Conversations with the priest. Children's hospice

Director of the children's hospice in St. Petersburg, Archpriest Alexander Tkachenko: We do not talk about death

In the “Fruit of Faith” program on the Soyuz TV channel, Archpriest Alexander Tkachenko, director of the first children’s hospice in St. Petersburg, spoke about his experience of working with terminally ill children: about life, joy and the fulfillment of his most cherished desires.

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

Somehow everything happened naturally. As they say, God gave. Probably, for every priest who stands before the throne, it is very important not only to bear the name God's people, but also to bring people the miracle of God and the healing of God, and the love of God. It so happened that a lot of people, families whose children were sick, came to the church where I served, the St. Nicholas Naval Cathedral in St. Petersburg, and in a pastoral way we helped them, collected some funds, bought some... then medications, we invited specialists for additional consultation, but we wanted to do a little more.

We understood that within the framework of the existing rules for providing medical services the state does what it can do, and there is always the opportunity for the Church to do a little more. At that time, as well as now, from the moment when a 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 comprehensive medical care. This assistance is high-tech, it requires the use of painkillers, it requires very intensive therapy at home, good quality care. Because life and its duration will depend on this care. And 10 years ago, in many ways even now, this was impossible due to the existing rules for the provision of medical services by healthcare forces. And here the Church found some kind of ministry for itself.

At first, we simply found people who would come to these parents' homes and take care of 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 there is no need to bury the child while he is still alive. We must give him the opportunity to live a full life. Play, communicate, learn something new.

All our activities were related to organizing a full life for a child, based on his physical condition. Doctors did what they could to improve functionality, relieve pain, enable the 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 didn’t have many patients, 10 years ago. We looked after six families. Over time, our activities became known, more and more people began to turn to us. large quantity people, and over the years we have grown to 70 families. And they could no longer reach such a number of people who applied on their own.

Then, on the initiative of the St. Petersburg diocese, a medical institution was created, largely due to 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 healthcare system.

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

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

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

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

How many wards do you have now?

Now there are about 300 children that we are observing, these are residents of St. Petersburg, we are seeing about 70 children from the Leningrad region, there are visiting teams that come to their homes. The hospital receives about 20 patients for round-the-clock observation and 10 patients come to the day hospital.

How long can children stay in hospital?

It depends on their condition and the range of services they need. If the child's condition is so serious that it can be assumed that he has weeks rather than months to live, then the child is kept until last day. If the child’s condition is better and the hospice’s activities are related to the organization of his full life, then he stays for up to 21 days, then goes home and 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 were not afraid of what might follow after such a challenge to society. It is very important for us that changes have occurred, and now society needs us, and we can show this society that the Church is capable of solving state problems. This is 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.

In this regard, I wanted to ask just 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 should you be afraid of the topic of death. Unfortunately, there is a fear of touching this topic in the public consciousness.

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

As for experiences, it’s probably easier for me than everyone else, since I’m a priest, and on the days when I perform the Liturgy, I appear before God, and my fears before the Face of God go away, I turn my empathy into prayer, and it becomes easier for me. Less religious people who work in a hospice (and people of different nationalities and different religions work in a hospice) also find some mechanisms that help them not to become hardened, not to lose this necessary warmth 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 there is very attentive to each other, everyone there smiles. Patients, parents, and employees - they live the same life. This probably comes from the very philosophy of hospice. We are not talking about death from oncology or from some other disease, we are talking about how to live when there is presence in your body incurable disease. We continue to live, we embrace every day of life, we find joy in every moment. This approach helps not to lose your presence of mind.

Please remind us of the words of His Holiness the Patriarch, which 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 at 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 High Hierarch of the Russian Orthodox Church, as a highly spiritual person, this presence was obvious. And for us this evidence is very important.

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

The day starts normally. This is, after all, a hospital, a nurse comes in the morning and makes some conclusion about the patient’s condition in the morning, takes the temperature, but then things begin that do not happen in a hospital.

Each day has a theme or each week has a focus. For example, a week is dedicated 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 tell him about some of the 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, there will be creative classes in which children will draw water depths or some other scenes; maybe one of the submariners, people who sank to the bottom and took photographs, will come and can pass on their experience. A film will definitely be shown.

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

In this regard, I would like to ask how active our famous 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. It’s not even just that we invite them, it’s very nice that, having learned about us, they express a desire to come to us. More recently, the CSKA hockey club expressed a desire to become our boss, 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 told us that children will be more actively involved in the life of the club - perhaps going out onto the field and making the first drop of the puck, or they will have the opportunity to go out and ride around the hockey field with the hockey players.

This is another example of how society fills the lives of children in a hospice with meaning. This is one of the most important aspects when you begin to comprehend what you have done in your life, and how effective 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 have really accomplished a lot, you can do a lot, you know a lot, you have met many - and this is a very important part of the hospice’s activities.

This is related to one of your most famous projects- this is the fulfillment of the wishes of your wards...

This is the “Dreams Come True” project. It arose as a natural continuation of the psychologist’s activities in the patient’s family. When a child’s condition worsens or when some serious operation is planned and the psycho-emotional status needs to be raised, or when after an operation the mood needs to be lifted a little so that there is strength for rehabilitation, the psychologist tries to find out from the child, from his family, what his secret dream is.

This is the very secret one that lives somewhere in the depths. It's not that he just wants to have a computer like someone he knows. But besides 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 give away a computer too. But here is that same bouquet of daisies in winter that he dreams of, or about a meeting with some famous football player or a boxer, or...

