“time to live” on “home. Is this the right attitude? About attitude towards death

A terminally ill child... This tragedy can happen in the life of each of us, and then 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 a special project “ Time to live " on "D o machine". 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 child." 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. “ Home ” will talk about hospice patients and their mothers, about doctors and people who have dedicated themselves to helping children, and will also try to destroy the myths about incurable diseases and how you can live with it.

Myth #1: 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 should not be taught"

Of the 198 preschoolers cared for by the Children's Hospice "House with a lighthouse", 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 cannot even sit by himself, he has very weak hands. 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.

The head physician of the 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 ” sure: even if there is almost no strength and faith left - "Time to live"!

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Fragile figurine of a teenage girl. On the pale face are burning Brown eyes. AT thin fingers with a bright manicure a cigarette smolders. There are beautiful pullovers and a mini-skirt on the back of the chair, a set of cosmetics in the nightstand. Natasha has just had an anesthetic injection and is smiling again.

Diagnosis: stomach cancer. Fourth degree. Final stage illnesses where doctors usually capitulate. As soon as death looms on the doorstep, they look away: “Your cancer is not curable. Go." But there are no other patients in the First Moscow Hospice. The diagnosis is the same for all, with variations in scary topic. Breast, lungs, liver, brain, prostate - malignant tumor can develop anywhere and start up its terrible sprouts anywhere. Of the twenty-six patients, only two are walkers. During the incomplete shift that I spent within these walls, two women died. There are days and nights when four people leave at once.

Nevertheless, it would never occur to anyone to call this beautiful mansion in the center of Moscow the house of death. On the contrary, terminally ill people who have gone through all the circles of oncological hell are returned here to a life in which there is no pain, anxiety and loneliness. Some are brought in in a critical condition, with heavy bleeding, unrelenting pains, unthinkable swelling, terrible bedsores. As a rule, such patients are not admitted to ordinary clinical hospitals. There, the doctors are aimed at winning, and this category of patients is from the category of unpromising ones. They will never get better.

If in the West the hospice is designed only for people living their last days, then here some patients are observed for years. One patient lay already 12 times. Those who cannot be relieved of pain at home, who are socially disadvantaged, or whose relatives need a temporary respite, are hospitalized. There comes a time when the body gives up. Man can't fight no more, it's defensive forces dry up. A hospice is a worthy life to the end.

There are five hospices in Moscow so far. This is 150 inpatient beds plus 600-700 patients who are in the care of the field service. It's still not enough, of course.

Life with a red stripe

Most patients know their diagnosis because surgery, chemotherapy and radiation have left no doubts. But some get into hospice straight from clinical hospital, where they were simply cut and sewn up again. Relatives hesitate to tell them the truth and ask the staff to keep the secret. Such patients have a red line in the medical history - a sign for the doctor that the patient is not in the know. Few people are philosophical about death. Cases are known when accurate prediction the day of departure was fatal.

When Natasha first received a referral to the hospice, she wept bitterly: is it really the end? And here she believed that she would still live. Because already six times doctors and nurses put her on her feet. “Recently I woke up at half past two in the morning and terribly wanted to eat,” she laughs. - I went to the sisters, and they were so happy! They opened the refrigerator: “Now we will feed you!”

Properly selected therapeutic complex, excellent care, good food, tender attitude, and the disease seems to give a person a vacation. How long? AT palliative care they speak cautiously: rather months than years, days rather than weeks. Sometimes it's about hours.

A choreographer by education, Natasha danced in an ensemble of border troops in the Far East. She was two years short of her professional pension. The illness began insidiously. Disturbed by nausea and for some reason back pain. For three years she was treated for a "stomach ulcer". When the doctors finally made the correct diagnosis, it was already too late. The surgeon, after removing three-quarters of her stomach and part of her pancreas, shook his head: "If only three years earlier!" Then "chemistry" and radiation therapy. Hair and teeth fell out, but Natasha did not lose heart. She managed to raise a good son, and together it is easier to resist trouble. Natasha began to get better. But one day ... The son did not return home, his body, or rather what was left of him, was found seven months later.

