“I’m afraid even more than you” – Ukrainian Doctors on Working Next to Death
10 May, 2020
Helping patients who cannot recover is very psychologically difficult for a doctor. Doctors often have to face their own helplessness in preventing death and to tell the worst news to the loved ones of the deceased. Photo: Anastasia Vlasova / hromadske

They chose their profession to save lives. But they face death more often than others. During the coronavirus pandemic, doctors have been in the spotlight around the globe. But perhaps we have begun to forget that there are more than just infectious disease specialists.

While physicians, ophthalmologists, and dentists can count on almost 100% success in treatment, many other medical specialties often face their own helplessness in preventing death.

But why did they choose this path and why do they persevere? How do they overcome the stress of inevitable medical failures and the need to tell patients bad news? We spoke with four Ukrainian doctors of different specialties to find out how they see their work, what motivates them in the most difficult moments, and how they cope psychologically.

They told us about the first non-family bone marrow transplantation in Ukraine, why fetal ultrasound specialists feel like they’re at war, and about palliative care as the art of living.

Hematology and Transplantation: "You know that there is nothing behind you"

Oleksandr Lysytsia is a hematologist. Since the end of 2018, he has been the head of the bone marrow transplant ward at the Ohmatdyt clinic.

Bone marrow transplantation – especially pediatric – is a very difficult specialization. It is needed to treat some some cancers, as well as in blood diseases and immunodeficiencies.

"The best transplantation is the transplantation that wasn’t done," jokes Lysytsia, because this type of therapy is usually the last chance to save a life.

On April 1, the first non-family bone marrow transplantation in Ukraine was performed in Lysytsia‘s ward. This is a huge breakthrough for the country, because for decades patients had to travel abroad and pay huge sums for that treatment.

Lysytsia and his colleagues actually beat the odds by proposing changes to a law adopted in 2019, signing contracts and doing charity fundraising. Finally, after a deal with Germany, they brought donor blood to Ukraine.Врач-гематолог Александр Лисица заведует отделением трансплантации костного мозга в Охматдете, где сделали первую в Украине несемейную трансплантацию костного мозга, Киев, 27 марта 2020 года

Hematologist Oleksandr Lysytsia heads the bone marrow transplant ward in Okhmatdyt, where the first non-family bone marrow transplant in Ukraine was performed, Kyiv, Ukraine, March 27, 2020. Photo: Anastasia Vlasova / hromadske

The first non-family transplantation was performed on one-year-old Nazar from a family of IDPs from Makiyivka in east Ukraine. The child has a congenital combined immunodeficiency. Basically, Nazar has no immune system and the transplantation was his only chance to live.

Due to a primary immunodeficiency disease, his brother died during the first month of his life because of a regular BCG vaccination for tuberculosis. Nazar survived because he was not vaccinated in the maternity hospital. The other two children in the family are girls, and they are, fortunately, healthy.

The whole ward at Ohmatdyt has been celebrating the victory of a successful transplantation. Doctors noted that the engraftment of the bone marrow was successful, and the child has new healthy cells. The boy has been gaining weight and now has a chance to recover.

Such transplantations would help save up to a hundred lives a year. But a hematologist deals with the fragile line between life and death on a daily basis, usually facing diseases where the therapy’s success rate is about 70%.

Bone marrow transplantation is not like a heart, liver or kidney transplantation. It is more like a blood transfusion. Stem cells are transplanted from bone marrow or peripheral blood: the patient is transfused for several hours, then he goes through a difficult period of aplasia – having no immune system and no blood cells of their own. Later the engraftment starts, and after that – the period of immune tolerance. After about 100 days, doctors stop immunosuppression, and monitor the patient again. Finally, if the condition is satisfactory and there are no serious complications, the patient is transferred to an outpatient setting.

На месте пациентов отделения трансплантации костного мозга может оказаться любой ребенок, не только с редкими заболеваниями, Киев, 27 марта 2020 года

Any child, not only with rare diseases, may need bone marrow transplantation, Kyiv, Ukraine, March 27, 2020. Photo: Anastasia Vlasova / hromadske

It may seem that this is a therapy for very rare diseases, but this is not true. Any child may need bone marrow transplantation.

"Parents often say, 'How come, a 5-year-old child, everything was fine, he was chasing a ball, learning English, and suddenly [he has] cancer. How come?”. One reason for this is that mutation can occur overnight, and cancer cells will begin to divide immediately. Or because of defects in the immune system, which would not track and does not destroy the cancer cells that any person has," explained Lysytsia.