What were your most unusual desires?

I’m probably already used to unusual desires... Well, a few examples to give this picture a little.

The child wants to meet some famous American band, which doesn’t even happen in Russia, and we understand that it is impossible for us, with our small resources, to bring a world-famous rock band here. But children love, for example, the Tokio hotel group. There were several groups, so I purposefully do not name them, each of them. Or, for example, Adriano Celentano, a famous singer, a world star, but he is not traveling now, he lives in his villa and does not plan to come to Russia, but 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 invited the boy to write a letter. Well, we can’t meet with Adriano Celentano now, but you can write him a letter, we’ll pass it on to him. He wrote, and in response he received 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 said that there are illnesses in life, and the most important thing in these illnesses is not to lose heart, not to despair. Such a simply heartfelt letter was written, which brought the joy of meeting the child with this star.

I know that another one of the requests was to become a successful businessman. How is this done?

Very beautiful story. It rather shows that in every such story there is an element of creativity.

The team at the hospice always tries to fulfill exactly how the boy or girl feels, exactly how they dream. Well, in the minds of modern children, success is associated with certain attributes, that is, this is a job in a large company, this is a certain style of clothing, a jacket, a tie, some kind of leather briefcase, maybe even the car that he drives to work.

This 17-year-old boy, who was unable to finish 11th grade due to illness, completed 9th grade, and then an illness occurred and he had to be treated. And all his classmates passed their exams and began to enter college, but he couldn’t. And this pain from the fact that he is a loser, it lurked in my soul, and one day he expressed it, that nothing had worked out in my life. And the psychologist heard this phrase, said somehow in passing, and, after talking with one of the heads of large companies in St. Petersburg, he came up with such a project. He was invited to work quite seriously, the company said that we are giving you the position of head of the department, we feel that your experience suits us, this is an interview and everything is absolutely serious, they told him that we need such a person. He was given money so that his appearance would correspond to the duties assigned to him, and he went to work on Monday.

They sat him down at the table and said: I need to take a piece of paper from here and bring it here, and they offered him some kind of work. After some time we met, and I just saw happy person, because he was cooler than his classmates. A car met him, took him to work, he did some very important assignments, received a serious salary, he really was the 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 lunch there, and then they played. We invited a famous billiards champion and he showed a master class. Here's the story.

Let us clarify that the disease does not occur from birth, but comes already at some age, right? There are situations when a 15-16 year old child can live absolutely naturally, normal life, and something happens, a disease is discovered. This disease can last for months, it can last for years. That is, this, unfortunately, 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 take them down from the cross. And, wanting to become like Christ, we must prepare ourselves to bear part of this burden. Thank God, if anyone escapes this cup, but illnesses come to everyone, they come to children too.

What is most striking is that children accept their illness more correctly than adults. We practically do not encounter the kind of tragedy that an adult experiences, associated with dashed hopes, a failed life, and non-realization of oneself, in children. There are rather more vivid human feelings associated with the bitterness of parting, with an unrealized feeling of love. Adults somehow perceive and evaluate the effectiveness of their lives in a slightly perverted way, from the point of view of some kind of 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 government agency, we are guided by the rules that define and regulate our activities. We accept children from 3 months to 18 years. 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 unattended.

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.

“Orthodoxy and Peace”/Patriarchia.ru

CEO autonomous non-profit organization "Children's hospice" in St. Petersburg, State Prize Russian Federation For outstanding achievements in the field of charitable activities, Archpriest Alexander Tkachenko, according to Decree No. 116 of Russian President Vladimir Putin, was approved as a member of the Public Chamber of the Russian Federation as part of the presidential list.

Archpriest Alexander Tkachenko focuses his activities on the problems of the palliative care system for children in Russia. “A lot needs to be done to ensure that assistance to a family facing a serious illness of a child or another difficult situation is of high quality,” he believes Archpriest Alexander Tkachenko. “This is due to changes in legislation, changes in the system of assistance itself, but most importantly, in society’s attitude towards families in difficult life situations.”

According to Father Alexander, Russian society must become inclusive, must change attitudes towards people with disabilities. “Our society must be merciful and kind, for this we need the combined efforts of many people different areas activities, different professions, beliefs, confessions. The Public Chamber of the Russian Federation is a good platform for making the world a better place,” says the priest.

More than ten years ago, Archpriest Alexander Tkachenko created the St. Petersburg Children's Hospice - the first institution in the country similar type. A few years ago, a palliative care hospital was created in the village of Olgino, Leningrad Region, a children's hospice is currently being set up in Pavlovsk, and a children's hospice is being built in Domodedovo, Moscow Region. Their opening is planned at the end of 2017, reports the press service of the Children's Hospice organization.

The St. Petersburg Children's Hospice provides medical and psychological assistance children with incurable diseases, as well as their families. “The system of palliative care for children is now in its infancy in Russia. Now it depends on us what kind of help children with serious and incurable diseases and their families will receive not only today, but also tomorrow, and in the next ten years,” says Father Alexander.

