“It is a gift from God to be with a person who is dying. About the attitude of relatives and friends to work. But this is the service of God.

Hospice is called medical institution in which terminally ill patients are assisted in last stage diseases. The word itself comes from the Latin "hospitum", meaning hospitality. So from the 6th century, places of rest for travelers were called. The first hospices were along the roads along which Christian pilgrims walked. Tired and exhausted people stopped in such establishments.

At present, incurable patients are surviving in these institutions. official medicine can no longer help. In the CIS countries, cancer patients are usually placed in hospices. These institutions are extremely wary, and sometimes even squeamish attitude. Meanwhile, they are very popular in the West. It's time to debunk the main myths about hospices and understand how society really needs them.

Hospice appeared in Russia recently. In Moscow, a specialized institution of this kind for cancer patients appeared back in 1903. The initiative came from the famous oncologist, Professor Levshin. He has been raising funds through charity for several years. A four-story building for 65 people appeared on Pogodinskaya Street. For that time, it was an advanced institution, preparations with radium were tested here. But in the 1920s, the institution lost its original functions, turning into a research clinic. In our time, the first hospice opened in St. Petersburg in 1994.

Getting a patient into a hospice means his imminent death. Do not take this institution as a house of death. Palliative care improves the quality of life. It's about about the elimination of pain syndrome, proper nursing care, the support of a psychologist. A stay in a hospice is not a preparation for death, but an attempt to make life as worthy as possible until its very end.

Only cancer patients are admitted to the hospice. Access to palliative care is essential for anyone with a life-limiting chronic disease. International studies have proven that 70% of patients with such problems can improve their quality of life through palliative care. This includes people with heart, kidney, lung disease, dementia, or kidney failure. Even patients with chronic diseases find support here, learn to deal with their problem on a daily basis, stay active and feel better.

In the hospice, pain syndromes are reduced only with the help of drugs. Palliative care includes whole complex measures. People are taught to manage pain through spiritual and psychosocial care. The very term "all-consuming pain", which is used in hospices, includes suffering not only physical, but also psychological, spiritual, social. This general stress must be removed. In palliative care there is a place for narcotic painkillers, but the course is not limited to them alone.

Palliative care is provided only in the hospice. There is a visiting hospice service that provides palliative care and at home. Doctors and nurses can teach relatives how to properly care for the sick, instill in them the philosophy of the hospice. The fact that a person can no longer be saved does not mean that he cannot be helped.

Hospices are for the elderly. Hospices, along with a palliative care program, are available to patients of all ages. I do not want to think that children can suffer from incurable diseases. In practice, a significant portion of hospice care is for babies who have fatal or life-limiting illnesses. Palliative care programs themselves should ideally be prepared for patients of all ages. There are some shelters that are designed specifically for children.

All those in need receive palliative care. The World Alliance of Palliative Care Organizations shows that only one in ten patients receive the required support. And these are the average figures for the world, in Russia it is even worse. Currently, only 40% of patients receive palliative care in Moscow hospices. Without full-fledged such support, the delivery system medical care in the country can not be considered complete. The terminally ill should be able to get hospice care from specialists.

People live in hospices for several days. It seems that in hospices, patients manage to live only a few days, the bill is best case goes for weeks. But the largest insurance companies in the world offer hospice services for six months. If the patient managed to save his life, then he can stay here and further, or return here at any time. Sometimes the departure of a team of professionals works wonders. Here they see patients as people, and not a serious diagnosis. As a result, good care allows many to live longer than doctors predicted.

Getting into a hospice means giving up the struggle. Hospice patients never give up. Employees continue to fight for the life of the patient, offering the family to do the same. Care focuses on hope. They are trying to convince people that they will not feel pain, that they will soon be able to go outside, see their grandchildren at the weekend, and celebrate the upcoming anniversary. You should always hope for recovery, but at the same time you need to prepare for the probable future.

Hospice hastens the death of a patient. Many are afraid of going to a hospice, believing that they will end their lives there faster than at home. In fact, numerous studies have shown that people with the same diagnosis live longer in a hospice, in contrast to those who refuse such a service. The institution makes it possible to live more than the last days, moreover, it is better.

The hospice requires a receipt for the refusal of resuscitation. Some hospices require such a receipt, while others do not. To get a place in a hospice, such paper is not at all mandatory. In fact, the document says that in the event of a cardiac arrest, the patient refuses to try to start the organ using electric current. The fact is that this is fraught with fractures of the ribs. Such paper allows you to give permission to leave a person without torturing the staff and yourself. But the signature can always be revoked. The purpose of the hospice is to help the person, not to demand something from him.