In the year and a half since Lysytsia became head of the ward, much has changed: he has a new team of doctors and medical staff. This year alone, the ward managed to raise more than 5 million hryvnias ($186,000) for consumables, medicines and the like. Large private organizations, the Tabletochki charity, and sometimes politicians help out.

But the main changes have been in the attitude towards patients. In recent years, the ward has been fully opened to volunteers.

"We have a team of clowns who work with children. The library has opened, there is already a cinema. My first demarche was a boat trip. I called the volunteers and said, “The weather is nice, let's take the children with their parents on a boat." They rented a boat on the Dnipro river, and children and their parents were able to have a boat ride. Some of my old-school colleagues thought that I’m crazy. But we get not only positive emotions, but also the strength to fight. You need to recharge, otherwise it is impossible,” said Lysytsia.

Годовалый Назар, которому сделали первую несемейную трансплантацию, родился с комбинированным иммунодефицитом, трансплантация была его единственным шансом на жизнь, Киев, 27 марта 2020 года

Kyiv, Ukraine, March 27, 2020. Photo: Anastasia Vlasova / hromadske

They have no non-critical patients in the ward. And with the seriously ill, any treatment is a team struggle, in which both doctors and parents are involved.

"When I talk to parents, even before the hospitalization, I tell them that we have to go shoulder to shoulder. For example, if there is a pathology with a 70% chance of a positive result. On behalf of my medical team I can say that we will do our best to achieve this 70%. But if we do not work together, the percentage will drop," says Lysytsia.

The ward currently has 17 patients, aged between one and 17. Twelve children are in the hospital, and the rest in outpatient care. Some receive immunotherapy or even chemotherapy on an outpatient basis.

This is a European approach, explains Lysytsia. There are philanthropists who rent apartments for patients' families near the hospital so the patients do not stay in the hospital for a month or two – psychologically, it is easier for both parents and children.

But the doctors are not fighting for recovery – they are fighting for remission.

“I never tell the parents, ‘We will save you’, or ‘You have recovered.’ Because if a relapse occurs, and sometimes it does, they will not be ready for it. No one knows how many years remission will last. It can last 100 years, or maybe three. That is why we are fighting for remission. And it is necessary to give this information to parents as well,” Lysytsia said.

«Мы не боремся за выздоровление, мы боремся за ремиссию. И никто не знает, сколько лет продлится ремиссия — она может и 100 лет продолжаться, а может и три года», Киев, 27 марта 2020 года

"I never tell the parents, ‘We will save you’, or ‘You have recovered’," said Lysytsia, Kyiv, Ukraine, March 27, 2020. Photo: Anastasia Vlasova / hromadske

Psychologists are involved in the treatment as well. According to Lysytsia, a team of doctors discuss the patient's condition with the psychologist every week. "Children study with teachers, and if they need sterile conditions, they study with a tablet. Children are quite smart – they understand who to pressure: usually parents. A kid says, ‘I don't want to study.’ It is clear that when a child's condition is serious, no one runs after him with a textbook,” explained Lysytsia.

"I have an example of a patient: we had a month of talking about moving into an apartment. Then for a month I prepared him and his parents to go home. After that, they were coming once a week, now once a month. And the last conversation we had was about almost two years after the transplantation. I told him, “You could have already finished the second year in Kyiv, the Polytechnic Institute is across the road. We have almost discharged you, you come once a month, what will you do next?” He says, "I don't know." “No, it won't work,” I reply. “Why did we work here? You have been struggling for so long to not know what to do now??”

Children’s parents often tell me, "We are afraid." I reply, “Do you think I'm not afraid? Even more than you.”

Hematologists and pediatric oncologists are people who consciously enter the profession where there is about a 30% failure rate. While dentists or pediatricians have about 100% successful treatment, a hematologist or an oncologist understands that out of ten patients he will not be able to save two or three.

"Children’s parents often tell me, "We are afraid." I reply, “Do you think I'm not afraid? Even more than you.” Unlike parents, I know what will happen. When a doctor loses compassion and fear, he must quit and go to work in the Ministry of Health, or somewhere else. Because you no longer feel, you lose intuition, you are working only by standards. These 30% of failures motivate [us]. Because you know that you can save people. You know that there is nothing behind you."

