Archpriest Alexander Tkachenko: There is no tragedy in the children's hospice

People who needed help for their seriously ill children came to the Nikolo-Bogoyavlensky Cathedral, where Archpriest Alexander Tkachenko served. At first, the temple helped from time to time: it raised funds, bought medicines, invited specialists for additional consultations, but, according to Father Alexander, “I wanted to do a little more.”

“At first it was just an initiative group of people. We looked after six or seven patients. But as our work became known, more and more people started contacting us. By the time the Children's Hospice Charitable Foundation was registered, there were already more than twenty of them,” Father Alexander recalls.

In 2003, on the initiative of the St. Petersburg diocese and the blessing of the Metropolitan of St. Petersburg and Ladoga Vladimir, the Children's Hospice Charitable Foundation was organized with the aim of creating an institution to provide palliative care to children with serious illnesses. Under the leadership of Archpriest Alexander Tkachenko, the Foundation began its work as an outreach service, consisting of social educators and psychologists.

In 2006, the Children's Hospice Charitable Foundation established the Children's Hospice Medical Institution.

Governor of St. Petersburg V.I. Matvienko supported the initiative to create a Children's Hospice and allocated resources from the budget of St. Petersburg for the purchase of medical equipment and three ambulances. Having received a license, the Medical Institution "Children's Hospice" hired nurses and doctors and began to provide palliative care to children at home.

Over the following years, about 40 hospice staff provided medical, social and psychological assistance to 200 families in St. Petersburg and the Leningrad region. At the time of the creation of the Charitable Foundation and the Medical Institution "Children's Hospice", there were no samples in the country that could be used as the basis for a medical institution for the provision of palliative care to children. The work in most cases was based on intuition and a sincere desire to help children and their loved ones. From the very beginning, two key areas of work were identified - medical care and psychological support.

The first years of work with seriously ill children included regular medical and nursing home visits and various outreach activities. Basically, all the work was done remotely: once a week, each registered child was visited by a nurse, at least once a month or more often by a doctor. If necessary, a specialist was brought to the house for consultation. They delivered medicines and food packages for low-income families to their homes on their own. Both psychologists and volunteers worked with children and their relatives. Trips were organized 2-3 times a month - to theaters, to concerts, to museums. After the child left the life of the parents, they did not leave without attention - everyone was guaranteed the help of a psychologist. The names of all the departed children were entered in the book of eternal remembrance of the Church of the Assumption of the Blessed Virgin Mary at the Northern Cemetery of St. Petersburg.

Almost all patients needed specific medical care, which was difficult or impossible to get in city hospitals at that time. “No one needs us with our children, only you can help us,” the parents said. Using various opportunities, acquiring more and more new knowledge, the workers helped children at home and believed that someday it would be possible to do this in a hospital.

In 2009, a separate budget line of St. Petersburg allocated funds for the reconstruction of the building of the former orphanage in the Kurakina Dacha park and the purchase of equipment. When carrying out the project for the reconstruction of the building into a modern medical institution, the requirements of the law on the protection of monuments had to be taken into account. According to the security obligation, the building had to be restored with full preservation of its appearance, dimensions and made of historical materials.

The history of the appearance in St. Petersburg of a stationary Children's Hospice for seriously ill children is the story of a dream come true. She was born in the soul of one person, father Alexander Tkachenko, who inspired the people around him to work with him for its realization. The essence of palliative care is to support where there is no cure. Practically no one, except the patients themselves, could then teach the hospice staff what kind of help and support they need. Coming to the families, the specialists felt how lonely the children and their loved ones were in their trouble, and based on daily experience, they formed the main task - to always be with them. To be there to overcome difficulties together, support in difficult times and help family members learn to fully communicate with each other, make their life more eventful, interesting, joyful - as much as possible.

Medical institution "Children's Hospice" continues to provide medical, social, psychological and spiritual assistance to children in the Leningrad region. More than 70 families living in the region are under the care of the field service of the Medical Institution "Children's Hospice". Families are regularly visited by a nurse and a pediatrician, and medicines, sanitary products, enteral nutrition, and food packages are purchased for them. Parents are taught how to care for children with serious illnesses.

For children from the Leningrad Region and other regions of Russia, a Palliative Care Center was opened entirely on private donations in the village of Olgino, Kurortny District of St. Petersburg. The center is designed to provide temporary housing for seriously ill children and their loved ones who come to St. Petersburg for treatment. In case of urgent need, up to 10 families can be accommodated at the Center at the same time. The Palliative Care Center provides patients and their loved ones with psychological assistance, art therapy and play therapy, spiritual support, and organization of leisure activities.

Every year, the Medical Institution "Children's Hospice" conducts large-scale charitable events aimed at medical and social support for children with severe and incurable diseases. The purpose of the action "White Flower", dedicated to the International Children's Day on June 1, is to raise funds in favor of the wards of the institution. Within the framework of the Dreams Come True project, the New Year wishes of seriously ill children are realized through the joint efforts of medical institutions, philanthropists and volunteers.

It's hard when adults get sick. It's scary, sad, sad. They say about them: “I could still live ...” And when children suffer from incurable diseases, this generally hardly fits into the head. Children usually have so much life...

There are more than 40,000 terminally ill children in Russia. So far, there is only one state children's hospice - in St. Petersburg. Its founder and permanent leader, Archpriest Alexander Tkachenko, likes to repeat: “Hospice is not about death; hospice is about life. How from an institution, from the mere name of which a chill runs through the skin of many, it was possible to make a house of smiles, read in the material "MK".

A nice historic building in the depths of a chic park with centuries-old oaks and maples. A few minutes walk to the Neva. There, from the embankment, you can take a boat and find yourself, for example, on Valaam or in Kronstadt. But you never know where else! There are so many opportunities that life gives people when everyone is healthy. But most do not understand that even just walking in the park is already a great happiness.

The inhabitants of the hospice - both patients and staff - know how to appreciate every minute. After all, what is pain, in the hospice they know very well. They also know that physical pain can be removed with injections, but with mental pain everything is much more difficult, it can be much harder to endure. But the most important thing is that here they also know what life is and how to make it happy, bright, calm, even if only a few days.

The situation was changed not by a doctor or an official, but by a priest

There are many incurable childhood diseases - there are more than five hundred of them in the official medical list. Among them there are those when the count goes literally for days.

“Until recently, children from hospitals were simply discharged home with the words: sorry, we can no longer help you,” recalls Father Alexander, founder and head of the St. Petersburg Children's Hospice. - And now they are being discharged. And although only we, in St. Petersburg, have a stationary hospice, such families are immediately picked up by government services. A team comes to the house: a doctor, a psychologist, a social pedagogue. They draw up a plan of treatment (pain relief) and assistance - psychological, material and human. Sometimes parents just need to understand that they are not alone. And sometimes you need the elementary - to be with the child so that the mother can sleep or go to the hairdresser.

It so happened that it was not an official or even a doctor who changed the situation in the country, but a simple priest. Father Alexander never had anything to do with medicine, just like with hospitals. In the early 2000s, he served as a priest at St. Nicholas Naval Cathedral. And people always come to the church who have difficult times in their lives. Often those who simply have nowhere else to go for help.

— There were several parishioners whose children were very ill. I tried to help them not only spiritually, but also financially: I collected money, looked for medicines, nurses. Apparently, he did it quite successfully, because there were more and more such wards. Then I decided to create a coordinated help desk. We called it "Children's Hospice", we helped at home everyone we found. The thing went. Two and a half years later, a medical institution was registered, two wards in a regular hospital were renovated, and the first department of palliative care for children was opened in it. Then the governor of St. Petersburg, Valentina Matvienko, gave us several ambulances to serve patients at home, it immediately became easier, of course. A little later, in 2007, it became possible to transfer the entire building to the children's hospice.

The St. Petersburg Children's Hospice is so far the only such institution in Russia. But his experience was used to create a federal legislative framework. Thus, Father Alexander did not just create a separate hospice. He generally changed the attitude towards terminally ill people in our country. Largely due to his efforts in legislation, and therefore in life, such a concept as palliative care appeared (a direction in medicine when the treatment of the underlying disease is impossible, but it is possible to improve the quality of life and save the patient from side effects).

The second state stationary children's hospice, made on the model of St. Petersburg, is about to open in the Moscow Region. A hospital was opened in Kazan a year ago. A children's hospice should also be opened in Moscow.

“Any forms of helping suffering families are good,” Father Alexander believes. - The main thing is that people are not left alone with a terrible disease.

Five star hotel with a sad room

St. Petersburg Children's Hospice is already thirteen years old. He has about 300 patients. Most are at home, there are 23 children in the hospital - the area no longer allows. Someone gets here for a planned hospitalization. And others when the disease becomes absolutely unbearable.

To be honest, the building itself bears little resemblance to hospital buildings. A pink wooden building - it once housed the summer residence of the Nikolaev orphan boarding school.

“I immediately liked this place,” Father Alexander recalls. — Quiet, calm and not very far from the center. And again, the park, which is nice to walk. You see, in the yard we organized a playground. All equipment is specially adapted, including for children in wheelchairs. The child himself, without outside help, can call in both the swing and the slide. I saw such a game complex in England, and our friends helped deliver it to St. Petersburg. And at the building, we completely preserved its external historical appearance - this was the condition of the Committee for the Protection of Monuments. I developed the content myself.

At the children's hospice, everything is special and made to order. Bedding in the wards is colorful and joyful, soft sofas, flowing curtains on the windows, a classroom with space on the ceiling. You can come to the hospice with your pets - cats and dogs. The dining room is more like a restaurant: a cheerful interior, a collection of funny clocks, shelves with toys and cute figurines along the walls.

“This is not only for beauty,” Father Alexander explains. - The child will be distracted by this doll, and mom will be able to put an extra spoonful of porridge into his mouth. You can also order something special from the menu. For example, red caviar. And why are you surprised, it happens that after chemotherapy this delicacy is put.

There are a lot of useful rooms in the basement: a left-luggage office, a psychological game therapy room, a swimming pool.

- The builders did not want to coordinate the presence of the pool. But seriously ill children really need it - this is both relaxation and training, and indeed all kids love to swim. Then I came up with the following move: according to the documents, we had already agreed on a hospital church, and I said that, as a priest, I definitely need a font in the church. So, according to the documents, we have this pool as a “font (with hydromassage)”.

On the second and third floors, there are wards that are more like hotel rooms, with soft sofas, plasma TVs, and a pleasant, homely atmosphere. And there is also an unshakable rule in the hospice: the ward is the personal space of the patient, it is strictly forbidden to enter here without knocking, whether it be the head doctor or the president.

- Distinguished guests often come to us. But we never change this rule.

There is also a cozy fireplace room where you can chat with your family, read books, just keep quiet. Of course, there is also a hospital church, services in which are conducted by the director - father Alexander.

The fact that the hospice does not look like a hospital is the most pleasant compliment for employees. When I noticed that it all looked like a five-star hotel, Father Alexander smiled:

- That's what we wanted. I thought a lot about what a hospice should look like. As a hospital, no. As a kindergarten, no. A five-star hotel with a good restaurant is the ideal option. I even took architects to Disneyland and settled in a hotel near the park so that they would study everything properly and do the same with us. Here, for example, there is no vestibule with a reception desk that is usual for hospitals - instead of them there is a nice reception desk, and behind it are smiling guards, we have two of them. They do not just look after the order, they are, first of all, reliable and kind men's hands, which will help to roll up the stroller and carry things.

On the counter is a huge vase of sweets that never gets empty. There is also a funeral mourning candle. Its edges have already melted and burned:

- We light it when someone leaves us forever. In the days of mourning, it does not go out day or night. This is both a sign of sympathy for the parents of the departed child, and a reminder to everyone that today is Memorial Day.

