Nyuta Federmesser reviews. Nyuta Federmesser: How not to help
A year and a half ago, the founder of the Vera charity foundation, Nyuta Federmesser, headed the Center palliative care in Moscow. She was in charge of nine Moscow hospices and a mobile service for helping terminally ill patients.
Federmesser is the daughter of Vera Millionshchikova, a doctor and one of the founders of palliative care in Russia. From the age of 17, she worked as a volunteer at the First Moscow Hospice, which now bears the name of Millionshchikova. This hospice has always been different from other similar institutions, and when Federmesser headed the entire direction of state palliative care in Moscow, she decided to remake the system and make it the same as in the First Hospice.
“Sekret” talked to Federmesser about how to make public medicine more humane, how the Vera Foundation manages to collect about 500 million rubles a year and help hospices and needy patients throughout the country, and how attitudes towards death are changing in Russia and palliative medicine.
I was going to start with a playful question, like, a year ago you wrote a post on Facebook about how much work you have and how little time you have left for your family, and recently you shared it with the caption: “A lot has changed.” So, I thought we were talking about how we managed to establish a work-life balance, this is the most pressing issue for business people. But I listened to how you spent yesterday evening and night (in the Foundation office), and what your schedule was for the coming days, and the question disappeared...
I don’t have a work-life balance, work is life, but I stopped suffering from it. Not long ago, maybe six months ago. I suddenly thought that maybe I didn’t have much time ahead of me, and I still didn’t know how to be an exemplary wife and mother. I remember when my children were small, and there was less work than now, but it was still there, the biggest torture was going with the child for a walk in the sandbox. I didn’t understand why I should sit and watch him make Easter cakes. When I went to Cambridge to study, I preferred to do laundry, ironing, washing, doing any kind of Housework as a part-time job, but not babysitting.
It seems to me that you need to somehow stop tormenting yourself with feelings of guilt and honestly admit to yourself that you are more effective where you feel good, where you get high, and then everyone becomes calm, including your family. It seems to me that my family has become comfortable since I stopped eating myself because I wasn’t enough in the family. I used to try to cram everything in the world in the short time I was at home. I was tired, but I had to cook and Parent meeting go to the theater and smile, but I didn’t have the strength for this game. Well, I gave up, now I come, lie down, they lie next to me or jump all over me, and everyone feels good. But, of course, in any force majeure situation, the family will be in the foreground, and work will inevitably take a backseat.
A year and a half ago, you became a civil servant and set yourself difficult task make government agencies more compassionate. What management challenges did you face?
You know, “management challenges” and “mercy” are different things. To make them more merciful, it seems to me, is not difficult at all. This does not lie in the plane of management decisions, it lies in the plane of strategic decisions. How do you see the result? What kind of company or fund do you want to be? palliative center. There are very cool people-oriented companies. I remember well how a few years ago I came to the office of the Otkrytie Corporation, and I was amazed at what a staff buffet there was and what kind of toilets there were. This is not a management decision of the manager, it is a strategic one: employees work better if human conditions are created for them.
In this sense, everything was clear to me, I had a clear picture of what and how to do. It wasn’t difficult for me to convey to people why I was asking them to work differently, but it was difficult for them to adapt. They are not used to living in a situation where doors are open 24/7, they are not used to the fact that other people are constantly taking part in their work, not doctors, but coordinators, volunteers, animators, event managers - all those who provide non-medical care to palliative patients , those who create a feeling of life.
I remember there was such a situation: we hung up a notice at the entrance: “Dear relatives and loved ones of our patients, we allow visits around the clock, you can come with children of any age, we don’t have paid services, our employees receive decent salaries, and we ask you not to offend them with financial gratitude.” At first, these advertisements were torn down every day. I hang them up and they tear them down, I hang them up again and they tear them down again. At a morning conference with my employees, I say: “Guys, there’s a lot of paper. Honestly, I’ll redirect you.” At some stage, “we have decent salaries” was crossed out, and on top was written: “Nonsense.” Then, for the first time, I thoroughly immersed myself in the financial part and realized that indeed not everyone’s salaries are decent. Now the situation has changed a lot.
One day I arrived at about 11 pm in the center on the street. Dvintsev, I look - Entrance door covered with dirty rough wood. I said to the security guard: “Do you know that we have 24-hour visits?” "Certainly!" “Why was the door blocked?” “And our back door is open, where the corpses are taken out.” I didn’t even imagine that I could throw boards over long distances so well.
Complex changes at the level of mentality, acquisition of new knowledge. We needed to change the pain management system, and this cannot be solved by filling safes with morphine. And this cannot be resolved by talking with the doctor: “Everyone here is in pain, but tomorrow you need to make sure that everyone doesn’t feel pain.” They must learn to identify pain, measure pain, know which drug is appropriate for whom. Work on this went on for a year. We had a chief physician, Oleg Viktorovich Zhilin, who had his key task for the year - to teach the staff how to properly anesthetize patients, not to be afraid, and he completed it in six months. The use of morphine in our network has increased approximately 100 times. People stopped suffering. Imagine what it was like before.
- What was the problem? Did you save painkillers?
They just didn't want to bother. It was easier to give mountains of simple painkillers than to prescribe morphine once. There were catastrophic things that I don’t even want to talk about. Someone is tied up, not washed, smells bad, this doesn’t even need to be voiced, because it has no right to exist.
-Have you fired many people?
A lot of people were laid off and, unfortunately, there will be more layoffs. It's unavoidable. But you can’t immediately fire everyone who can’t cope, even if you want to. The management team, of course, left almost entirely immediately. There was no scandal, they just assumed that I would come with my team. And my problem was that I didn’t bring a team - I couldn’t weaken the Vera Foundation, although I still want to pull 10-15 people out of there.
- Does it work independently of you?
I am the founder and member of the board, but it works completely autonomously. If we talk about any merits and successes, this is merit: you did something, left, and it works itself. It's a thrill.
- Don’t you have a desire to redo everything when you get there?
No. I am constantly accused of micromanaging and meddling in everything, but the Vera Foundation proves that this is not the case. There are fundamental things that director Yulia Matveeva and I discussed, and that’s all. Of course, I am pleased when they consult with me (and they consult with me less and less), but the team there is very congenial to me, we think alike, we have a common head and heart, and they cope well without me.
In general, a properly selected team is the most important thing, and this partly compensates for the lack of managerial experience and education. I learned everything from my mistakes, because I am very stubborn, and only now am I starting to do what I was advised smart people three years ago, five years ago, ten years ago.
- What are these, for example?
Several years ago, Dima Yampolsky, chairman of the board of the Vera Foundation, advised me to write a strategic plan for the year, five, ten years ahead. I thought: my God, what kind of person? I don't have enough diapers here, what's the plan? However, I wrote and forgot about it. And when I left the foundation, we found these papers, read them and laughed: absolutely everything came true. Now I can’t work at all without a plan for a year, three, five and ten. Not in any direction.
They also told me: you need an assistant, you need meetings to go like this, you need your day to be structured like this, otherwise you will fall apart. And all this advice was absolutely correct, because people with managerial experience saw dynamics that I, being inside, could not appreciate.
Photo: © Anatoly Zhdanov / Kommersant
- So, what about complex management decisions?
A difficult management decision for me is to deprive a person of a bonus. It seems to me that people do amazing work, some better, some worse, but in any case it costs more than people earn in the foundation, and in hospices, and in the palliative care center. And deducting 10,000 from a doctor or 5,000 from a sister is difficult. Because a nurse’s salary of 60,000 minus 5,000 is significant. And 100,000 doctor’s salary minus 10,000 is a lot. I can only tell them at morning conferences or on rounds what mistakes were made, and I try to tell everyone without singling out a specific person.
At the same time, it is no longer difficult for me to fire a person. I understand: there is a task, there are functions that an employee must perform. If you don't comply, I'm sorry. Dismissal is not about people, but about the fact that the business is suffering. When the Vera Foundation was small, I perceived the departure of each person as a tragedy, it seemed to me that everything was collapsing. Not now. Everyone who is in their place will remain.
When I came to the Palliative Care Center, I learned a lot very quickly various information, including an unofficial price list: who took what and how much. They wrote to me on Facebook: we were in such and such a department, there was such and such. Of course, it helps to break up with people. Palliative care, assistance to the dying and their families in a state institution cannot be paid for.