Гематологи и детские онкологи сознательно идут в профессию, где около 30% неудач: из 10 пациентов они не смогут спасти двух или трех, которые умрут несмотря на все усилия врача, Киев, 27 марта 2020

Kyiv, Ukraine, March 27, 2020. Photo: Anastasia Vlasova / hromadske

According to Lysytsia, each case and each therapy is unique in a way. On the one hand, there are treatment protocols, including international ones. But protocol is not a dogma, it is a general standard of care. Often there are situations where protocol treatment gives 60% chances of survival.

"But when the struggle is for an additional 1-2%, or 3-5%, this is an author's work," said Lysytsia. He considers it necessary to fight for these additional chances.

"This is a philosophical issue and it should be decided together with parents. I had an 18-year-old patient who had a very difficult year: he had operations, parts of his lungs were removed, there was resuscitation, coma. He smiled death in the face several times and was coming back to us. But there was an issue of one more transplantation. We took a risk, but he couldn't stand it. The resources of the kidneys and liver were exhausted. And he suffered greatly in the last days. I'm not sure it (the last transplantation – ed.) was completely justified. But if I had not tried, then I would have asked myself: "Why didn't I try?" We tried, all together: the team, the parents and him. But he wasn’t strong enough."

When a doctor loses compassion and fear, he must quit and go to work in the Ministry of Health, or somewhere else.

Despite all the efforts, doctors often have to report the worst news.

"I do not talk to children about death. I avoid this wording. I say, for example, ‘We have a negative result’ or ‘The result is not what we expected’.” They understand perfectly,” told Lysytsia

“An individual approach is important. One wants to hear immediately without a prelude, the other wants a prelude. You spend a lot of time with them, you see them every day, you know what they like to eat, what cartoons they watch, what books they read, when they started walking, who ever fell off the swing... You know how to find the correct approach.”

«Когда врач теряет сочувствие и страх, то ему надо заканчивать. Надо идти работать в Минздрав, или еще куда-то. Ты уже не чувствуешь», Киев, 27 марта 2020

A doctor knows how to find a correct approach to each person, says Oleksandr Lysytsia, Kyiv, Ukraine, March 27, 2020. Photo: Anastasia Vlasova / hromadske

An individual approach to parents is needed as well.

"In some cases you should tell the father first. He will prepare the mother, and the next day you will talk to them together. Because if you tell everyone at once, the mother can collapse, and then the father will also feel bad. Children feel when the news is bad. I tell parents, “If you want to cry, go ahead. There is a place to cry, it's okay. I even cry myself, everything is fine. But you shouldn’t cry next to the child. You have to be strong when you are near.”

This is the path we have taken. Indeed, we give more than we receive.

Lysytsia noted that his family is his main source of support. His wife is also partially involved in oncology and knows the situation well. The couple has two children, four months and three years old.

"It's difficult with children, especially with little kids. Today I had to wake up at 4:30 a.m. I come home from work at 8 p.m., and then immediately go for a walk. Then we put the children to bed. But we spend the weekend together. Every Sunday we cook, in the summer we go to the lake. Fill in the gap that formed during the working week. But I'm on the phone 24/7, I never turn it off."

"This is the path we have taken. Indeed, we give more than we receive. Maybe it will be taken into account, and someday I will not have 160 degrees in the cauldron [in hell], but a little less," said Lysytsia, smiling.

«Не надо плакать при ребенке, при ребенке вы должны быть сильными», Киев, 27 марта 2020

Kyiv, Ukraine, March 27, 2020. Photo: Anastasia Vlasova / hromadske

Prenatal Ultrasound: When There Is Bad News

Oleksiy Solovyov is an obstetrician-gynecologist, an ultrasound diagnostician with 30 years of experience in leading hospitals in Ukraine and 10 years of experience in two dozen Eastern European countries as a specialist in the use of medical diagnostic ultrasound.

He currently heads the fetal medicine department at the Nadiya clinic and heads the public charity organization “Fetal Medicine Foundation, Ukraine”. He has a reputation as a professional to whom pregnant women are often referred with suspicion of serious pathologies, as well as for possible intrauterine treatment, including intrauterine operations during pregnancy.

That is why Solovyov often has to tell patients bad news. Based on his consultations, women sometimes have to make fateful decisions about their pregnancies. In this profession you feel like you are at war because the life of unborn children may depend on the accuracy of your actions, says Solovyov.