The Church pays special attention to issues of social service and, in particular, to issues of helping seriously ill people. In Moscow, there is a children's mobile palliative service and a respis - a round-the-clock stay group - for seriously ill children. These are joint projects Orthodox service assistance from “Mercy” and the Marfo-Mariinsky Monastery. The children's outreach palliative service helps children with rare diseases such as Duchenne syndrome, mucopolysaccharidosis, spinal muscular atrophy and others. There are 80 seriously ill children under the care of the palliative service. Up to 6 children can be in the registry at the same time; wards of the registry, accompanied by one of their parents, can spend up to 30 days a year there. Experienced doctors and teachers help not only the child, but also his parents: while their son or daughter is on the list, they can rest a little. also opened in the Moscow church hospital of St. Alexy, Metropolitan of Moscow. In 2014, a mobile palliative service appeared in Tver, and it is also led by a clergyman - cleric of the Church of the Intercession of the Mother of God, Archpriest Alexander Shabanov. Behind systematic work in the field of helping people, created by Father Alexander, received an award from the Commissioner for Human Rights of the Russian Federation - the “Hurry to Do Good” medal.

Press service of the Synodal Department for Charity

In the Moscow studio of our TV channel - the head of the children's hospice in St. Petersburg, the rector of the house church attached to it, as well as the rector of the Church of St. Nicholas the Wonderworker at the intersection of Dolgoozernaya and Planernaya streets and a number of other churches in St. Petersburg and the Leningrad region - Archpriest Alexander Tkachenko.

Father Alexander, you head a children's hospice - this is the first healthcare institution of its kind created by you and your assistants in our country. And my first question for you is: how do you manage to do everything? Which moments in work and in life are of primary importance and which are secondary?

This question probably comes down to setting priorities, what is most important. It has always been a very important feeling for me to not live my life 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 involves me as a priest or as a person, if I don't have the opportunity to do something good for someone, I really feel bad. Apparently, this is the very faith that the Lord once formed. A day lived without God somehow loses its meaning.

Please tell me 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 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. Throughout its history, the Church built hospitals, hospices, almshouses, and orphanages. In the current conditions, when society was going through a period of serious changes, the Church was given the opportunity to show its 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 cannot be treated or children with an unfavorable prognosis. We attracted specialists from medical and non-medical specialties for our activities, but we put into their activities our entire philosophy, our understanding that life is a gift from God. And our responsibility is to fill the lives of patients with meaning and content, to make sure that they live without fear or pain, so that every day is filled with some bright events.

After all, from the moment a person is given a serious diagnosis or given an unfavorable prognosis, of course, he experiences difficult period life and difficult emotions. But this does not mean that life has stopped. And it depends on the people who are around whether he will live a full life for the remaining period as an individual, as a person, as part of society, as a member of the Church, or whether he will literally “die alive”, being left alone with these difficult 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, the head of the St. Petersburg Metropolis was Metropolitan Vladimir, who had a very remarkable trait - he trusted the young priests. We came to him with our concerns or our initiatives, and he always supported us. Moreover, he said: “Father, if you need anything, you come straight to me.” Probably, it is precisely with such a story that I am worried, that within the framework existing system healthcare, some part of the population found themselves without the opportunity to receive help 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 was proposed as the basis that this institution could be trusted. It was thanks to the authority of the Church that we received both government support and public attention.

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

The hospice began as an initiative of the Church and later became a non-profit medical institution that initiated the creation of public health institutions. And since 2010 I have been the director government agency healthcare "Children's Hospice", 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 made a request to the St. Petersburg children's hospice as the only institution in the country that has practical experience in the creation of a state institution for palliative care for children, with a request to create such an institution for the Moscow region, and not only an inpatient facility, but also outreach services that would cover all children living in this vast territory. We were given the Przhevalsky estate in Domodedovo for reconstruction, 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 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 and the Health Committee. The 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 the concept of euthanasia. Why am I saying this? In many countries, especially in the West, this is expressed at the legislative level; it is cheaper to accompany a person who is hopelessly ill, roughly speaking, to that world, and this is negotiated at the most high levels authorities. Why is it really important, despite the fact that a person is hopelessly ill, to keep him in some conditions, use painkillers, prolong life and bring some kind of joy into this life? And you, as a priest, of course, also talk about God. After all, it seems to me that it’s difficult for a person, he’s dying...

No, the quality of life of this patient depends on us. If we can help a person live despite an 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 due to persistent pain, due to difficult feelings, loneliness, but after a conversation with a priest, after receiving the sacrament, he agreed to suffer to the end. Apparently, the role of the priest is to be with his patient until the very end, to help him walk this path of shadow.

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

This question is probably very personal for me. I do not share these ministries. I probably wouldn’t be able to be a good leader of an institution if I weren’t a priest. Just as if I had not been the director of a children's hospice, I would not have been able to fully bear the joy of priestly service. In seminary I read the phrase that all life should be liturgy. These are not pretentious words, but once said by my teacher in the first grade of seminary, they somehow sunk deeply. And all my activities are an attempt to make sure that the liturgy does not end in the church. There is good in the world with God. If you have the opportunity to bring this joy of communication with God to other people, you feel your fulfillment as a priest. Sorry for being so sincere.

- Here’s a question: do you have any special education, besides seminary and academy? Medical, perhaps?..

I have no medical education, although I have read quite a few books. I am preparing to defend my PhD thesis on healthcare organization at the Pediatric University. But this is a long process, although a lot of material has been collected. And I, as a priest, will be honored if I can defend myself at a medical school. And we really have something to say, because the creation of a children's palliative service and children's hospices is a merit of the Church. We were able to make the philosophy of human care a natural structure for the provision of medical care, connect our philosophy with one of the healthcare institutions, and introduce this into regulatory documents.

As far as I know, you traveled to the USA and Canada and saw how hospices are set up there. Your hospice, if I’m not mistaken, is the third largest in the world in terms of size. You went there while studying at the seminary. Tell me, it was there that you gained some experience and were inspired by this desire? Or did the desire to help such people arise earlier? Was it spontaneous?

