciousness of both patients and the medical community. I think the most important thing is the word. In the beginning was the word; if you find the right words, the situation changes. Depending on the words you see, it will change in one direction or another.

In 2009, the "Vera" Foundation began to help hospices in other regions. In 2010, unfortunately, my mother, Vera Vasilyevna Millionchikova, passed away, and, as often happens, this gives a powerful fundraising push. In 2011, we held the first international conference, attended by Robert Twycross - one of the founders of palliative care in the world and one of the founders of PACED. At this conference, he gave a fantastic speech addressed to the Ministry of Health. You know that Robert is a very emotional person, tall, long-legged, grey-haired - very imposing. He said: who says that morphine kills? The absence of morphine kills. This statement made the effect of a bomb going off: how is it that - the lack of morphine kills? In the same year, in Russia, a law on protecting citizens' health appeared, outlining the concept of palliative medical care. It is formulated without the involvement of palliative care specialists and is categorically incorrect - it contradicts palliative philosophy and the definition of WHO. The law states that palliative care is a set of medical interventions contributing to the wrong understanding and interpretation of specialized medicine and palliative care. Parallel to these events, non-profit organizations enthusiasts in 2012 launched a project to create a children's hospice, and a large team of specialists goes to study in Poland and the UK. The following year, a building is allocated for a children's hospice, and an adult hospice begins to accept children officially and continues to do this for many years - until the doors of the children's hospice open. The "Vera" Foundation, understanding that in Moscow, children's palliative care is available both in the hospital and at home, and in other regions of Russia, it does not exist, begins a program to help families at home. The Russian situation in 2014 is very similar to what is happening now in Armenia, Georgia, Kazakhstan, and Kyrgyzstan.

In 2015, with the participation of Robert Twycross - a remarkable enthusiast and individual - we convinced the Ministry of Health of the need to create an Association of Professional Participants in Hospice Care. Interestingly, a similar one was created earlier in Kazakhstan.

The "Vera" Foundation launched a project called "Hotline", and an online resource called "About Palliative" appeared. I would like for the PACED Foundation to have a similar resource. It is the best resource on the topic of palliative care on the internet.

In 2016, we in Moscow made a logical and clear decision. For palliative care to no longer depend on each specific person at the head of a particular hospice, in order not to have movement in different directions depending on the peculiarities of understanding palliative care by each specific hospice director, to start working on uniform standards that the world and Europe have long been living by, we have combined all Moscow hospices into a single centre.

When there is one head and one director, everything is easier: to control, to achieve a uniform format in drug procurement, in the level of analgesia, in the training of nurses. I became the director of such a structure, but at the same time, I already understood and voiced it, and it showed in the strategy. After the standardization, all hospices must disunite and leave as non-state service providers. The state should retain the function of financing and quality control and transfer the provision of services to non-state providers. Then, politics and various circumstances made many changes to the agenda and timing of implementation, but the path in this direction remains. In particular, in 2023, we now understand the need to introduce non-state providers and the state to leave the function of control and routing. Shortly, part of our structure will already go under the Department of Health (this is such a "ministry of health" in Moscow). It will control routing and the register of all patients needing palliative care.

It is important to say now that the system's development is parallel to the development of the charitable sector. The "Vera" Foundation does not curtail its work but is stepping up. If a few years ago, the leadership of the "Vera" Foundation could say - that this is the only fund in the vast Russian Federation engaged in the development of palliative care, then now the Foundation has a program to support funds and non-profit organizations in the region. There are already more than 60 such organizations across the country.

Today, this is not competition; competition is still very far away - this is still market development, and it is finally understanding the problem by the regions. Regional funds are emerging and growing, and we know that more and more areas are moving from level 2 to level 3a - so far, only to the second step. At the same time, with the increasing volume of home care in Moscow, we want to switch to telemedicine services in 2024; that is, some consultations will be online. The first such consultations were introduced in practice by the children's hospice in Warsaw, and they have been actively using them in their activities since 2017. In 2025, Moscow should finish building its system infrastructure.

It makes sense to talk more about Russia's third stage of palliative care development. It includes many legislative changes, which slow the growth of palliative care in all the countries from where you are listening to us today. But before we start discussing this stage, a legislative base does not affect the quality of care. In many places, care was of high quality even before the appearance of regulatory legislation, and it remains high quality not everywhere but only where there are people who are interested and want to learn. Legislation provides an opportunity but, unfortunately, does not guarantee anything.