Ultrasound is "the only way to look into the afterlife" because this is how we observe the life of a child before birth, said Solovyov. The doctor believes that without ultrasound modern obstetrics and gynecology are impossible.

But prenatal ultrasound is not just medicine. According to Solovyov, it is at the intersection of medicine, women's social rights and finance. The realization of the patient's abortion rights often depends on ultrasound. Although the patients themselves and their doctors say they do ultrasound to confirm that "everything is fine," prenatal ultrasound is actually aimed at "finding the bad," since there is no way to confirm whether "everything is fine".

Акушер-гинеколог Алексей Соловьев заведует отделением медицины плода в клинике «Надежда» и у него 30-летний трудовой стаж, к нему часто направляют беременных женщин с подозрениями на серьезные патологии, Киев, 16 марта 2020

Obstetrician-Gynecologist Oleksiy Solovyov heads the fetal medicine department at the Nadiya clinic and has 30 years of work experience. Kyiv, Ukraine, March 16, 2020. Photo: Anastasia Vlasova / hromadske

In Ukraine, a woman has the right of abortion at her own request, without any explanations and permits, especially from the husband, up to 12 weeks of pregnancy. Abortion is also allowed later, but only for cases where the unborn child is found to have serious malformations or other painful conditions, incompatible with life or those that could lead to significant disability for the child. In such cases, it is allowed to terminate a pregnancy up to 22 weeks. And after 22 weeks, termination is forbidden. This ban has not been not revised, despite numerous requests from doctors.

"So if we find developmental defects that are incompatible with life at a 23, or 29, or 34 week, we have to inform the patient, but at the same time explain that in our country it is forbidden to terminate a pregnancy at such a stage, so a woman should bring the child to bear, and wait until the child dies. Which is horrible and unacceptable,” stressed Solovyov.

At the same time, according to international statistics cited by Solovyov in the conversation, no ultrasound at all, in particular the one performed in the first 22 weeks, can guarantee that everything will be fine with the child. Even if you do ultrasound examinations of all women at 20-21 weeks in the best ultrasound rooms in the world, you can find only 70-75% of malformations visible at birth, and 25-30% will be missed since they still do not show themselves enough.

That is why in countries where the authorities listen to doctors, women have the right to terminate such a pregnancy until the birth is guaranteed, while Ukrainian gynecologists are faced with a choice: to violate current regulations or to force a woman to complete a pregnancy.

Благодаря ультразвуку мы можем наблюдать за жизнью ребенка еще до его рождения, от ультразвука часто зависит реализация права пациентки на возможное прерывание беременности. Пренатальная ультразвуковая диагностика находится на пересечении медицины, социальных прав женщины и финансов, Киев, 16 марта 2020

Kyiv, Ukraine, March 16, 2020. Photo: Anastasia Vlasova / hromadske

But severe pathologies of an unborn child are still rarer than overdiagnosis, as a consequence of the ban on abortion after 22 weeks. Because of the fear of "missing" the pathology during the ultrasound and being punished in one way or another, Ukrainian doctors often – knowingly or not – resort to overdiagnosis. Simply put, in case of doubt, they try to be insured.

"We still have a Stalinist approach to prenatal diagnosis: 'no man – no problem.' It is better to kill a thousand innocent people than to miss one "enemy of the people." Doctors are afraid to miss the pathology because they are punished by their superiors and patients have complaints about them. Therefore, in doubtful cases, overdiagnosis may occur. And parents are also not ready to take risks since after 22 weeks is approaching it will no longer be formally possible to terminate the pregnancy,” explained Solovyov.

We still have a Stalinist approach to prenatal diagnosis: "no man – no problem."

That is why in the current legal realities, Ukrainian ultrasound specialists are forced to avoid unnecessary problems.

"The doctor is "punched" by patients if something was missed, and by his own management, and the Ministry of Health, which writes orders and resents when we miss sick children who then have to be sent to an orphanage and receive stipends."

Furthermore, it is unpleasant to tell bad news to a patient. Especially as ultrasound is only a test, not a consultation. Even in a private clinic, the doctor has no more than half an hour for a test. And in public institutions, it can be much less – sometimes, when there is a queue, and only one ultrasound scanner for two or three doctors, even about 5 minutes.