No, it was some 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 healthcare could be different, it could be aimed at answering questions and meeting all the needs of different aspects of a patient's life: their spiritual, emotional and physical needs. But the peculiarity of children's hospice is that the hospices that you mentioned in Great Britain and Canada are non-state hospices. And we managed to naturally integrate the philosophy of the Church into the public health care system, we were able to include it in regulatory documents, we participated in the development of the “Procedure for the provision of palliative care” and other regulatory documents. There is merit in this, of course. At some point, the state really decided that the Church had something to say and that this experience needed to be listened to. And we now see: 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 don’t need to have any special education, you probably need some kind of calling of the heart...

No, professionals should work in a hospice. 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 clergy. Spiritual care is already prescribed in the Federal Law “On the Protection of Citizens’ Health”, in the “Procedure for Providing 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 working in a children's hospice goes through.

- Can I ask you a slightly personal question? How 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 here they are personal experience, so to speak, 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 specialists... Tell me, how many people help you in total?

IN staffing table The state institution "Children's Hospice" alone houses 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’s difficult to count the number of volunteers - there are a lot of them.

- So there are a lot of people who want to help?

But again, even in order to be a volunteer in a children's hospice, you need to undergo special training. And the employees of the institution’s socio-psychological service work with them separately for several months, preparing them before allowing them to work with a group of patients.

That is, a person should be ready not only to gain some professional skills, but also to be psychologically ready?

He must be emotionally ready to meet the lives of other people, he must understand the extent to which his activities, the words he speaks or the manner of his activities have an impact on his interlocutors, on the people who accept this help. Because, for example, a tear on the cheek, or a lump rolling up to 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 it’s interesting to know how things go with them?”

The children's hospice was a non-denominational institution from the very beginning; The church was the bearer of the idea. And each of the children's hospice employees must be ready to talk with their patient, with the family, taking into account the family, national, cultural and religious values ​​of this family. In the children's hospice there are patients who are Muslims, Jews, Buddhists, Christians of other faiths, 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 faith 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 life to the fullest, despite the serious diagnosis, the unfavorable prognosis, if his soul lives, it’s a miracle! Medicine is enough exact science. And if she refers the patient under the supervision of a palliative service, the prognosis is obvious. But if a patient can live longer, with better quality, thanks to the activities of a hospice, this is a miracle. After all, understand that the Lord left us, Christians, on Earth so that we could be for the whole world a word of consolation, a word of joy, a word of hope, perhaps for someone a miracle. And God's miracles happen through our hands, through our professional activities.

- Are they cooking now? medical universities specialists for palliative care?

Preparations have begun. There are courses at St. Petersburg University, an approved course at the Pediatric University, and regular lectures on palliative care are held there. Lectures are regularly given at the Moscow Dental University. This is a natural process that probably takes some time. But the medical community already perceives palliative care as natural in its activities. The terminal stage of the patient’s illness is no longer perceived as a medical error; assistance to the patient 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 full a life as possible.

So, hospice. Still, I would like to know in more detail, what kind of world is this? Is there a place for joy and smiles in a hospice? The ideas about hospice are the most terrible, and I have already said that it is hard for me to imagine how your activities take place. You can truly 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- in a hospice. Because there are no illusions there - both among the employees and among the families who are 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 the epigraph to our book and to all our methodological publications. Each hospice service helps patients live each day to the fullest. One of the nicest compliments I was once told when visiting a children’s hospice was: “Father, people are smiling in your hospice.” Indeed, there are so many interesting things going on at the hospice that people smile when they come there. Not because they are entertained there, but because we accept life as it was given to us by God. Life has a beginning and an end. And when a person accepts this as a certain reality, a certain reality, he learns to thank God for every day of this life.

What do you do for children? I know that there are cases when some stars, even world-famous ones, sent letters and congratulations. Are there any other examples (it would be correct to call this “the fulfillment of children’s wishes”), some little joy for children? What is being done 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. When we came 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 strength to live, strength to fight the disease, some motivation that helps to live, no matter what. Subsequently, this approach was formalized in a separate project, “Dreams Come True,” in which children tell what they really dream about. And the psychologist, talking with the children, assesses how the fulfillment of this dream will help the child in preparing for the next course of chemotherapy or in regaining strength for rehabilitation.

Dreams can be very different, but the fulfillment of this dream brings joy not only to the family, but also to the person who fulfills this dream. That's why both celebrities and celebrities come to the children's hospice. politicians. They come not to show off, but to feel like a real wizard. When you create miracles in this world, you realize that you are not living in vain. You see the grateful eyes of a child, and this gives you the meaning of your own existence.

Children's dreams are different: some want to fly in a helicopter, some want to pet a raccoon, some want to meet a star, some want to fly to Disneyland. And in fact, making dreams come true is not difficult. There are hundreds of them, because there are a lot of children’s hospice patients, but there are also a lot of responses. And all children's dreams come true. I am very glad that this initiative of the St. Petersburg Children’s Hospice has been 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 this?

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, Slavic letters), in the “contacts” section there is an email address that you can write to, and we will respond. We really believe that every person who came to help the children's hospice is God's gift to us, because in this we represent the Church, because together we are one organism - the Body of Christ.

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

Oh, this 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, and sisters. And this experience of traveling together, in which the world and new impressions are revealed to the child, turns out to be very important for all family members. They cherish this moment spent together. In fact, there is nothing difficult about making a child's dream come true. But it is important that someone organizes this miracle.