It is better to die at home than in a hospice, hospital, or nursing home. Hospice is not a place, but a support from a team of professionals. They work with people wherever they are. Hospices can be located in homes, apartments, trailers, homeless shelters, nursing homes, and nursing homes. The hospice should be in a place that the patient himself considers his home.

Hospices stop giving medicines. Often people even in their last days take drugs from a long list. Refusal of some of them is really able to increase well-being or improve appetite. If there is a diagnosis that leaves a few months of life, then there is no point in lowering cholesterol or treating osteoporosis. While in the hospice, you can eat as many eggs or ice cream as you want! Why not indulge in whipped cream with strawberries? In any case, doctors will give recommendations on which medications no longer make sense to take, but the final decision remains with the patient himself.

Hospice makes patients addicted to drugs. In very small doses, drugs can be effective in relieving pain syndromes and improved breathing. Medical team has extensive experience in the use of narcotic drugs, giving them in such a volume that the patient can feel better and maintain his former lifestyle. Doses are given in small doses so that they do not lead to a blackout and do not lead to addiction. Those who are afraid to take drugs may ask the nurse to be with them after the first dose, assessing their comfort.

Hospice is expensive. In the West, hospice services are covered by private insurance companies. Many shelters have their own funds to cover expenses or are looking for ways to raise funds.

Getting into a hospice means that it will no longer be possible to communicate with the attending physician. Hospice doctors work in close cooperation with treating doctors. Together they will create the best treatment plan, optimal for the patient. You just need to inform the hospice that consultations with your doctor will continue.

Hospice means complete failure from your own decisions. The hospice is built around a man-made plan. The patient seems to be riding in a transport, choosing his own path. Everything around helps to make the car run smoother.

The hospice provides round the clock care. At the hospice, a team is available 24/7 to provide assistance and medical service. But the team never takes responsibility for care and promises to provide permanent care responding immediately to all problems. Not all hospices are able to constantly monitor their patients, this should be taken into account.

All hospices are the same, whether they are commercial projects or charities. Each hospice must provide certain services, but the paths often differ. Just as there are many business models for running a restaurant, there are also options for providing care in such establishments. And sometimes it is important for families to know whether they are dealing with a commercial enterprise or a charitable organization. Keeping a patient in a hospice can become very expensive in the absence of insurance.

Near the exit from the metro station "Sportivnaya" from behind a high fence with a sign "Moscow Hospice No. 1" you can see the dome of a small church. This hospice is a hospital for people dying of cancer, but there is nothing gloomy inside: the wards are cozy, the faces of the medical staff are cheerful, under the windows there is a flowering garden. In this garden near the temple, we talked with Frederique de Graas about life and death, about finding oneself and serving others.

- Frederica, tell me, how long do patients usually stay in the hospice?

It happens differently. Usually they lie down here when they can no longer cope with pain at home - they lie down here for three weeks, and then they return home again. Or very lonely people lie down here, for whom there is no one to look after at home. We only have 30 official beds - that's not enough. There is also a field service that takes care of more than 400 people, doctors see who needs to be urgently hospitalized, and who is better off at home for the time being. It is difficult to work on the field, because trips require a lot of strength and energy, young doctors and nurses usually work there, the rest bow before them ...

- Do you have to travel all over Moscow?

No, the hospice only applies to our county. Although we often receive patients from afar, if necessary.

- How do you accommodate relatives who come to visit?

Relatives and friends can eat and spend the night with us for free. It is very important for us that relatives can stay longer with the patient, so that they themselves feel comfortable, and that they can console the person who is dear to them. We really understand that caring for relatives is just as important as for the sick, that they are very worried about each other, because the patient takes care of relatives like a mother takes care of a child. If you do not pay attention to relatives, do not notice that they are also psychologically difficult, then this will also affect the patient - pain and symptoms can worsen significantly. But I think that the atmosphere here is quite free, light, the nurses are sociable, and this somehow transfers to relatives, they communicate with the sick and with each other - the visit does not turn into a gloomy sitting near the bed.

- Tell me, do you yourself talk a lot with patients? About what?