I noticed that neither the staff, nor the doctors, and even more so, the wards of the hospice themselves do not utter the word “death” in a conversation. Father Alexander recalls that when the first patient died in their hospice, it was such a shock for everyone that many workers even had to give a day off so that people could come to their senses.

“Palliative care is not at all what doctors are used to doing. Any physician wants to see the result of his work - recovery. He is taught this, he is aimed at this. And in the hospice there is no need to talk about recovery. And, unfortunately, deaths happen within the walls of our institution...

Downstairs in the basement there is also a funeral room (here it is called "sad"), where parents and relatives can say goodbye to the departed child. Initially, it was not even in the plan. She appeared after the very first patient died and everyone saw how the orderlies who arrived treated the body.

“It horrified us. And then there was a decision to make such a sad room for parting. This is also a unique facility for a medical institution. In many hospitals, moms and dads are not allowed into intensive care, and in the event of death, they often give just a couple of minutes to say goodbye before sending the body to the morgue. I am by no means condemning this, in large hospitals where thousands of people are being treated, it is difficult to create the necessary conditions for parting. But rituals are very important. Parents need time to realize what happened, cry, grieve, it is important for them to collect the child on their last journey.

Working in a hospice is a test of humanity

From time to time the children in the hospice leave, and nothing can be done about it.

“The existence of man on earth has a beginning and an end,” says Father Alexander. “Here we can’t get away from understanding this, because the presence of the end is too tangible. And death is always scary, there is no need for illusions that someone can relate to it somehow easily. Of course, working in a hospice is hard. It's hard to see so much pain and tragedy around you. Some children were born with incurable diseases, some got into terrible accidents, someone found out that he had cancer in the prime of his life - at 15, at 16 ...

Father Alexander is silent for a while.

“For our employees, not only professional qualities are important, but also spiritual ones. Not everyone is ready to meet people who are in such deep stress as our patients and their loved ones. And even those who are ready, at some point, can break down and leave.

— And how are you? You are not leaving...

“I get tired too and sometimes I go somewhere. But the main difference between me and other employees is that I am still a priest, and not just the head of a medical institution. In prayers, I rest, cleanse my soul before God. It helps. But the main thing is that I feel that I am doing my own thing: helping other people, making the world a better place - this is what I live on this earth for. A place like a hospice must have its own philosophy.

So what kind of philosophy is this?

- About the need to hug every day, find meaning in every meeting, every minute and every smile. The fact that hospice is not about death, hospice is about life, bright and joyful. If children smile here and parents are happy with us, then we have created exactly the institution that they need at this difficult moment. I'm happy that we succeed. Many children, having visited us for planned treatment, ask moms and dads: “Send me to the hospice again.” They feel good here, they can eat delicious food, play, chat with peers, learn something new. Of course, we cannot rid everyone of diseases, but we can give bright and strong impressions.

I don’t know how, but Father Alexander can tune everyone in this way.

“When I came to work here, construction was in full swing,” says Irina Kushnareva, an employee of the hospice. - Father Alexander walked around the building under construction and said: “So, there will be soft sofas here, here we need to make a fireplace, hang curtains ...” I knew perfectly well all the standards for medical institutions, since before that I worked in the MHIF, and always stopped. What curtains? What sofas? In hospitals, this is strictly prohibited. Well, he answered me, then go and change these rules. At first I was even angry, but now ... and now we have everything. And I myself will do everything to explain to the inspectors that the curtains are not a trifle, why it is so important ... We all work here for the soul. There is no such thing as a day off. We'll have to go to work. Psychologists go to funerals if they call. And for the commemoration... Yes, and they just often call patients, for example, from vacation.

Nastya

An unshakable faith in a miracle is what pushes both Father Alexander and everyone who is involved in the children's hospice in one way or another to daily small deeds for seriously ill children. There is a project "Dreams come true" at the St. Petersburg Children's Hospice. Every new year, the dreams of little patients of the hospice and city hospitals gather and all possible resources are activated to fulfill these desires.

- Someone dreams of seeing their idol, we will organize such a meeting. Someone wants the most sophisticated laptop, and we do this, of course, at the expense of sponsors most often. Someone definitely needs to see the water park or receive a wheelchair with a control panel as a gift, - says Olga Shargorodskaya, head of the socio-psychological service of the hospice. - Recently, a little boy, a fan of the cartoon about Peppa Pig, asked to bring a real pig to him at least for an hour. It turns out that he had never seen live pigs in his short life.

We try to do everything! Father Alexander enters the conversation. “After all, dreams come true have a unique psychological effect. I have seen more than once that this gives children the strength to continue treatment. And medicine, thank God, is not an exact science. And when the providence of God interferes with human predestination, then everything can change. Miracles happen, I've seen it for myself.

All relatives know that it is most difficult for Father Alexander to talk about the girl Nastya. She died of cancer a few years ago.

- For any priest, the parishioners themselves are teachers. I did not invent what a hospice should be. There was such a girl Nastya ... - Father Alexander falls silent for a while, lowers his eyes. - She had a severe form of sarcoma, one leg had already been amputated, the question of taking the other one was acute. I talked a lot with Nastya, and she talked a lot about what she had to endure and what she had to face in hospitals, what was missing and how many difficulties and troubles could have been overcome more easily. And it so happened that everything that we subsequently created was the result of this communication with her.

Father Alexander recalls how he once sent a young priest to her instead of himself. And he, seeing a young, beautiful girl dying without legs, could not cope with emotions and burst into tears.

- And she said to him so sharply: “So, dry your tears, I need you not as a mourner, but as a priest. There is nothing to cry about here." And I realized that the patient does not always need our pity. If he wants to cry with us, then we give him our tears. Well, if he wants to talk about other things, then your tears will only interfere with him. In hospices, one should try to get away from the eternal compassion and sadness in the eyes of the people around the sick.

Father Alexander remembers well and their last meeting with Nastya:

Everything was already clear to everyone. Nastya understood what was happening. I came to her once again to take communion. And there was such a bitter understanding that we would never see her again. We prayed together, held each other's hands. And then she said: “Everyone, go. We'll meet in paradise.” And I realized, God willing, we'll meet again.

The President presented State Prizes for outstanding achievements in the field of charitable and human rights activities. The State Prize in the field of charitable activities was awarded to Archpriest Alexander Evgenyevich Tkachenko, Founder and General Director of the first Children's Hospice in Russia.

Dear Vladimir Vladimirovich, I am deeply touched by this high state award.

A decade and a half ago, starting a charity project to create a children's hospice, we sought to fill the lives of those children whose life is limited by the severity of the disease with joy. Even when it is impossible to cure a disease, this does not mean at all that nothing can be done. A lot can be done. It is important to preserve the quality and dignity of life, to get rid of physical and spiritual pain.

The first children's hospice in the country was built in St. Petersburg thanks to the efforts of many benefactors. The highest merit in this belongs to Valentina Ivanovna Matvienko. In subsequent years, teams of doctors, psychologists, specialists of various professions allowed the formation of a new direction in medicine - children's palliative care.

The high quality standards of child care applied in the St. Petersburg Children's Hospice have been included in the regulatory documents of the Ministry of Health. According to them, hospitals are now being built, field services are being opened in all regions of the country. People come to us to study from federal districts, come from European countries.

We have a big task ahead of us: we must change the attitude of society towards people with severe disabilities. A very important role in the formation of an inclusive society belongs to the Goodwill Ambassador of the Children's Hospice, Honored Artist of Russia Diana Gurtskaya.

His Holiness Patriarch Kirill of Moscow and All Russia, while visiting the children's hospice, said that the Church can solve state problems: what is entrusted to her will be performed in the best possible way. The church builds hospitals, universities, hospices. We are trying to change society and the world for the better.

The first clergyman - the winner of such an award, now glorified in the face of saints, St. Luke (Valentin Voyno-Yasenetsky), a doctor, a surgeon, upon receiving the award, said that helping the sick is the highest vocation, and this is seen as the unity of medical practice and church ministry.

I am very grateful to you for your appreciation of our work. Thank you.

We don't talk about death

Interview with Alexander Gatilin, Soyuz TV channel.

No need to bury a child while he is alive

Father Alexander, the hospice you created has been in existence for 10 years. In those years when it was created, it was an absolutely unique phenomenon. Where did it all begin? Why did this particular topic of social service come to you and how did this idea develop?

Somehow it all came naturally. As they say, God gave.

Probably, for every priest who stands before the throne, it is very important not only to carry the Name of God to people, but also to bring to people the miracle of God and the healing of God, and the love of God. It so happened that a lot of people came to the church where I served, in St. Nicholas Naval Cathedral in St. medicines, invited specialists for additional consultation, but we wanted to do a little more.

We understood that within the existing rules for the provision of medical services, the state does what it can do, and there is always an opportunity to do a little more for the church. At that time, however, as now, from the moment when the child's illness is predicted to be incurable or the child's treatment will bring great suffering, the child is discharged from the hospital where he was treated, under the supervision of a district specialist, a district pediatrician.

Unfortunately, the district pediatrician does not always have the opportunity to provide full medical care. This care is highly technological, it requires the use of painkillers, it requires very intensive home care, good quality care. Because life and its duration will depend on this care. And 10 years ago, in many respects even now, this is not possible due to the existing rules for the provision of medical services, by the forces of healthcare. And here the church has found a certain ministry for itself.

At first, we just found people who came to these parents' homes and looked after the children. In addition to medical assistance, a lot of social assistance was provided. We understood that the child must continue to live, despite what happens to him. Yes, the disease exists, yes, most likely the disease is irreversible, but it is not necessary to bury the child while he is still alive. We must give him the opportunity to live a full life. Play, chat, learn something new.

All our activities were connected with organizing a full-fledged life of the child based on his physical condition. Doctors did what they could to improve function, relieve pain, enable a person to go out into the world. All other employees: psychologists, teachers and various volunteers offered each child a certain program that took into account his interests.

Thus, an understanding was born of what a hospice for children is. Hospice is a philosophy. At first it was just such an initiative group of people, and we did not have many patients 10 years ago. We took care of six families. Over time, our activities became known, more and more people began to contact us, and over the years we have grown to seventy families. And they could no longer cover such a number of applicants on their own.

Photo — kidshospice.ru

Then a medical institution was created on the initiative of the St. Petersburg diocese, in many respects this is the merit of Metropolitan Vladimir. This institution, having received a license, began to professionally provide this assistance at home. With the support of the city administration and personally Valentina Ivanovna Matvienko, we received subsidies that helped us grow into an organization that organically entered the city health care system.

In addition to helping children as a medical organization, we were able to develop standards for home care. We were able to calculate which patients need such assistance, how many of them there are in the city, what types of public medical services they need to provide. And if you build a hospital, then it should be like this, what is the bed capacity, what equipment is needed there.

But this goes far beyond the social service of the Russian Orthodox Church. Now, in addition to serving as a priest, you also hold a serious state post, you are the director of a state hospice. This is generally a precedent. How did it happen?

This turned out in a very natural way, because when we gave such a program of activity to the state, the state considered that the Church knew how to do it in the best way and suggested that the Church continue this topic, implement it. A hospital was built.

Those people who started this ministry, precisely as a church ministry, they were hired and are still working. And two hospitals have already been opened in St. Petersburg, and a third one will be opened.

How many followers do you have now?

Now there are about 300 children we are seeing, they are residents of St. Petersburg, we are seeing about 70 children from the Leningrad region, mobile teams are working that come to their homes. The hospital accepts about 20 patients for round-the-clock monitoring and 10 patients come to the day hospital.

Photo — kidshospice.ru

How long can children stay in the hospital?

