Society

Nyuta Federmesser: "High-quality death is the celebration of life"

AIDS.Center talked with the founder of the VERA Hospice Charity Fund about death, HIV, Sobyanin and how to stay human until the end of your life.

For those who are hearing the word palliative for the first time, a hospice is a medical and social institution for treating terminal patients. "Nyuta" – Anna Konstantinovna Federmesser – is the founder of the VERA Hospice Charity Fund, one of the pioneers of the hospice movement in Russia. Her mother, Vera Millionschikova, was the founder and head of the first Moscow hospice up until her death.

Anna Konstantinovna has been the head of the State Center of Palliative Care, part of the Moscow Department of Healthcare, for two years. But she still appoints the fund's office at Smolenskaya metro station as the location for our interview.

On the first floor at the very entrance, under a portrait of the actress Rimma Markova from the film Pokrovskie Vorota (the one who said: "Cut to hell!"), there is a board with markers. These are the statistics for the hotline. Number of calls for July – 725. Below is deciphered: "pain relief," "no drugs," "state your address." These are the questions people ask when they call here. Aside from the hotline, the fund also provides methodological and material assistance to eight Moscow hospices, provides targeted assistance to terminally ill patients, and coordinates and trains volunteers.

Beauty Day at the Center for Palliative Medicine. Photo: Anna Artemyeva/Novaya Gazeta

These services occupy the first two floors of the building. Ms. Federmesser's office is on the third floor. Our meeting is constantly postponed. The boss is still absent at 8pm, 9pm, 9:30pm. A force majeure. An urgent issue took her to the other side of the city. Around 11pm Nyuta herself appears. From the doorway she says, "Today was a hell of a day, sorry," and sends her assistant home, "If you do not rest, I will fire you." Though she herself has no intention of resting, "I'm usually here until one in the morning."

– What happened?

– I ran into a thing I've heard about many times but never seen with my own eyes. So-called black estate agents were trying to take away the apartment of one of our patients, today I had to talk with them personally.

– Did you get the granny back?

– Yes, for now. We filed a police report.

On the wall of the office hangs a picture by one of the patients (who died long ago): a dandelion, the wind tearing its white seeds out in tufts – that's the fund's symbol. On a shelf nearby are two books: Look at him by Anna Starobinets, and Dr. Lisa Glinka's Conversations. Diaries. Nyuta sits down.

Anna Artemyeva/Novaya Gazeta

Director of the Center for Palliative Medicine of the Moscow Department of Health Nyuta Federmesser

Anna Artemyeva/Novaya Gazeta

Center for Palliative Medicine

Anna Artemyeva/Novaya Gazeta

Nyuta Federmesser

Anna Artemyeva/Novaya Gazeta

Director of the Center for Palliative Medicine of the Moscow Department of Health Nyuta Federmesser

Anna Artemyeva/Novaya Gazeta

Center for Palliative Medicine

***

Every interview of yours starts with the same question: why do we need hospices? Why?

– There are two significant moments in life: birth and death. One person in the world will remember your birth until the end of their life your mother. Many more people remember a death. Husbands, wives, friends, colleagues.

Many years ago, humankind arrived at the idea that it doesn't matter what kind of person a mother is, any woman deserves to give birth to a child in humane conditions. This means she deserves certain standards of care during childbirth, and we don't ask about the life she led before getting pregnant. Humankind has once again arrived at the same idea, but this time it's about death.

An obstetrician does not "cure" pregnancy. They accompany an expectant mother. A palliative care doctor does not "cure" dying. It's a natural process. But they accompany a dying person.

For us, it's not socially acceptable to just hand a sick relative in somewhere. "This is our cross to bear." That would be the same as abandoning them.

– Many patients with very loving relatives still end up in a hospice because they're not capable of handling the pain, at the very least. They need morphine. And a hospice has it. That's the first thing.