Anastasia Zhdanova: The third stage is a period when the most turbulent changes occurred in the Russian Federation; this is the peak of development, in which the efforts of both the state and NGOs, the business community, and the media were united. Such a union, as was in the past decade, when we, on the one hand, received support from the "Vera" Foundation; on the other hand, we were supported by the state at all levels, starting from the regional, where the Deputy Mayor of Moscow for social development Leonid Pechatnikov came forward with the Initiative of the transition of the head of the "Vera" Foundation Nyuta Federmesser to the management of the Palliative Care Centre - in fact, he proposed a transition to a new level of development of the sphere. "It's time not only to criticize but also to start doing it yourself" - with such a proposal, the state came out. This was a stage of uniting efforts when the state came to NGOs and said: "You know how to do better? Do it!" We also received support at the federal level - we had direct contacts with both the Ministry of Health and the Government of the Russian Federation, and even with the highest level of power in the country when we realized that we could move changes and improve legislation.

Nyuta Federmesser: we will tell you later how it happened. I cannot answer the question of why it happened, but I can answer the question of how we got there. Perhaps you know the book by Derrick Doyle, "How to Start", about palliative care. He describes the stages of development, and level 3a, where many of you are now, is inevitable and must involve four components. You can only move forward by uniting the state, NGOs, businesses, and society because the media creates the correct request for the quality of care.

Anastasia Zhdanova: when we were at the third stage of the development of palliative care, we faced the peculiarities of our country. On the one hand, we have typical problems that all countries face - we will come to them a little later. On the other hand, we needed to consider the Russian Federation's peculiarities.

Nyuta Federmesser: This was a challenging, the biggest challenge. This challenge led to the establishment of PACED; thanks to this challenge, we gained the right to appeal to representatives of other countries. We changed the definition of palliative care in the legislation, making it more reasonable and aligned with the WHO definition and global ideas. We convinced the state authorities that the law on analgesia needs to be changed, that hospice should be prescribed as a type of medical organization, and that there should be a position, and eventually, a speciality of a palliative care doctor. We explained that palliative care should be provided at home and in stationary organizations because the country is enormous.

But how do you implement federal legislation, written in the centre of multi-million Moscow, by people who have hardly been anywhere except Moscow, St. Petersburg, Europe, and the USA? How do we convey the problem of territorial availability and population density? Yes, there are eight adult hospices in Moscow, two children's, and nursing homes. But what about there in Yakutia? What about in Tyva? What about in Dagestan? What about in the Caucasus, where the mentality is entirely different and where, according to cultural traditions, help is always provided to elderly people at home? And there are many interesting features. For example, if in Moscow and large cities, we proved that relatives should be allowed 24/7 in our institution, there is no such problem in the Caucasus. Try not to let relatives in the Caucasus 24/7 into the ward of their seriously ill relative; they will demolish the hospital. There is another question: how many relatives are to be admitted simultaneously? One of the hospitals in Makhachkala (Dagestan) told us that they try not to let more than four people at the same time into the resuscitation of their seriously ill relative simply because it is difficult to work when there are more than four relatives there. This is how different territorial accessibility in the country is; this is how various economic and social development is. An outdoor toilet with no hot water is not only in the residential private sector; this is also included in the healthcare system. We have healthcare institutions heated with coal, which are snowed in winter and difficult to get to—severe cultural differences - both Muslim, Buddhist, and Christian, and any region you want. For example, in the Muslim areas, schools for carers and nurses exist at mosques. It turned out that spreading knowledge, information, and the culture of care and assistance is necessary, rather than through madrasahs such as non-secular medical schools. Such an approach will work faster than organizing assistance through state structures.

We have an excellent economist, Natalia Vasilyevna Zubarevich, who proposed the "Theory of Four Russias" many years ago. The four Russias are the first Russia, which includes millions of cities and the most economically developed territories close to the European level: Moscow, St. Petersburg, Yekaterinburg, Novosibirsk, and Samara. The second Russia is large and medium-sized cities with a clearly defined industrial profile, for example, Nizhny Novgorod and Kaluga. The third Russia is small cities, working settlements, and rural areas. Thus, this is a large part of Russia, the province and periphery regarding social and economic life quality.

Third, Russia has a predominantly elderly population, the youth living there, and a very high percentage of alcoholism and its particular specifics. The fourth Russia is national republics: Caucasus, South Siberia, Tuva, Altai. This is also a province and periphery, but specific, in which its features are related to religion and the process of urbanization. The transition of the population to cities is still going on, as well as with strong patriarchal norms. There is a request for end-of-life care in these regions, but it is an entirely different format. Striving in these regions for what happened in the post-war years in the UK, what we all strive for and try to match in palliative care, is entirely meaningless. There are also unique "pieces" in Armenia, Georgia, Kyrgyzstan, and Tajikistan. In these countries, there are territory segments to which one should approach with a completely different tape measure, with a completely different measurement.

In addition, there are factors expected to the world that reduce the availability of palliative care and do not allow us to reach levels 4a and 4b. The most basic is that in states, the national strategy does not include a plan for palliative care; it needs to be provided or carried out with a limited volume of trained doctors in palliative care. For example, in most European countries, the number of medical specialities is about 30, not positions, but specialities - not a position at work, but a speciality. The number of specialities is limited, and out of these 30, a specialist in palliative care, a palliative care doctor, is definitely included. A person learns this in postgraduate training.

