Anna Sonkina is a pediatrician and a specialist of the palliative help service. Now she works as a consultant at the hospice service of St. Martha and Mary Convent of Mercy in Moscow. Anna is 28, she is married and is a mother of two daughters. While studying at the Medical Institute she worked as a nurse at The First Hospice, then as a pediatrician in the Unit of palliative help of the Research and Practical Centre, of medical help for children and in the Fund of Development of palliative help to children.

Every day Anna talks to severely and terminally ill people and perceives it not as some high mission but as a job that should be done professionally and the best way possible.

Vera Millionschikova and the hospice philosophy

– I remember the moment when I first thought of this kind of work. It happened at the lecture by Vera Vasilievna Millionschikova. I was an Institute student and we had classes at the Bioethics department. It seemed interesting to me. All this cynical atmosphere of the Institute, the lectures of Civil Philosophy that we had during our first year and here – we talk about Ethics! I thought: Well, this is what I like.

Vera Millionschikova

I often went to the Bioethics dept. together with my friend and one evening after classes Vera Vasilievna gave us a lecture that was usually delivered to the fourth and fifth year students (and it was our second year). And there I understood that it was something I wanted to do in my life. I left the classroom with an intention to go working to the hospice after graduating.

Without doubt, Vera Vasilievna was the main person who influenced my choice. Although I realize that if she were alive, we would have different points of view on many issues and we wouldn’t work together but I always come to her hospice as to the place that is very dear to me.

In The First Hospice I was struck with the devotion that Vera Vasilievna showed towards her patients. She did so much for them! She was energetic, lively and she put efforts even to the patients that seemed to be hopeless. And it turned out that a lot could be done for them. And she did it herself and demanded the same from her personnel, showing that it brought real results.

I remember one doctor’s round. Vera Vasilievna didn’t just ask questions on medical matters but she always showed interest in the patients themselves and asked general kind of questions. So one woman-patient said: “Everything is all right, I just want to smoke so much!” Vera Vasilievna moved a chair closer to her bed and answered: “Well, let’s smoke then! Why you are not smoking?”

The woman said: “They don’t let me”. Vera Vasilievna’s response was: “It cannot be! Smoke!” And she sat by her side, took out a cigarette for herself too and they smoked together. And the people who came with her to the round stood by, waited… She showed us that it was important to respect the other person’s wishes, to treat him or her with care.

And the second episode that I remember very well: I worked as a nurse and once a severely ill patient got a bedsore. I discovered it in the beginning of my shift and I couldn’t tell for sure if it appeared on my shift, before that or in between shifts. And so the next morning I met Vera Vasilievna at the corridor. Her eyes and posture showed her indignation and she said she would deprive me of the bonus payment because of that case.

That was evidence to the idea that people that are brought to the hospice have the right to receive the quality care. And every employee should abide to it. This is our attitude to the patients that strucks them most when they get to The First Hospice. As a rule these people have stayed at a variety of places like this before and they don’t believe it can be this good. I think I was influenced by Vera Vasilievna on this matter. I learned from her (hopefully) to respect the human life and people. It was great to become a part of the hospice mechanism.

Is the subject death forbidden for discussion?

– In Russia people often think that “hospice” is something frightening. Is it different abroad?

– To tell you the truth, this is a global problem. However the countries with serious attitude to the palliative help, invest more efforts and money into it. They try to get the medical personnel work well, to follow the hospice philosophy. It is taught that it is the fight for life, not the right to death. It is the struggle to provide decent living conditions in the person’s last days of life.

Perhaps people speak more openly about death in the better developed countries. In America I could see social ads that were a call to elderly people to use their right and to make decisions concerning their treatment and life.

They give special forms to fill in where one can indicate some key moments, like “if I become severely ill I ask not to perform life resuscitation procedures to me”, or one can appoint a family member to be a full person’s representative in case of emergency. In this way people feel in charge of their life and can do some planning of their life and death matters. These advertisements were very unusual to us and even frightening. Maybe that was too extreme.

Of course in any country the issue of death is a complicated one, people try to forget about it whenever they can. But in our country there is an atmosphere of total silence around it.

Our medical care is the best example. In Russia it always claims that it fights for life. Even when a patient is chronically incurable it is not common to talk about it with the patient.

I often observe that a doctor sends a patient to take a serious medical examination and at the same time doesn’t reveal what kind of disease he suspects the patient has. Doctors often feel uneasy to tell patient his true diagnosis. It’s obvious that our health care is not ready to talk about death. And it is not designed to help those who cannot be cured. The health care in the Western world made a huge leap forward in this matter in comparison to us. And not only in the issues concerning the palliative help. There all medical personnel is taught to talk to the patients on such complicated issues.

I’ve got a feeling that the Western health care acknowledges that the doctors are not all-powerful and the patients die of diseases in spite of all their efforts. And our doctors behave as if death doesn’t exist. And even to the extent that once a head of one Moscow medical institution said “It cannot be! Children don’t die. Provide treatment!” And this rejection of death in the health care system of axes brings a lot of harm to the patients.