Of course, I am taken aback by understanding how the consciousness of a person who has worked for years in a government structure works. This is a very careless attitude towards the matter. I don’t understand how, with a salary of more than 80,000 rubles, you can systematically leave at 5 pm, leaving your work unfinished. I’m not talking about doctors, they have an understanding that first of all the work must be done, and they constantly work overtime, and they are very pleased to say “thank you” and write out bonuses for this.
But when I see a trickle of people at 5 o’clock in the evening, which, as if from a factory, flows towards the metro, and I understand the amount of unfinished work, I just want to lock the gates. But I can’t fire everyone at once - good people Key areas cannot be selected quickly.
- Who are the key ones, besides the head physician?
All deputies, financially and financially responsible positions: catering department, laundry, caretaker, accountants and so on. These should be people who understand and share your values, who do not need to explain why we will take and wash their clothes from patients and not send them home to relatives. The relatives are already exhausted, and they will be pleased to see, when they come again, that mom has her tracksuit and her nightie in a pile. And my task is also to make my relatives happy.
I need a person at the catering unit who will be sympathetic to the fact that Marya Petrovna suddenly wants herring, which is not on the menu of the medical institution. The nutritionist and nutritionist should create such a menu, and the head of the catering department should organize the procurement and preparation of food so that the kitchen can make cheesecake for someone, pancakes for someone, porridge for someone, and that for someone. It is not simple.
When the structure has 11 buildings throughout Moscow, of which at least 4 need major renovation, and the rest - in cosmetics, and all this is money, trades and other hell, the task is to find a person in any direction who will be many times smarter and more competent than you. This is generally the main thing - not to be afraid to hire those who are smarter.
- Regarding the question that mercy is easy to teach, you told how the staff did not want to wash the grandmother who had passed away, and then you yourself washed her, combed her hair, changed her clothes, and felt how people thawed out. What happened to them, why did they even have to be taught this?
This is not entirely true, teaching mercy is not easy, it’s just that mercy and empathy to a certain extent are professional skills.
- That is, you need a style guide on how to be a responsive medical worker?
Do you remember how McDonald's came to Russia with the slogan “Smile for free”? For Russian reality, a person behind the counter smiling and saying “Thank you” was wild and strange. But there was such an internal order in the company, and everyone smiled. And this was followed by a lot of changes in stores, in restaurants, in the service sector, and finally the wave reached housing offices. Now I come to the MFC, they offer me coffee there - so I’m still waiting for a catch.
- Me too.
But no, these are the employer's requirements. In palliative medicine there are standards, there are skills: here you need to be silent, here you need to help with a smile, here you need to take your time, and so on. These are rules that can be written down. Of course, it is impossible to force a person to sympathize with all your heart, but people who do not know how to do this will leave on their own. People who don’t feel that this is their calling simply won’t work with a bad-smelling diaper, a crying relative, vomit, or death. They will be horrified and run away in a few days.
We have a girl in this hospice, she is from a village near Moscow. She was silent, and when she opened her mouth, she spoke rudely, and I doubted whether she was needed here, although she worked perfectly. Time has passed, now she is one of our best employees, because the environment makes a person. It’s just that no one ever taught her to be friendly and responsive, and we didn’t have the right to immediately demand this from her. And she has a very big heart, and intuitively she feels perfectly when to joke with a patient, when to just sit silently, and when to transfer the patient to another nurse.
There is nothing new in palliatives, it is simply a human attitude, it is a culture of attitude towards old age, weakness, death, the dependence of one person on another, in accordance with Christian morality. 80 years of Soviet power, which renounced this morality, did not erase it without a trace. Sometimes you come to a family and are amazed at how organic and correct everything is. In such families, the question does not arise: is it good that a person leaves at home? Do you need pain relief? Maybe it’s better to be patient? Of course, okay, of course close person should not endure pain.
I remember one call: a woman’s husband was leaving in the hospital, and she wanted to take him home, but all her friends dissuaded her: “You can’t handle it yourself, the children don’t need to see this.” She cried, asked what to do, I said: “Of course you can handle it, we will help.” Her husband lived at her house for only four days, all these days we were in touch, she called and asked: “His breathing pattern has changed like this, is it time for me to call the children from school?” “Yes, call me.” She just needed a visiting nurse and someone to tell her that she was doing everything right. And she was surrounded by completely normal people, but imbued with the fear of death, with different stereotypes.
Death is a natural thing, it is not so scary when it comes naturally. And when you hide it, try not to notice it and not show it to anyone - that’s when it becomes scary, like everything we didn’t have time to prepare for.
- Is the attitude towards death in society changing?
Not enough yet, but it will inevitably change. The demographic situation is such that there will be more and more elderly and long-term ill people, and we will inevitably work for the elderly. Someone will say: unfortunately, but I think - fortunately. There is nothing more natural and pleasant than repaying debts to parents. It's a beautiful vicious circle. Our parents fuss with us until we are 16-17 years old, and then worry about us endlessly. And we get to tinker with them for several days, for others - several months or several years, but still less than they tinkered with us.
It’s bad when palliative care begins to be measured by beds and open hospices. With a growing aging population, we can fill the entire country with hospices, but we will not satisfy the need. It can only be satisfied when the person is at home, and when the family accepts that here a baby is growing up, and here an old man is dying. In Muslim countries and the Caucasus, such large infusions into inpatient hospices are not needed, because this is exactly the order there. This attitude towards old age and the transition to another life cannot be returned quickly. But you shouldn’t be afraid to start working on this, even for years, with the help of the media, movies, books.
If society is not treated, any state, even the richest, will simply go bankrupt helping the elderly. We need to get to this point little by little. For starters, open the doors to hospitals, let children of any age in and at any time. Children should see their grandmother helpless, they should see how their mother takes care of her. They should know that their sick grandmother loves them no less than when she was healthy. And they, the patient, make her even more happy.
A boy with a button accordion recently came to our Palliative Care Center to show his grandmother how he learned to play. It was amazing. And he will remember this for the rest of his life and then tell it to his children, and she will remember this hour with pride for the rest of her life, and they will have a family legend.
And what kind of legend will remain if the child is not even given the opportunity to show love and care? Grandma got sick, went to the hospital, and that was it.
- The state’s attitude towards you is also changing, how did you manage to achieve this?
Let's face the truth: any official, unless he is the last scum, and there are still very few of them, wants to be effective. He wants to do good...
- As a rule, he does not want to decide anything about it
Great, we'll decide everything ourselves. Palliative care, taking into account all superstitions and fears, is an excellent field to clear karma. Just give him this opportunity: show that the law does not prohibit relatives from visiting the intensive care unit, explain that high-quality pain relief is cheaper and more effective than multiple calls to the ambulance, and if healthy flora is allowed into the department along with healthy relatives, this will help eliminate hospital-acquired infections. And if you let volunteers turn patients over more often, then the shortage of personnel will not be so acute, and there will be fewer bedsores. It’s just that you need to be able to communicate correctly with officials and explain to them correctly what the benefits and advantages are.
Education is the basis of progress, in order for attitudes to change, we must constantly talk, discuss, and create consumer demand for quality care at the end of life. For most people who leave in our country, last weeks and the days before death are hell. Although we have a picture of the “correct” dying. If you ask a person how he would like to die, only a young man will say without obligation: suddenly, hit by a car - that’s all.
No, most of us have families, unfinished business, important conversations, everyone needs to ask someone for forgiveness. Most likely, people will say: “At home in your bed, so that your loved ones are nearby, so that it doesn’t hurt.” We remember examples of decent care from films and literature. In the film "Jane Eyre" Jane comes to her dying aunt, who was a terrible scum, but this aunt is lying in a clean bed, all the children are around her, she is wearing a cap, and she asks Jane for forgiveness. IN real life Today, alas, such examples are rare. Today, the discrepancy between expectations and how dying actually happens is terrifying.
- Well, yes, but officials usually want to show results right away and don’t like to invest in the future
Palliative medicine in this sense is just a rewarding field, some results, according to at least a geometric increase in the number of grateful citizens is immediately noticeable. The development of palliative care is both cost-saving, a popular election decision taking into account the demographic situation, and the development of charity, because a certain part of civil society is beginning to take on social responsibility.
The Vera Foundation still helps even Moscow hospices. How much of the foundation’s money do you invest in them and do you think this is fair?
Look. There is money in the budget in Moscow. There is more than enough money in palliative care in Moscow to provide for everyone who needs it.