It seems to me that it is often even easier for me than for a priest to talk with the sick, because I spend much more time with them. Not just as a psychologist - come, sit down, and let's talk. It's good that I have something to do: I treat them as a therapist, take their pulse, do a massage, and at this time we talk in the most different topics. They talk a lot about themselves, it's a very close contact. Of course, my communication cannot at all replace communication with a priest - every week on Tuesday Father Christopher Hill comes, confesses, takes communion, once a month he serves the Liturgy in our church. People take communion, but the majority - only in order to become healthy. This is a very poor perception, very... Rarely does anyone seek to meet the Lord. Only once I met a woman here who said: "I can't wait, I want to go there." But this is one person out of that many.

Frederica, is it all up to last moment trying to hide from death, turn their backs on it and not see it?

No, not all, but many. I remember we had an 18-year-old girl, Anya, dying. She had a sarcoma of her hand, and her mother did not accept the possibility of her death at all. Anya lay in a single room, and for two years she was tormented by incredible pains, but no one could help her.
Once, during a round, the head physician says to me: “Frederika, you are a psychologist – talk to her.” Where to start? There is a mother who does not allow the slightest hint of death: “Anechka, everything will be fine, in the summer we will go on vacation ...” - and so on. I crossed myself and entered. It immediately became clear that my mother was not happy with me. - Anya, what was wrong with you while you were in our hospital? I ask. Anya looked at me reluctantly. bright eyes and, clenching her teeth, she answered: - Blood from the nose went! I hesitated a little: - A lot? Again he looks angrily: - A lot! I've already been there! It was the first time in three years that she had spoken of death. - How was it there? - Well, warmly ... - she said very reluctantly and immediately began to cry. - Why are you crying, because it's good there ?! And then Anya for the first time screamed at the top of her voice: - I don't want to be there!!! And she started having convulsions. This happens when a person keeps emotions and pain in himself for a very long time, which he cannot share with anyone.

Tension physically builds up in the muscles, and cramps are like steam coming out of a pot with the lid tightly closed. The lid opened slightly, it became possible to let off steam - but, unfortunately, my mother immediately ran in and wailed: “Anya, Anya, everything will be fine!” Anya fell silent, clenching her teeth, the lid closed tightly again, and, as is usually the case in such cases, Anya's hand again hurt very badly. Frederica de Graas - one of the volunteers of the Moscow Hospice No. 1, psychologist and therapist, specialist in oriental medicine and reflexology.

However, after this conversation, she was able to sleep peacefully, which had not worked out well before. They both disliked me terribly, because I touched something that I should not have touched, but still I went to visit them every day. When Anya died, her mother asked to be dressed as if she were alive, to paint her lips, to put on a wig - continuing to deny death. This is bad for mom: if she keeps denying it all the time, then as a result she herself will get sick.

- Of course, it is hard to bury a young daughter. And how do young people themselves experience their imminent death?

It is said that today's youth is spineless - but when they face an illness, one must see how resignedly they accept fate, how they fight to the end for the sake of their parents. We had Mikhail, a young man with beautiful blue eyes, he was 17. At the first meeting, I asked him: “What do you think about your illness?” He answered simply: "I will die soon." “How can you talk about it so calmly?” “I have already learned to live deeply now.” I almost gasped: philosophers and psychologists agree that in death there is positive side, which gives impetus to live deeply, not superficially, to appreciate life - but hearing this from a young man who said it so simply was unexpected for me. True, after three minutes he was already saying: “No, I won’t die, how can I leave my mother?”
This is very typical. Dr. Elisabeth Kübler-Ross has worked with people who have been diagnosed with a terminal diagnosis and has identified five phases that a person usually goes through: first, denial of the diagnosis, then resentment, then an attempt to deal with God, after that comes depression, and the last, most milestone is acceptance of one's imminent death. Switching to this final stage with Misha it happened very clearly and beautifully: at one moment he accepted the approaching death and said: “I will die and it’s true,” and at the next he could no longer. The most important problem for him was: “What will happen to my mother?” For most patients, this concern is difficult: “What will happen to relatives, how will they survive?”

- Is this problem really so difficult for the elderly?