Health Care: dreams and reality

In the sphere of our medical care the patient is not the number one priority, to put it mildly.

All attention goes to adhering to certain standards. One can feel it in the very way the medical help is organized and how difficult it is to get it at home, out of the hospital building.

While abroad it is possible for the hospice patient to bring a pet dog with him or her, in our country it is often that the parents are not allowed into the Intensive Care unit to see their dying child. Today the quality of health care in Russia is evaluated from the point of view of those who provide it. To evaluate it from the patient’s point of view – this task is not even being set.

Anna Sonkina. Photo by Anna Galperina

– What do you dream of?

– I dream of participating in the development of the palliative care pattern. I would like to collaborate with multi-field hospitals and deal with the early palliative care implementation that can be done parallel to the main treatment of all kinds of diseases. Little by little I come closer to this dream of mine.

Not long ago I was invited to a Moscow hospital as a hospice representative of St. Martha and Mary Convent. The doctors asked for help with the test results delivery. "We don't know how to let the parents know that their child will die from a certain disease. We are sure we do this in a wrong way". Glory be to God they see this as a problem. This is a big step forward.

– What do you dream of for your patients?

– About the medical service that takes responsibility for providing the best service possible in the fight for life and also shows respect to the death of a patient. It sounds as if it is easy, but in fact this is really difficult. It would be great if every child received the best treatment. And in case the disease is incurable - then the best service and the possibility to prolong life as much as possible, maintaining its quality.

And if despite all efforts a child must die, this should happen in a calm and painless way. I wish the health care would finally agree that it is responsible not for the life and good health only, but also for a good death. Often I am accused of having slogans in my speech. But if we talk about dreams in a more specific way, an endless list of the things to be done will emerge.

I wish the doctors could communicate with the patients, I wish the hospitals were not far from home and the specialized clinic was not the only one in the whole Russia, making people travel many kilometers to get there. I like the term "target". If the professionals working in the sphere of medicine have desire to make it more comfortable for people and to work at their best, and if they set it as a target, there will be a progress.

It is easier for the honest ones

– Tell about those who manage to keep courage themselves and also to support their dear ones, what kind of people are they? How to help a person whose family member has a severe disease?

– With such people one would better listen rather than speak. The most important thing is to show a person who has such a tragedy in his or her family that you are ready to listen. And to be sincere. As if you try to conceal the true feelings you have for the situation, the person will feel it anyway.

If you give some fake encouragement it will irritate not less than an excessive sympathy. People in difficult life circumstances turn to be very sensitive to all kind of fakery. It hurts them. And we are afraid of somebody else's misfortunes. That's why when we meet a person in trouble we begin to behave in an unnatural way.

I cannot say that people who believe in God cope with a disease better than non-believers.

It is easier for those people who are not afraid of their own feelings, reactions, emotions and thoughts concerning their own disease or the one of their closest person. And there is always a chance that their outcry will be heard and responded.

If a mother of a terminally ill child can turn to somebody and say "I'm tired", "Why did it happen to me?", "I wish it ends!" and there will be a person by her side who will not be horrified with these words and who will not answer "What are you saying? How can you say this?" but will just listen to her, it will be really helpful for her.

I think that the people who are honest to themselves are also able to accept help and to thank for it. These features are very close to each other - not to be afraid of own "wrong" reactions, accept help, be grateful. In these situations sincerity helps greatly to have a positive outcome.

It's amazing to meet the parents who can talk to their terminally ill child about what is waiting for him and do this in an open and honest way without deceiving. I'm glad to know there are people who make some "unpopular" decisions that are contrary to the conventional logics, that is: to give birth to a child in spite of pathology showed by ultrasonography and to leave a handicapped child in the family, not in a specialized state institution.

I admire the mother who takes her child away from a decent Moscow hospice or a palliative care unit into a provincial town while there might be little or no necessary medical care available, and this is because she knows the child is going to die and she wants him/her to die in the atmosphere of home, not in a hospital ward.

– There are many foreign feature movies on the topic of disease and hospice stay. Could you recommend any?

– I remember the movie "Wit" with Emma Thompson, it was a part of a Holland palliative care education program. It's about the life of an English literature teacher.

Condemnation and false hopes

– What shouldn't be told to the parents of sick kids?

– One shouldn't make conclusions about the causes and consequences. There are people, I don't want to call their names, but they are very authoritative, who come to the parents and say that the present-day situation is given to them as a lesson or even as a punishment. Perhaps they think that it will support the parents. They can say "You should understand that children suffer from diseases because of their parents' sins".

Anna Sonkina. Photo by Anna Galperina

There is always a feeling of guilt in the suffering that parents must bear. This is what we have to deal with professionally. And people who say this should understand that this way they throw a stone at the person. It's hard for me to understand why they would do this. This is sort of spiritual deafness.