Secondly, not taking care of them yourself does not mean giving up. I will give you an example. We had a dying woman being treated by her 22-year old son. He was incredibly caring, did everything – washed her, fed her. He almost never left the ward. But when by chance he left the room for a couple of minutes, the mother grabbed me by a hand and in a whisper, because she had already lost the strength for more, she said very clearly, "I ask you, I beg you to stop him from ever ever changing my diapers again! I raised him by myself! He's my son, do you understand? My son!"

"One person in the world will remember your birth until the end of their life — your mother. Many more people remember a death."

A helpless person certainly does not always give themselves up to someone else's care easily. A relative has the right to stay a relative in the same relationship hierarchy as before: a mother will remain a mother, a husband a husband.

And, whatsmore, it is often important for the patients themselves that their relatives remain close to them, but don't turn into medical staff. We had a woman with a baby; if we'd ask her how Kate was, she would answer something like "saturation level is such-and-such, analyses show such-and-such..." Because she had become a nurse. And if you ask her when was the last time she took her daughter by hands? Or sang her a lullaby?

Normal human relationships certainly assume that you are ready to help in joy and sorrow, but when you become a function, and stop loving because you have neither the power nor time to love...

Why not call in a professional? Sing your child a lullaby while rocking her in an armchair, and a nurse will pump out mucus with an aspirator.

Anna Artemyeva/Novaya Gazeta Center for Palliative Medicine

Pain relief is a separate issue...

– When Rear Admiral Apanasenko shot himself, do you think he did so just because of pain? Vyacheslav Mikhailovich brought up wonderful daughters, he had an amazingly faithful wife, as most military wives are. But he was the only man in the family. And suddenly he was laid up.

People should have right to live their lives until the end and remain themselves. Otherwise dehumanisation starts to happen. It also happens when you are lying in the intensive care unit, naked and tied up. A man next to women. When they stop calling you by your name, "The one by the window with pancreatic cancer."

We have already convinced everybody that if a person cannot be cured it does not mean that a person cannot be helped. But what does help mean? High-quality death is the celebration of life. You pass away surrounded by your loved ones. You pass away without losing your dignity, without being dehumanised.

You regularly host concerts and festivals for your patients, there are books on each floor... Do people really need them before they die?

– I don't know for sure. Some of them need it, some of them don't.

I don't think I'll need it. Actually I don't love people that much, and when I'm dying I'll probably hate everyone... (laughs)

And anyway, you say "before they die": your "before-death" – what is that period? If a person is relieved of pain, is allowed to stay with his relatives, to get a cat in the ward – we allow this kind of thing – people stop dying. They start living.

Until a person is not dead, the person is alive. Our instinct for life – the very one that makes a baby take his first breath when they're born – this instinct stays within us till the very end.

Our patients can drink wine, smoke a cigarette and enjoy it. We do not torture them with mashed pearl barley soup and fish preserves. There is no dying. There is fading, when you get tired faster, but we don't put on hour-and-a-half concerts with an intermission.

Anna Artemyeva/Novaya Gazeta Center for Palliative Medicine

Even smoking is allowed?

– Look, if a person sentenced to death is allowed to smoke a cigarette, why should we forbid it? We have smoking wards. There are smoking rooms. In summer when we have good weather we move them out into the courtyard.

But at a certain point in time it all fades away...

– There is a stage when a person slowly "plunges" and withdraws into themselves. There is a moment when they stop responding, they need rest.

"A relative has the right to stay a relative in the same relationship hierarchy as before: a mother will remain a mother, a husband a husband."

A person feels everything till the end. If we bring a dog-therapist to a patient who doesn't talk anymore, we explain, "Nikita, here is the labrador you played with a week ago." The dog places its nose in the patient's hand, and Nikita's rate of breathing changes completely – we can monitor it. It's his business what he reacts to, he didn't hear our words, but he felt a dog's wet nose.