In Russia, there are more than 90 medical specialities; among them, there is no doctor in palliative care, although we already have training courses. In this matter, the dynamics and development are fundamental. First, training courses should appear, then a position and only after that a speciality. Thus, a speciality can occur when the practice has already been worked out, and sufficient specialists exist.

Another important factor, which we are used to putting in the first place, but with the presence of a strategy, it would be solved by itself - these are regulatory restrictions on morphine and strong analgesics. The next factor is the availability of such drugs, even if they exist. Then, there is a lack of information among officials, medics, and patients. If you have no information, you do not know what to want. If people are used to suffering at the end of life, and they have the word "cancer" associated with the word "pain" and the word "death", and they do not know that it can be different, then they do not require, and the state power does not react. The state power is always rigid and responds to requests, and very rarely, or maybe never, shows Initiative in humane issues.

Another factor is cultural and social barriers, as well as the stigmatization of palliative care. We are fighting this in Russia, as many are still doing worldwide. Hospices are still associated not with life but with death, especially among people who have never encountered them. Those who have encountered them once already understand that a hospice is about life.

According to the World Health Organisation, these factors reduce the availability of palliative care. Palliative care receives only about 14% of patients in need worldwide, and these 14% are mostly concentrated in large cities.

Anastasia Zhdanova: During the third stage, the peak of development, we worked with all factors reducing the availability of palliative care in Russia. In this situation, we needed to unite all possible resources and political will, which was supposed to help us change the situation, ensure the availability of pain relief, ensure employee training, and create infrastructure. At this period, one of the most important tasks for us was to systematically formulate the sequence and content of actions for the authorities to ensure the availability of palliative care.

We saw that neither the national project "Healthcare" nor "Demographics" is a word about palliative care. This is unsurprising because the state is interested in birth rates, combating diseases that lead to premature death, and treating those diseases that bring taxpayers back to work. Palliative care is about something else; it does not have a direct and apparent economic effect on the state. We needed to interest the authorities in the development of palliative care. On the one hand, this was implemented through the media, through various vivid life stories that attracted society's attention and then the authorities. On the other hand, by explaining to the state the foundations of the economic efficiency of palliative care.

Nyuta Federmesser: This was a slightly different country, a slightly different government. We managed to get a priority project into the state strategy. Pay attention; this was almost seven years ago. We would like you to watch the video about this project. To get to this priority project, many things had to be done; we had to reach a certain level of interaction with the authorities. But the video allows you to move to a new level of interaction. You watch it, and then we will dissect it by slides as an instructive textbook.
Link to video "Palliative care in Russia: a priority project"
Nyuta Federmesser: Now, we will go through the slides of this video. It is essential to understand that any country or state has its priorities and schemes of work in some areas and national programmes. That's how the state works with the economy, defence or industry, and the system of social challenges: healthcare and social protection. Understanding the state's priorities, plans, or voices is essential before starting a conversation about a national strategy. At that time in Russia, there was a fashion for national projects, which were implemented in different directions.

National projects were part of the national strategy. Such a principle is implemented in every country. It would help if you pulled out from the depths of your government (and for this, you do not need to meet with anyone, study the documents), what the current national policy national strategy, what goals turn, what needs to be done with medicine and social protection, - and try to fit in there. In these documents, You will find references to the topic you need - something will be written about longevity and the quality of life. Nowhere in the strategies is anything written about palliative care, but there is necessarily a mention, for example, of the quality of life in old age. Such a mention is already an anchor for you. Medicine is developing, people have begun to live longer; and if they live longer, then the period of chronic illness and dying is also longer, so we need to develop palliative care. In this way, you can integrate. We managed to do this because we understood two things: first, we require a priority project in format, and we must be included in the national healthcare project; secondly, it became apparent that the country wants to develop technologies, and the key proposal was the emergence of industrial production of opioid analgesics. While we were shouting that people were dying without pain relief, no one heard us. However, we immediately heard when we started saying that pain relief requires developing production on our capacities and has a specific economic effect. This is a different view, and I suggest looking at the presentation from this point of view.