It is even more difficult for them, because they have lived together for half a century and cannot part with each other. It is especially scary for a man, the head of the family, who believes that he must earn and support his family.
I thought a lot: how to help an unbeliever? It is easier with a believer, you can find something positive in his illness, prove that he can still be useful to others, even when he is sick. This path will not be an active and active way of life, but with his presence, his attitude to illness and death, he can help his relatives and friends. Oleg was lying with us, he was not yet 50. He lay for a long time - cancer of the spine. His wife, Vera, is very good woman, after work she always came to him, spent the night here. And one evening, after many months, he says to me: “Frederica, I want to commit suicide. I can not do it anymore". I don’t remember exactly what I answered, something like: “Oleg, this is not a solution to the problem.” A few days later he says to me: "Frederica, I no longer want to commit suicide." - "Oleg, what happened?". He was not a deeply religious person, but he was always looking. “You know, somehow God showed me that I have a task. I will be a scout for all those who will come after me - and this is my special task. He never spoke about it again, and died very honorably - because there was something to live for.

- And what gives you the most work in a hospice?

A lot of things. Of course, it also brings fatigue, but I remember that Vladyka Anthony once told me: “Forget about yourself and your fatigue, because you are not at the center of life, but others.” AT ordinary life it's difficult. And here the Lord gives compassion, thanks to which it is easier to forget about yourself. This is a school like no other - you gradually accustom yourself that the dying person in front of you does not need you as such, but that you with God help opened his eyes to life so that you could at least just sit with him. You have to be able to be silent with someone. If the medical staff is closed for fear of death, then the dying patient will not be able to become open, close to his illness. I think that it is extremely important for each of the hospice workers to find their attitude towards death.

It seems to me that this is a special mystery and a gift from God - to be with a person who is dying, even if he dies not well. This is clearly where we are heading. You can talk about this even with other patients - give examples that we had such and such people and they died with such dignity. And everyone thinks: how will I die? It is a pity that our patients are not buried in our church, but taken away - it seems to me that such services would help many of our patients to better understand life and death. I am often told that one cannot take everyone to heart - but without this it is very difficult to work here. When I was still living in England, to my complaints that I had no strength after work, Vladyka said: “If you want to give something to people, you have to pay for it.” Very strict and very simple. There is no use in self-pity, especially when there is such a great need and great sorrow before you.

Here you learn to develop your heart, to open up more fully not only before people, but also before God.

Frederica de Graas, a volunteer at the Moscow Hospice No. 1, was interviewed by Petr Korolev, Chief Editor magazine "Meeting"
Published in the 25th issue of the student magazine MDA and S "Meeting"
www.miloserdie.ru

This article is devoted to such a structure as a hospice. What it is, many know only approximately: most ordinary people- accidentally reading or hearing somewhere and something, doctors - from the experience of American or European colleagues, and journalists - from various sources.

This situation is not accidental and is caused by a misunderstanding of the tasks solved by hospice institutions. When and how did the first hospices appear? What goals and objectives do they solve? What is a children's hospice? We will try to answer all these questions in detail.

What are they needed for?

Quite often, the concept of "hospice" is associated with isolation and a place where last days seriously ill and dying people live far from the whole world. However, this is not true. The symbol of the hospice is the fading human hands candle. It is this symbol that helps to reveal the essence of the assistance provided to the seriously ill, and to clearly explain: hospice - what it is. In such clinics, they carefully and reverently treat sick and dying people, sympathize and empathize, provide them with decent care and pain relief, help overcome spiritual, physiological and psychological problems caused by illness.

What does this word mean?

Initially, the word "hospice" arose in Latin from the merger of two roots - hospitium and hospes - "hospitality". Subsequently, the word passed into Old French as hospice and retained the same meaning that it had in Latin. In the Middle Ages, this was the name of the houses where travelers stopped to rest during the pilgrimage to Jerusalem. During long journeys the pilgrims were sick, and in such hospices they were provided with all possible medical care. Together with the pilgrims, the word "hospice" came to the British Isles and English language, from where it passed into other European languages ​​in the 19th century.

History of appearance

Hippocrates, who is considered the "father of medicine", believed that doctors should help only those who have a chance of recovery, and hopeless patients should live out their lives without participation and attention. A similar approach to the dying was practiced in Europe until the widespread dissemination of Christianity.

In the French city of Lyon in 1842, Jeanne Garnier, a young woman who lost her entire family, organized the first hospice. What was it at that time? Hospice "Golgotha", that's what it was called, for the first time provided an opportunity for terminally ill patients to live and die with dignity. Irish nuns support Jeanne Garnier's idea and open a hospice in Dublin Mother of God in 1879. In 1948, Cecilia Sanders came to work at St. Thomas' Hospital in London, thanks to whose work the hospice movement spread throughout the world. Including the hospices of Moscow operating today were opened.