The law has recently changed, and hospices are now allowed to accept HIV-positive patients. But you accepted them before?

— Yes. But it was slightly against the rules. In the old Procedure for Palliative Care – an official document, we have the same in both oncological and obstetrical care – in the corresponding paragraph there is an asterisk and a note: "excluding patients with HIV." Now this note is gone.

What does that mean?

– Previously, we could only accept patients who came to us themselves. Hospitals did not send HIV-positive patients to us. Now they will.

Let's get it straight: very few people die suddenly. Most of them die in need of care. And in this sense people dying of AIDS are no different from people dying of cancer.

"People should have right to live their lives until the end and remain themselves. Otherwise dehumanisation starts to happen."

If I am not mistaken, last year 722 people died of AIDS in Moscow. Only 11 of them went through us. And where did the rest of them die, in what conditions?

Usually people die of AIDS in hospitals for infectious diseases. These are institutes with strict rules, there is limited access, a strict regime and closed wards.

Recently I talked with the mum of a 29 year old guy who died in one such hospital. The woman told me that the last time she saw her son, the only thing he had said was, "Mum, I'm very afraid I will be wrapped in a black bag when I die", this is the type of bag dead people are carried away in. "Ask them to wrap me in a different one." She was not even called when he was gone. And the body was wrapped in exactly black.

Now she says, "So I keep on living and I think all the time, how could he be dying there all alone without me?" And this bag she will remember until her dying day.

It is incomprehensible, why should people dying of AIDS have a different relationship with themselves? We all know how AIDS is transmitted, there's no need for a separate leprosy hospital for them.

Anna Artemyeva/Novaya Gazeta Center for Palliative Medicine

I remember well how a famous activist passed away, his boyfriend came to him, how he took care of him, how he was holding his hand. How he did not have a single second to feel that he may be not accepted or judged in this space.

"I am very afraid that I will be wrapped in a black bag when I die"

And I do not understand why a person should pass away somehow differently. What the hell? Can we stop connecting your quality of death with whether or not you have AIDS? Whether you're gay or not? Whether or not you're from another town or homeless? Palliative care is care that is assisted, regardless of the diagnosis. It is assisted on the basis of a patient's condition and their set of symptoms.

I want all HIV-positive people to know that they have this right, and if they are not referred to a special institute, then they can transfer to us by themselves.

At the beginning of the interview you said that you had "a hellish day" today. What did it consist of, apart from the incident with the estate agents?

— From half past six to nine in the morning I answered to a bunch of letters, sorted out a couple of situations with patients via WhatsApp, then there was a daily briefing at the Department of Health. A number of meetings with medical directors and patients, then I was signing some papers... This is what I do not like at all.

Why?

— Well, I'm a straight-A student, I read all their papers and correct mistakes. Especially when the word "request" is spelt with the letter "k".

At present you are no longer the head of the fund. Instead, since April 2016, you have been head of the Centre for Palliative Medicine of the Moscow City Department of Health. What's it like to suddenly find yourself a bureaucrat?

— You mean what's it like to become a part of this very system which I scolded and spurned just two years ago?

Anna Artemyeva/Novaya Gazeta Center for Palliative Medicine

Yes. What feeling does that carry with it?

— A different one. It turns out there are a wild number of civil servants who slave away, do not sleep at night, adore their job and do it honestly. From the other side it seemed that all officials are freaks. There are freaks, and there are everywhere, but by no means everyone.

Did you make any more discoveries for yourself?

— In terms of negative discoveries — speed. There is none.

Recently you agreed, on top of everything else, to become one of Sergey Sobyanin's authorised delegates during the elections.

— I do not worry at all when someone says to me that I sold out, it doesn't harm me. But I am tired of the amount of shit that has been poured on me lately. Just today some girl wrote to me on Facebook that she hopes "my children die in pain without anaesthetic" and for me and my husband to "burn in hell"...