Officials are used to dry reports and presentations with lots of figures. On the one hand, you have to speak to officials how they are used to; on the other hand, you need to surprise them somehow - you need to catch their attention in a succession of reports, stand out, and be memorable. Here's what we did - we made a presentation for the priority project, which included figures, slides, and charts, but we made a video with voiceover and used many psychological components. We show the officials the usual regulatory act, highlighting the "set of medical interventions" in it. We show the standard chart, demonstrating that they are ineffective. This is not very kind - any official wants to be effective. We show that we have already identified the problems; there's no need to look for the problem; we have already done this for you - here are these four problems. And we show that as leaders, you are ineffective - this is the offensive part. But behind the scenes, people hear a rather lively voice that doesn't let them, so to speak, feel the offence. Then we identified a wonderful thing, which, by the way, works absolutely in any state: cynically, but the politician is not interested in the dying patient because he is not a voter. But those who remain after him are voters, and we grasped this thought. Yes, you don't need 1.3 million dying - they will die anyway. But it would help if you had those who stay, and they can be either embittered or grateful. Grateful ones will support the system that helped them in the most difficult period of their lives when they were losing a loved one. Count these people, and you get 18 million - 15% of the population. Also very important is that these are new people every year, and secondly, when we say "family, friends, colleagues, neighbours" - these are voting, sensible people.

Let's remember again that each country has its trends. At that time in Russia, there was much talk about inter-departmental interaction and the need to develop it - and we show that palliative care itself is inter-departmental interaction. By forming it, we will inevitably improve the connection between organizations, where there will be an oncology dispensary, psycho-neurological boarding schools, and a nursing home and home help. We created a tempting picture and told that we could change the country's level in the world atlas and move towards level 4b in 2017; Russia was still striving for this. Every official needs to be shown money, and to develop something new is expensive.

Show where you will be able to save. For example, everyone knows it is costly if a person is on mechanical ventilation in an intensive care unit. We show how many people in the country need mechanical ventilation every year - these people will not be taken off the apparatus and will not get up on their feet; these are those who need it for life: spinal muscular atrophy, serious post-stroke damage, brain stem stroke, vegetative state after car accidents, etc. If such a patient is in a hospital, then according to the calculations 2017, it costs 28000 rubles a day. And today, it's already somewhere around 150000. Next, we show the cost of such a patient's stay at home, including the work of a round-the-clock sitter. With this, we demonstrate that you can save and optimize costs. Although, at first, you will need to invest in equipment and training.

Such calculations are essential. As specialists from NGOs in the field, we know the cost of various processes better and better. Only we can make such calculations because we understand what is lost and what is gained.

Here's an interesting example that was calculated: When a person doesn't receive pain relief as part of palliative care, they either call an ambulance or need to be hospitalized for pain relief. We show the calculation: one ambulance call costs 16,000 rubles, but if there's palliative care, the prescribed medications are received, there's no need to call an ambulance – and that's zero rubles. A person is in the hospital because they weren't given pain relief at home; they're in pain, and the ambulance took them to the hospital. Here's the cost of their stay in hospital, but if they received pain relief at home, there's no need for hospitalization. How much does it cost to stay in intensive care, how much does it cost to remain in a hospice, and how much does it cost to be under care at home for three months if a doctor's visit happens once every three days? And you need to demonstrate optimization.

We did not calculate the next data block, but by a particular agency that spent much time on this work. Data on how much money the state loses from the labour market by excluding the relatives of patients who stay home to care for the sick.

And in the end, the tempting results over the years – looking at them, I realize that we have achieved most of them.

Returning to the state's priority tasks, let me remind you that in 2017, the institution of governorship was developing, and the weight of the leader in the regions was getting bigger. That's why we end the presentation with the phrase "...and especially on the ground". And the phrase "Help in grief is not forgotten" is very understandable to a person with a Russian mentality.

When you review the video, you'll see all these references. It's important to note that we broke the rules in the presentation and returned to them when we showed photos. We humanize the officials all the time; we show emotion, and we make them feel something.

Anastasia Zhdanova: I want to say that the priority project was not approved. At that time, the state was not ready to see the priority project for developing palliative care as a national project. Nevertheless, this work was handy; we could bring to all levels of government the essence of the problem and the methods for solving it. Thanks to this work, we received instructions from the federal authorities, which were implemented starting in 2017. Firstly, an instruction at the level of the President of the Russian Federation to expand the concept of palliative care. We understood that the existing definition needs to meet the World Health Organization's approach and significantly reduce the scope of palliative care. In addition, the new legislation stated that palliative care is multidisciplinary, is provided in interaction with relatives and with social service organizations, and is aimed, among other things, at psychological support for patients. Secondly, thanks to the priority project, we got the President of the Russian Federation's instruction "On Provision", on which the provision of patients with medical devices and medicines at home is organized. This norm was fixed in the Federal Law and the Programme of State Guarantees of Free Medical Assistance to Citizens. Following this, the regions were instructed to prepare programmes for developing palliative medical care.

At that time, I needed clarification on why we were taking on the task of monitoring the implementation of this assignment by regional authorities. Now, Nyuta and I are monitoring how the country's programs for developing palliative medical care are implemented.

Nyuta Federmesser: now, I hope Nastya does not have this question because if you do not take on the monitoring function, any state agency - officials everywhere are tired, all over the world, they are not at all happy when some tasks are dumped on them - will find a cunning way to report some drawn figures. You need to constantly prove to them that this is a fake, that this is not the case, that in reality, everything is different, and this is important.