And the disease attacked with a vengeance. overdose of chemotherapy. Coma. Natasha prepared to die. There was no need to live ... She came for her elder sister from Moscow. Flight Vladivostok - Moscow Natasha remembers vaguely. She began to smile only in the hospice. Brave tin soldier back in line.

We sit in the bathroom and smoke. In the hospice they allow you to smoke even in bed. Smokers are placed together or in a separate room. When the patient's strength is barely enough to hold a cigarette, one of the staff sits nearby and extinguishes cigarette butts. There are generally amazing arrangements here. Even in the famous "Kremlin" there is nothing of the kind. For example, fixed visiting hours simply do not exist, because access to patients is open around the clock. Close people can live in the ward for some time if the patient's days are numbered or he does not want to be left alone. By the way, even four-legged visitors are not allowed to enter. Surprisingly, the animals immediately understand where they are and behave as well. educated people. Even dogs keep quiet. One orphaned cat disappeared for a month, and then returned and began to “treat” the sick: she traveled from ward to ward and warmed the most severe with her warmth. Fish, turtles and birds often remain in the hospice after the death of their owners.

The topic of euthanasia is never discussed here. Otherwise, the very existence of the hospice would be meaningless. Any doctor at the request of a relative to speed up the death of a loved one will answer something like this: “Could you?” He who does not experience suffering does not think about a lethal injection. The Dutch and Belgians have already voted for euthanasia, and in Germany, too, voices are increasingly heard in support of the last syringe. But this point of view cannot be considered in isolation from statistics. In the West, it has been calculated that in order to provide complete pain relief, doctors must prescribe 80 kilograms of morphine per million people per year. So, in Denmark they spend 69 kg of morphine, in Germany - 18, and in the Netherlands only 10.

In Russia, such statistics are not kept. However, according to the World Health Organization, in the same Denmark, 100 percent of patients are completely anesthetized, in the UK - 95, in the USA - 50, and in our country - only one percent!

Pain occurs when tumors irritate pain receptors in skin tissues, in joints, or in nerve endings. Today there are enough means to save a person from unnecessary suffering. However, in reality, people scream from hellish torment, because the doctor has the right to prescribe a strictly defined amount of strong painkillers for exactly five days. Relatives are forced to save and count so that the dose is enough for the weekend and holidays when the drug is not available.

fourth degree

... Galya lost her husband in the hospice two months ago. Cancer ate Eugene in less than three years. From a strong, flourishing man who weighed 102 kilograms before the illness, a shadow remained. The scales showed only 47 kg. The diagnosis left no illusions: stomach cancer in last stage.

I torture her about the symptoms: did the disease really not manifest itself in any way? No, she says, there were some discomfort such as burning, nausea, slight discomfort - not a cause for great concern. Moreover, the husband, a year before the diagnosis, suffered abdominal surgery, then he was examined in a good clinic: ultrasound and gastroscopy, they did not find anything. But he was losing weight so quickly that his family became worried. Another doctor noticed something was wrong: “Urgently see an oncologist!”

The diagnosis was not hidden. They kept silent about only one thing: it was too late to operate. Galya rushed to call different clinics. "Oncology? asked the confident voice. - We are treating! Fourth degree? Sorry".

Evgeny was registered with the First Moscow Hospice, but he was in no hurry to go to bed. Field service employees came home, gave injections and dressings. And then the bleeding began, which could not be appeased at home.

He spent less than a month in the hospice. The only walking patient at that time. It got so much better there that he even told his relatives: “If I feel like this, I’ll live to see the summer!”