We all face illness sooner or later, our loved ones and relatives get sick, and it is very difficult for us to worry about it. Could you give advice to people in whose lives trouble has come - an incurable disease: how to relate to it and how to live with it? After all, very often people grumble about God, about life, and then despair...

Sometimes people really believe that illness is a punishment for some sin. This is not true, this is a lie. God came to save the world. God has revealed Himself in this world as the One who in no way believes that illness is a punishment for some sin. He saw the sick person as a sufferer and healed him. Thus, he commanded us to treat the sick in the same way. Disease comes to every person. And when it came, first of all you need to see it, probably, as part of this life. The Lord suffered, and we need to follow this path; this is the path of our Calvary. But on this path God is always there. His presence is felt with particular acuteness and clarity precisely during the period of illness.

What do you recommend? Talk 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 the Lord will always be there along this path.

Question from a TV 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 realizing the proximity of his death?”

I think that admiration for the world, love for another will make you strive for perfection. Fear cannot be the real motive. It is impossible to be a poet or an artist for any other reasons than the desire to love and give this love to others, out of immense admiration for the beauty of the universe. Therefore, love can change a person and can change the world for the better.

- Father Alexander, what activities do you carry out in the hospice specifically as a priest?

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

That is, you come and just talk, and the person reveals what he considers necessary. But you are talking about an adult who is dying. What can children tell?

Children have a very interesting experience of meeting God. And it will be interesting and useful for any priest to talk about what they 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 child’s experience. The experience of a child meeting God very often turns out to be deeper than our experience. If the priest can see behind the words of a child how the Kingdom of Heaven has opened for this person, he will greatly enrich himself. And, probably, his task as a shepherd will be to affirm that this experience is correct, that it really is a meeting of the child with God. Then the child will feel that he has truly met Christ and that it is Christ who is helping him through these difficult times.

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

There are simply citizens of our Fatherland, people who are sick, who find themselves in a difficult life situation. And spiritual care is only one aspect of the hospice’s activities.

- 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 help to the patient can be provided by a nurse or an employee of another service, with whom the parents can build a confidential conversation.

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

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 respond to each of the patient's needs, whatever they may be. And if these needs are only physical, or only emotional, or creative and the person is his own spiritual experience This limits it - and thank God! Our only task is to enrich this experience and, probably, help a person survive this period. After all, you and I healthy people who live and do something in this world, it is very difficult to imagine what kind of powerful experiences occur in the souls of our interlocutors. Therefore, you need to be very careful, very responsible in connection with what you are talking about and what spirit, what information you are carrying.

- As a director, you probably go on rounds...

Certainly. And most often in the institution I am in a white coat or suit. In the cassock only when the patient asked me to fulfill the role of primarily a priest, then when the cassock and cross are part of my pastoral and liturgical ministry.

Question from 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 this 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 help with anything and how can this be done? Thank you very much, thank you."

In St. Petersburg there are about three hundred patients in need of palliative care, they receive it as part of the activities of a state institution. About seventy patients in the Leningrad region receive this help from the Children's Hospice medical institution. In the Moscow region, we assume there are about five hundred patients, due to the extent 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, this helped them begin their activities in other places in our country. A children's hospice was opened in Kazan, Vladimir Vladimirovich Vavilov worked very hard to open an inpatient hospital and a mobile service. In Moscow there are several initiative groups that successfully operate as mobile 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 became acquainted with both the theoretical part of the hospice’s activities and practical activities, came to us for trainings and study visits. We regularly host such training events.

After entry into force Federal Law“On the Protection of Citizens’ Health”, Article 36 of which states that palliative care is one of the types of services provided to the population; after the entry into force of the “Procedure for Providing 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 pressing immediate problem: so that the child and his family members at the stage of terminal development of the disease are not left without medical care. Of course, these services require special training, require the involvement of other specialists, and the organization of a special space. But, thank God, this process has begun, and children's hospices will be created in other regions.

-Are you working on this?

We are working. Last year, Children's Hospice published more than forty different books and teaching aids. This year we are publishing several books, both for medical specialists and psychologists, for parents and children. These books are available on our website children's hospice.rf, where you can download them. These books and teaching aids help not only to convey clinical experience, but also to 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- I can’t even list the number of different projects that are currently being carried out by the Synodal Department for Charity, diocesan departments, and simply each of the parish priests. We probably need to talk more about this and somehow systematize this experience. The trend that is now emerging in society: the state is beginning to delegate to the Church, public organizations, non-profit organizations(and each parish is legally an NPO) solve these problems. This turns out to be more economically feasible, more efficient, because the target audience receives this type of service with high quality and in an individualized manner.

As a seminarian, this is very interesting to me... To be honest, I only know about hospice by hearsay, and only today I became very widely acquainted with it, like many of our TV 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?

St. 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 1st in the first grade of seminary. This is a lesson biblical history, which was conducted by Igor Tsesarevich Mironovich. We entered 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 was interesting to us. Some said that he was interested in history, some in languages, some Holy Bible or worship service.

After listening to each of us, Igor Tsesarevich said: “The Lord brought you here because you are very talented people. And the Church will give you everything you need so that you can be happy. But remember that the Church will always look to you for your offering to God.” It was then that we somehow accepted these words very deeply; they sank into everyone’s hearts. 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 is there 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 old school, should look into the experience of teachers. The Church is the continuity of spiritual experience; This is not only the study of some sciences. It is very important that the priest is literate, but it is also a continuity of the spirit. But we had good teachers, and you need to listen to their lives and imitate them.

- They are.

They are.