Anastasia Zhdanova: That's right, this assignment allows us to do annual monitoring, identify such fakes, and constantly keep regional authorities and governors in tune. Thus, for them, the issue of palliative care, although not included in the national projects, is under the control of the President. They know that the President receives information every year about how things are - not on paper, but on the spot. And this is an incentive for development.

The second complex of reasons, which WHO voices as an obstacle to the development of accessible palliative medical care, concerns excessive regulatory restrictions regarding opioid analgesics and insufficient access of the population to opioid analgesics.
Availability of opioid analgesics in relation to pain relief needs
This cartogram depicts the planet Earth. The International Narcotics Control Committee prepared it. At the time we were preparing the program, a representative of the committee contacted us, and we realized that, strange as it may seem, the International Narcotics Control Committee is our ally in the matter of increasing the availability of opioid analgesics. As a result of its activities, the committee identified a clear relationship - the more available opioid analgesics are for medical use in legal circulation, the fewer reasons for their illegal circulation. The cartogram shows how the availability of opioid analgesics is in different countries of the world. We see that Canada, the USA, and Australia are states where the supply of the population with opioid drugs exceeds the calculated need thousands of times, while in the Russian Federation and the countries of the post-Soviet space - the supply is meagre. In Russia, for example, it is only 8%. This analysis became one of the arguments in our dialogue with the authorities, and we continued to work on increasing the availability of opioid analgesics both in the normative legal field and in the public space through the media.

Nyuta Federmesser: I want you to hear on each slide that in interaction with state structures, on which the quality of life of our patients depends, we must constantly voice not our needs and needs but find overlaps of interests of our sphere and the state. On the cartogram "Accessible amount of opioid analgesics about the need for analgesia," you can hardly see the countries that the participants of our meeting represent. Officials of our countries prefer to avoid this; they want to appear here, and our task is to formulate the official's interest.

Anastasia Zhdanova: The post-Soviet space is similar to Nigeria and Uganda. It looks depressing, and the situation needs to be corrected. By the way, such a cartogram will be an excellent argument for those who are afraid of opioid addiction. When looking at it, it becomes evident that the problems of the United States and Canada are infinitely far from us.

Nyuta Federmesser: We are scared by the fact that in the United States, people are dying from overdoses at every step. We understand everything; we don't want to go there, but it will take us a couple of centuries to get there - we need to accelerate.

Anastasia Zhdanova: In addition, the International Narcotics Control Board in 2018 conducted a study to identify the reasons that hinder the availability of opioid analgesics. More than 100 countries participated in the study, and representatives of the Ministries of Health and non-profit organizations were surveyed. According to the results of the study, the main reason hindering the availability of opioid analgesics is the lack of knowledge and training of medical workers. Among the important reasons, the participants of the study also indicated fears of developing addiction. There are reasons related to burdensome regulatory restrictions, fear of leakage, and fear of responsibility.

Nyuta Federmesser: And yet, 38% of specialists from 100 countries in 2018 named the lack of knowledge the main reason. We often exaggerate the importance of responsibility and over-regulation.

Anastasia Zhdanova: The study shows a picture around the world. In Russia, we first of all focused on burdensome legal requirements. First, we included in the law an entirely declarative but significant norm that the patient has the right to pain relief, including the use of narcotic drugs. We abolished the requirement to hand in used ampoules of narcotic drugs at the clinic. We have extended the validity of prescriptions to 15 days - before that, the validity of the prescription was so short that patients and their relatives often did not have time to use it. Together with Moscow doctors, we analyzed the adequacy of the 15 days and concluded that it is optimal - we will not ask for its increase. This is the term by which a doctor should re-examine an incurable patient receiving narcotic drugs. At the same time, on the prescription for an opioid analgesic, taking into account Russian legislation, you can specify a more extended period when a scheme for the patient is selected. We have certain loopholes for the term to be not 15 days but a month, for example. We simplified the issuance of a prescription for narcotic drugs, which are prescribed on departure; that is, we did everything so that the prescription could be issued immediately at the patient's bedside. I will clarify - practically no one in the country, except Moscow, uses this norm.

Nyuta Federmesser: Yaroslavl region partly benefits. Overall, those organisations are associated with the NGO "Vera".

Anastasia Zhdanova: They cancelled the requirement for commission destruction of used ampoules in hospitals; now they can be utilized. In the usual manner, they increased the reserve of narcotic drugs that can be stored in procedure rooms. Before, it was only a daily supply, but now you can store it for three days. They cancelled the attachment of patients and clinics to pharmacies. Previously, you could only buy drugs on prescription in the pharmacy near the clinic that issued the prescription. Now, you can come to any pharmacy with a prescription.

Nyuta Federmesser: This is a very important change absolutely for everyone. The attachment to pharmacies exists, and people from less densely populated areas must travel to big cities for a drug. And this one should be changed first.