She remembers the last day minute by minute. At eight in the morning, my husband called: "You are not in a hurry." It was a frosty Sunday afternoon and a route that had already become familiar. Twenty minutes to ten Galya entered the hospice. The door of the ward was wide open, the doctors were doing something. The husband was still conscious, but he had exactly 67 minutes to live.

...First breakfast: ham, cream, semolina or oatmeal porridge, tea with lemon and coffee. Second breakfast: fruit juice, pear, orange, kiwi, yogurt, applesauce- to choose from. Lunch: two types of salad, pea soup or broth, marinated fish, mashed potatoes, peas and pineapple compote. For an afternoon snack, yogurt or mineral water. Dinner: squash caviar, green salad, beef stroganoff fried meat or meat puree with garnish and tea. Before going to bed, they spread kefir, fermented baked milk or milk with honey - if desired. This is the menu for one day.

As long as a person has an appetite, they try to pamper him. Some admit that they could only afford such food for a holiday. The dishes are tasty and varied, but the portions are small, because half a liter of soup, set according to the norm, will not be mastered by a sick person. With cancer, people shrink in front of their eyes, the tumor devours calories and grows. Food often becomes a burden. Therefore, any gastronomic whim of the patient is immediately fulfilled. And they will fry potatoes, and they will bring herring, and they will run away for vodka. The hospice knows these patients want something for only fifteen minutes.

There are almost three staff members per patient. These are doctors, nurses, orderlies and volunteers who care for the sick for free. Still, the hospice is far from being fully staffed. Despite the high salary, social benefits and pleasures such as a sauna with a swimming pool and a solarium. People don't last long here.

Of those with whom I started exactly ten years ago, only six people remained, - says chief physician Vera Vasilievna Millionshchikova of the First Moscow Hospice. - Someone breaks down after a year and a half, someone - after three. Death, tears, grief are always there. This is not even a resuscitation extreme, but much more difficult. Resuscitators pull a person from the next world and forgets about him. And we have been closely communicating with the patient and his family for years, becoming close friends. These bonds don't last long.

Despite the shortage of staff, getting a job here is not easy. Hospice holds the bar high. Sixty hours of unpaid service and three months probationary period- a condition for candidates. Someone leaves on his own, someone is shown the door. The squeamish, callous and greedy have nothing to do here. The hospice has a well-established system that excludes extortions accepted in hospitals. Everything is free here: medicines, massage, and care. Patients and their loved ones never have to humiliate themselves.

Owl hour

With the doctor on duty, Olga Vyacheslavovna, we go on an evening round. She has been working here for the fifth year. At first, she flew out, as if on wings, rejoicing in the sun, and the wind, and the smile of a random passerby. Learned to understand that all her troubles are nothing compared to this test of humanity.

Measurement blood pressure, light inspection - everything is as usual. “You don’t have to endure the pain,” the doctor advises the patient with a face as white as a sheet, “press the call button right away. The longer you wait, the harder it is to take it off.” Diagnosis: sarcoma, a malignant tumor of the connective tissue.

In the next room we find the family in in full force. Came to visit my mother. A tough spectacle. A deliberately cheerful father, a grandmother crushed by grief, quiet children. “The pressure is excellent,” the doctor rejoices, “even into space!”

In a spacious ward for four old women of the same age. A beautiful round table, stylish armchairs, a TV, a refrigerator - the atmosphere of a good hotel. Elderly patients have already been patiently spoon-fed, made an evening dress for everyone, changed diapers. “Zoya Georgievna, sing! Do you remember the words? - a young nurse addresses a granny with a gray-haired tuft, pulled together by a cheerful rubber band. “I remember,” the old woman agrees and tightens the verse.

I can't go to the next room. Olya dies there. By the bed, in turn, replacing each other, my mother and two closest friends are on duty. Mom spent the whole day with her daughter, they persuade her to go home.

Olya is only forty-seven. She has brain cancer and numerous metastases, - says Olga Vyacheslavovna. - Happened last summer epileptic seizure- so the disease was designated. The examination revealed a tumor. I'm afraid she'll be gone tonight. The pressure drops.