- Everyone in hospices or in the city?
I believe it's in the city. There is also enough money to pay doctors a decent salary. A decent one, as it seems to me, is when a nurse receives about 70,000, an older sister - 90,000, a doctor - more than 100,000, a department head - 120,000-130,000. And I think that we will soon reach these numbers. But with the acquisition of goods and services, things are worse. The procurement system under Federal Law No. 44 is deadly, it turns everything into red tape and leads to procurement poor quality product. And this is inevitable.
For me, as a person who came from a non-profit organization (and from the point of view of financial management there is no difference), commercial organization or NGO), it’s torture to see that there is money, but you just can’t get a result that suits you. Unfortunately, even in Moscow, money from a charitable foundation is needed in small amounts in order, for example, to purchase some consumables over High Quality than what we can buy through an auction. In the fund, we are used to saving every penny, dodging, looking for where to buy diapers, diapers, and so on cheaper and without losing quality. There is no such possibility in the budget; the one who gives the lowest price wins. In this regard, I warmly support everything related to the allocation of government subsidies to SONCO.
It is very important not to be afraid to introduce commercial elements into the budgetary sphere. In Moscow in social sphere very effectively outsourced large volume work. The junior medical staff is outsourced - these are your people, but you pay the company, and due to this you can reduce the amount of work of the senior nurse in keeping time sheets so that she works with patients, reduce people in human resources and accounting. In general, there are a lot of bonuses. And you need to study in medicine. I have a mountain of ideas. If only I had the hands and time to implement it...
The budget colossus in Moscow provides palliative care for patients like nowhere else in the country. But the federal program of state guarantees assumes the cost of a bed at 1,800 rubles per day, and this bed is financed from the budget of the subject. Most of the subjects are in deficit. This means that there is basically no money there, and any governor has a list of hundreds of tasks, in which the first lines are occupied by people who invest in GDP - adults and children, and palliative medicine is financed on a residual basis. In Moscow, the cost of a bed-day is more than 5,000, while the city budget allocates so much money to provide assistance to all those in need, but probably only a third receive assistance, since the infrastructure is not yet sufficiently developed. Therefore, the costs per patient increase, which is great.
- Is it okay that you say that? Will your funding be cut?
No, I talk about this very openly in the department. And the department itself is interested in quality calculations. Not everyone receives this help, not because there is no money, but because there are no doctors. Everyone is interested in people staying at home if they have decent living conditions and a family. Let a nurse visit the patient every day and help. This improves the quality of life for the patient, is strategically correct for the family, and is cheaper for the budget. The main thing is to remove unpleasant symptoms, provide care and always be in touch.
- How much cheaper?
It depends. For example, if a person is on a ventilator, then staying at home with regular visits from health workers is 7 times cheaper than staying in a hospital. According to our data, in Russia 1,300,000 people need palliative care, and receive about 180,000 per year.
You can compare a person who receives palliative care at the end of life and a person who does not receive it, but at the same time uses the services of medical institutions, namely: calls an ambulance, is hospitalized, and spends the last 2-3 days of his life in intensive care. The first person will cost less on the budget. On a national scale, if everyone who needs palliative care receives it, this will save the budget in the amount of 76 billion rubles per year.
But for this to happen, a system must be built, doctors must be brought in. And there is not enough demand yet, because in our country it is customary to suffer. It is customary to wait until the last minute. Don't prepare for the worst - you're inviting it. And also because people, due to ignorance or prejudice, will still call an ambulance.
- Shouldn’t the ambulance tell them that it’s time to go to the hospice?
Should not. Everyone has their own obligations. You call an ambulance not to die, but not to die.
- So when should a person learn about hospice?
From the attending physician when treatment is stopped. Or when he is still healthy. At what point do you realize that higher education need to receive? Eighth grade. When do you realize that cheating on your spouse is not a good thing? Long before you get married. Information about how life (and death) works should be received long before a person enters this life independent unit. This is not done quickly.
In general, one of the things that is hard for me to get used to is how slow everything is on a budget. You want the system to work as quickly as possible, but the number of changes that can be implemented at a time is very small. A year and a half ago, when I first arrived, I was in a hurry, but now I realized that the pace is different. For 2018, I have only 3 tasks: introduce a uniform medical history form for all branches, bring order to the financial service, and begin major renovations at the Palliative Care Center. All.
- So, after all, we are not finished with the question about the money from the Vera Foundation. What are they going for?
There are things the government should not spend money on. For example: we say that the quality of care increases when open doors and with the advent of volunteers. Volunteers don’t come out of nowhere. They need to be found, attracted, trained, supported, retained and multiplied. This is the hardest work, recruiting very special personnel. We will eventually allow one out of twenty people into these walls, while 19 must remain ours. They should learn about palliative care and charity.
We need extra hands, nurses. I want nurses to be paid by the fund, we have wonderful women in every department who do things that health workers simply don’t have time for. I want every woman in the hospice to be able to count on having her hair neatly washed and cut, her nails well-groomed, so that she can be dressed the way she likes, because her husband will actually come to see her. She wants to remain a woman for him, and not a helpless body. And if the patient is young, he needs to be able to play computer games, watch TV series, and otherwise spend his leisure time as he is used to. All this cannot be provided without money from the fund.
You see, matrix medicine, in which the patient is a cog, is good when we are out of action for a while. We ended up in the hospital, they checked us over according to the regulations, fixed us, and we moved on, returned to ordinary life. And palliative care is about last days, after this there will be no “further”. That's why the words “Life for the rest of your life” are so important. We must provide people with a decent life. For this I need caregivers, volunteers, a beauty salon, therapy dogs, and to attract them, I need a foundation.
What else does the fund provide? The Foundation publishes books, textbooks, we organize conferences and bring lecturers from all over the world and students from all over the country. And I want doctors who come to Moscow to study to live in a comfortable hotel, so that they can go to a concert, so that a buffet will be organized for them, so that they can relax and not just work. They deserve it. It is very difficult to raise money for this, but the Vera Foundation is doing a good job.
The foundation works for almost all regions of the country, and we have a lot of hospices that we help. More most of fund work - targeted assistance children. Parcels with tracheostomy tubes, bandages, diapers, wet wipes, food for these children, medicines, wheelchairs. It's a shame that this exists and a shame that it is needed. A child on a ventilator costs 100,000 rubles a month for consumables. Sometimes, in order for a family to be able to leave a sick child at home in winter, this family needs to buy firewood.
It would be good if each region had its own funds. We are currently working on a national priority project regarding the availability of palliative care, we write a project passport and hope that it will be approved by the government, and one of the performance indicators there is the appearance in each subject of SONCOs working in the field of palliative care and receiving government subsidies. If the passport is approved, this will stimulate the emergence of such funds.
- Tell us about the “Life for the rest of your life” program that you want to attract business to.
Over the course of 10 years, we have ingrained in everyone’s heads the formula “If a person cannot be cured, this does not mean that he cannot be helped.” It was once invented by Olya Ageeva. I remember very well how a few years ago I was overwhelmed by the question “Why help the dying?” Now there is no such question, and if there is one, then it is a shame to ask it. Almost the same thing has already happened with the question of pain - many already understand that pain cannot be tolerated and needs to be treated. And here is the next stage - we need to make sure that people know what to demand from the hospice. Hospice is about life to the end.
One cannot rejoice at the crowds of grateful relatives who are happy that their parent’s bed was made, dinner was brought, and after a week of suffering they were injected with morphine. This is wrong, these relatives should be furious. And they should be grateful for a completely different volume and quality of help.
Now before us new horizon- we need to explain to people what to want. We've been looking for a long time Right words for this. Finally, we found Alexander Semin, the author roller Life Line Foundation, the best, in my opinion, video about charity. This is the same Semin who had a son, Semyon Semin, with Evelina Bledans, and thanks to whom the attitude towards children with Down syndrome has completely changed. He said that the number of refusals from such children dropped by 20 percent after his and Evelina’s active work.
When you talk with Nyuta Federmesser, you count every minute - the time of the founder of the Vera Hospice Fund and the head of the Center palliative medicine too valuable to waste. So you think, Nyuta herself will never rush, interrupt or show that at this time her phone is ringing with calls, messages and letters on dozens of questions at the same time. As always, she is calm, ironic, and makes it clear right away that you shouldn’t put on a “mournful face” to talk about charity and hospices.