Anastasia Zhdanova: Another problem is the fear of persecution and punishment. We have worked on this reason both in the field of legislation and public space through the media on the example of specific cases. In terms of criminal prosecution, according to the criminal code, a medical worker was brought to justice even if the crime was committed by negligence, regardless of the size of the lost narcotic medicinal drug. That is, for one ampoule, you could be brought to criminal responsibility. For example, there was such a case when a medical worker - a paramedic - helped a sick person to sit in an ambulance and left his work case on the sidewalk, in which there was one ampoule of morphine. On this basis, he brought to criminal responsibility.

The long struggle with the Ministry of Internal Affairs, which was categorically against simplifying the order of circulation of narcotic drugs and the mitigation of responsibility for violation. Eventually, after repeated appeals to the President, a decision was finally made that medical workers would be exempted from responsibility if the breach happened by negligence (as in the case of the paramedic who forgot the suitcase) and if there was no significant damage to the interests protected by law, i.e., no harm was done to the health of other people.

Nyuta Federmesser: Anastasia speaks in a complex legal language; the main thing is that if you did not have malicious intent, there is no sin behind you. The scary word "decriminalization" is just related to this.

Anastasia Zhdanova: How it used to happen when a doctor carried an ampoule of morphine in the pocket of his coat, lost it during a home visit to the patient and was brought to criminal responsibility will no longer happen. For such cases, they no longer attract criminal responsibility, and after changes were made to the legislation, cases related to such cases did not occur. Along with the work on changes to the legislation, we paid attention to law enforcement practice.

Nyuta Federmesser: At the same time, we worked with the population and the media. After all, the state is rigid - no state will want to change any legislation if it does not drip on the brain. We were fortunate to do this when Russia was a more accessible country. All countries of the post-Soviet space, except Belarus, can afford to exercise interaction with the media. It is important to remember that no one will change anything if you do not create unbearable pressure. And pressure is possible through high-profile cases - you take a small case, an unknown granny in Krasnoyarsk or the case of gynaecologist Oleg Baskakov. Nastya visited him in the Novye Lyaly village, 600 kilometres from Yekaterinburg. It is necessary to look for such rare cases to develop them to the level of state media. It is important to show how unfair this situation is and that we can be in the place of Oleg Baskakov or Alevtina Khoryak. And here is a local story about a fine of 200,000 rubles with such large-scale attention going on the First TV channel.

Anastasia Zhdanova: I want to talk about the children's hospice "House with a Lighthouse", which was fined 200,000 rubles. They were fined for a deed – Oleg Baskakov violated the rules for the circulation of narcotic drugs, and "House with a Lighthouse" also violated the rules for the circulation of narcotic drugs. Oleg Baskakov took a sibazon ampoule from his locker and made an injection. His deceased mother left behind the ampoule. He used it to help a patient calm down and was brought to criminal liability with a punishment that provided for deprivation of liberty. "House with a Lighthouse" also violated the rules. The logs for the circulation of narcotic drugs were not stored in a safe, and the most recent operations were not recorded in them. The fine had to be paid out of charitable sources, that is, at the expense of donors, which doesn't seem fair at all. The situation had an enormous resonance, resulting in powerful pressure on the authorities, which was even more potent than the injustice of the punishment for the hospice.
Link to TV report about the problem of pain relief in children's palliative care
Nyuta Federmesser: Anastasia and I watched this segment with you and were horrified by our manipulation. It's clear that for such a segment to come out, we did much work with the journalists: we helped with the text, and we worked with the girl's mother so she would appear in the segment. All of this is such an intentional, mean manipulation. Of course, we sent this segment to all known officials.

Anastasia Zhdanova: in my opinion, the video has a multi-effect. It is not only aimed at changing the rules for the circulation of narcotic drugs - events that took place in 2021 and all the changes in legislation in terms of simplification that were possible have already occurred - it attracts attention to the problem and changes law enforcement practice. The court has cancelled the punishment for "House with a Lighthouse", but not because there was no violation. For the first time, the state recognized that the size of the fine does not correspond to the public danger and severity of the offence.

Such videos help to attract attention to the problem across the country. In the video about "House with a Beacon", we touched not only Moscow, where the situation with children's analgesia is radically different for the better, but also Saint Petersburg and other regions of the country. An important outcome was the creation of a precedent with the cancellation of the fine. Although our country does not have precedent law, courts are nevertheless oriented on practice and such cases when making decisions. I want to note that there have been no new high-profile cases on the topic after this case.

Thanks to the Moscow Endocrine Plant, which is a monopolist in Russia for the production of opioid analgesics, the number of drugs available in various forms and dosages has increased. Forty-two medications are included in the list of essential medicines, which patients can receive for free, including when providing palliative medical care.