Olya will not be injected with cordiamine to increase her blood pressure. What for? To extend the extinction for another day? There is no intensive care unit in the hospice. No devices for artificial ventilation lungs, no defibrillators - anything that can delay dying. Here they do not take blood ten times and do not take x-rays.

In another ward with the same diagnosis lies Nina, a neuropathologist in the recent past. “Colleague,” the hospice staff sighs about the patient. Nina in these walls is not the first time. Her illness had already taken away her speech, immobilized half of her body.

A couple of days ago I saw Nina. The nurses took the patient out to the hall, more like a winter garden, in which beautiful plants, a small waterfall murmurs and birds sing. “Ninochka, you look good today. How beautiful you are, - Vera Vasilievna Millionshchikova admires and turns to me. “Is it true that she is strikingly similar to the young Tatyana Samoilova?” Nina smiles at us with her eyes.

People consider death to be the queen of the night, but this, of course, is not so. There is also no so-called “owl hour”. Patients leave at any time of the day. If this happens at night, relatives are not informed until seven o'clock in the morning. They subconsciously wait for this call. Almost everyone asks how it was. They are told that everything happened in a dream.

"Let her go..."

... A sheet of drawing paper is divided into two parts. On the left are the names of the patients and their birthdays. On the right are the dates of death, the ninth and fortieth days. It's accepted here. Ties do not break with the death of the patient. There are people who make sure to drop by the hospice to see a doctor or nurse. Some bring pickles, jams, embroidery, paintings, flowers. It happens that a person is not able to cross this threshold, then the meetings take place on neutral territory. Mothers who have lost children here never come. They only call.

The hospice accepts teenagers over 12 years old - the most difficult category for staff. Children are amazingly wise, they know everything about their illness and accept its conditions. They are rational and pragmatic. No arguments work on them, and even out of love for their mother, they will not do more than they can. At first, little patients do not want to communicate with anyone. Every day, doctors and nurses look into the ward for such a patient until he feels trust and sympathy for one of them.

The head doctor knows for sure: the nurse chosen by the sick child will not work in the hospice for a long time. First, she sits by his bed for hours, then brings goodies and toys from home, then visits on her day off. The bond between the two becomes too strong. Death little patient becomes such a blow, after which severe depression sets in. Either one or the other sister admits that now she is unlikely to decide to become a mother, but after some time, of course, they do.

AT young body cancer is literally on the rise. A person burns out in a matter of months. A man who just turned 32 recently passed away. Lena died the other day, she was only 34.

It seemed to us that she would leave on the day of admission. - Vera Vasilievna remembers all the patients by name. - She was hospitalized with confused consciousness, in a grave condition. And Lenochka lived for more than two weeks. Relatives hid the diagnosis from her, saying that it was osteoporosis, and she had breast cancer with metastases to all organs. The position of her relatives did not allow Lena to prepare for death, she clung to life very much. Relatives themselves want to be deceived, they are afraid to believe in trouble, and then they cry outside the door and hide their red eyes. They ask us not to say what kind of institution this is, although the staff wears badges, where, in addition to the name, there is an inscription “The First Moscow Hospice”.

Patients have their own hours. Many are waiting for something, whether spring, summer, and only then leave. People seem to follow a given program. One patient said that she had to live to see the birth of her daughter and see her grandson. She really looked at the baby and died the same night. Someone wants to wait for their anniversary, someone gives himself the setting: “I’ll die in three weeks” - and The biological clock a person is inexplicably ticking until the appointed time. Sometimes it is generally impossible to explain from what source a person draws his strength. Here the mother dies, and the daughter cannot come to terms. She feels that she did not love, did not give enough attention, and begs: “Mommy, don’t die!” And mom takes a breath again. It happens that doctors in such cases ask: “Let her go!”