What advice would you give to young priests, priests whom the Church delegates to serve in society? What would you tell them first?

When my priestly ordination took place, the service ended, I went up to my rector to thank him for his prayers, for leading me to this day (and he was a subdeacon with Archbishop Luke (Voino-Yasenetsky), and it was Saint Luke who blessed him to do to the Simferopol Seminary and then go to priestly service). He looked me straight and very soulfully into the eyes and asked: “Was it scary?” I said, "Scary." He replied: “If you keep this fear until the end of your life, you will be saved.” It was these same words that Saint Luke said to him, and, probably, these words serve as good instruction for all priests: to preserve your first love, which led you to the seminary, to preserve the fear that you experienced during your ordination.

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

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

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

Thank you! I really enjoyed the conversation.

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

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

Presenter Sergey Platonov
Recorded by Nina Kirsanova

Born in 1967 in the city of Pereyaslav-Khmelnitsky, Kyiv region. Graduated from Kaluga College of Culture. Then the Moscow Institute of Psychology and Pedagogy.

The Nikeya publishing house published. Also, several of my children’s books were published in the “Nastya and Nikita” series of children’s literature, where I work as a literary editor. In 2010 he became a laureate of the IV festival of Orthodox media “Faith and Word”. In 2017 he became a nominee for the Patriarchal Literary Prize.

Father of four children.

About Me:

“I myself don’t really know who I am. I can in no way classify myself as an intelligentsia: I grew up in a working-class neighborhood of a small town, among rabid rabble-rousers.

At the age of fifteen he went to work as a mechanic. Around the same time I became seriously interested in the guitar. He studied at a music school, then at a cultural college. He played in a rock band, wrote music and lyrics. In 1992 he came to the Church, then got married, then received a diploma. And he went to work at a construction site - as a bricklayer's apprentice. For fifteen years I laid bricks at various construction sites, built stoves, fireplaces, and also made monuments in the cemetery.

After graduating from college I'm working psychological practice, I receive clients.

PEOPLE DO NOT FORGIVE THE PRIEST FORMALISM

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

Phrase "God gave - God took"- not at all comforting. You need to think many times before saying 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 by saying this phrase to a person, firstly, you will not help him 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.

When consoling, you need to be very sensitive. Moreover, we 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 nations - then representatives of other nations will restrain themselves. However, restraint of feelings does not mean that a person is not worried about the disaster that has happened!

AND You can express consolation in different ways - for some you can hug, but for others you don’t even need to try: what is characteristic of our culture - somehow stroking or 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 published a book "Questions we don't know the answers to". This is a manual for palliative care specialists. After all, they end up in a hospice different families, and their interlocutors can be a nurse, a driver, or security. In order for all hospice employees to learn to respect cultural, national, religious traditions families and did not make mistakes that would lead to some kind of shock, and such a book was written. Representatives of different confessions and religions answer the questions, because The palliative care service is essentially non-denominational. But it is precisely the ideological issues that patients and their loved ones face most acutely..

- An atheist who picks up this book will find something for himself in it?

Yes, there is a chapter dedicated to people who have no 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 and console if you yourself have 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. Words: "I was there, I know" will not help him survive the grief.

Therefore, probably the greatest thing we can do for a person in such a difficult life situation is to be there for him.

Do not give advice, but be able to listen to the feelings and experiences that are currently happening to him. According to the Gospel, we must bear the sorrow of another. The Lord says:

“Bear one another’s burdens, and so 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 sensitive, or they may become more rude. They can also become cynics.

- What helps you personally to be sensitive, to console, to 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 to which you cannot find answers?

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

A priest is usually expected to know everything: “Father knows, father will answer why the Lord punished me.” Do you experience this kind of attitude?

You know, in life many priests really try to give a simple answer to difficult 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 the priest this formalism. If the priest has the answers to all questions, then this is very bad. Because for the same problem different people there is no single answer - everyone has their own life story. Similar situations for different people have their own history, their own reasons.

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

I I love reading the akathist to the Mother of God. I love to pray, I love to stand in the service- sometimes serve yourself, sometimes just attend 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 itself in St. Petersburg was created as a mission of the Church for this society.

EVERYONE WILL BE GIVEN A DIAGNOSIS THAT WILL SEEK A COLD DOWN THE BACK

- Why did you decide to become a priest?

It's difficult for me to answer this question. It was always an intuitive pull: I always felt good in the temple. Although there was a Soviet period, and my parents held high government and party positions. My leaving for 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 ended up in the temple for the first time. How?

This is what is called - the Lord has brought! You know, in the coming to faith of many modern people key role played by the grandmother who once baptized them and took them to church once. So I 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 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 no longer saw any other path other than the path of serving God. I guess it wasn’t that I wanted to be a priest, but I just wanted to be in church. During my student years I came and worked there as a watchman. I studied at LETI - Leningrad Electrotechnical Institute.

I studied there for a short time and did not graduate. I got there because I finished school well, so I was immediately accepted into the institute without exams, to the Faculty of Biomedical Electronics. I studied there for a year and decided to enter the seminary.

However, the faculty was also associated with medicine! Is it a coincidence that you were one of the first to go to the United States to study chaplaincy courses at a hospital?

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

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

This is an opportunity for pupils and students to acquire pastoral skills in order to care for both staff of medical institutions and patients. Or, for example, prison guards and prisoners, in the army - both officers and soldiers. Those methods and technologies that were proposed as effective were unfamiliar to us at that time. And I asked for the opportunity to go and study.