Modern history

Enough long time neither doctors, nor nurses, nor volunteers knew what proper care for hospice patients, and there was nowhere to get such information. Only in 1935 came out, which later became a classic palliative medicine, written family doctor Alfred Worcester's pamphlet "Caring for the Sick and the Dying". Purposeful training of nurses to work with incurable and dying patients began to be carried out by employees of the Marie Curie Foundation only in 1952.

In 1967, the St. Christopher's Hospice, founded by Cecilia Sanders, opened its own hospital in England, and since 1969 began to provide outreach services. In the same year, the book “On Death and Dying” by Elisabeth Kübler-Ross was published, which managed to turn the ideas of physicians of that time about the states of a dying person.

Among the socialist countries, only in Krakow, Poland, in 1972, the first hospice appeared.

Hospices in pre-revolutionary Russia

For the first time, such a medical institution was opened in Moscow in 1903. The initiator of its creation was the professor of Moscow State University, a practicing oncologist L. L. Levshin, who organized the fundraising for its construction. The largest financial contribution to its organization was made by the well-known Russian patrons Morozov. That is why this institution bore their name for many years. This oncological hospice accepted only cancer patients at the last, terminal stage of the development of this disease. However, over time, he lost his functions and was reborn as a research institute dealing with oncology.

What about today?

Until 1990, Soviet people did not know about the hospice, what it is and why it is needed. Seriously ill people died at home, in the arms of relatives who did not know how to alleviate their suffering, or hospital beds almost forgotten by the medical staff. First hospice in modern Russia was opened in the village of Lakhty near St. Petersburg in 1990 at the initiative of the English journalist V. Zorza, who thus fulfilled the dying wish of his daughter Jane, who died at the age of 25. The psychiatrist A. V. Gnezdilov took a great part in this so that the hospice opened and began its work in the city of St. Petersburg.

In the early 90s of the XX century, a special Board of Trustees for the creation of hospices was created in the Soviet Union, chaired by Academician D.S. Likhachev. In October 1993 in Moscow, on the initiative of E.I. Moiseenko, who worked at the Institute of Children's Oncology and Hematology, created the first home-based children's hospice for children with cancer.

In 1994, thanks to the efforts of V. Zorza, the First Moscow Hospice, headed today by V. V. Millionshchikova, was created.

How many?

Today we have about one hundred hospices, which is very small for such big country like Russia. WHO estimates that there should be one hospice for every 400,000 people in the population. That is, if we count, our country lacks at least 250 such medical institutions. Those that exist do not always meet the requirements and standards. The hospices in Moscow and St. Petersburg are the best equipped, and their number in these cities practically corresponds to WHO calculations. For villagers and those who live in the provinces, it is difficult, almost impossible, to get into such an institution.

Hospice is the last refuge for the terminally ill when medicine is already powerless to help. Hospice is a slow dying within the walls of a government institution, saturated with the smells of decay. Hospice is the acceptance of death when it becomes already quite tangible. Approximately with such stereotypes we associate similar institutions. And if you imagine that this hospice is for children?

Therefore, when I was offered to travel to St. Petersburg and get acquainted with the activities of the NGO for pediatric palliative care for minors with serious and incurable diseases, I thought for a while. Due to natural impressionability, it was difficult to decide to see what subconsciously seemed to me as a layman. However, on the other hand, as a doctor, moreover, a father of two children, it was interesting for me to come into contact with this type of medical and social activity, which is not so widespread in Russia, and see everything with my own eyes.

In general, the idea of ​​creating a Petersburg children's hospice arose back in 2003, when, through the efforts of the archpriest Alexandra Tkachenko was organized Charitable Foundation "Children's Hospice" At the same time, there were simply no such samples, the experience of which could be adopted, in the country. Everything was built on a whim and on enthusiasm. Of course, not without the support of the city authorities and private investors.

Initially, having received a license to conduct medical activities, assistance to seriously ill children was carried out on an outpatient basis, that is, there were mobile teams providing pre-hospital nursing pediatric care, outpatient care, specialized support for pediatric oncology with the necessary socio-psychological component, and by 2010 the first stationary institution in Russia, providing comprehensive palliative care to children - St. Petersburg State Autonomous Healthcare Institution "Hospice (Children's)".