“Lord, I would die,” the woman, tortured by the disease, will sigh. “I'm tired of living, I'm tired of it,” a roommate will answer her. “Let me go quietly,” the third will ask. In fact, no one wants to die. Neither the elderly, nor the young, who, it would seem, live and live, nor the young, who have not yet had time to do anything. But only the elderly leave easier.

They are ready for death, - Vera Vasilievna says quietly. - The body is wise, and the disease is also wise. She is gentle with the patient, does not force him to do more than he can. A person fights only as long as it is enough for him. Refusal to eat is a sure sign that the patient has no more than a week left. He already falls into a semi-conscious state and looks there, beyond the distant horizons.

Sometimes people manage in the last days to obey someone, thank someone, make important orders. A husband confesses his love to his wife after half a century of marriage.

Priest Father Christopher comes to the hospice every Tuesday, confesses, takes unction, takes communion. By big holidays serves the liturgy. In ten years there were three or four baptisms and one wedding. In a small chapel, a famous playwright married his wife.

But the farewell scenes that are so sincerely described in novels or played in movies are extremely rare in real life. No one knows for sure who gives the signal for death, who turns off the light of life. A person weakens, breathing becomes shallow, the mind goes out. Death comes unnoticed. People leave peacefully. There was, however, a patient with a very heavy character who fought fiercely for her life. She died in anger, having managed to whisper to her mother sitting by the bed that she was cursing her. Such cases are rare.

Seifulla, a short, stocky man with a blush from walking, unlike other hospice residents, does not look terminally ill. “I still have muscles on my legs,” he smiles and shows me strong white calves. And then he takes out the clinic outpatient card, where it is written in black and white: "Cancer prostate and multiple bone metastases. He lived a decent life, raised wonderful sons. He loved sports, went to the pool, practiced according to the Nikitin method. Where did this disease come from?

Wasn't it when Seifull's soldier served in naval forces and was on duty at a signal and observation post under radar antennas that emitted high-frequency currents? Or when he, like all students of Uzbekistan, worked in the harvest of cotton treated with poisonous herbicides?

Why is this happening? It is impossible to answer unambiguously. How did a girl with an unformed breast get breast cancer? How to explain the “dandelion effect” in melanoma, which, as soon as you touch it, scatters dozens of metastases throughout the body? Or casuistic cases when a person has a lot of metastases, but for some reason the tumor that gave rise to them is not found. Oncologists are sure of one thing: there are no miracles in this case. There are only misdiagnosis.

He was given various diagnoses from osteochondrosis to pyelonephritis, and time worked against Seifulla, because there were fewer and fewer of him left. He is an obedient patient and fulfills all the prescriptions of doctors, but the cancer stubbornly takes away his strength, and Seifulla does not want to live to see the day when he becomes helpless and becomes a burden for his family.

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 St. 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.

16.

17.

18.

19.

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.

21.

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.

24.

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.

35.

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?

43.

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.

It's been exactly two weeks since I've been living in a hospice.

And this is not a figure of speech, I just live, do not live, do not worry, or something else. I live and breathe deeply, even despite my asthma and slowly recovering bronchitis.

I thank God for what is under New Year I got into this space of love called the First Moscow Hospice.

I am grateful to Vera Vasilievna Millionshchikova, who is undoubtedly a holy woman, because only a holy person, with God's help, could create such a thing.

I am grateful to Nyuta and Diana Vladimirovna for the fact that they are outwardly modest, but in fact very large-scale, serious, thoughtful, constantly doing their job, giving themselves to other people. I am grateful to my wonderful Zoya Vladimirovna (doctor), who sensitively and thoughtfully does her job.

I am grateful to Father Christopher, mother Siluana, Milena. Could I have thought that I would take communion at the Throne like this! I am grateful to the magical Frederica (it is a happiness to know such a person and have the opportunity to communicate).