At that time, relations had already been established between St. Petersburg and Seattle, these relations were established by His Holiness Patriarch Alexy, while still a metropolitan. And within these partnerships Twin Cities, I studied in Seattle. After me, several more seminarians studied, and for each of them this was a very important practice in their pastoral life.

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

Well, in general in the West, people who are already established, middle-aged, and already understand that they are going precisely to serve other people, enter the seminary. What was the practice like? This can probably 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 activities simply will not be effective.

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

Unfortunately, I very often see my colleagues making serious mistakes in their pastoral practice, mistakes that can have a very bad impact on patients. Starting from banal negligence, haste, and ending with phrases that, if they were said in another setting, may mean nothing, but said in a hospital setting, they seriously hurt mentally.

- What kind of phrases are these, for example?

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

Let's say the patient tells you: “Father, I’m afraid!” Any of our priests will say to this: "Don't be afraid! The Lord is with you"- and he will say it sincerely! But, probably, the mistake is that at that very moment the patient expressed trust 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 priest’s phrase is correct "Do not be afraid, the Lord is with you" for such a patient it would mean that the priest simply brushed him off. Frankly, this is unacceptable in a hospital, unacceptable in a conversation with patients who are going through difficult treatment.

I never believed the answers "Everything is fine!" in the hospital: when someone comes and asks: "How are you?", and they answer him: "Everything is fine!"

Well, everything is never good in the hospital! Willingly or unwillingly, Finding yourself 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 idea?

I am also afraid of getting sick, all people are afraid of getting sick. Anyone who says that he is not afraid is most likely not being entirely honest. Illness 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 other than the path of bearing the cross. In my opinion, St. John Chrysostom says that the very cross that is implied in the words "Take up your cross and follow me"- this is illness and sorrow.

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

HOSPICE PATIENTS ARE NOT A RESOURCE FOR SOLVING PROBLEMS

They usually say: “That’s why you’re depressed! Others have it worse! Go to a hospice, take care of the sick, and you’ll immediately stop being sad.” Do you agree, or not every person can be sent as a volunteer to a hospice?

Firstly, the children's hospice in St. Petersburg has a completely different concept: this is not a place where they die, this is a place where they live despite illness. This good, happy place- there are so many events there that fill people’s lives with emotions, content, and encounters that do not happen outside the hospice walls. This is the concept that we initially incorporated into our activities: help to live despite illness.

To help means, first of all, to do so, so that it doesn’t hurt, it’s not scary. And 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 personnel are specially trained to implement it.

Secondly, with regard to people experiencing depression and hoping to dispel it in a hospice... There is this aspect: there is no need to use hospice patients or a family in such a difficult situation. life situation, as a resource for overcoming the mental problems of other people. Hospice patients cannot serve as therapists for those with Bad mood or who does not have a good personal life.

- How do you recruit volunteers and employees?

At the children's hospice, we first look at the reasons that brought people to work here. Those who seek a solution 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 graduates from seminary this year. And since he is a representative of a different generation - young, creative, energetic, with a different vision - he, for his part, pours a lot new energy, his vision into the established process of the fund.

Now many people complain about the new consumer generation, they don’t want anything... And when raising your children, did you instill in them the habit of not passing by someone else’s misfortune? And how can this even be done?

I think, You can and should talk to children. About everything! Children appreciate this, and conversations with parents are imprinted in their memory forever, although they may not immediately respond to what is in their mind. this moment they tell.

I have always loved and love talking with children about all the events that happen around them. This has always been part of our relationship. Moreover It's not what I say that's important, it's that I force them to express their own position.. You need to talk to children, talking to them is very interesting! And if children is the kingdom of God, That adults need to 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 similar 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 this?

These, of course, are not theological terms, these are ordinary words, but there are living feelings behind them. They say how they imagine 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 to communicate with God. Such things…

In fact, this is not a structured pastoral conversation, it is just a heart-to-heart conversation. And questions of spiritual life are succinctly integrated into conversations about something else. A child is most often 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 be casually touched upon. Or the child may somehow hint that he wants to talk about this topic. The priest’s task is to hear, among everything else, something very important that the child wants to talk to him about, and at that moment to express support and willingness to listen.

- Do you particularly remember any conversation with a child? Can you tell me?

I'm currently working on a book "50 mistakes of a priest in a hospital", so, unfortunately, stories come to 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 should 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 invented by children during a pastoral conversation. That's why it turned out so bright, that's why it became a home.

- Did the children come up with a 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 in spasm. They feel very uncomfortable surrounded by guys who do not have such pathologies. For the same reason, they have never been to water parks, they have not had the opportunity to simply splash around in fountains, on water attractions where there is water movement, hydromassage, waves, and so on. Here is a child with preserved consciousness, with clarity of thought, with all the fullness of experiences - does not have the opportunity to rejoice in the water in the same way as other children... Therefore, we just wanted to make childhood real for them. I immediately incorporated the pool into the hospice concept. 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 swimming pool with a jacuzzi?

Indeed, no one understood, because from the point of view of regulatory documents, people should die in a hospice. Why is there a pool there? I speak:

"No. They should 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 swimming pool?? I had to explain that in a hospice you need to help you live, help improve the functionality of the body, well-being, give joy, new impressions, new experiences - this is very important for organizing a quality life for patients, for developing self-esteem for both the child and his family members. This is an important element! But they gave us some other arguments: 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, then the lighting will not allow it to work. We spoke:

- Let's put up lamps and spotlights!

- No, there are many other violations here.