1. This building of the former "Nikolaev Orphanage" (Kurakina Dacha), by the way, is an architectural monument of the 18th century, transferred to the hospice as a room. At the time of its transfer, it was actually in disrepair, and the project for its reconstruction, in addition to strict requirements for the protection of monuments, had to take into account the infrastructure necessary for a medical hospital. Thanks to the incredible efforts of the designers, it was possible to combine all this. So - outside the house seems to be wooden (as expected), but inside is a completely different world.

2. Next to the body surrounded by so loved ones varlamov.ru modern urban high-rise buildings - a well-groomed playground.

3. Let's look inside?

4. What does it look like? School? Polyclinic? Private educational center? Does it look like a hospice in the way that is still rooted in our heads?

5. You can talk platitudes - a feeling of home comfort (it tastes good, but we won’t argue about color here), an atmosphere of confidence and positive emotions. It's not that important. The main thing is not a hospital with white-tiled walls and rusty gurneys along them.

6. On the walls are real paintings (not reproductions), including those made by students of the St. Petersburg State Academic Institute of Painting, Sculpture and Architecture named after I. E. Repin.

7. Meeting with the hospice staff. By the way, this room is also a classroom for developing and creative pursuits, and not only textbook ones, but using music recording, video editing and even creating your own cartoons.

8. Meet - this is the same Alexander Tkachenko. Not a strict, frowning obscurantist archpriest who thinks in dogmas, but quite a lively charming interlocutor with a great sense of humor, able to captivate the interlocutor and completely immersed in this whole story. Not forgetting, however, about the family - and he, for a second, has four sons.

9. Here, for example, is a card index containing data on all the inhabitants of the hospice. For reference: the hospice is designed for 18 beds around the clock, 10 day beds, as well as the organization of work mobile brigades at the rate of 4500 trips per year. At the same time, there are licenses for all necessary activities, including those involving the use of narcotic and strong drugs.

10. Round-the-clock medical control.

11. And this is a creative team, thanks to which new ideas are created for an interesting, and most importantly, as less painful life as possible for children. Precisely life, not existence and survival.

12.

13. One of these notions is the sensory room. Its main purpose is classes with relaxation and polysensory stimulation, the purpose of which is emotional discharge, overcoming protracted crises, and most importantly, establishing a trusting contact between children and specialists. Look - here are light fibers, and a swing-petal, and a board tactile sensations, and a multimedia projector with a screen.

14. An interesting detail of the hospice is a board on which everyone can express their own thoughts to alleviate the suffering of others and receive additional strength for life.

15. Lucky - during a visit to the hospice, there was just a concert for ... I don’t want to say the word "sick" or "patients", let it be - for the inhabitants of this house.

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20. One of the game rooms, divided into several spaces - a development zone motor functions, a zone for the development of intellectual functions (games, puzzles, constructors) and a zone for the development of social skills, where toys for role-playing interaction act as means.

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22. In the basement there is even a swimming pool with hydromassage and other bells and whistles. Are we at the hospice? By the way, the designers of the building were against the installation of the pool, but the archpriest managed to convince them. After all, if, for example, a child needs to be baptized, then where to get the "Jordan"? In general, we came to a common denominator.

23. Various "self-propelled carriages" that make life easier for children with limited mobility.

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25. Pharmacy and warehouse of medicines.

26. The ground floor of the hospice is completely devoted to the staff and is more technical. However, even here there is a design, perhaps controversial from an artistic point of view, but certainly not giving the feeling of being in some kind of morgue.

27. Behind these doors, for example, are refrigeration units where food is stored.

28. Although ... The morgue is here too. Well, not the morgue, of course. This is just a room where a family says goodbye to a dead child. It's called the sad room. Here is a gurney covered with disposable linen, as well as a candle and an icon, which, of course, can be removed if the family's religion requires it.

29. There is also a rack with children's toys and a shelf with medicines that the child's parents may need.

30. When someone in the hospice dies, this candle burns at the reception for several days.

31. We rise to the second floor. It is the main one, since it is here that children's wards are located.

32. Nursing post.

33. And even a separate room for the cat.

34. Parents spend almost all the time with very small inhabitants.

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36. And this boy is already quite independent. He is erudite beyond his years, reasonable, it is quite possible to communicate with him as with an adult. Many have noticed that severe illness make children older and wiser much earlier.

37. We will not disclose names, surnames and diagnoses.

38. By the way, this miniature Cologne Cathedral was assembled by a young designer so carefully that Alexander Tkachenko is simply delighted. In any case, the local residents need such attention like air or that same nutrient solution.