I am grateful to the nurses and nurses (Dima, you are wonderful!), who not only perform their work smoothly, clearly and quickly, but also fulfill small stupid requests like “can I have a satin ribbon” or “I want a picture with cats”, make surprises , joke, help take care of themselves ("here's coconut oil for your face and hands").

I am grateful to the volunteers, thanks to whom I met Katyushka Borodulkina, made friends with the very beloved dog-therapist Masya, thanks to whom I and my loved ones even had more than one gift and Santa Claus, thanks to which we listened to poems and music, thanks to which I have well-groomed nails and a neat haircut…

You can continue indefinitely, because love knows no boundaries. I am grateful to my friends. It is surprisingly simple how each person from my relatives, friends, acquaintances could open up in this space of love and give me a particle of understanding, sympathy, tenderness, creativity, care. Thank you my good ones! I'm just happy that I have all of you.

When I entered the hospice, it was very difficult. For us, it's the limit. I had intense pain, which could not be stopped even with a combination of very serious drugs. I was suffocating because the weakened body fell ill acute bronchitis, and the drugs gave me asthmatic attacks, which came one after another, I started having cramps from pain and temperature, my legs and arms failed.

First Moscow Hospice

I felt like I had reached the edge of an abyss. I was extremely scared for myself, but even more so for my loved ones. I saw how I frighten those who love me with my terrible deteriorating state of health. It's very scary when close person suffocating, in great pain, and do not know what to do.

Zakharka passed this horror, we tried, but I understood that the New Year for our family could become scary.

For Andrey, for 2-3 such days, the ends of his hair became covered with frost, as it were ... Only 3 days. I am very grateful to my doctor, to the fact that my good, prudent Zoya Vladimirovna, knowing my well-being, anticipated our decision and said that if anything, they were waiting for me in the hospice.

But, I must say, I resisted to the last ("how so, I wanted to make a duck in Czech for Christmas"). This terrible day with asthma and the understanding that I have no right to doom my loved ones to this horror became decisive.

The first day at the hospice was difficult for me. True, I slept for almost a day, since it was the first day when the pain went away completely. First day in many, many weeks. But I woke up in anxiety, feeling that I was completely, completely alone, like a grain of sand in space, that New Year and Christmas were ahead, and I was in a hospice. All this burned.

But I just didn't know. I did not know then that hospice is about life. I have never had such a fabulous New Year, such a wonderful Christmas. I have never had so much love... I have a feeling that God is even closer now. A hospice is a small piece of heaven here on earth.

I am so grateful to God that he gave my loved ones and me such an experience and the opportunity to rest my soul and body after many, many labors.

What follows after all this? Should - live!
Sew sundresses and light dresses from chintz ...
Do you think all this will be worn?
I believe that all this should be sewn!

I will live. Stage 4 is time, sometimes short, sometimes long. The key to all of this is the absence of pain. It shouldn't exist at all.

I have a lot of ideas and plans (I even have a business idea, and I will stick with some of you in the near future, hehe), and I will do everything to the best of my ability and ability ... As God wills. And I will be glad, friends, for your support, your communication, ideas, word, deeds, creativity. Let's create, enjoy and love. This is important and very wonderful.

Well, in general ... Czech duck should be cooked, after all, because it is a culinary masterpiece :))) And I really invite everyone who arrives to it :)

And one more thing... For a considerable number of my friends, the year suddenly began very difficult, I wrote about some of my friends, I didn’t write about some, but they are. I ask you to pray with me. I read the 90th psalm for all those who suffer. I ask you to join too.

And no matter what misfortune touches you, please know that it is at this moment of pain, despair and fear that the Lord is very, very close, and most likely - carries you in his arms. It can be felt. It is worth stopping for a while, shutting up and listening.

Hospice is called medical institution in which terminally ill patients are treated in the last stage of the disease. 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 hospice outreach service that provides palliative care 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 system of medical care in the country cannot 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 facility gives you the opportunity to live more last days and also better quality.

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.