It depends on their condition and on the set of services they need.

If the child's condition is so severe that it can be assumed that weeks rather than months are left to live, then the child stays until the last day.

If the child's condition is better and the activities of the hospice are connected with the organization of his full-fledged life, then he stays until the 21st day, then he goes home, returns to life in society.

For me, the most important thing in all this activity is that we grew up in an era when the Church was persecuted by the state and those of us who came to the Church without fear of what might follow after such a challenge to society, it is very important for us that changes have taken place and now society needs us and we can show this society that the church is capable of solving state problems.

We are the best we can do. And in the church there are people who have those spiritual qualities that are most in demand in such social service, in the hospice.

Hospice smiles

In this connection, I just wanted to ask how psychologically difficult such work is. How do you cope with this psychological burden, how do your employees and colleagues cope, how difficult is it and whether you need to be afraid of the topic of death. Unfortunately, this fear of touching this topic is present in the public mind.

Fear is natural, because most often we transfer the fear of meeting the death of a child to our own fears about our own children. People are afraid of this topic.

As for the experiences, it’s probably easier for me than everyone else, because I’m a priest and on the days when I celebrate the Liturgy, I stand before God, and my fears before the Face of God go away, I turn my empathy into prayer, and I feel better.

Less churchly people who work in hospice (and people of different nationalities, different faiths work in hospice) also find some mechanisms that help them not to harden, not to lose this necessary cordiality and at the same time not to burn out from the inside.

Probably, it is very important that the right team spirit has been formed in the hospice, everyone is very attentive to each other, everyone is smiling there. And patients, and parents, and employees, they live one life. Perhaps this comes from the very philosophy of the hospice. We are not talking about death from oncology, from some other disease, we are talking about how to live when there is an incurable disease in your body. We continue to live, we embrace every day of life, we find joy in every moment. This approach helps not to lose the presence of mind.

His Holiness Patriarch Kirill: "If you want to meet God, come to the children's hospice"

Please recall the words of His Holiness the Patriarch that he said when he visited the hospice.

It was an amazing visit, and I remember very vividly every minute of His Holiness the Patriarch's visit to the children's hospice. It was his birthday, which he decided to spend among the children and parents in the children's hospice. He was so moved that in his speech to his parents he said: "If you want to meet God, come to the children's hospice." He said that here the presence of God is felt in all rooms and to him, as the First Hierarch of the Russian Orthodox Church, as a highly spiritual person, this presence was obvious and for us this testimony is very important.

Photo — kidshospice.ru

The unusual life of a hospital

Father Alexander, let's tell you how a day is built in a hospice. As far as I know, it is very rich and in this sense, every minute is really felt, a person understands the value of every minute.

The day starts normally. This is still a hospital, in the morning a nurse comes and makes some conclusion about the patient's condition in the morning, measures the temperature, but then something starts that does not happen in the hospital.

Every day has a theme or every week has a focus. For example, a week is devoted to water or the sea, and during the day the child will encounter certain elements that will introduce him to the inhabitants of the sea or talk about some features of this element. In the dining room he will be served fish or seafood, the dining room itself will be decorated with elements of the sea, shells or sea nets.

After the procedures, creative classes will take place, in which children will draw water depths or some other subjects, maybe one of the submariners will come, people who went down to the bottom and took photographs and can share their experience. There will definitely be a movie.

Every moment when the child is left alone after the procedures, we try to fill it with something and try to make sure that at this moment the child learns something new or communicates with someone interesting. But, basically, procedures, they take some time and life is an ordinary hospital.

Dreams Come True!

In this regard, I would like to ask how active our well-known compatriots are when you make an offer to come and talk about something interesting. In general, what is your social circle?

A lot of famous people come to us. Not only that we invite them, it is very pleasant that, having learned about us, they express a desire to come to us. Quite recently, the CSKA hockey club expressed a desire to become our chef, and this was a great joy for the boys, who occasionally have the opportunity to come to a hockey match. And here the hockey club suggested to us that the children would be more actively involved in the life of the club, perhaps go on the field and make the first face-off of the puck, or they would have the opportunity to go out and ride around the hockey field with the hockey players.

Photo — kidshospice.ru

This is yet another example of how society gives meaning to the lives of children in hospice. This is one of the most important aspects when you begin to comprehend what you managed to do in your life, and how productive your life is, how much you were able to realize yourself in this life. The participation of great people in your life gives you the opportunity to feel that you really did a lot, you can do a lot, you know a lot, you met with many - and this is a very important part of the hospice's activities.

One of your most famous projects is connected with this - this is the fulfillment of the desires of your wards ...

This is the "Dreams Come True" project. It arose as a natural continuation of the work of a psychologist in the patient's family.

When the child’s condition worsens, or when some kind of serious operation is planned and the psycho-emotional status needs to be raised, or when after the operation it is necessary to cheer up a little so that there is strength for rehabilitation, the psychologist tries to find out from the child, from his family, what his innermost dream is .

Here is the very, very secret, which lives somewhere in the depths. Not that he just wants to have a computer like someone he knows. But in addition to the computer, there is also a dream. And having learned this dream, we find people who would like to fulfill this dream. Of course, we donate a computer too. But here is the same bouquet of daisies in winter that he dreams of, or about meeting with some famous football player or boxer, or ...

What were the most unusual desires?

I guess I'm already used to unusual desires ...

Well, a few examples to give a little idea of ​​this picture.

Well, for example, a child wants to meet with some famous American band, which does not even exist in Russia, and we understand that it is impossible for us, having our small resource, to bring a world-famous rock band here. But children love, for example, the Tokyo Hotel group. There were several groups of them, so I purposefully do not name them, each of them. Or, for example, Adriano Celentano, a famous singer, a world star, but he does not leave now, he lives in his villa and does not plan to come to Russia, and the child wanted to meet him.

Nevertheless, we find an opportunity to contact the group and the singer, tell them about the patient, even send a photo and a letter. We asked the boy to write a letter. Well, we cannot meet with Adriano Celentano now, but you can write him a letter, we will pass it on. He wrote, and in response came a large poster with a signature, a personal response came in which it was written that he wished him strength to fight the disease, he wrote that he was worried about him and would pray for him to get better . He talked about the fact that there are illnesses in life, and the most important thing in these illnesses is not to lose heart, not to despair. Such a simple sincere letter was written, which brought the joy of meeting the child with this star.

I know that another of the requests was to become a successful businessman. How is it performed?

A very beautiful story. Rather, it shows that in each such story there is an element of creativity.

The hospice team is always trying to fulfill exactly the way the boy or girl feels, exactly how she dreams. Well, in the view of modern children, success is associated with some attributes, that is, it is work in a large company, it is a certain style of clothing, a jacket, a tie, some kind of leather briefcase, maybe even a car that he drives to work.

This 17-year-old boy, who could not finish the 11th grade due to illness, finished the 9th grade, and then an illness happened, and he had to be treated. And all his classmates passed the exams and began to enter institutes, but he could not. And this pain from the fact that he was a loser, she lurked in his soul and once he expressed it that so nothing happened in my life and the psychologist heard this phrase, said somehow in passing and after talking with one of the leaders of large companies in St. Petersburg came up with such a project.

Quite seriously, he was invited to work, the company said that we are giving you the position of head of the department, we feel that your experience suits us, such an interview and everything is absolutely serious, he was told that we need such a person. He was given money so that his appearance would correspond to the duties assigned to him, and on Monday he went to work.

They put him at the table, they said that you need to take a piece of paper from here, bring it here, they offered him some kind of job. After some time, we met, and I saw just a happy person, because he was cooler than his classmates. He was met by a car, taken to work, he did some very important assignments, received a serious salary, he really was an idol of the class and after some time, he celebrated his 18th birthday, and he was able to invite his classmates to the billiard club , treated them to dinner there, and then they played. We invited a well-known billiards champion and he showed a master class. Here is such a story.

Children better accept their illnesses

Let's clarify that the disease does not happen from birth, but comes already at some age, right? There are situations when a 15-16-year-old child can live an absolutely natural, normal life, and something happens, a disease is detected. This disease can last for months, it can last for years. That is, unfortunately, this can happen to anyone who was born healthy. I'm right?

Illnesses happen, and none of us can escape illnesses, so we must prepare our souls for the fact that we bear part of the pain of this world and ask the Lord to give us patience to bear this pain.

We Christians must remember that they do not come down from the cross, they are taken down from the cross and, wishing to become like Christ, we must prepare ourselves to bear part of this burden. Thank God, if someone passes this cup, but diseases come to everyone, they come to children too.

The most striking thing is that children more correctly accept their illness than adults. We practically do not see such tragedy that an adult experiences, associated with collapsed hopes, a failed life, a failure to realize oneself, in children. There are rather more alive human feelings associated with the bitterness of parting, with an unrealized feeling of love. Adult people somehow perversely perceive, evaluate the effectiveness of their lives, from the point of view of some such secular standards.

At the end of this program, I wanted to clarify up to what age children are considered children and potential wards of yours.

Since we have become a state institution, we are guided by the rules that determine and regulate our activities. We accept children from 3 months to 18 years old, but since it happens that a disease that began in childhood leads to completion after the age of 18, we try not to leave children without attention.

For example, if a child was our patient before the age of 18, of course we cannot discharge him after his birthday. That is, we find a way to continue caring for him as long as possible and necessary.

I would like us now to talk about deeper, more intimate issues. And my first question is, do all children ask questions about God, do all children ask why exactly they had such a test, and how do you conduct conversations with them?

What's next?

The desire to live is so strong that even when it gets really bad, the child fights for life, parents fight for life, and employees fight for life. Therefore, a direct conversation about how I feel about death or what death is does not always happen.

But a person who thinks about what is happening to him, how curable his illness is, always wants to find a person to his liking, an interlocutor to his liking, so he sometimes asks leading questions in simple conversations, meetings, conversations, passing by, over a cup of tea , as if probing you, trying to understand whether you are this very person.

And if you feel at this moment that the child wants to talk to you or the parent wants to talk to you, and you can answer correctly, then maybe you are the person who will give him this lifeline.

The conversation most often takes place indirectly, abstractly, not directly about oneself. It rather concerns the topic, but what is death, and what will happen then, and why did my life turn out this way? And the information that you know must also be given in doses, because you need to give the person the opportunity to comprehend what you told him. Children experience death differently than adults experience it. And with children of different ages, you need to talk about death in different ways.

In the understanding of a child, a small child, let's say up to 7 to 8 years old, everything around is alive. Plants are alive, objects are alive, he plays with inanimate toys, in his perception these toys are alive. In his conceptual reserve there is no experience of death, no experience - living, inanimate, everything is alive there. That is why it is so difficult to accommodate this, and therefore it is necessary to find the language that will help him, this experience of an adult person of death or meeting with the inanimate, to make it a concise part of his conceptual apparatus, his philosophy.

Older children have a fear of death, and most likely it is associated with the fear of being abandoned by their parents, the fear of losing their parents. Since he has never met what death is, he most often perceives it as if the living are buried in the ground, and it’s scary to imagine how they put you in a coffin, close you, you are there alone, somehow there is no air, no mother, he is the worst for a child.

With age, the child begins to pay attention to the fact that a dead bird is lying, or one of the relatives has died, he begins to ask himself this question. And here it is very important that the people who are around the child could talk to him, could tell that death is a natural part of our life on earth and everything that is born, everything that has life, will someday die. And this applies to the life of all living beings, starting from a bird, an ant, and ending even with a person. The fact that people die due to illness, due to old age, or because their body is badly damaged. And this is a natural part of our life. It's sad, but it happens to everyone.