Thanks to the national project, which we talked about earlier, it was possible to convince the federal government further to allocate almost 46 million dollars annually to support the regions, to purchase medicinal drugs narcotic drugs, to create an infrastructure for the provision of palliative medical care: purchase of oxygen concentrators and ventilators for equipping palliative medical care departments and using them at home. Since we are monitoring what is happening in the subjects of the Russian Federation, the most challenging problem I must name is the need for more knowledge and training of medical workers. Now, with the presence of 17 names of opioid analgesics in 52 different forms and dosages in the procedural offices of regional hospitals, at best, there will be no more than four options.

Nyuta Federmesser: it is important to remember that none of this was there just a few years ago. It was our interaction with the authorities, understanding their interest in the development of their drug production, that allowed all this to appear. Then, there was work on changing the legislation, and only then did we learn doctors' knowledge. Today, there are no barriers in the country for a person to be relieved of pain at the end of life and in any situation. There are no legislative or financial barriers - only the doctor's head. This is the only barrier.

Anastasia Zhdanova: at the moment, financial support is allocated from the federal budget; however, as part of the monitoring, we are accompanied by experienced Moscow doctors of the Palliative Care Centre. Their tasks include studying medical documentation and conducting consiliums right in the wards at the bedside of the patient together with local specialists. They note that often available drugs are not used. In addition, there are organizational restrictions within which only one doctor in the area is endowed with the right to prescribe and issue opioid analgesics. However, by law, this right is available to any doctor.

Nyuta Federmesser: Palliative care will only be achieved when pain relief is available, the infrastructure is in place, and there are trained doctors, but this triangle doesn't move without political will. To create it, we needed the video that you saw first. Political will, of course, can arise on its own if a tragedy happens in the decision-maker's family and he becomes a witness to the difficulties. We would like this not to happen to anyone and for processes to develop as a result of interaction. My main ally is Mikhail Abyzov, who, unfortunately, in our current situation, has been in prison for many years. He taught me to interact like this, to look at an official through his eyes, to understand what he needs and not be afraid. Once in England, they told me, "If you want to approve palliative care, don't be afraid to dance with the devil". You will get there if you know what you need and have a clear trajectory in your head. We worked a lot with Mikhail, and I constantly learned from him.

What we have achieved in the end is primarily the result of his teaching. It would help if you studied GR technologies - how to influence authorities directly and indirectly. The cases that Anastasia spoke about simultaneously led to the improvement and appearance of the President's orders, increased public awareness and changed its attitude toward the problem. If you draw attention to the issue through PR and GR, you demand quality societal help. Direct influence is to be bold and make contact regardless of the official's position, to go on air on the main channels to speak in legislative bodies of power, and so on.

You probably know many people accuse me of collaboration, but you understand why you should engage in specific interactions. It would help if you made the maximum effort to communicate with people whose decisions depend on different things. It is essential not to stop communicating with them when you have achieved something. If something turns out well, or something finally moves or changes, it does not mean you no longer need the person. Help in grief is still remembered - this is also a rule for us. Continue to be grateful to them, write to them, send them photos, and tell them about your successes. We often become a source of endless stress for officials - we write about what is terrible and what does not work, and we do not write about what is good and what works. The rule works great in any relationship - for four "yes" and one "no". Write about the good, invite them to events, and give them the right to tell them that your achievements are their achievements, too. And speculate, forgive the word, but it is true, the patient, as was in the plot, which we saw.

So, there is already a national priority project for palliative care, legislation has changed, a definition has appeared, own types of painkillers have begun to be produced, legislation on the turnover of drugs has been adapted, a prescription for painkillers has been in effect for a long time, and it can be prescribed at the patient's bedside, but there are still problems. There are many of them, and, in addition to untrained personnel, these are, for example, drugs necessary for patients but have yet to be registered in Russia. From the point of view of Russian legislation, they are illegal, and people who had such drugs in Russia could go behind bars. For example, Frisium is necessary in palliative care for children with multiple epileptic seizures. It is important to remember that for the country's transition from stage 3a to stage 4b, a public request is necessary - people should understand what is expected and what goes beyond. We had to carry out this complex work swiftly in two days to make our supporters, parents of children in such a situation, officials who were to work with assignments, if we achieved them, and doctors who also face this problem. We turned the information event - the arrest of the mother - into GR, even into a political campaign and allowed some politicians to call this story of changes their victory - for example, Olga Yurievna Batalina or Mikhail Fonarev (general director of the Moscow Endocrine Plant).

Anastasia Zhdanova: WHO and the International Narcotics Control Board identify the availability of narcotic and psychotropic medicines for palliative care as a problem area. This story is even more striking than the one about the "House with a Lighthouse". The mother of a sick child was selling the psychotropic drug Frisium, as she thought, to another mother of a child with similar health problems. The purchase was made by operatives who somehow got into the closed chats of mothers. We managed not only to free the mother from criminal responsibility but also to achieve the beginning of the process of simplifying the import of such drugs into Russia. An organ of state power at the level of the Ministry of Health appeared in Russia, which is responsible for providing each child with similar problems. A few years later, Russia organized its production of such drugs, and the problem practically "disappeared" now.