— The Vera Hospice Foundation spends a lot of effort to explain to society that hospice is about life, not about death. Do you think people from the outside understand this?
— No, not yet. the main problem in palliative care today there is a lack of demand for it. People generally don’t understand what it is, why it’s needed, what to do with it. After all, some people haven’t even heard these words - hospice and palliative care. When choosing a new slogan for the Vera hospice fund - “Life for the rest of your life” - we conducted research into what associations the concept of “hospice” evokes in people. It turned out that it was fear, death, pain, loneliness. That’s why people don’t want to understand, they’re afraid. And they try as much as possible to drive away from themselves the thought of seeking help from a hospice, even if someone at home is seriously ill. That is why we decided that we would definitely take this slogan. And the main task is to change such an associative series over the next three years. Our favorite phrase, with which the Vera Foundation has lived for more than ten years - “If a person cannot be cured, this does not mean that he cannot be helped” - clearly and somehow very correctly entered the consciousness of people and determined the place of hospice in the healthcare system : This is a home for those who cannot be cured, but who can be helped. And this phrase stuck in people’s heads. Unfortunately, this was not the work of the Ministry of Health, not of doctors, but only of the Vera Foundation. By the way, this is quite funny, but at the very beginning, about 10 years ago, when these posters had just appeared in the Moscow metro, people started calling us and asking: “Please tell me, is this a fund to fight drug addiction?” ( laughs). Nowadays no one asks such questions anymore.
— What have you done or are you going to do so that instead of questions, understanding appears?
— We were able to formulate that one of key issues- lack of demand for quality of life at the end of life. People just don't understand what hospice is. How can you want to eat an oyster if you don't even know that the oyster is edible? Exactly the same here. We decided that we had two main information tasks. The first is to change this associative series, because hospice is really about life and about love. The second is to create demand for palliative care, to inform people that the last days of life can be spent with dignity. The last days of life and dying, by the way, are two completely different concepts. You know, if a person’s death happened quickly—he was hit by a car, for example—people remember his last days: “Wow, really, how he felt, he said goodbye before his death.” Or, I had a friend who died and crashed in a car. I remember very well that his mother said at the funeral: “So I came home, and there the sink was dismantled, he started to fix it and didn’t fix it. And the coffee is left unfinished.” She's had this in her head all her life - the unfinished sink, the half-drunk coffee and the life her son didn't live.
It became obvious that we needed to explain all this to people in a completely different way. Now, if we form an understanding of what palliative care and hospice are, people will begin to demand exactly this. When we go to the dental office, we know that they will give us preventive pain relief. That is, first we will receive an injection, and then we will be treated for what is causing us pain. Before this it was different. They started drilling on us, and we said: “Oh, what are you doing! What a nightmare!" And the doctor answered: “What, inject? Well, come on, coward, let’s inject!” And even earlier such issues were not discussed at all. Going to the dentist was painful. The tooth was removed without anesthesia, you clung to the armrests or to your mother, if your mother was allowed in and she was nearby. Today you know that you don’t have to be afraid of the dentist, because the treatment area will be numbed and this will ensure comfort. It's the same with palliative care. In fact, everything in the dying process is quite predictable if a person dies from a progressive chronic disease. Experienced doctors working in this field will tell and explain to relatives and the patient what will happen and how. They can calm and relieve not only pain, but also fear of the unknown. There are a lot of things that can be discussed and talked about in order to relieve anxiety. This is work to anticipate severe symptoms that plunge loved ones into a state of horror and hell if death occurs without our accompaniment. And if I go a little further, I’ll tell you that palliative care and obstetrics are about the same thing. We say: “Well, before, they gave birth under a bush, cut the umbilical cord with a sickle, and nothing was wrong.” When doctors try to reduce infant and maternal mortality, they are proactive. A doctor in obstetrics at the beginning of life and a doctor in palliative care at the end of life is a doctor who accompanies the processes. There is no goal here to cure, because being born and dying is not a disease. This is a normal process. There is a task - to accompany two very difficult moments: to prevent difficulties, the most difficult components that may appear, and to work through them in advance. And, secondly, we need to convey to people, instill in their heads the understanding that palliative care is our right to dignity, to have your last days passed without pain, dirt and humiliation.
Georgy Kardava
— You often compare a hospice to a home...
— The hospice is home, the last home. And a place of love. Here too, in fact, everything is quite simple. If the truth is spoken between us, if we stopped lying to each other and said the most important thing: “I’m dying, you know it, I know it,” then we begin to appreciate the remaining time. And then we become wise enough to let the rubbish and husk go aside. And people really live. Hospice patients enjoy any weather; for them there is no bad weather, because any weather is beautiful. They are happy to have guests. Or, on the contrary, they can easily say: “Don’t let this one come to me anymore.” They have little time left, they will no longer tolerate anything out of politeness. They rejoice at some favorite food, a ray of sunshine, and even the clouds. For me amazing story There were elections in the hospice and in the palliative care center, because for the first time I saw people truly consciously voting. One man said that he had never voted in his life, even during the Soviet Union he ignored it all, but now he will vote because he will not have another chance. There was a woman who literally died two or three minutes after she voted for Putin, after stroking his photograph on the poster. And so tenderly she said: “Mine, mine.” And it was absolutely incredible, her son and I stood and laughed at the touchingness of the picture and such a naive expression of feelings - very open, which people don’t do when voting. They usually check the box with stern faces. And after that I told her: “Oh, listen, I’ve run out of “I chose the president of the country” badges, now I’ll run and bring them to you.” I run away, come back three minutes later and understand: my son is sitting next to her and doesn’t see her yet, but I already see her and say: “Mom is gone.” And this is some kind of fantastic life for the rest of your life, because the last thing you did in life was to choose a president. Funny and touching.
— It is probably unexpected for many to see this “Life for the rest of your life” in a hospice?
— When we are going to a hospital or hospice, we put on a mournful face in advance, just after getting out of the subway or from the car, and prepare to suffer and sympathize. But in fact, patients do not want to spend the remaining time receiving this sympathy. They will note your new shoes, they will say - nice earrings, good hairstyle. They will tell you what a thousand people outside the hospice will not tell you. They notice and say exactly what we so want to hear and never hear, because, counting on a lot of time ahead and its infinity, we do not tell each other the main thing. We allow ourselves to quarrel and slam the door. “I hate you, let’s get a divorce,” that’s all. And there is only “I love you.” “I’m sorry, I love you, I forgive you, you’re the best.” This is always the case when we break up. When my child and I have a fight, and then we see him off to school, we still hug him: “Darling crocodile, come and kiss him.” You go on vacation, get on a plane, try to keep things in order, call your parents. But here people break up forever, and they know it. Even if it was not said, they looked at each other and said everything in silence. This is the concentration of life and the concentration of love. This is very noticeable when you come to the hospice. There is a completely different flow of time, some kind of hole between worlds. Everything is slower, calmer. In the first Moscow hospice, which is in the center of Moscow, crocuses bloom when there is still snow everywhere. There are some amazing cherries that grow nowhere else in this part of our country.
Georgy Kardava
— Do visitors stop being afraid when they find themselves in a hospice?
— Let's get on specific example. Sergei Sobyanin recently came to visit us. And it was clear that he was afraid of the hospice, just like any other person who had never been there. He came nervous and the first thing he did was remark to the photographer and the security guard: “What is this, here is a medical facility, here are heavy people, why are you walking around in front of me taking pictures, and you are saying something into your earpiece. Let's get it out of here!" I say: “Sergei Semenovich, here is the hospice, let me show you everything.” And I see how he begins to look around, and he, like every relative, every volunteer who comes for the first time, has a stupor. No tiled walls, no bad smell, no sobbing relatives in black. The dog is running. He is amazed, and I say: “This is a volunteer dog. Not for your arrival, don’t think so, we just have volunteer dogs.” He immediately reacts: “I also have a dog.” Then I say: “Today people are signing their names at the hospice, we can go into the ward to congratulate the newlyweds.” And we come to the ward, where it is immediately clear who the patient is. Pale, green Tolya lies on the bed, and Olya fusses around. And he so carefully and carefully begins to talk to the groom, and in this careful conversation Tolya utters the phrase: “And between Olya and I, we have seven children.” Sergei Semenovich’s face changes and says: “This is what you’re giving!”, and then immediately extends his hand to him like a man. And I understand: that’s it, the ice has broken, the fear has gone, it doesn’t matter to the mayor that there’s a dying man in front of him. They had a manly conversation. Really, do you understand? This is the place of truth where it comes out in a second. The falsehood goes away, the pretense goes away, so hospice is about love. But until we make this public, the myths will remain. We need to open doors, we need to invite volunteers, we need to destroy these stupid stereotypes.