This conversation must be built very carefully so as not to frighten the child, but to expand his understanding of the world. You need to tell him that life does not end for a person after his heart stops, his breathing stops. It is necessary to tell that the Lord came to earth so that a person would not disappear, that he himself, in addition to his body, his personality, his interests, with what he loves, with his values, which is called his own Self, goes to Christ, and Christ meets him. And there is the Mother of God and the Angels who will be next to him.

You can come to the temple and, pointing to the icons in the temple, tell about the life that the Lord spoke about. Because the temple setting itself is childishly fabulous, the child perceives the temple as a reflection of extraterrestrial reality, and in the temple it is easiest to talk about what life is like outside life on earth. Because candles, and icons, and the vestments of the clergy, and divinity, and the mysticism of the service - they all confirm the words of the speaker that this world exists, and since it exists, it can be interesting for the child. Once a child has an interest in this world, then fear disappears.

Does your hospice have a house church?

And children often visit ...

A service is held there every week, and children and parents are present at the service, there are employees for whom the image of St. Luke (Voyno-Yasenetsky) is the image of a good doctor, a real doctor. We brought a particle of the relics of St. Luke from Simferopol and we tell both the staff and the families of patients about this.

The image of St. Luke was always inspiring for me, because he was a courageous minister of the Church and a doctor who became the founder of purulent surgery, who was the first to perform local anesthesia for brain surgery. During the war, in the most difficult conditions, he performed unique operations, was a laureate of the Stalin Prize, despite all this, he spent most of his life in camps. This is a man whose textbooks are still used by modern doctors. Even for non-church hospice staff, he is such an inspiration.

I wanted to ask about your education. Have you received any special skills to carry out such work?

I have a classical education: a secondary school and the St. Petersburg Theological Seminary and Academy. I did not specifically receive medical education, but since I have been creating a hospice for 10 years, I have accumulated some knowledge that helps to solve the state task well and correctly fulfill the mission of the Church.

Solve government problems better than the state

But when you started creating a hospice and took the first steps, because there was no experience in Russia, it was necessary to turn to Western experience, where hospices are still a more common phenomenon.

They have existed for only 20 years. Before that, they did not exist in the West either, so 10 years ago, when we started, this topic was new even for the Western world. The first children's hospice was established in England, St. Helena's Hospice, it was established 15 years ago. Five years later, we were created. Recently, a conference was held in Rome, which brought together all initiative groups from America, from Europe, I was pleased to hear that the St. Petersburg Children's Hospice is the best example of how this should be done. Because in the world it is most often just such small initiative groups that do not have their own full-fledged medical hospital.

The best built of course hospice in Canada, Canada Place, is the only stationary hospice in all of North America. And when we were building, we undoubtedly took their example as a basis for some standards, took into account their experience. But what we have now built with us is much better than theirs. And the number of medical services and so on.

It is surprising that it turns out that the state has, as it were, withdrawn from this topic?

In no way. The state entrusted the Church to decide this matter. It entrusted it with significant financial resources, because it is a public institution, it rated our activities much higher than similar activities in other healthcare institutions, that is, the cost of a public service per patient is estimated higher than in a conventional hospital, it provides an opportunity for development, provides other hospitals so that we can create similar institutions in St. Petersburg and other regions.

From the words, now the Church is an example to society that there are those state tasks that we can solve better than the state itself.

Do not die in the hospital, but live under medical supervision

You are in this process. How is the hospice system going to develop? How does the state see this system?

The Federal Law “On the protection of the health of citizens” was adopted, which included Article 36 “on palliative care”. From that moment on, palliative care as a legal term exists, and the state undertakes to provide citizens with full-fledged palliative care, citizens of all ages. Therefore, hospices will be created in the regions, and they will have funding. Each subject will be obliged to provide this type of public services.

Of course, I worry about what these hospices will be like in the regions. Will it be poor wards at hospitals that will just have a few beds, and it will be a place where people die, and it will be a terrible place, it will be a "typhoid hut." Or it will be a kind of fabulous house, some kind of space, comfortably created so that the family can live there, live together with the child, without being pressured by the hospital environment and the rules that exist in every hospital. So that she can live in a family environment and live a fulfilling life. Do not die in the hospital, but live under medical supervision.

On the one hand, it depends on what funds the regions will allocate to children's hospices, on the other hand, it depends on what kind of people will be involved in this work. And here is an opportunity for the Russian Orthodox Church to take up the work begun in St. Petersburg and continue it in the regions.

How to start as a volunteer

Father Alexander, viewers in different regions of Russia will watch us, if someone has a desire to initiate the creation of a children's hospice, where should one start?

You need to start with a prayer, and turning to God and the Mother of God with a prayer, begin to act. First, perhaps, you need to contact the diocesan bishop and find out what activities the diocesan charity department can undertake, on the other hand, you just need to take some food, some things with you, go to the family to get acquainted, find out what specific This family needs...

How do you find out about these families?

Come to the district hospital and say that you are a volunteer, or you want to attract some resources or somehow donate your time in caring for difficult people. That is, you must always start with some specific actions. Don't start philanthropic work by talking about how to conduct it. You just need to spend a day with a patient, and the patient himself will teach you what he needs.

But here the question of unprofessionalism arises: a person will come, he does not know what to do, he can only do harm.

Yes, I agree, I guess I'm used to dealing with people who are prepared. And, of course, a person unprepared for what he will meet with can cause more pain to a person than help. Therefore, I simply recommend that before communicating with the family, meet with people who are already caring for this family. And find ways to interact. I am sure that there are already existing groups of volunteers who will help you naturally prepare yourself and find the application of your talents.

Do you plan to develop methodological courses, conduct them in the regions, initiate this work?

This year we will celebrate 10 years since the start of the children's hospice in St. Petersburg, and a big conference will be timed to coincide with this date, to which we invite representatives of all regions. We are ready to send our representatives to those regions that want to do something.

Minister of Health Veronika Igorevna Skvortsova visited the children's hospice, as a result of this visit, it was decided to create a training course for specialists and introduce the specialty of a pediatric palliative care doctor into the nomenclature of specialties, therefore, professional training of specialists will take place in St. Petersburg on the basis of a children's hospice and academy them. Mechnikov. Preparations are underway for this, documents are being prepared, and specialists will be preparing.

Professionals should work in the hospice

How is the situation in higher educational institutions, is there a specialty?

There is no specialty, for the introduction of this specialty, you need to do a lot and prepare documents, and, most importantly, prepare a scientific ...

Is there any work being done in this direction?

Just you or all the same ...

It cannot be carried out only by us, since we carry out practical activities, and textbooks and courses are prepared by people who have more opportunity to devote to science, writing the textbooks themselves. But we are already ready to open training courses. Certification will take place in the manner prescribed by law.

How are relations with the Synodal Department for Church Charity being built?

I am very grateful to Vladyka Panteleimon, his visit to the children's hospice attracted the attention of the departments for charity of the dioceses, the heads of these departments came to us from various dioceses, and I know that in the Khabarovsk diocese, in Irkutsk, the Pskov region and in other regions, priests, having come to us start similar activities in their localities. With varying degrees of success.

Father Alexander, how difficult is it to find understanding among businessmen? How difficult is it to get financial support for the implementation of such activities, what will the initiative groups in the regions face? They will find understanding, or rather, as often happens, unfortunately, "we help only those who can recover, who can recover." Have you experienced this as well?

Such an understanding exists. It is important for a person if he gives money to know that they, this money, have helped someone. Therefore, in a conversation with such people, it is necessary to explain what hospice is and how its means will help someone live in the most difficult period. The result of this meeting depends on the degree of trust. Without a doubt, the Church has more trust than any public organization, so if the activities of the initiative group go on behalf of the Church, no doubt, you will have more trust from the business community. In general, there are always kind people, so if you talk to people from heart to heart and talk about specific people, specific needs, you will be given specific money for specific purposes.

Father Alexander, you have a fairly large family, how do your loved ones feel about your ministry?

Thank God, the Lord gave me four sons, and my sons help me. First of all, the fact that they accept me for who I am. I come home late, I don't always have time for them, but whenever I'm with them, I'm very happy and they are happy that they have the opportunity to be with me. In general, I try to spend my weekends with my sons, we go skiing, we do a lot of interesting things together. They are such a great spiritual support for me.

Father Alexander, at the end of our program, what is the main secret in creating an efficient children's hospice? What are the key tasks, goals that people who would like to do this should have?

First of all, you need to understand that children's hospice is not just an object of charity - it is a serious part of medicine. Therefore, professionals should do it. We need to find ways to interact with people who do this in one form or another in the health care facilities of this region, we need to treat them with understanding and gratitude for what they are already doing, and to be co-workers with them, it should be friendly and partnership relations.

A very important feature is the preparedness of the person himself for this activity. If a person comes to work in a children's hospice because some internal problems prompted him to social service - personal disorder, or experienced tragedies - this person will transfer the tragedy of his life to communication with the patient. He simply understands the pain of another very well, since he experienced it, but at the moment of experiencing this crisis, he is not able to simply by experiencing, understanding the experience, relieve the pain of another. He hasn't gotten through it yet. The one who has already been ill, survived, begged, the one who has been healed can help.

In order for the activity to be effective, it is best to communicate with someone from the soul experts. So that a person has some kind of interlocutor, an experienced, spiritual mentor, a psychologist who has previously communicated with people who have experienced stress, or pain, or loss. Someone who could look at you from the side. And he could help you find those forces of the soul that will make you useful to the interlocutor.

Father Alexander, thank you very much for your service, thank you for the conversation.

I really hope that the activities of the St. Petersburg diocese in serving sick and dying children and their families will find support in the regions. This is without a doubt the work of the Church. This is without a doubt the responsibility that we, church people, bear before society. And if our experience is in demand, our work will be continued in the regions, society will look with delight at what we are doing, and this will be the best preaching of the name of Christ, the work of Christ, the mercy of Christ, the love of Christ, the miracle of God in this world.

Father Alexander, you are the head of the children's hospice - this is the first such healthcare institution created by you and your assistants in our country. And I have the first question for you: how do you manage to do everything? What moments in work, in life are primary, and what are secondary?

Probably, this question comes down to prioritization, what is the main thing. It has always been a very important feeling for me to live my life not in vain. I really feel bad when at the end of the day I have nothing to say thank you to God for. If I don't have some event that would involve me as a priest or as a person, if there was no opportunity to do something good for someone, I really feel bad. Apparently, this is the very faith that the Lord once laid down. A day lived without God somehow loses its meaning.

Please tell us how the children's hospice was created and what it is in general? Many of our TV viewers do not know about such institutions and about the so-called palliative care. How did the idea of ​​creating this institution come about?

I thank God for the opportunity to create something for the Church and for society. The Church throughout its history built hospitals, hospices, almshouses, shelters. In the current conditions, when society was going through a period of serious changes, the Church was given the opportunity to show her experience. And on the initiative of the Russian Orthodox Church in 2003, the first institution was created that provided assistance to children with diseases that could not be cured, or children with an unfavorable prognosis. We attracted specialists from medical and non-medical specialties for our activities, but we put all our philosophy into their activities, our understanding that life is a gift from God. And our responsibility is to fill the lives of patients with meaning, content, to make their lives not scary, not painful, so that every day is filled with some bright events.

After all, from the moment when a person was diagnosed with a difficult diagnosis or voiced an unfavorable prognosis, of course, he is going through a difficult period of life and the hardest emotions. But that doesn't mean life has stopped. And it depends on the people who are around whether he will live the remaining period of a full life as a person, as a person, as part of society, as a member of the Church, or literally “die alive”, being left alone with these heavy feelings.

You say that there was an initiative of the Russian Orthodox Church. Did someone give you the obedience to open a hospice, or was it your personal initiative that the Church supported?