Nyuta Federmesser: Let's watch another video - it's also a powerful manipulation that worked amazingly. When this mother was arrested, we wrote a request to the Ministry of Health. The minister said that there are only seven children in the country who need this drug. We decided to reach out to all mothers who have children in need of the drug. They all agreed to record a few seconds of video, counting the children in need in sequence. We also did a huge amount of work overnight, filmed, edited, and distributed to many bloggers and in the morning, everyone started spinning it simultaneously. The video gained a huge number of views, and the government had to respond quickly. But once again, I say - it was a different state, even before February 24.

The main point I wanted to convey is that people always make decisions. Not departments, not companies, not government, not the ministry, but some people. To convince people, you need to talk to them. In the beginning was the word. We were taught to treat others as we would like to be treated. It is very important to turn this formula over and treat others as they would like to be treated - in their language: with officials in their language and doctors - in theirs. If you want to achieve this result, then you must understand why you need all this. If you know why you need this, then people will follow you. After all, this "why?" - it is common for all. If you show a video with mothers and children, then everyone understands that the situation that has arisen is madness, and you are working to prevent this. Any person wants to become a participant in such changes, to change the law, to rewrite the text, to engage in some complex procedures that will line up with a multitude of others - it is hard work, but to be a participant in such positive changes is a great motivation for everyone. I want you to understand that all your stakeholders participate in your changes. Make them participants in the changes, make them your friends and become their friends.
Photos from Moscow Hospices, media base "Vera" foundation
While you need to get to level 3 and lack legislation, you can still work with foundations and volunteers. As stated in the English slogan – we cannot add days to life, but we can add life to each day. In these pictures, you can see a woman with a fentanyl patch on her hand; she's on morphine; a woman in the middle who ordered a photo shoot in the style of Coco Chanel – she's also on opioid analgesics; a child in a swimming pool with a tracheostomy. We can certainly add life to each day. You can see volunteers in the garden, musicians, dogs, and bakers. A volunteer girl came up with the activity "Trolley of Joy", a trolley that goes around hospital wards and delivers what is usually absent from hospital menus.

Endless walks with volunteers, New Year's, which can be celebrated in the summer if you understand that the child will not live until it. In these photos are car volunteers with cars, specialist volunteers who help at events, and fundraiser volunteers. The company "Beeline" began to impose fines on employees for being late, and to ensure they continued to be late, said that all these fines would go to the "Vera" Foundation. I hope you've all heard about the "Children Instead of Flowers" campaign, which has already brought in more than 76 million rubles this year. Many countries, not just regions, are participating in this campaign.

The main takeaway is that if you want to achieve results and live a happy life, tie it to a goal, not people or things. This is Albert Einstein.

The appendices to the presentation are always helpful to everyone. They contain systematized answers to questions that doctors and officials endlessly ask us. What is the difference between the principles of palliative care and the means of palliative care, hospice and palliative care? Which patients do we help or do we not help? Do we help patients in remission? Do we help disabled people whose lives are not threatened? Do we help older people? Is this only help for the dying? No, not only for the dying. Is this just pain relief? No, not just pain relief. Is it separate from specialized curative medicine or not? All these questions have simple answers. This is a critical appendix. Thank you very much!

Questions and Answers:

Question: How is the available amount of opioids calculated about the need for analgesia? It's about the amount purchased by medical institutions.

Nyuta Federmesser: This depends on the system. In the Russian Federation, there is domestic production. It operates depending on the requests from the regions. All regions send a request specifying the necessary quantity for the following year. This quantity is produced, and the federal government allocates money to the area for purchase. The region is supposed to buy and use it. And here lies the problem. Based on the calculations, the region orders as much as necessary - the average established daily dose (SUST), which is the same worldwide, is recalculated, considering the population.

In response to your question, what does the available amount mean? This means that in each country, the International Narcotics Control Board, based on SUST, has calculated how many medical opioid analgesics are available per population and determined whether this is sufficient or not.

Anastasia Zhdanova: Each country that signed the Drug Control Convention must send the volume of drugs released into circulation to the International Narcotics Control Board annually. At the end of each year, we send this information to the Ministry of Industry and Trade of the Russian Federation as a Palliative Care Centre, which consolidates all the data and sends it to the International Committee.

Nyuta Federmesser: It's important to understand that governments can provide fake false reporting. Someone collects information from medical organizations - how much was used, and someone from pharmacies - how much was transferred to the medical organization. In the second case, we get inaccurate information - what was transferred to the medical organization does not correspond to what was used. We need to be attentive to data sources.
You can watch the video recording in English and Russian on our YouTube channel.
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