— You destroy stereotypes, including with the help of Facebook, where you have a huge audience. How do you find time for this?
— It has become almost impossible to devote time to this, which is why I feel remorse and suffer a lot. I have a wild amount of unwritten posts in my head and important texts. In general, I am structured in such a way that in order to understand something, I need to write. At the very least, say it, say it out loud - I am, after all, a philologist by training. This applies to every component of my work. And if I have written a text, I make sure to read it out loud and pronounce it to understand whether my words and accents are placed correctly. And I actually physically suffer because I don’t have time. We need to tell more, take more photographs. I need photos of life in a hospice and palliative care center. I need photographs of volunteers, reportage photographs of what is happening, and some at least minimal comments on these frames. After all, the goal is precisely to remove barriers and inform. In general, I am very conscious about this and monitor my subscribers and their reactions. As a result, I live with my phone in the shower, in the toilet, and on vacation. I tell my eldest son: “Listen, it’s impossible to sit at the table with you, I see you with your phone all the time, finally put it down.” He replies: “What about you?” After all, I’m sitting in exactly the same way, only I don’t have the phone in front of my nose, but it’s on the table. And I see that at some meetings everyone listens and takes notes like decent people, while I sit and practice my finger motor skills.
Hospice patients notice and say what we want to hear and never hear. Because, counting on a lot of time ahead and its infinity, we do not tell each other the main thing
— When it comes to trends in philanthropy, what changes are currently taking place?
— It seems to me that there are fewer charity events, especially in Moscow. Maybe in other cities and regions this is still growing, but here it is already fading away, because Moscow is a city that lives at a wild pace, which gets bored with everything very quickly and quickly gets tired of everything. Try inviting people to a charity auction now. “Ugh, we’ve already been to these 20 times.” “So what if Urgant will lead, all this has already happened anyway.” We need to come up with new and new ways all the time. And now, thank God, we can finally say that charity is becoming not a fashion, but a norm. And the fact that people began to sign up for recurring payments (monthly regular payments. - Note "RBC Style"), just means that fashion has given way to consciousness. Fashionable is when you bought a certain non-random bag and walk around with it so that everyone can see, pay attention, and discuss. Recurring payments are already the norm, and this is absolute happiness. Charity is not something incredibly lofty - “doing good.” No, “donation” is a more peaceful and different calm word. And I don’t even like the word “sacrifice” very much, because there is no sacrifice in it. It's just your civic consciousness. Chekhov wrote that at everyone's door happy person you need to knock and remind that there are unfortunate people. So you need to knock on your conscience and remind them that it’s worse for someone. Academician Likhachev said amazingly about hospices: they are very important to our society, in which the level of pain has exceeded all conceivable limits. And hospice is an opportunity to justify its existence, to help. And here it is important that all the pathos goes away. For all of us, charity is now becoming hygiene. This is how we understand that you can’t help but brush your teeth in the morning, watch the movie “Summer,” and we also understand that you can’t help but subscribe to recurring payments from one fund or another. Sooner or later, alas, trouble will come to every home. By helping others, we help ourselves first of all, because we gain confidence that this hygiene of society will extend to us too, and we reassure ourselves. The fact that the fashion for charity, as it seems to us, is passing, does not mean that it is going away, but that it is acquiring completely different dimensions. Using comparisons from the fashion world, charity used to be couture, but now it is becoming ready-to-wear. It is high time.
— What about the division into public and non-public assistance?
— I understand with understanding people who say: “Yes, I am ready to help, but not publicly.” I understand their motives, but I want to shake them all and shout: “This is wrong!” Everything has just begun to return to normal, but for this we still need to put in so much effort. We miss you terribly role models. People want to rely on someone they trust, someone they are used to seeing on TV, in newspapers or magazines. We do not yet have the right to help quietly, we must help loudly. A famous person can attract 1000 at a time unknown people who will sign up for recurring payments, and it is irresponsible to remain silent about charity.
Georgy Kardava
— Now, for example, you can buy a T-shirt with a print (the “Not Life, But a Fairy Tale” T-shirt, released in honor of Alena Doletskaya’s book of the same name. - Note "RBC Style") in support of the Vera Hospice Fund. Also one of the forms of public statement, and also fashionable.
— Yes, this is all very important. I’m generally an unfashionable person, I don’t know all these trends and names. It is important to me, firstly, that it be comfortable, and secondly, not show off. Clothing is about self-expression, you dress the way you see yourself. And when I watch the conditional “Fashionable Sentence”, I am overcome with pain for the people: yes, they have become very beautiful, they have changed, but until that moment, when everyone was scolding, it was she, and now some completely alien woman is no longer she. I just love prints - anywhere, because it's about you. You will never wear a T-shirt with a slogan that you don’t relate to. And this will never go out of fashion, it will always be relevant, because it gives you the opportunity to say everything with closed mouth. The other day I changed my profile photo on Facebook: now I’m wearing a T-shirt with the words “Caution! I don’t correct my speech production,” which was given to me by a member of our board. And some incredible number of people have already said: “Nyuta, we want the same one.” And I’m already looking for who will print these T-shirts for me, I’m already counting how much we can earn from them, I remember those who wanted so that they won’t be able to cut it later ( laughs).
Anyone wearing a “Life for the Rest of Your Life” t-shirt is someone who brings amazing knowledge to the world. Every person wearing Alena Doletskaya’s T-shirt is someone who brings warmth. Anyone wearing a “I don’t modify my speech” T-shirt is a person who actually has “Stop Lying” written on his chest. And this is all very important. In any way we can, we must make people aware that they have the right to dignity and pain relief at the end of life.
— People involved in philanthropy are often asked about burnout. Have you encountered him?
— I don't believe in burnout. If a person has chosen the right field of activity, then his work is not burnout, but “tanning.” She lifts to the skies. If I feel really bad, I go to the hospital to see patients and relatives. It can be difficult for me in bureaucratic offices, it is very difficult to deal with finances, it just makes me hang myself. Many aspects of the work are not easy, but not those about which they say: “Oh, how hard it must be in a hospice, your patients are “recovering” like flies, how do you cope there?” We're doing great. There is no more rewarding field in medicine, because every second you feel your usefulness. You enter a four-bed room and cannot leave, because there are four people there, and everyone needs you: make the light brighter, straighten the curtain, open the window; it’s blowing, it’s warm, it’s cold, turning your leg, washing a cup, giving you something to drink, straightening your teeth, scratching your ear—it’s infinity. You don’t even feel for a second that you’re out of work. We will all die sooner or later, but the fact that with every movement, every action you bring obvious benefit to a person is a real drug. It lights you up and certainly doesn’t burn you out.
In palliative care, relatives who have lost a child, mother, husband, brother have been coming to visit us for years to express their gratitude. What kind of emotional burnout is this? I will probably die from fatigue, but not from emotional burnout ( laughs). If I'm disconnected from work, I'll go crazy. The one who is out of place burns out. I think this applies to any field. Now, working in a bank, I would probably definitely burn out. Although, I think I would rather blow it up ( laughs)...
When my mother realized that she was dying, she very calmly told me: “Nyuta, that’s it. Stop fussing."
- Mom, are you scared?
- No, it’s not scary, it’s not painful, it’s not cold, I don’t feel thirsty.
But I know for sure: she was very afraid. I understood that it was inevitable. And she knew that the moment was approaching when the fate of the hospice would be decided.
As she left, she said two important things. So that Masha and I ( older sister) were friends. And for the hospice to work.
She didn’t drag my sister and me here; on the contrary, she talked both of us out of medical care. Now my sister is a lawyer and consults here at the hospice, and I am an English teacher, working with the Vera Foundation.
The main thing is to save the hospice. Don't let the staff raised by mom leave. Avoid hiring people who are contrary to the spirit of the hospice. Do everything to ensure that people maintain decent wages (there are a hundred employees here, and they owe very much for their hard labour get normal money). So that the hospice can afford to be free, not because everyone here is so moral, but because there is enough money. So that this hospice, the first in Moscow, created by my mother, remains the best.