At that time, Metropolitan Vladimir was at the head of the St. Petersburg Metropolis, who had a very remarkable trait - he trusted young priests. We came to him, talking about what worries us, or with our initiatives, and he always supported us. Moreover, he said: "Father, if you need anything, you come straight to me." Probably, it is with such a story that I am worried that within the framework of the existing healthcare system, some part of the population was unable to receive assistance from the state, and I came to him. And Metropolitan Vladimir then proposed to initiate the creation of a fund and subsequently a medical institution that could provide this assistance to children and their families. And the authority of the Church has been offered as the basis for an institution that can be trusted. It is thanks to the authority of the Church that we have received both the support of the government and the attention of society.

That is, the hospice is subordinate not only to the Church, but is also included in the healthcare system of the entire Russian Federation?

The hospice began as an initiative of the Church, later became a non-profit medical institution that initiated the creation of public health institutions. And since 2010, I have been the head of the Children's Hospice public health institution, and now he is helping to create similar institutions in other regions.

- I know that one is being built in the Moscow region.

The Government of the Moscow Region requested the St. Petersburg Children's Hospice as the only institution in the country with practical experience in creating a state institution for palliative care for children, with a request to create such an institution for the Moscow Region, and not only a hospital, but also mobile services that would cover all the children living in this vast territory. We were given for reconstruction the Przhevalsky estate in Domodedovo, in an amazing, beautiful place. We were able to attract investors who invested in the reconstruction of this institution, and at the end of this year, the state institution "Children's Hospice of the Moscow Region" will be created. We will help this institution to provide assistance to children: both methodologically and in the training of specialists and in the most direct activities.

- Tell me, who finances your institution? Is the state involved in this?

The state maintains institutions that are subordinate to the Ministry of Health, the Health Committee. Non-profit non-governmental institution "Children's Hospice" is supported by philanthropists, corporate and private investors.

Father Alexander may sound a little rude, but everyone knows such a thing as euthanasia. Why am I saying this? In many countries, especially in the West, this is expressed at the legislative level; a person who is hopelessly ill is cheaper to accompany, roughly speaking, to that world, and this is negotiated at the highest levels of power. Why is it really important, despite the fact that a person is hopelessly ill, to keep him in some conditions, to use painkillers, to prolong life and bring some joy into this life? And you, as a priest, of course, also talk about God. After all, it seems to me that it is difficult for a person, he dies ...

No, the quality of life of this patient depends on us. If we can help a person to live in spite of illness, then the person will not have the desire to commit suicide. This is our social, Christian and civic responsibility. When a person is not hurt, not scared and not lonely, he naturally continues to love this life. In my pastoral experience, I know many cases when a person was on the verge of committing suicide because of persistent pain, because of the hardest feelings, loneliness, but after a conversation with a priest, after accepting the sacrament, he agreed to suffer to the end. Apparently, the role of the priest is to be with his patient to the very end, to help him go through this shadow path.

Question from a TV viewer: “Father Alexander, at the beginning of the program you said that prioritization is very important for you. Tell me what is more important for you, how do you determine for yourself: your pastoral work, the work of a priest, or the work of a hospice head? After all, both jobs take a lot of time and effort.”

This question is probably very personal for me. I do not share these ministries. I probably would not have been able to be a good leader of an institution if I had not been a priest. Just as if I were not the head of the children's hospice, I would not be able to fully bear the joy of priestly service. In the seminary, I read a phrase that all life should be a liturgy. These are not pathetic words, but, once spoken by my teacher in the first class of the seminary, they somehow sunk deep. And all my activity is an attempt to make sure that the liturgy does not end in the temple. With God it is good in the world. If you have the opportunity to bring this joy of communion with God to other people, you feel your realization as a priest. Sorry for being so sincere.

- Such a question: do you have a special education, except for the seminary and the academy? Medical, perhaps?

I have no medical education, although I have read many books. I am preparing to defend my PhD in Health Organization at the University of Pediatrics. But this is a long process, although a lot of material has been collected. And as a priest, it will be an honor for me if I can defend myself in a medical school. And we really have something to say, because the creation of children's palliative care, children's hospices is a merit of the Church. We were able to make the philosophy of caring for a person a natural structure for providing medical care, link our philosophy with one of the healthcare institutions, and introduce it into regulatory documents.

As far as I know, you have traveled to the USA and Canada and have seen how hospices are set up there. Your hospice, if I am not mistaken, is the third largest in the world. You went there while studying at the seminary. Tell me, it was there that you got some experience and there you caught fire with this desire? Or did the desire to help such people arise earlier? Was it spontaneous?

No, it was a kind of experience of getting to know the problem. I don't think it was spontaneous, but apparently the Lord arranged it that way; I was given the opportunity to see that health care can be different, it can be about answering questions and meeting all the needs of different parts of the patient's life: his spiritual, emotional and physical needs. But the peculiarity of the children's hospice is that the hospices you mentioned in the UK and Canada are non-state hospices. And we managed to naturally integrate the philosophy of the Church into the public health system, we were able to include it in the regulatory documents, we participated in the development of the "Procedure for the provision of palliative care" and other regulatory documents. This is to the credit, of course. At some point, the state really decided that the Church had something to say and that this experience should be heeded. And now we see that the changes that are taking place in healthcare are the result of the activities of the St. Petersburg Children's Hospice.

To work in a hospice, it seems to me, you do not need to have any special education, you probably need some kind of call of the heart ...

No, the hospice should be run by professionals. The period when just kind, caring people started working is over. Palliative care requires that it be provided by people trained in this field, including the clergy. Spiritual assistance is already prescribed in the Federal Law "On the protection of the health of citizens", in the "Procedure for the provision of palliative care" as one of the types of mandatory services provided to the patient. Therefore, spiritual assistance should be provided by people who have undergone special training.

- Are there other priests who help you?

Of course. And these priests who participate in the life of the hospice were preparing for this service. We talk a lot after each of these meetings about personal experiences, existential experiences that a priest who works in a children's hospice goes through.

- Can I ask you a little personal question? What do you feel when you visit these children?

I feel like these kids have something to say to me. Because they are closer to God than we are. And their personal experience, if I may say, the mystical experience of meeting God, can give us a lot. His Holiness the Patriarch, when he visited the children's hospice, said amazing things that they see God, and if we want to meet God in our lives, we must come to the children's hospice.

- Regarding the specialists… Tell me, how many people help you in total?

The staff list of the state institution "Children's Hospice" alone has more than a hundred people with medical and non-medical specialties. The non-profit non-state children's hospice also employs several dozen people. Well, it is difficult to count the number of volunteers - there are a lot of them.

- That is, there are a lot of people who want to help?

But then again, even in order to be a volunteer in a children's hospice, you need to go through special training. And the employees of the social and psychological service of the institution deal with them separately for several months, preparing them before they are allowed to work with a group of patients.

That is, a person must be ready not only to acquire some professional skills, but also to be psychologically prepared?

He must be emotionally ready to meet the lives of other people, he must understand how much his activity, the words he said or the manner of his activity influence, the effect on his interlocutors, on people who accept this help. Because, for example, a tear on the cheek, or a lump in the throat, or some natural movement of the body can offend, offend, or create some kind of tension in the interview with the patient.

- To be honest, it's hard for me to imagine how your work is going.

Question from a TV viewer from Moscow: “Does it happen that children who are far from Orthodoxy end up in your hospice, and how are things going with them, it’s interesting to know?”

The Children's Hospice has been a non-denominational institution from the beginning; The Church was the bearer of the idea. And each of the employees of the children's hospice must be ready to talk with his patient, with the family, taking into account the family, national, cultural and religious values ​​​​of this family. There are Muslims, Jews, Buddhists, Christians of other confessions in the children's hospice, but each of the employees knows how to listen to the religious and mystical experience that this family has, and treats it with respect, and if necessary, invites a representative of this confession to personal conversation with family.

- Tell me, have there been any miracles in your practice?

I see a miracle every day. Because if a person has the opportunity to live a full life, despite a difficult diagnosis, an unfavorable prognosis, if his soul lives - this is a miracle! Medicine is a rather exact science. And if she refers the patient to palliative care, the prognosis is clear. But if a patient can live longer, better, thanks to the activities of the hospice, this is a miracle. After all, understand that the Lord left us Christians on Earth so that we could be a word of consolation for the whole world, a word of joy, a word of hope, perhaps a miracle for someone. And the miracles of God are created through our hands, through our professional activities.

- Do medical schools now train specialists for palliative care?

Preparations have begun. There are courses at St. Petersburg University, an approved course at the Pediatric University, there are regular lectures on palliative care. Lectures are regularly given at the Moscow Dental University. This is a natural process that probably takes some time. But the medical community is already accepting palliative care as a natural thing in its practice as well. The terminal stage of the patient’s illness is no longer perceived as a medical error, the patient’s assistance continues, but it is not aimed at treating the underlying disease, not at fighting to the end, but at relieving severe symptoms that prevent the patient from living as fully as possible.

So hospice. Still, I would like to know in more detail what kind of world it is? Is there a place for joy and smiles in the hospice? The concept of hospice is the most terrible, and I have already said that it is difficult for me to imagine how your activities are carried out. You can really say that life ends there. How to live in this world if you understand that death is near, people are dying?

You know, I still have the feeling that real life is in the hospice. Because there are no illusions - both among employees and families under our supervision. We know how to appreciate every moment of life, every day. It is this slogan "Embracing Life" that is laid down as an epigraph to our book and to all our methodological publications. Each of the hospice services helps patients live each day to the fullest. One of the most pleasant compliments that was once said to me when visiting a children's hospice: "Father, you have smiles in your hospice." Indeed, there are so many interesting things happening in the hospice that people smile when they come there. Not because they are entertained there, but because we accept life as it is given to us by God. Life has a beginning and an end. And when a person accepts this as a kind of reality, a kind of reality, he learns to thank God for every day of this life.

What do you do for children? I know there are cases when some stars, even world-famous, sent letters, congratulations. Are there any other examples (it's correct to call it "fulfillment of children's desires"), some kind of small joy for children? What is carried out within the framework of this project?

This is a project that arose in the very first days of our activity, at the beginning of 2000, we never came to a patient empty-handed. Coming to get acquainted, we tried to find out how the family lives, what interests the child has, and tried to do something unexpected that would bring real delight to this family. We saw that by fulfilling some secret dream, we give a person the strength to live, the strength to fight the disease, a certain motivation that helps to live, no matter what. Subsequently, this approach was formalized in a separate project "Dreams Come True", in which children talk about what they really dream about. And the psychologist, talking with the children, evaluates how the fulfillment of this dream will help the child in preparation for the next course of chemotherapy or in order to restore strength for rehabilitation.

Dreams are very different, but the fulfillment of this dream brings joy not only to the family, but also to those who fulfill this dream. Therefore, both stars and politicians come to the children's hospice. They come not to show themselves, but to feel like a real magician. When you work miracles in this world, you understand that you do not live in vain. You see the grateful eyes of a child, and this gives you the meaning of your own existence.

The dreams of children are different: someone wants to fly a helicopter, someone wants to pet a raccoon, someone wants to meet a star, someone wants to fly to Disneyland. And it's actually not hard to make dreams come true. There are hundreds of them, because there are a lot of children's hospice patients, but there are also many responses. And all the dreams of children come true. I am very glad that this initiative of the St. Petersburg Children's Hospice was taken up by many other foundations, and they are also learning to listen to the wishes of patients and fulfill them.

- Can a simple person help you with this? And how to do it?