But when you joined the mayor's team, you understood what would happen: "and the tenth dent was saved by Chulpan Khamatova".

— No one forced me. Obtaining access to the body, I managed to tell Sobyanin about relatives who are not allowed to enter resuscitation departments. He was touched, remembering how himself he sat in his mother's resuscitation department, and so there we got an order for open resuscitation. The only one in the country.

"Can we stop connecting your quality of death with whether or not you have AIDS? Whether you're gay or not? Whether or not you're from another town or homeless? Palliative care is care that is assisted, regardless of the diagnosis. It is assisted on the basis of a patient's condition and their set of symptoms"

I managed to tell him about mothers who give birth to children with defects incompatible with life. And we discussed a pilot project in perinatal palliative care. We set about its implementation. In order not to have books like Anya Starobinets.

Khripun, and Pechatnikov, and Sobyanin are responsible for the current situation in city health. I am aware that everything that happens in the field of palliative care, happens through them. And yes, as a person for whom this is their life's work, I am grateful to them.

And what does the fund do now?

— The same as before. Helps hospices that belong to the Center, including the Vera Millionschikova First Moscow Hospice.

By the way, do you remember how your mother, Vera Vasilyevna Millionschikova, decided to set up the hospice?

— It was not her decision. Life brought it about. There was another defining moment, when we understood that we need to start offering palliative care for children, and this is important. When there, on the threshold of the hospice, appeared a man with his son, Tsolak, who had been kicked out of the children's hospital. They were told, "Armenians are going to die to Armenia." Liza Glinka advised him to come to us, so he just came and stood near the door with the child in his arms.

It was the end of the working day. Someone told my mother that there was a man standing outside, she went out and saw a baby with a shunt in the head. In a coma. This is how palliative care for children started.

Vera Millionschikova. photo: The VERA Hospice Charity Fund

Was your mother a very tough person at work?

— Very much so.

There is a letter on the web that she wrote to the hospice staff before her death... It is very cutting.

A "spiritual testament"? — Yes, this is the tone in which she communicated with the staff.

And did she swear a lot?

— She might say, "Oh, everyone has gotten too relaxed, we haven't fired anyone for a long time." I interceded, "Mum, what's with the approach?" But still she arranged a demonstrative beating.

Did she fire anyone?

— Yes.

Anna Artemyeva/Novaya Gazeta Center for Palliative Medicine

Didn't she regret it?

— She did not. She could rush around and say, "Get out of here!" and the whole staff would be motivated for three months ahead.

Tough. Not always objective. However, she never stinted on praise if people worked well. For the staff she was not "mummy" but "mum". And when you go to "mum" you could get a cuff. But she was always on the patient's side, and the staff knew it.

And did she apologise for rebuking unfairly?

— No. She might apologise for non-compliance with her own standards and requirements. But she did not apologise.

Vera Millionschikova and Nyuta Federmesser

Are you a tough leader?

— Unfortunately, yes. I can endure for a long time, I endure, by the way, for longer than my mum, but I do not forgive employees.

Such people can have a lot of enemies, a trail of resentments...

— I do not offend. To fire does not mean to offend. A person may not be able to cope with their duties for various reasons, but if it hurts the job, then it is necessary to part ways.

When should one leave such a job?

— One of my biggest fears is that it will cease to hurt. If all these stories stop upsetting you. Ceasing to be upset is unacceptable by any means, otherwise just leave the job.

Anna Artemyeva/Novaya Gazeta Center for Palliative Medicine

— Is that burnout?

— I do not believe in burnout. Emotional burnout happens when no one needs your work. When you do not see the result. It does not happen in the hospice. Or it happens to those who chose the wrong path. I burn out in the evening, and in the morning I light up again. This job nourishes me, gives me strength, it doesn't take it away. I am killed by paperwork, when I get tired, I go downstairs to the hospital and the emotional burnout passes. An emotional lightup takes its place.

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