...When this building was being built, my mother forgot something, called home, I came and brought it. I was 15 years old. That's all. I never left here. Washed, cleaned; At that time, the hospice was just starting, there were few staff, I worked on the field service, with a team, as a nurse.
To be honest, it was a kind of posturing. Everyone goes to discos, and I go to a hospice to help the dying. I even had love here, I married a nurse. Mom, of course, immediately kicked him out of the hospice, and she didn’t care at all that it was unethical and authoritarian. She kicked me out, and then we broke up, without any drama, we broke up, and that was it.
I was very arrogant, impudent, and today the old me would categorically not be accepted here. But 16 years ago there were no criteria. And now there is. A lot of volunteers come to us with the feeling that they bring light and goodness. And this is the most wrong thing for patients. Humility comes later. And it comes easier to young people. And for those who are older, it is sometimes more difficult. Then we have to break up.
I understood a long time ago what is good and bad in a hospice.
...There was a patient who became especially attached to me. And I started the winter vacation at the institute, I told him that I was leaving for four days, when I returned, I would cut his hair and shave it. And so it happened - I stayed another week. When I returned, he had already died. His mother gave me his notebook: “He kept writing something for you there.” And so I see it written many times: “When will Nyuta arrive?! When will he arrive? I want to die with my hair cut and shaved.” A terrible feeling that you tamed and abandoned.
The most dangerous thing for evaluating work is the gratitude of relatives and patients. Yes, there are good rooms, amenities, medicines, special staff. And it is very easy to make both relatives and patients be grateful to us. But you need to listen to those who complain, who demand more and better. You need to think all the time how you want it to be if it were you lying here.
Today a woman whose friend has been staying with us for three days told me: “We got here with such difficulty!” - "Why?!" - “And we were given a referral to the third hospice, and they didn’t take us there.” - "Why?" - “Because they said that we don’t treat brain tumors!” The hospice chooses the dying! They don't want complicated things.
Mom was so wise, she always said: go outside the gate and leave your work behind the fence. She did not bring any grief or tears home. There is a professional approach; If you die with each patient, you will very soon go and hang yourself, if you live everything all over again with each patient, you will not be able to help others.
My husband is often offended by me. I call him at the end of the day and say: “I’m already leaving. I'll be there in an hour." I'll arrive in three. He shouts: “Well, what is this?!” How can!" But you go down to the first floor, where the hospital is, and if on the way out you bump into someone’s relative, you cannot tell him: “I know your daughter is dying, but, excuse me, my husband is waiting for me at home...”
The most difficult days are weekends, New Year and May holidays. In that New Year, 2011, it so happened that on the thirty-first of one woman’s father left, another’s husband. And one young man the wife was leaving. And it’s New Year’s Eve for everyone, with friends and neighbors. And I couldn’t give anyone’s phone number, because our employees also deserved their New Year. These people needed support, wanted to understand what to do and how much time was left.
I was on the phone with them all day. I was setting the table, preparing something, and they told me: such a pulse, such breathing... In this situation, you just say: “Let's wait, let's be silent, I won't hang up...”
A week ago, dad was at a concert here at the hospice. He copes with loneliness very well, but he came here and burst into tears. It was hard to watch. And he explained: at home I always feel that she is not there. But here it is, and here it is everywhere. And her office remained her office (Victoria Viktorovna, current chief physician, did not take it delicately), and her staff, and her spirit.
I very often want to consult with my mother, I want her to tell me, give me some advice. But if I stop and wonder what she would do, I get this advice.
Hospice is not part of medicine, but part of culture. The level of culture of a society is not its attitude towards children. But the general understanding is that this old woman lived her whole life - she worked, raised children, was in love. And now it’s abandoned and no one needs it. Hospice is a treatment for people who are often very elderly but alive. They cannot be cured, but they can be helped. And the fact that they evoke fear, disgust, and disgust in many are indicators of our savagery.
There is one area that my mother did not have the strength to tackle. This is the development of the hospice movement as a whole.
It's strange to call it that.
Mom got Luzhkov to sign an order that there should be hospices in every district of the capital, and they are everywhere except the Western and Eastern districts.
There are very worthy hospices in Moscow, very worthy people. In general, undeserving people do not stay long in a hospice, he is better, he is worse, more money, less - bad person won't work here. He will not bother wiping other people's butts and tears.
But there is not a single hospice, except ours, with round-the-clock visits for relatives, this is critical and disgusting. Close people are dying in the wards, but here is the schedule, passport regime.
If you ask a person where he wants to die, almost everyone will answer: at home. Within your own walls, with your own view from the window, with your own books. And if this is possible, then the field service has the maximum amount of responsibilities. She can, with the help of social workers, help with cleaning, washing, lunches, getting medicine, with the help of volunteers - walking the dog, taking children to school, with the help of a psychologist - working with relatives, with the help of a lawyer - dealing with a will. We have such a mobile service, and there are two more. Only three in Moscow!
In Moscow, the budget provides money, but there are no truly free hospices except ours.
It is difficult to raise money for the Vera Foundation. It is difficult to get help from business. To earn money, we publish books, organize concerts, and sell tickets. And no one refused us: neither poets, nor writers. When we held a ballet evening with the help of Maris Liepa, none of the artists refused. Rostropovich, Gutman, Virsaladze, Bashmet performed for free.
But the experience of RAMT is unique. This is the first organization that offered help itself; we did not ask. In Tom Stoppard's play "Rock and Roll", which is currently being staged by RAMT, one of the main characters dies of cancer. Natalya Nikolaeva, the curator of the project, organized a dinner to which she invited people from the Vera Foundation, Ingeborga Dapkunaite, one of the foundation’s trustees, and Stoppard himself. The theater came up with the idea of organizing the “Caring Rock” concert for the benefit of the hospice, and the theater took on all the work.
It is very important that precisely from these people are coming message to society. When the theater does this, and not Abramovich, it has a completely different effect on the people in the audience.
One person just came to the RAMT box office and bought 100 tickets for 2 thousand and 50 for three. And he said: give it to anyone you want! And now Lenkom has offered us a charity performance for the benefit of the foundation.
...I would give a lot to get an answer to the question: did my mother want me to do this?
This is a very difficult inheritance. Not the inheritance you use, but the one you need to live up to. But I can’t let my mother down anymore.
Sometimes you run out of energy and you want to whine. Very! Nothing is working out, I don’t know what to do, everything is bad. And my husband says to me: are you a fool?! For people who need hospice, they feel bad! And everything is great with us!
Dossier
Anna Federmesser - daughter of Vera Millionshchikova, chief physician and creator of the First Moscow Hospice, has a rare specialization: theatrical simultaneous interpreter.
She began calling herself Nyuta at the age of four. Today she is called that everywhere except at school, where she teaches English; there you have to endure “Anna Konstantinovna”. The surname, which means “pocket knife” in German, suits her. Most of all in life, Nyuta, according to her, loves to eat and sleep, and for the children, already fed, to sleep nearby.
Nyuta is thirty-five. Sometimes, out of fatigue, it seems to her that all the interesting things are already behind her. And I have to remember how she legendary mother said: “The most beautiful thing in a woman’s life begins at fifty. When the children have grown up, the strength still allows, the hormones stop raging and the brains finally begin to function!”
She has been involved with the Vera Foundation for 7 years.
President of the Vera Foundation Nyuta Federmesser, in which the conversation was about the most important things: family, children, love. About how to talk with children about death, about inner freedom and openness at any age and in any circumstances.
Nyuta, tell us about your sons.
They are very obviously my husband’s and my children; no one replaced them in the maternity hospital. And very different. The eldest, Lev, is now 13. He is intelligent, subtle, very kind and sensitive, does not want to see negativity in people and their actions, and always justifies everyone. If he understands that there is still something wrong with a person spiritual qualities, gets upset to the point of tears. He is very wonderful, I would fall in love with him if I were his age. Misha is completely different, in short - he is a charming boor, the kind who, no matter what he does, you can’t help but admire. Very strong, a leader in everything, he crushes even me, although I have already become like an asphalt roller in Lately. Misha went into Cossack blood, there are Don Cossacks on his mother’s side, and Leva is a real Jewish child, in white knee-high socks with a violin. Gentle, loves to hug, feel sorry for me, always feels me like a barometer. When he leaves for school, he says: don’t get up, I’ll get ready myself. But at the same time an absolute mug. When she sees that I’m tired, she says: “I’ll make you tea now.” He reaches the kettle, turns it on, goes into another room and forgets about everything. And then the youngest is coming follows him and in a metallic voice comes: “Don’t you see? Mom is tired! You said you'd make tea! This is betrayal!