Of course it can. I think that this person needs to think first of all why he wants to do this, think about what he wants to do, and then write to us at the children's hospice mail. Go to the website of the institution children's hospice.rf ("children's hospice" is written in one word, in Cyrillic, in Slavonic letters), in the "contacts" section there is an email address that you can write to, and we will answer. We really believe that every person who came to help the children's hospice is God's gift to us, because in this we are the Church, because together we are a single organism - the Body of Christ.

- Father Alexander, and what: the child wanted to Disneyland - and flew to Disneyland?

Oh, it happens regularly. Children fly to Disneyland and visit other amazing places. And you know, this turns out to be an experience that is very important for the family, since the child does not fly alone, but is always surrounded by his parents, brothers, sisters. And this experience of a joint journey, in which the world is revealed to the child, new impressions, turns out to be very important for all family members. They cherish this moment spent together. In fact, there is nothing difficult in fulfilling the dream of a child. But it is important that someone organize this miracle.

Sooner or later, all of us are faced with a disease, our loved ones, relatives get sick, and it is very difficult for us to experience this. Could you give advice to people whose life has come into trouble - an incurable disease: how to relate to this and how to live with it? After all, very often people grumble at God, at life, and then despair ...

Sometimes people really believe that sickness is a punishment for some sin. It's not true, it's a lie. God came to save the world. God has revealed Himself in this world as One Who does not in any way consider that illness is a punishment for some kind of sin. He saw a sick person as a sufferer and healed him. Thus commanded us to treat the sick in the same way. Sickness comes to every person. And when she came, first of all, you need to see in this, probably, a part of this life. The Lord suffered, and we need to go that way; this is the path of our Calvary. But along the way, God is always there. His presence is felt with special sharpness and clarity precisely during the period of illness.

What to advise? Speak to God - in simple language, as it turns out. And you need to know that the Lord always hears you. It is difficult to answer the question why this happened. And there may not be an answer to this question. Someday the Lord will explain. But the most important thing is that on this path the Lord will always be with you.

Question from a viewer: “You said that when a person realizes that life is finite, he begins to thank God for every day he lives. Tell me, is there any other way to make a person develop, besides how to realize the proximity of his death?

I think admiration for the world, love for the other will make you strive for perfection. Fear cannot be the real motive. It is impossible to be a poet, an artist out of some other motives, except for the desire to love and give this love to others, out of boundless admiration for the beauty of the universe. Therefore, love is able to change a person and is able to change the world for the better.

- Father Alexander, what kind of activity in the hospice do you carry out exactly as a priest?

First of all, this is the activity of a shepherd in the sense of an interlocutor. I want the interlocutor to have the opportunity to talk with me about what really worries him, about what his soul hurts about and about which he cannot talk to anyone else. During such a conversation, most often a person talks about his spiritual experience. And any performance of the sacrament is a continuation of the conversation. The activity of a priest in a hospital is always, first of all, pastoral activity, the activity of a person with whom it is convenient, comfortable to talk heart to heart. The next step is liturgical activity. By no means preaching, because it is impossible to preach at the bedside of the sick, it is wrong, unethical.

That is, you come and just talk, and the person opens what he sees fit. But you are talking about an adult who is dying. What can children say?

Children have a very interesting experience of meeting with God. And it will be interesting and useful for any priest to talk about what they have experienced, how they perceive God. This will be a difficult conversation for any priest, because the priest needs to learn to listen and delve into the experience of the child. The experience of meeting a child with God very often turns out to be deeper than our experience with you. If a priest knows how to see behind the words of a child how the Kingdom of Heaven has opened up for this person, he will greatly enrich himself. And, probably, his task as a shepherd will be to affirm that this experience is correct, is really a meeting of a child with God. Then the child will feel that he really met with Christ and it is Christ who helps him to go through these difficult times.

You said that the hospice is non-denominational. That is, you also have children from families who have no idea about God ...

There are just citizens of our Fatherland, people who are sick, who find themselves in a difficult life situation. And spiritual help is only one of the aspects of the hospice activity.

- That is, the Church does not close it, it is open to everyone.

Yes, and many turn to the help of teachers, psychologists, and some other specialists. After all, spiritual assistance to the patient can be provided by a nurse or an employee of another service, with whom the parents manage to build a confidential conversation.

Have there been cases when in your hospice people who did not believe in God came to God through the hospice, through the suffering and illness of their children?

The hospice is not a place of preaching in the first place. And you cannot evaluate the activities of a hospice or a priest in a hospice from a missionary point of view: how many souls you have acquired. Hospice is a place where we try to meet each of the needs of the patient, whatever it may be. And if these needs are only physical, or only emotional, or creative, and a person limits his spiritual experience on this - and thank God! Our only task is to enrich this experience and, probably, help a person to survive this period. After all, it is very difficult for you and me, healthy people who live and create something in this world, to imagine the strength of experiences that occur in the souls of our interlocutors. Therefore, you need to be very attentive, very responsible in connection with what you are talking about and what kind of spirit, what information you bring.

- You, as a director, probably go on rounds ...

Of course. And most often in the institution I am in a white coat or suit. In the cassock only when the patient asked me to play the role of a priest in the first place, when the cassock and the cross are part of my pastoral and liturgical service.

Question of a TV viewer: “Father Alexander, do you have any statistics on the city of St. Petersburg, how many children need palliative care? Another question. Are there similar institutions in other regions, in other large cities of our Fatherland? How will it develop further? And the third question. Sitting at the TV and watching you, faced for the first time with such a phenomenon in our lives as a children's hospice, can we do something to help and how can this be done? Thank you very much, thank you."

There are about three hundred patients in St. Petersburg who need palliative care, they receive it as part of the activities of a state institution. About seventy patients in the Leningrad region receive this assistance from the medical institution "Children's Hospice". In the Moscow region, we assume that there are about five hundred patients, due to the length of the region and the large population.

After the opening of the St. Petersburg Children's Hospice, specialists from the regions began to come to us, which helped them to start their activities in other parts of our country. A children's hospice was opened in Kazan, Vladimir Vladimirovich Vavilov worked very hard to open a hospital and an outreach service. In Moscow, there are several initiative groups that are successfully operating as field services, and the construction of an institution is underway. St. Petersburg has hosted several training seminars and conferences: over the past few years, we have held conferences three times, attended by more than three hundred representatives from more than sixty regions of the country. They got acquainted with both the theoretical part of the hospice's activities and practical activities, they came to us for trainings and study visits. We regularly host such training events.

After the entry into force of the Federal Law "On the protection of the health of citizens", in the 36th article of which it is indicated that palliative care is one of the types of services provided to the population, after the entry into force of the "Procedure for the provision of palliative care", this type of service is provided in almost all regions. But most often these are offices or some kind of field services that are trying to solve the most acute immediate problem: so that the child and his family members at the stage of the terminal development of the disease are not left without medical care. Of course, these services require special training, require the involvement of other specialists, the organization of a special space. But, thank God, this process has begun, and children's hospices will be created in other regions as well.

- Are you working on it?

We are working. Last year "Children's Hospice" published more than forty different books and manuals. This year we are publishing several books for both medical professionals and psychologists, for parents and children. These books are available on our website childrenhospice.rf, where you can download them. These books and manuals help not only convey clinical experience, but also convey the spirit of the institution, the very philosophy of the children's hospice.

There is a well-known phrase: faith without works is dead. You show an effective example of love and attitude towards a person. The Church can do a lot for society, and you have demonstrated this very well. Tell me, how can the Church help the state in solving socially significant issues?

First of all, providing direct assistance to the citizens of this state. Look at the number of social initiatives that are now operating on behalf of the Church: various shelters, hospitals, institutions, medical centers - not even to list the number of different projects that the Synodal Department for Charity, diocesan departments, and just each of the parish priests are currently conducting . Probably, we need to talk more about this and systematize this experience in some way. A trend that is now emerging in society: the state is beginning to delegate these tasks to the Church, public organizations, non-profit organizations (and each parish is legally an NPO) to solve these problems. It turns out to be economically more expedient, more efficient, because the target audience receives this type of service with greater quality and in an individualized way.

As a seminarian, this is very interesting for me… To be honest, I know about the hospice only by hearsay, and only today I got to know it very widely, like many of our viewers. Tell me, what experience did the seminary give you that helped you realize yourself in the future precisely in this obedience, in this service to people?

Petersburg Seminary is a wonderful institution; and one of the qualities that is instilled in each of the students is the opportunity to realize yourself in what you love. I remember my first lesson on September 1 in the first class of seminary. This is a Bible history lesson taught by Igor Tsezarevich Mironovich. We went into the classroom, read a prayer, sat down at our desks, and Igor Tsesarevich asked everyone to tell us a little about themselves. We stood up, said our name, said where we came from, and talked about what we were interested in. Someone said that he was interested in history, someone in languages, someone in the Holy Scriptures or worship.

After listening to each of us, Igor Tsezarevich said: “The Lord has brought you here because you are very talented people. And the Church will give you everything you need to be happy. But remember that the Church will always expect your offering to God from you.” That's when we somehow very deeply accepted these words, they sunk into everyone's heart. And I look at my classmates, each of us brought them to life. We try to bring our gift to God. And in this we realize ourselves both as priests and as Christians.

- But there is a shortage of personnel?

There is a shortage of personnel, and, probably, the generation that is now coming to enter the seminary should learn from the old school, should peer into the experience of teachers. The Church is a continuity of spiritual experience; it is not only the study of some sciences. It is very important that the priest be literate, but it is also the succession of the spirit. And we had good teachers, and their lives should be listened to and imitated.

- They are.

They are.

What advice would you give to young priests, priests who are delegated by the Church to serve in society? What would you say to them first of all?

When my priestly consecration took place, the service ended, I went up to my rector to thank him for his prayers, for bringing me to this day (and he was a subdeacon of Archbishop Luke (Voyno-Yasenetsky), and it was St. Luke who blessed him to act to the Simferopol Seminary and then go to the priesthood). He, looking straight into my eyes and very penetratingly, asked: “Was it scary?” I said, "Terrible." He replied: “Now, if you keep this fear until the end of your life, you will be saved.” Precisely these same words were said to him by St. Luke, and, probably, these words serve as a good instruction for all priests: to keep your first love, which led you to the seminary, to keep the fear that you experienced during ordination.

Some practical advice, maybe?.. Now it is difficult to take up some kind of activity (social activity, socially useful): you don’t know where to start. What would you advise in this situation?

You should always start with something specific. Just listen to your parishioners and start doing what they ask you, what they ask you to do. I am sure that the Lord gives each of us the necessary resource, opportunities for us to realize ourselves as priests, as people responsible for this society.

God save Father Alexander for this wonderful, amazing conversation. I hope that our viewers were very interested. We opened a certain page of our social life, which many did not know. Father Alexander, we wish you, first of all, success, health and strength in your good cause. We hope that your projects and all your undertakings will continue as successfully and will serve the benefit of the Church and our Fatherland.

Thank you! It was very pleasant for me to talk.

- Finally, I would like you to give some guidance to our viewers.

It seems to me that all the instructions that we need for life are given in the Holy Scriptures. If Holy Scripture is the book that is always open on the table, and if each of us read at least a few lines every day, this will fill life with meaning, soul with warmth, and life with content. The Word of God must be active in us.

Host Sergey Platonov
Recorded by Nina Kirsanova

The director of Russia's first children's hospice in St. Petersburg, Archpriest Alexander Tkachenko, talks about the formalism of the priests, unnecessary phrases and his fears.

People do not forgive the priest formalism

- Father Alexander, you work in a hospice, you have to deal with grief. In grief, we usually say to a person: “Hold on”, “Everything will be fine”, “God gave, God took”. To what extent are these correct words?