In general, there were a lot of interviews and disputes. In the end I say:

- Listen, is it possible to set up a temple in the hospice?

- Yes, a temple is possible. Temple - necessary!

- Then I need a baptismal font for the temple. With hydromassage.

So, according to the explication of the room, this pool looks like a vat for storing holy water with hydromassage. I've told this story many times already. It just shows that you shouldn't be afraid to go towards your goal. If you have something in mind and you understand that it is right, then The Lord will give you the necessary inspiration, and at the right moment you will find a way to achieve this goal.

THE LORD ANSWERS EVERYONE HIMSELF, AND WE ARE CALLED TO BE NEAR

- Father Alexander, who are you, rather, for the children who are being treated at the hospice - a friend, a priest, a director?

In every way! If the children need a director, I can be the director - have a stern conversation with one of the staff. I can be a friend, I can be a priest - I have to act in different roles: to be in a suit, or a white robe, or a cassock. It’s probably good when a 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 talk about this?

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

And the child most often perceives this as part of his life: this is how I live, we live with this; yes, it’s a pity, yes, it’s sad, but that’s how it happened.

An adult has more responsibility: for business, for family. Therefore, when summing up his life, he must complete his affairs in every area of ​​his activity. The child does not have this.

Childhood illness and death are probably the most difficult and terrible things in our world. When faced with this, don’t you ever try to find cause-and-effect relationships, somehow explain it to yourself, try to see God’s providence in this? Otherwise, it must be 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 everyone! But to construct 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 hospice patient died, you gave some of the employees time off so they could recover. This is true?

Everyone is worried. The strength of the experience is different for everyone, depending on their closeness to the deceased patient or his family. The loss of a person, even if he has been seriously ill for a long time, causes pain because it is a separation, it is the end of an existing relationship. Therefore, there is a tradition in the hospice: after the death of a child, a candle is lit, it burns for 24 hours, this gives everyone the opportunity to stop their running a little, sit, think, give time to grieve for each of the departed patients, and remember him. This is how everyone becomes aware of what happened, we pay tribute to the person’s memory and grief. Don't know…

Probably, each employee had his own first patient... that’s why 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 exactly this period?

This is stated in the documents regulating our responsibilities towards patients; this is a necessary part. But in life it happens differently.

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 experience and comprehend the loss that has occurred. But if relatives want to comprehend what happened themselves, 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 calling or writing on the child’s memorial day, on his birthday - as if we are saying that we also remember him, that this day is important to us . And, more often than not, even those who move away in the initial period come back after some time. Every person goes through the stages of stress differently and expresses their pain differently., and what is characteristic of some is not characteristic of others. People are different: some want to close, and others want to talk. Therefore, we need to express sympathy in different ways..

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

- Can't give advice. Because you don't know what's 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 - without giving advice, without trying to console, just being there. Well, what words of consolation can you find for a mother who has lost her child? There are no such words! No words will help change everything, turn back time. But we always value those people who were our friends during a difficult period, who could listen to us without making critical comments, without giving advice, who walked this path with him day after day, who were attentive, patient - we value such friends . Those who were unobtrusively, but always there.

Through different stages have to go through and V different periods our help can also be different: sometimes you can just sit next to him, sometimes - some domestic issues decide, go to the store, for example. You can just live there, nearby.

You know, sometimes a person who has lost a loved one simply does not have the strength to get out of bed. Because life is losing meaning for him, he asks himself “Why everything else?”, and this question simply nails him to the bed.

He doesn't have an answer to the question "why get out of bed". You can simply offer to drink tea - and this turns out to be important.

You can answer a whole book here! By the way, we have a book on communication, where we look at various cases and examples. It can be found on the children's hospice website, like all other books: there are about 40-50 books and manuals that we have published.

PROBLEMS OF SERIOUSLY ILL PERSONS ARE NOT SOLVED BY LAWS ONLY

Father Alexander, you recently joined the Public Chamber. How can this help palliative medicine and the activities of your and other hospices?

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

Second important aspect: for that, so that palliative care is available in all regions and is 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 the experience of St. Petersburg in creating palliative and hospice services. It will primarily be aimed at changing attitudes in society towards people with disabilities, towards people in difficult life situations. Still, I really want to morally change society - this is my ministry as a priest: to save the world through my activities. This could be a church service, or it could be a public service. The Public Chamber provides an opportunity to talk about eternal values the language in which people are ready to hear us.

You mentioned society’s attitude towards people with disabilities, towards people caught in difficult situation. What's wrong with this? And why?

Firstly, there is a certain stigma: people are afraid of those who have fallen ill with some kind of disease that threatens their life. There is a feeling of danger, it is genetically determined. 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 the patients themselves feel this very acutely...

Or, for example, people don’t know how to behave when there is a person nearby wheelchair. 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 be able to occupy worthy place in society, live and work like everyone else, have the opportunity to realize their talents. This is called the term inclusion. But the point is that These issues cannot be resolved through legislation alone.! The law can only provide an opportunity for change, and the changes themselves occur thanks to the activities of priests, journalists, public people - artists, poets and so on. Because we change our souls, and the law gives us the opportunity to talk about these topics, society - to listen, change, and people with disabilities - the opportunity to have an accessible environment.

- Has anything changed in recent years?

Yes! I can say that the first ramp in the theater in St. Petersburg was installed because 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 meeting 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 this was the first ramp that was made in the theater. The second one also appeared at the request Children's hospice.

These changes that are taking place in our society are being 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 most valuable to you? Or is the reward something else for you?

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

Interviewed Valeria Mikhailova