Are you a good mom?
Actually, I’m a very bad mother; for a long time I was not at all interested in this. They were too small and fought constantly. Only now, when one is 6 and the other is 13, I began to miss them. My husband and I now have two full-fledged family members, smart and interesting, and we feel very good about them. But I don’t have time to deal with them at all. Even the hours I have, I can't spend quality time with them. I have an amazing husband, very “quality” in this sense, and the nanny who is my mother (Vera Millionshchikova - founder of the hospice movement in Russia, chief physician of the First Moscow Hospice from its founding in 1994 to 2010 - ed.) is simply with sent to heaven after death. But I myself am present in the lives of children mainly remotely. It's very embarrassing, but it's true. On weekends I want to sleep, they want to communicate, they jump all over me. I try to at least not drive them out of bed, because even this contact is needed. Lately I’ve stopped swearing at them completely, I just realized that I can’t. Firstly, they both grew up, it’s funny to swear at adults. And secondly, I see them so little, I miss them so much! When you work in a hospice, including with children, “the main thing” and the “not the main thing” change. I don't care at all how they learn, good or bad. That's it! They wonderful people, the main thing is to be healthy. And I can’t swear because of bad grades, although they have them, of course.
What are they reading?
Leva is a very good reader, like a Soviet boy: he falls asleep with a book, with a flashlight under the blanket... For a long time he was not very picky, he read everything in a row, only now a taste began to form, and they began to put some books aside. Now he likes “The Pits”, “Your Three Names”, “Who to Run With”. “Who Would You Run With” is generally the best children's book in history last years, I think. Leva grew up reading The Pink Giraffe (we have all their books at home, and I recommend The Giraffe to my friends as the best children's publishing house, absolutely sincerely), I treasured these books and when Misha was born, I thought, we’ll read and leaf through all this - but no. Misha is an absolutely non-reader. We have never even read “Aibolit” from beginning to end; Pushkin’s fairy tales, which Leva knew by heart at the age of 3-4, were not mastered. When Misha suddenly says “read to me,” the whole family falls into a stupor. Of course, we start reading, but after a few minutes Misha runs away, that’s it. You need to concentrate, be in a state of calm. For Misha this is completely impossible. Now he is learning to read on his own, but not for books, but to read a sign on a store or the instructions for a computer.
Doesn't this worry you?
First of all, it's too early to tell. And secondly, in my opinion, a reading child is one who is read aloud a lot. I myself couldn’t read for a very long time. My dad is an amazing reader, he always read aloud and still reads aloud beautifully, although he is 85 years old, so I loved listening to him. Reading on my own gave me a terrible feeling. When I was six years old and they started preparing me for school, I solemnly swore that I would never read a single book in my life. Dad immediately wrote a receipt on my behalf, made me sign it, and we still have it hanging in a frame. I was very stubborn, and I actually read the first book only at the age of 10, when one day, in the middle of “The Children of Captain Grant” - where Paganel realizes that they are in another part of the world - dad had a severe sore throat. He could not read further, and I could not live further, and this was the first book I finished reading.
With Father. Photo from the family archive
Modern parents are very attentive to what their children read. And quite often in the parent Internet community the question of whether literature should speak to children about serious and serious matters is discussed. complex topics. For example, about death. I remember the debate that took place around the wonderful Compass Guide “Is Grandfather in a Suit?” In your opinion, when and how should we talk to children about this? Should you read about death in a children's book?
Well, of course you need it! You see, children are our mirror. And if we are afraid to discuss death, illness and old age with children, then in society we have the same attitude towards the elderly, towards the dying, towards the disabled that we have. Lack of information and truth is hypocrisy. This is how we cover up our fear of taboo topics. Here are two themes - sex and death. Of course, this is terribly interesting for children. I remember well how I found a medical encyclopedia from my parents, doctors, and began to look for an article on this topic, when I was 12 years old. I found it, came to school and said: “Now I’ll tell you everything, I understand everything!” This can only be done when he pees in it, and you have to want to pee at the same time, and then the real thrill is called orgasm.” The class was shocked. Because I finally brought reliable scientific information - from the encyclopedia. But when I realized quite quickly that everything was not quite right, I began to ask my mother these questions for the first time. And it seemed like we had such a frank relationship, and my mother was very progressive, but suddenly I saw absolute panic on her face: she was not ready, did not want, could not talk about this topic. In these matters she turned out to be a terrible hypocrite. She began to say nonsense: you saw how it is with cats and dogs... But I didn’t see it, and this answer didn’t suit me! And at the same time I could not find any literature other than this medical encyclopedia. I remember very well the late 80s, there was a hunger in class on this topic. And the same one on the topic of death.
Nyuta at school. Photo from the family archive
There was only one case at our school, the boy Zhenya died, he was hit by a car. He was not a classmate or even the same age, but we all ended up in the cemetery because it was very interesting. They approached the coffin and examined it; there was no fear, only curiosity. Now I think: what brutes we were, he was an orphan, his grandmother raised him... And what idiots our teachers were who allowed us to come to our grandmother, whose grandson had died, and she saw this line of curious, giggling children. There was no one to guide, no one knew how. This is only due to lack of information at the right age. You can't kill interest in this. You can kill information, but not interest! And of course the literature must be correct. In this sense, Lucy Ulitskaya’s project “Another, others, about others” is brilliant, it is designed for our mentality, our traditions and values, everything is presented correctly. This project published the book “About a Dead Cat and Live Kittens” (about how life and death are perceived by different peoples).
How to talk to children about death correctly?
In my work I encounter this every day. Our patients have children and grandchildren, many of them young. And in some families everything happens organically. Well, grandma is sick, children and their children visit her, they gradually see her fading away, now grandma is walking, now she’s lying down, but she still wants to kiss you and pat you on the head, now she can no longer speak, and yet you’ve come - she can no longer extend her hand, but she still loves you. And then the acceptance of aging and care occurs completely differently, and the attitude towards the elderly body develops differently. And there are families where everything is hidden from the children, and we persuade relatives to come with their grandchildren. The most difficult thing is when mom or dad leaves, and the remaining parent thinks about what to lie so as not to take the child to the funeral, what to tell him, mom left or something else. In such cases, I always say: “You are leaving the child forever in this situation of betrayal. Beloved and loving mother she just left, didn’t even say goodbye, and I see dad in tears, it’s hard for me, we were betrayed... In a year or two, the child will understand that mom died and didn’t leave, but these feelings will still remain.”
At the hospice. At one of the patient events
Can they hear you?
Many people hear, sometimes we even argue and put pressure. Those who heard were very grateful afterwards. Recently, a woman with seven children left us. And there was a period when the family resisted, the grandparents did not want to come here. But the family is in poverty, and we convinced them with some kind of help. Come, we will celebrate the children’s birthday and give you this and that. It was absolutely amazing when children of different ages came into their mother’s room, their mother was heavy, but they felt very comfortable in the hospice, and my mother managed to give gifts to everyone, took someone out from under the pillow herself, and managed to say something to everyone, and this is what they will have left. They will remember that mom was sick, but she thought about them and prepared gifts for them. At the hospice we held an amazing photo shoot for my mother, and they now have beautiful photos mothers in flowers, with a smile, with loose hair. This is the choice - the children will either have this or a feeling of betrayal.
All sorts of ceremonies are important for children. If a child dies a pet, no need to run to the market to buy another one. We need to bury him together so that it is a ceremony. The first death in my life happened when I was three years old; an old neighbor died in our village, something out of a fairy tale. He was well over 90, hunched over, wearing felt boots, wearing a hat with earflaps with an ear raised, like Postman Pechkin. I remember well how he picked currants in a bowl in the summer in this hat. And so he died, and in the village they were going to go to the funeral in a car, I galloped up to my mother - I also want to go to the funeral, everyone is going. And mom said: go. I went with my grandmothers; in the village, it’s customary to take children with you. I looked at the invited mourners, at my grandfather’s relative, who grumbled that they were not crying well. Naturally, this summer my friends and I buried a crushed rook and cried in the same way, dramatized it. Then, when I was 6 years old, my nanny died of pneumonia, and the day before my mother took me to say goodbye. Mom said: last time See you, and it was strange to me how it was, but I hugged and kissed. Then my grandfather left, and it was, of course, harder, because we came to my grandfather in the hospital, entered the room with my mother, and there was an empty bed. And my mother understood right away, but I didn’t, and began to shout at the neighbors in the ward: they see that my mother is crying, and they don’t say where grandfather was taken. Then I remember the funeral. Of course, this doesn't make it any easier to deal with death. own parents, but this makes communication with children easier later.