- The phrase "God gave - God took" - does not console at all. You have to think twice before you say it! Yes, conceptually we all agree that everything we have is given to us by God, and what we lose is also God's. But, having said this phrase to a person, you, firstly, will not help him in any way to understand the world order, the presence of God in his life, and secondly, you will cause aggression, and the person will not want to talk about this topic for a long time.

Consoling, you have to be very sensitive. Moreover, one must understand that people of different cultures have different ways of expressing grief and consoling. For example, if someone, experiencing the bitterness of loss, can sob loudly and tear his clothes - this is typical of certain peoples - then representatives of other peoples will restrain themselves. However, restraint of feelings does not mean at all that a person does not worry about the misfortune that has happened!

And you can express consolation in different ways - you can hug someone, but you don’t even need to try: something that is typical of our culture - somehow stroking, hugging a person - in other cultures will be perceived as an insult.
Well, for example, the wife of an Orthodox Jew should not be hugged, because it is prohibited by law.

That's why we recently released the book Questions We Don't Know the Answers to. This is a guide for palliative care professionals. After all, different families find themselves in a hospice, and a nurse, a driver, and security can become their interlocutors. In order for all hospice staff to learn to respect the cultural, national, religious traditions of families and not make mistakes that will lead to some kind of shock, such a book was written. The questions are answered by representatives of different faiths and religions, because the palliative care service is, in principle, non-denominational. But it is ideological issues that confront patients and their loved ones most acutely.

- Will an atheist who picks up this book find something for himself in it?

– Yes, there is a chapter dedicated to people who do not have religious beliefs. But the answers that are given there, rather, cannot be called answers - atheists also do not have answers to these questions.

– Is it true that it is easier to empathize, to console, if you yourself experienced a tragedy in your life?

- Not always. The troubles that happen in our lives, of course, teach us a lot. But everyone has their own school of life. And your life experience may not be suitable for another person. Saying "I was there, I know" won't help him get over his grief.

Therefore, probably the greatest thing we can do for a person in such a difficult life situation is to be with him.
Not to give advice, but to be able to listen to those feelings and experiences that are now happening to him. According to the gospel, we must bear the sorrow of another. The Lord says: "Carry each other's burdens and thus fulfill the law of Christ."

But, of course, you are right that a person who has experienced some kind of personal loss may be more empathetic than someone who has never been in such a situation. People who have seen pain and death may become more empathetic, or they may become more rude. They can also become cynics.

- What helps you personally to be sensitive, console, find the right words?

“First of all, I am a priest. Because I address my questions to God, I stand before the Throne, face to face, and I feel good. There I find answers to my questions.

Are there any questions you can't find answers to?

- I think these are the same questions that are listed in the book - those that God Himself will answer us when we meet. And until this moment, we are helped by the realization that there is a Personality Who knows the answers to all questions. And we live in the hope of this meeting. This is called faith.

“A priest is usually expected to know everything: “Batiushka knows, the priest will answer why the Lord punished me.” Are you facing this kind of attitude?

– You know, in life, many priests really try to give a simple answer to complex questions. But this is such an unforgivable formalism, which most likely testifies to the superficial spiritual life of the priest himself. People often do not forgive this formalism to the priest. If the priest has answers to all questions, then this is very bad. Because there is no single answer to the same problem for different people - everyone has their own life story. Similar situations for different people have their own history, their own reasons.

– Now there is a lot of talk about “burnout” of priests, “burnout” of volunteers, and so on. What helps you personally in difficult situations?

– I like to read the Akathist to the Mother of God. I love to pray, I love to stand in the service - sometimes to serve myself, sometimes just to be present at the evening service. I am, first of all, a priest who studied and prepared to be in the temple. I feel good there, my home is there! Everything else is just the embodiment of the Church's activities for society, and the children's hospice in St. Petersburg itself was created as a mission of the Church for this society.

Everyone will be given a diagnosis that will send chills down their spines.

Why did you decide to become a priest?

– It is difficult for me to answer this question. It was always an intuitive pull: I always felt good in the temple. Although it was the Soviet period, and my parents held high state and party positions. My departure to the Church came as a shock to them and led to problems at work. This was in the 1980s. My father was the head of the design bureau of the Baltic Shipping Company, my mother was in charge of the warehouses of the city executive committee. And I… felt good in the temple!

- Somehow you got to the temple for the first time. How?

- This is what is called - the Lord brought! You know, in the coming to faith of many modern people, a key role was played by their grandmother, who once baptized them and took them to church once. So I also have a vivid impression of early childhood from this first visit to the temple, the feeling “it’s good here.” And then it surfaced in my school years, when I came to the temple again and realized that this was really my home!

Then this decision became more and more conscious, and I did not see any other way, but the way of serving God. Probably, I didn’t really want to be a priest, but I just wanted to be in the temple. In his student years he came and worked there as a watchman. I studied at LETI - Leningrad Electrotechnical Institute.

I studied there for a short time, did not finish. And I got there because I finished school well, so I was immediately taken to the institute, to the faculty of biomedical electronics, without exams. I studied there for a year and decided to enter the seminary.

– Nevertheless, the faculty was also connected with medicine! And the fact that you were one of the first to go to the United States to study at the chaplaincy course at the hospital, is it by chance?

- That's a different story. There was perestroika - a time when the borders were opened, and a huge number of representatives of other churches came to Russia, in particular, representatives of the Episcopal Church traveled a lot from the USA. The life of resurgent Russia, the spiritual heritage of the Orthodox Church was very interesting to them. Well, by that time I just knew the language quite well, and I was asked - as is usually the case - to lead groups of foreigners around the city and temples.

So I met a priest and learned that in America, for example, every student of the theological faculty or seminary - in general, an institution that trains clergy, of any denomination - is required to practice in a military unit, in prison or in a hospital. This is not just practice, but rather serious training that immerses the student in this environment, with the analysis of all conflict situations that may arise.

This is an opportunity for pupils and students to acquire pastoral skills in order to take care of both employees of medical institutions and patients. Or, for example, security guards of a penitentiary institution and prisoners, in the army - both officers and soldiers. Those methods, technologies that were proposed as valid, at that time were unfamiliar to us. And I asked for the opportunity to go and learn.

At that time relations between St. Petersburg and Seattle had already been established; these relations were established by His Holiness Patriarch Alexy, while still a Metropolitan. And so, within the framework of these partnerships of sister cities, I studied in Seattle. After me, several more seminarians studied, and for each of them it was a very important practice in their pastoral life.

- What did you do? Probably, very young people were not allowed, say, to comfort relatives or talk to seriously ill people?

– Well, in general, in the West, people who are already accomplished, middle-aged, who already understand that they are going precisely to serve other people, enter the seminary. What was the practice like? This, perhaps, can be called immersion in the environment. Any pastor who plans to serve in a hospital needs to understand how a patient with a serious illness feels, including the whole complex of emotions and feelings that he experiences. Probably, otherwise your activity simply will not be effective.

My most interesting teacher was a man who was once treated for leukemia and went through all stages of stress: awareness of the irreversibility of ongoing processes, the importance of making a decision - to be treated, not to be treated, all the experiences associated with changing one's own appearance, with a change in people's attitude towards you , with the understanding that you must complete your affairs, say goodbye to people, waiting for test results, treatment results. These are the processes that radically change the personality. And the program is built in such a way that the future priest or chaplain must pass through this through himself - in order to realize in the future what strong feelings a person goes through while in the hospital.

Unfortunately, I very often see how my colleagues make the gravest mistakes in their pastoral practice, mistakes that can have a very bad effect on patients. Starting from banal negligence, haste, and ending with phrases that, if they were said in a different setting, may mean nothing, but said in a hospital environment, they hurt mentally.

What are these phrases, for example?

- "Do not worry". "Hold on." “The Lord will help: I ​​will anoint you with oil now, and everything will be fine.” Common phrases! Said in a different environment, they may look like words of encouragement. And if they are said to a person whose life you do not know, then these words sound insincerity. And if at the same time, with all your behavior, haste, you demonstrate a desire to quickly finish the demand or, even worse, the expectation of a reward for the demand ...

Let's say a patient says to you: "Father, I'm afraid!" Any of our priests will say to this: “Do not be afraid! The Lord is with you,” and he will say it sincerely! But, perhaps, the mistake is that at this very moment the patient expressed confidence in his interlocutor, the priest, and a desire to talk about his fears. After all, there can be a lot of these fears, and they are not necessarily associated with the fear of personal death.

So, in fact, the true phrase of the priest “Do not be afraid, the Lord is with you” for such a patient will mean that the priest simply brushed him off. To be honest, this is unacceptable in a hospital, unacceptable in conversation with patients who are going through difficult treatment.

I never believed the answers "All is well!" in the hospital: when someone comes, asks: “How are you?”, And they answer him: “Everything is fine!”
Well, everything is fine in the hospital! Willy-nilly, being in a hospital bed, a person begins to think about more serious issues.

- You once said in an interview: "Diseases await everyone." Was it easy for you to come to terms with this thought?

– I am also afraid of getting sick, all people are afraid of getting sick. Anyone who says that he is not afraid, most likely, is not entirely honest. Sickness really awaits everyone, and perhaps we need to have the courage to accept our cross and follow Christ. I think this is where we become like the Lord and Savior - we cannot choose any other path than the path of bearing the cross. In my opinion, St. John Chrysostom says that the very cross that is meant in the words “Take up your cross and follow me” is sickness and sorrow.

We must understand that at some point each of us will be diagnosed, from which a chill will run down our backs, and we will understand that, in principle, we do not have much time left. And ... we are preparing for this. But we are preparing not because we are afraid of it, but because we try to live every day richly, interestingly, embrace life, enjoy the sun, enjoy the interlocutor! We try to make life not empty, we try to look for meaning in everything - we embrace life, we love life. This is our Christian worldview.

Hospice Patients Not a Resource for Problem Solving

- They usually say: “That's what you lose heart! Others are worse! Go to the hospice, take care of the sick, you will immediately stop being discouraged. Do you agree, or not every person can be sent as a volunteer to a hospice?

- Firstly, in the children's hospice in St. Petersburg - a completely different concept: this is not a place where people die, this is a place where they live, despite the disease. This place is kind, joyful - there are so many events that fill people's lives with emotions, content, meetings that they don't have outside the walls of the hospice. This is the concept that we initially laid down in our activities: to help live, despite the disease.

To help means, first of all, to make it not painful, not scary. And to make sure that the child and his parents can live every day filled with new joyful impressions and experiences. The children's hospice does not have the tragedy that other foundations write about. This concept is implemented in a different environment, and staff is specially trained to implement it.

Secondly, with regard to people experiencing depression and hoping to alleviate it in a hospice ... There is such an aspect: you should not use hospice patients or a family that has fallen into such a difficult life situation as a resource for overcoming the mental problems of other people. Hospice patients cannot be therapists for those who are in a bad mood or who have not developed a personal life.

How do you recruit volunteers and staff?

– In the children's hospice, we, first of all, consider the reasons that led people to work here. Those who seek solutions to their own problems in this volunteer work cannot be palliative care specialists.

– Do your family, sons participate in the life of the hospice?

- Yes. I handed over the management of the Children's Hospice Foundation to my eldest son - he is graduating from the seminary this year. And since he is a representative of another generation - young, creative, energetic, with a different vision - he, for his part, pours a lot of new energy, his vision into the well-established process of the foundation.

- Now many people complain about the new generation - the consumer, they do not want anything ... And you, raising your children, put into them the habit of not passing by someone else's misfortune? And how can this be done at all?

“I think you can and should talk to children. About everything! Children appreciate this, and conversations with parents are stored in their memory forever, although they may not immediately respond to what they are being told at the moment.