The other thing that is not less terrible is false hopes. The church-goers are the category of people who are more inclined to give false hopes to the parents of terminally ill children. They say "Take the child to the holy spring, take him or her to the relics of a saint and he will be healed". Usually the people who are not religious cannot give an adequate response to this.

Of course there are people who are fanatics in their own way... They would say "Take in vodka with oil and the disease will go away". At least we are skeptical at what concerns non-traditional medicine. But I believe that the harm from the false hopes is bigger than the harm from all these "people’s recipes". It's only worse when people totally reject the treatment.

Unfortunately faith in God cannot compensate for the lack of spiritual sensitivity and professionalism. The faith itself doesn't make us more sincere and doesn't give us the ability to listen to the others. Perhaps faith gives us more motivation to learn doing this but by the sick-bed believers usually do it the wrong way.

I wish the people realized what they do when they give a false hope, why they do this, and secondly, what consequences it can result in. People do this because they feel themselves helpless. If you think that when you come to an ill person you should raise his hope it means you are not ready to meet this person. In the situation when the disease is incurable this is not required.

False hopes bring deception. And this is often harmful to the patient. Instead of giving farewell to the loved ones, finishing all the chores and accepting the state of things, a person spends precious time and efforts to make the trips to the holy places. And he hopes it will help him to live longer. But this is unfair.

To plan the worst

I like the phrase that Americans use to describe the palliative care for children - "Hope for the best, but plan the worst". There is no controversy in this saying. It is Ok to prepare for the worst, for the death and a painful condition of a child. Of course a miracle can happen despite our plans. However to make plans relying on a miracle is not sensible.

– There are parents who lose temper when they are offered "to be ready for the worst scenario"

– I haven't met such parents in the sphere of palliative care. One should know how to talk to parents. Information support is a substantial part of our job. Often these families are in a vacuum and hardly realize what they can help their children with. The task of helping a family consists of many steps and it is important to make the parents ready to receive help and for this reason it is necessary that they accept it that their child is terminally ill.

Eternal issues, difficult answers

– How do you cope with professional burnout?

– I always feel uneasy to answer this question. Burnout has never been a problem to me. Several times I worked together with people who did suffer, had burnout and were distressed for the patients. And I even felt strange as it didn't affect me that much. Maybe I have a high sensitivity threshold and not so much empathy. I don't know what the reason is. I just managed to set the limits in some way.

When I am with a patient or with the patient's relatives, I plunge into the situation, sometimes I even feel despair together with them. But upon leaving the patient I always manage to come back to my life. Sometimes in the hospice several patients would die on my duty, I saw the children dying but I have no experience of some pathological suffering, and I am not sure I can give advice to the others. I think that in every job it is important to correspond to the working place you belong to, and as for me, I like my job very much and I don't want to work anywhere else.

– "How does God let children die?" - many believers have come across this question at least once. How would you answer it?

– I haven't been asked about it before. I feel it is necessary to separate personal faith from professional duties. I come to a patient as a doctor and in the modern world it is a secular profession.

– And how would you answer this question to yourself?

– “God hasn’t promised days without pain, laughter without tears, and the sun without rain. But He promised to give strength for every day, to soothe those who weep and to lighten the path to those who take it…” This popular saying by an unknown author is just at the front page of the hospice website. Generally speaking in the Church nobody says that in our world there should be justice that we, human beings, could comprehend.

– So you perceive your job not as a mission but as a range of practical tasks?

– Exactly. By the way, Vera Vasilievna Millionschikova had the same point of view. She always ignored when somebody would say “You are a saint person”. Because that was not true. I just love this job and realize what I should do at every stage of it. The professional education added by skills and competence that help to fulfill the tasks – this is it.

Anna Sonkina

A chance to manifest love

– Are you afraid of death?

– Of course. It seems to me that one should be honest answering this question. I cannot say I think a lot about my death. I am rather young, I am only 28 and I don’t think about death as of something of immediate interest to me. However as I deal with the subject, a thought about how I imagine my death came to my mind. I consider this to be a very useful exercise.

Anna Georgievna Gorchakova, Director of the Byelorussian children’s hospice likes to get the staff and volunteers together and gives them this exercise: to write a will. Or a scenario of their own death - How do you see your own death?

I know that many people would like the death to be quick and unnoticeable. Now I think to myself that I would like my death to be not fast (at least this is my present-day point of view). I would like to be conscious to the last and to understand what is going on, to have a chance to finish some tasks, to repent, to pray, to say farewell.

– But the desire of quick death is connected not only with the fear of sufferings but also with the desire of not being a burden to the relatives.

– You know, many of our patients have this complex. A person suffering from a disease feels guilty before the family members for taking their time and burdening them with troubles. But on the contrary, this is a chance to spend time with a close person, to take care of him, to talk to him before he passes away – this is a big gift for the relatives. This is a good chance to show love…

Interview by Alisa Orlova, photo by Anna Galperina