When my mother died, I allowed then nine-year-old Lyovka, if he wanted, to touch his grandmother. But she warned that the grandmother would not be the same as usual, but different to the touch. The three-year-old bear endlessly asked where his grandmother was, because she loved him and was very sorry for him. He was born sick, and she kept bargaining with God for him, that it would be better for her to be sick and for him to recover. And I lived with fear with such a sick child, I was not warm with him at this stage of his life, and my mother felt sorry for him, hugged him, teased me all the time, raised me with her behavior, her example. And Misha felt that no more than a person, which always gave off exceptional warmth. And he kept saying: what does it mean in heaven? Is she going to fall on us from the sky right now? And you understand that this information is not enough for a three-year-old. “Flying to the sky” is incomprehensible to him; it must fly away in such a way that it won’t crash from above. Well, how could I tell him that she left? Or how could she tell him that she had fallen asleep? How many fears I see in children who were told that their grandmother fell asleep and she never wakes up! And then the children are afraid to go to bed, because suddenly you won’t wake up?
And Leva?
Lyovka adored his grandmother. She was a hooligan, she broke all the rules that I imposed. Lyovka once heard that she would like jazz to be played at her funeral and that there would be no tears. We had an amazing priest, Father Christopher. He knew his mother very well, knew her difficult relationships God bless me and I didn’t mind jazz either. And here's a huge one beautiful hall, Ella Fitzgerald sings, the priest conducts the funeral service, and I suddenly look - Lyovka is dancing. He did as grandma wanted, he just danced, and he felt good. This will definitely somehow have a very correct impact on his attitude towards Ilyusha and I’s aging, illness and death, and so on. In general, children need to talk about both this and that in a way that is understandable. And, of course, find information suitable for a particular child.
Nyuta with his mother Vera Millionshchikova. Photo from the family archive
Returning to another “forbidden” topic - sex. Misha covers any scene in the film where there is something romantic and erotic, covers his eyes with his hands and then looks through his fingers like that. And he asks a million questions. He has a very early and thorough interest in this topic. And I don’t always understand how to answer his questions, I get lost. We bought absolutely wonderful book in my opinion, unfortunately, I don’t remember what it’s called, where, as it seemed to me, the main point was perfectly stated. It says that mom and dad decided to give the boy a brother or sister, they lay down in bed, there were beautiful stars and the moon in the sky, they pressed close to each other, hugged each other tenderly, and their bodies scattered into a thousand stars. Here's a metaphor. I read this to Misha, and he told me: children are not born from this. Give me another book. What stars? How many times have you and dad hugged each other tenderly and tenderly and where is the result? In general, each child needs his own information, but it is necessary. It’s stupid not to talk, it provokes all sorts of complexes.
How to live with children?
To love more. And be friends. Everyone here has their own recipe related to my own childhood. For me, my closest friends have always been my parents and husband. And I would like it to be the same for my children. For friendship to work, you need to learn to trust children. As a child, I was a terrible liar, and my lies were not always innocent. That is, sometimes it was such “Faryatyev’s fantasies”, some kind of bullfinch that accompanied me from home to school every day. And it also happened that I stole money or buns in the store, or other unsympathetic actions. But you see, I grew up and work for a charitable foundation, which recently received an award as the most transparent foundation. The fact is that if you have wisdom, like my mother, Karabas-Barabas will not necessarily grow out of unsympathetic actions. Remember collecting ten-kopeck coins in champagne bottles? I stole them as a little girl, hid them in my pocket, walked around and rang them throughout the apartment. Mom heard this and didn’t say a word to me. And then she asked if I had enough pocket money to buy something there. I’m proud: of course, I can buy this and that, I can buy everything! Mom was amazed: come on, how did you accumulate so much! And she and I took and together put these coins back into the bottle, and I made my contribution to the family piggy bank. How many years passed before I understood this move of hers, realized how much trust and friendship there was in it!
One of my friends said: in order for a child to return to you, you need to let him go. And I understand that I am approaching this period with Lyova, and I am terribly scared. It's easy to talk about education when children are small, but when they grow up... What will be the result? So come back in twenty years. Let's see what we can do. The main thing is that I know for sure: my children will be good people.
Nyuta with children and father. Photo from the family archive
Among the many questions about work fund and hospice The question of how to get to a hospice is very often asked. In some strange way, the question immediately says the following: it is clear that it is difficult to get in, it is clear that there is a queue, it is clear that someone will have to give something. Tell who and how much. I always answer the same way, alas, it’s not difficult to get in, you just need to have cancer in the fourth stage. It turns out I'm not always right.
It is not difficult to get into a hospice if
1. Do you know that hospice exists?
2. Your local GP and local oncologist know that hospice exists and what type of care it provides
3. It's about about the First Moscow Hospice.
The fact is that the referral to the hospice is given by the district oncologist. The oncologist makes a referral to the hospice in his district. There are 8 hospices in Moscow, today there are 11 districts. That is, hundreds of patients living in the Western and Eastern districts and in the newly annexed territories do not have a hospice in the district at all. By law, these patients have the right to choose any of the hospices available in Moscow and, if space is available and in agreement with the chief physician, they go there. Do district oncologists remember this and do patients know about this right?
On Monday, at the large weekly conference at the PMH, all deaths over the past week are usually reviewed. And yesterday, at such a conference, doctors reported on a patient from the Western District of Moscow, who died in a hospice on Saturday, having spent less than a day there. The doctor on duty ended his report by saying that this is a typical result of late seeking help.
The reason for such a late appeal lies precisely in the fact that the district oncologist and general practitioner from clinic 195 did not tell the relatives about the possibility of hospitalizing their 83-year-old mother in a hospice, where she, and the whole family, would have been helped in the last, such difficult weeks. The daughter learned about the hospice from friends, she began to ask for a referral, the clinic did not know what documents were needed, the process of completing all the papers took a week. The woman was getting worse at home and when, finally, the documents were ready and transportation arrived from the hospice, she was already in a coma and died in the hospice a few hours later. We were unable to provide any real help. Moreover, having seen the conditions and attitude of the staff, my daughter began to worry that she had not organized hospitalization earlier, that she could have helped her mother, but alas... That is, we even worsened her psychological state with an additional burden of guilt.
But it could have been different. If the care system worked, if doctors in clinics had the opportunity, time, knowledge, and strength to think about their patients. If doctors’ ambitions came after the desire to help. If only there were enough hospices and if the topics of dying and hospice care were not taboo in our sick society.
But when a couple of weeks ago one died in our hospice famous artist, a photograph of him appeared in the press, already dead, pale, emaciated by illness, and journalists did not hesitate to write that his friends managed to hospitalize him in a hospice for money. You can lie and take pictures of the dead, the circulation will sell out faster.
And when two years ago I tried to arrange for the offices of all Moscow oncologists to have posters made by the foundation about hospices with their addresses and a description of the help that can be received there completely free of charge, I was refused, explaining the reason for the refusal as follows: why upset with information about possible death from cancer in a hospice for those who came to the oncologist with the hope of recovery. This is inhumane. Of course, it is much more humane when a person dies without receiving help at all. But unnoticed by others.
And when the First Moscow Hospice decided to gather all district oncologists for a special meeting to once again talk about cooperation and timely transfer of patients, only 4 people from those announced by the management came to the meeting central district 32. And these 4 already cooperate with us perfectly, and the rest had Friday, one of the first warm weekends. Why go to some hospice for some meeting.
Does it still make sense to say that a woman who was not hospitalized in a hospice on time was a minor prisoner of a concentration camp during the war, lived a long and difficult life in not the most humane country, she gave birth to and raised a daughter, and she was unlucky enough to end up getting cancer, and she was also unlucky to live in the Western District, where doctors don’t know about the hospice and where, at the end of her life, another concentration camp awaited her - provoked by the system, or rather, the lack of a system of care for cancer patients.