I have always loved and love to talk with children about all the events that are happening around. It has always been part of our relationship. And it is not important what I say, it is important that I force them to express their own position. You need to talk with children, it is very interesting to talk with them! And if children are the Kingdom of God, then adults should learn from children to see the Kingdom of God in everything.

– What do you learn from children who are in hospice?

– They have a unique spiritual experience – meetings with God. And the way they describe this experience is instructive for any priest. Because the Lord is close to the brokenhearted: those who are sick, those who are going through such terrible times, feel Him next to them, here and now. This is a unique spiritual experience, it is absent in the lives of people who have not gone through such states.

And children expect from us, rather, confirmation of their feelings - not legitimation ... they want to talk about what they experienced.

How do children express it?

– Of course, these are not theological terms, these are ordinary words, but there are living feelings behind them. They say how they represent God, how they talk to Him, what they think is right or wrong, how they understand the service, and how much the service expresses their need for communion with God. Such things…

Actually, this is not a structured pastoral conversation, it's just a heart-to-heart conversation. And questions of spiritual life are succinctly built into conversations about something else. The child most often is not ready to sit opposite you and talk about his worldview - he will talk about anything, but even in such a conversation spiritual issues can also be casually touched upon. Or the child may somehow hint that he wants to talk about this topic. The task of the priest is to hear, among everything else, something very important that the child wants to talk to him about, and at this moment express support and readiness to listen.

- Do you remember any particular conversation with the child? Can you tell?

– I am currently working on the book “50 Mistakes of a Priest in a Hospital”, so, unfortunately, stories come to my mind that are rather anti-examples.

But I can say that it was from conversations with children, with young patients in other medical institutions that the children's hospice grew. It was literally created by the children themselves! In conversations, I asked: “And if you yourself were building a hospital for other children, what would it be like?” This is a unique institution - a children's hospice in St. Petersburg - analogues of which are now being built in other regions, in Moscow, the Moscow region, in Kazan, its concept was thought up by children during a pastoral conversation. That's why it turned out so bright, that's why it became a home.

Did the kids invent the pool?

“The pool is a different story. Probably, this was my attempt to give the joy of being in the water to children who have severe contracture, when the muscles are spasmodic. They feel very uncomfortable around children who do not have such pathologies. For the same reason, they have never been to water parks, they were not able to simply splash in fountains, on water attractions, where there is water movement, hydromassage, waves, and so on. Here is a child with a preserved consciousness, with clarity of thought, with all the fullness of experiences - he does not have the opportunity to rejoice in the water just like other children ... Therefore, we simply wanted to make childhood real for them. I immediately put the pool into the concept of the hospice. There was a period of coordination - difficult and funny, which I now remember as an anecdote.

- Difficult, because no one understood why the hospital had a pool with a jacuzzi?

- Indeed, no one understood, because from the point of view of regulatory documents, hospice people must die. Why is there a pool? I say "No. You have to live in a hospice."

In general, it was such an intellectual dissonance in the head of the design organization: we are building a hospice, why a pool? I had to explain that in a hospice it is necessary to help to live, to help improve the functionality of the body, well-being, to give joy, new impressions, new experience - this is very important for organizing a quality life for patients, for the formation of self-esteem, both for the child and his family members. This is an important element! But some other arguments were given to us: this is a semi-basement room, in the basement, there are small windows, and since this is the place of work of a specialist in physical therapy, the illumination will not allow him to work. We spoke:

- Let's put lamps, spotlights!

– No, there are many other violations.

In general, there were many interviews, disputes. Finally I say:

– Listen, is it possible to arrange a temple in the hospice?

Yes, the temple can. Temple is a must!

– Then I need a baptismal font for the church. With hydromassage.
So, according to the explication of the premises, this pool passes as a vat for storing holy water with hydromassage. I have told this story many times. It just shows that you should not be afraid to go to your goal. If you have conceived something and understand that it is right, then the Lord will give you the necessary inspiration, and at the right time you will find a way to achieve this goal.

The Lord Himself answers each one, and we are called to be near

- Father Alexander, and who are you, rather, for children who are treated in a hospice - a friend, a priest, a director?

- In any way! If the children need a director, I can be the director - have a strict conversation with one of the employees. I can be a friend, I can be a priest - I have to act in different roles: to be in a suit, or in a white coat, or in a cassock. It's probably good when the leader can be different. Children are also different: their emotions change very quickly. Therefore, I feel quite comfortable in different roles.

- You once mentioned that children perceive their illness differently than adults. Could you tell about it?

- This, probably, cannot be explained with one example. Children, rather, lack the tragedy that an adult gives to illness and death: when an adult is given a diagnosis, his social ties are torn, and his idea of ​​the future is broken.

And the child most often perceives this as part of his life: I have it like this, we live with it; Yes, it's a pity, yes, it's sad, but that's how it happened.
On an adult - more responsibility: for the business, for the family. Therefore, summing up his life, he must complete his affairs in every sphere of his activity. The child doesn't have it.

- Childhood illness and death is probably the most difficult and terrible thing in our world. Faced with this, do you ever try to find causal relationships, somehow explain it to yourself, try to see the providence of God in this? Otherwise, it is probably very difficult to live ...

We don't know the answer to these questions. Everyone has their own story, and we are not called to look for cause and effect relationships in every story. But we are called to be there when a person is looking for answers to these questions. The Lord Himself answers each! But to build a conversation in such a way that a person addresses this question to the One who knows all the answers, so that he can then hear the answer and accept it - this is the role of the shepherd. Our role is to lead a person to God, and the Lord Himself answers all questions...

- I read that when the first patient of the hospice died, you gave some employees the day off so that they could recover. This is true?

- Everyone is experiencing. Everyone has their own strength of experience, depending on the proximity to the departed patient or his family. The loss of a person, even if he has been seriously ill for a long time, hurts, because this is parting, this is the termination of existing relationships. Therefore, the hospice has a tradition: after the death of a child, a candle is lit, it burns for a day, this gives everyone the opportunity to stop their run a little, sit, think, give time for grief to each of the departed patients, remember him. This is how everyone realizes what happened, we pay tribute to a person’s memory and grief. Don't know…

Probably, each employee had his first patient ... therefore, the reactions are different, and people are different.

– After the death of a child, his family is accompanied by hospice psychologists for 14 months. Why such a period?

- This is written in the documents regulating our obligations towards patients, this is a necessary part. But life is different.

We are ready to be there. Most often, families maintain contact with the psychologists who accompanied them, and they are the interlocutors who help this family to experience and comprehend the loss that has occurred. But if relatives want to comprehend what happened, to be alone with themselves, we respect this desire. At the same time, they know that we are available for a meeting: we periodically make ourselves known, for example, by a call or a letter on the day of the child’s memory, on his birthday - we kind of say that we also remember him, that this day is important for us . And, most often, even those who move away in the initial period, after some time come back. Each person goes through the stages of stress in different ways and expresses their pain in different ways, and what is characteristic of one is not characteristic of another. People are different: someone wants to close, and someone wants to talk. Therefore, it is necessary to express sympathy in different ways.

We regularly have meetings of parents who have lost their children, and a lot of parents come. This is not a boring therapeutic conversation where people sit in a circle and talk about something. This is a meeting of people who have lived together a very difficult period and are very happy to see each other.

- You can't give advice. Because you do not know what is going on in the soul of another person. It is important to express your sincere empathy and desire to be there, if given the opportunity. We can offer to walk this path together with a suffering person - not giving advice, not trying to console, just being there. Well, what words of comfort can be found for a mother who has lost a child? There are no such words! No words can change everything, turn back time. But we always appreciate those people who were our friends in a difficult period, who could listen to us without making critical remarks, without giving advice, who walked this path with him day after day, who were attentive, patient - we appreciate such friends. . Those who are unobtrusively, but have always been there.

You will have to go through different stages, and in different periods our help can also be different: sometimes you can just sit nearby, sometimes you can solve some everyday issues, go to the store, for example. You can just live there, side by side.

You know, it happens that a person who has lost his loved one simply does not have enough strength to get out of bed. Because life loses its meaning for him, he asks himself “why everything else?”, And this question simply nails him to the bed.
He has no answer to the question "why get out of bed." You can offer just a cup of tea to drink - and this turns out to be important.

Here you can answer the whole book! By the way, we also have a book on communication, where we analyze different cases and examples. It can be found on the website of the children's hospice, like all other books: there are about 40-50 books, manuals that we have published.

The problems of the seriously ill are not solved only by laws

– Father Alexander, you recently became a member of the Public Chamber. How can this help palliative care, your and other hospice activities?

– There are several aspects of activity. Firstly, the Russian Orthodox Church is indeed leading many social projects. We sometimes hear about this in the media - thanks at least to your portal. But the Public Chamber provides an opportunity to speak from a high, authoritative platform that the Church has a unique experience in solving the social problems of society. And society and the state can listen to this experience. Children's hospice is just one example of how we are able to solve the problems facing modern healthcare and social protection authorities. This is very important!

The second important aspect is that in order for palliative care to be available in all regions and to be of the same quality as in St. Petersburg, it is very important to combine the efforts of the state, public organizations, and commercial structures. This is such a global task, but, of course, my activities in the Public Chamber will not be associated only with scaling up the experience of St. Petersburg in creating palliative and hospice services. First of all, it will be aimed at changing the attitude in society towards the disabled, towards people who find themselves in a difficult life situation. Still, I really want to morally change society - this is my ministry as a priest: to save the world with my work. It can be a service in the temple, and maybe a public service. The Public Chamber provides an opportunity to speak about eternal values ​​in the language in which people are ready to hear us.

- You mentioned the attitude of society towards the disabled, towards people who find themselves in a difficult situation. What's wrong with us? And why?

- Firstly, there is a certain stigmatization: people are afraid of those who have contracted some kind of disease that threatens their lives. There is a sense of danger, it is genetically incorporated. For example, mothers will protect their children from communicating with a child with cancer, they themselves will wash their hands once again after communicating with a cancer patient - just in case! And this is very acutely felt by the patients themselves ...

Or, for example, people do not know how to behave when there is a person in a wheelchair nearby. Not because people are bad! It’s just that no one has ever taught them how to communicate with a person sitting in a wheelchair…
Undoubtedly, people with disabilities should have the opportunity to take a worthy place in society, to live and work, like everyone else, to have the opportunity to realize their talents. This is called the term inclusion. But the fact is that these issues are not solved only by lawmaking! The law can only provide an opportunity for changes, and the changes themselves occur due to the activities of priests, journalists, public people - artists, poets, and so on. Because we are changing the soul, and the law gives us the opportunity to speak on these topics, the society - to listen, to change, for the disabled - the possibilities of an accessible environment.

Has anything changed in recent years?

- Yes! I can say that the first ramp in the theater in St. Petersburg was built thanks to the fact that we asked for it. 15 years ago, there were no ramps in museums and theaters, and when I had to bring children's hospice patients to the theater, when I met with the director, I said: "You know, we can't come to you because you don't have ramps." And then they raised money and built a ramp! And it was the first ramp that was made in the theater. The second one also appeared at the request of the Children's Hospice.

These are the changes that are taking place in our society, they are also initiated in other regions thanks to the activities of various public organizations and parishes.

– Father Alexander, you have many church and public awards. Which one is the most valuable for you? Or is the reward something else for you?

“My reward is that I am a priest. This is probably the very gift that Metropolitan Vladimir gave me (Metropolitan of St. Petersburg and Ladoga Vladimir (Kotlyarov), retired since 2014. - Ed.) 20 years ago - on May 25, it will be exactly 20 years since my consecration . Metropolitan Vladimir is now retired, but these days he will be in St. Petersburg, and I asked for a meeting with him and for a joint service, because it is very important for me on this day, when I became a priest, to serve together after 20 years with the bishop who ordained me. And say thank you to him.