39. Next to the treatment room.

40. And this is a block intensive care for the heaviest children who require round-the-clock supervision and support, where, in addition to functional beds, there are sofas for parents. An interesting and probably symbolic detail - the ceilings are decorated in the form of a clear sky with balloons flying up.

41. Well, illness is illness, and dinner, as they say, is on schedule.

42. What do we have on the menu today?

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44. And as many as twelve wall clocks on the wall. Also a symbol?

45. And on the uppermost attic floor there is a house church in honor of St. Luke (Voyno-Yasenetsky), where services are held weekly. It is open at any time and there are candles completely free.

A terminally ill child ... This tragedy can happen in the life of each of us, and then he gets up main question: where to look for support when there is no more hope. The motto of the children's hospice "House with a lighthouse" - " It's not about death, it's about life". The hospice cares for children with incurable diseases, and it was their stories that formed the basis of the special project “Time to Live” on “D o by car." Premiere - 8 April.

Often friends and doctors tell moms that they can't do it alone when dads leave them. Children are not taken to kindergartens and schools, offering to “give birth to a second”. And the worst thing is that little patients are not provided with qualified medical care, doctors give up on them and do nothing while the child suffers from pain. "Domashny" will tell about hospice patients and their mothers, about doctors and people who have dedicated themselves to helping children, and will also try to destroy myths about incurable diseases and how you can live with it.

Myth one " You can't do it alone»

According to statistics, a third of fathers leave families with a disabled child and no longer participate in their lives. Young mother Daria Guseva has been raising Sashenka for three years now. The child suffocated during childbirth and now lives with a diagnosis ischemic lesion CNS. The girl does not see, does not hear, does not move, but lives and breathes with the help of a tracheostomy and an oxygen concentrator. The father abandoned the family as soon as he found out about his daughter's diagnosis and Daria's decision not to send the child to a boarding school. But the mother says that she is happy to be able to give her child the very best.

Myth two " Incurable children do not need to be taught»

Of the 198 preschoolers cared for by the House with a Lighthouse Children's Hospice, in Kindergarten now only 24 children go. Only 50 students out of 155 study. One young man out of several dozen managed to enter the university. In our country, they do not understand why a terminally ill child needs to study, but hospice children dream of going to school. Artem Komarov is nine years old, but he goes to the second grade. He has a congenital muscular dystrophy The boy can't even sit up by himself, he has very weak arms. But on an electric wheelchair bought by the hospice, he goes to an ordinary school in the city of Dubna in the Moscow region, the director of which wanted to take the boy, despite a bunch of problems with installing lifts and ramps. The hospice workers helped Artyom make his dream come true and were able to negotiate with the school where Artyom was accepted despite his diagnosis.

Myth three " If it can't be cured, then it can't be helped.»

Little Fedya Raspopov was dying quietly in an orphanage. In his medical history - a huge number of diagnoses and the staff did not understand how to care for him. Once upon a time Orphanage invited a visiting hospice service to train nannies. This is how it started amazing story. Successful businesswoman Tatyana Konova responded to a Facebook ad from the hospice to bring Fedya a toy. She fell in love and took him to her, became a foster mother. Unfortunately, the boy cannot be cured. But how striking is the contrast between his life in the orphanage without special care- and at home, with my mother, with the support of the hospice.

Myth four " Hospice is when nothing can be done»

Thirteen-year-old smiling tall handsome man Maxim Bezugly played football with friends. The jump, the other, hung on the gate - they swayed under the weight and fell. The top bar hit the head, breaking the bones of the skull. Doctors said that the injury was incompatible with life, that he would always be on a ventilator. The tragedy divided everything into “before” and “after”. There was a lot, but now Maxim is at home. Breathe and eat on his own. Every day, parents do something that makes Max feel better.

Chief Physician hospice Natalya Savva talks about how quality care prolongs the life of children and returns joy to it.

Myth five " If death is inevitable, nothing can be done»

Mom Elena in December 2016 buried her daughter Pelageya, who was under the care of the hospice. She had an innate genetic disease, she lived nine months in hospitals and intensive care units. The girl's heart stopped. Now Elena admits that during these 9 months only hospice workers were with her. They helped her accept the inevitable.

Life is always stronger than death, even if the smallest and defenseless stand at the line. “Home”I am sure: even if there is almost no strength and faith left - “Time to live”!