But the consultation is also critical, to explain what it is possible to learn at each specific stage of pregnancy. A consultation may be also needed after an ultrasound – a prognosis for abnormalities found, explaining what further examinations and steps may be.«В этой профессии чувствуешь себя, как на войне, ведь от точности твоих действий зависит жизнь или смерть нерожденных детей», Киев, 16 марта 2020

"In this profession you feel like you are at war because the life of unborn children may depend on the accuracy of your actions", says Oleksiy Solovyov, Kyiv, Ukraine, March 16, 2020. Photo: Anastasia Vlasova / hromadske

A patient must clearly understand what to expect next.

"For example, an amputation of a limb or a defect of the interventricular septum of the heart was found in the fetus in utero. In some cases, this may end in a normal life for the child with some limitations. And in some cases, this may be a sign of a systemic disease associated with chromosomal aneuploidy or other genetic abnormalities, and this requires additional research, money and time," said Solovyov.

Both healthy and ill fetuses may have the same ultrasound findings. For instance, a single umbilical artery (usually people have two umbilical arteries but some have one), or velamentous cord insertion when the umbilical cord inserts into the fetal membranes, not into the middle of the placenta.

"It takes time to convey this, and very often we don't have it, because the next patient is waiting in line. And every pregnant woman thinks only of herself and her child, she does not want to wait because of other people's problems. Often, when a problem is found, the woman just cries and does not hear anything, she does not want to or cannot hear the doctor's explanations, or she has only aggression towards the doctor as a "cause" of bad news,” told Solovyov.

“If she did not hear the doctor's explanations and terminated her pregnancy without additional necessary genetic tests, it means that we have not completed the diagnostic process. And then such women have the same three questions: Why did this happen to me? What was that? Can this happen again during the next pregnancy and with what probability? And we can't answer because we don't have a diagnosis since the family refused diagnostic procedures. People sometimes refuse without realizing our explanations, and sometimes they simply lack money.”

Алексею нередко приходится сообщать пациенткам плохие новости: ведь на основе его консультаций женщины иногда должны принимать судьбоносные решения относительно своей беременности, Киев, 16 марта 2020

Oleksiy Solovyov often has to tell patients bad news, and women sometimes have to make fateful decisions about their pregnancies based on his consultation. Kyiv, Ukraine, March 16, 2020.Photo: Anastasia Vlasova / hromadske

Supporting patients psychologically is another problem for prenatal ultrasound. Due to lack of time, an ultrasound scan doctor usually has time only to express his sincere condolences.

Ideally, a hospital should have a psychologist on duty, underlined Solovyov. "Then the ultrasound scan doctor would have the opportunity not to go through every such story so grievously. Especially if a woman comes alone, without a husband or a relative, or friend, and her doctor, for example, had to tell that her child is gone and the pregnancy should be terminated. And he often does not know what the woman’s reaction will be, would she harm herself after such news after leaving the hospital."

In practice, as it is not possible to have a psychologist on hand, Solovyov always invites the patient's husband to be present during the test. 

Pediatric Palliative Care Doctor: "Same children as everyone else"

Anna Yatsulchak is physiotherapist, pediatric palliative care doctor. After an internship at an emergency hospital, she worked in the intensive care unit of a regional hospital. Later, after maternity leave, she engaged in physiotherapy and rehabilitation.

Since September 2018, Yatsulchak has been working at the Kyiv City Children's Diagnostic Center, in the mobile palliative care department. A pediatrician, a psychologist and a nurse work with her. Currently, the team has 52 young patients under its care. These are children who cannot be cured but whose quality of life can be significantly improved.

"When the head of palliative care department invited me to join them, I was hesitant because I had no experience working with children. Frankly, I was scared. Before that, I watched children die in intensive care, but when you see a child in a family, not in a hospital bed, when you see a child being loved the way it was born, it’s a completely different feeling,” Yatsulchak said.

Врач-физиотерапевт Анна Яцульчак работает в отделении мобильной паллиативной помощи Киевского городского детского диагностического центра. Она занимается с детьми, которых невозможно вылечить, но качество жизни которых можно существенно улучшить, Киев, 26 марта 2020 года

Physiotherapist Anna Yatsulchak works in the mobile palliative care department of the Kyiv City Children's Diagnostic Center, Kyiv, Ukraine, March 26, 2020. Photo: Anastasia Vlasova / hromadske

Before getting a job in the palliative care department, she underwent a 2-week internship at the Warsaw Children's Hospice.

"I looked at how they work and realized that a child should be perceived as a child who should be given the joy of childhood. And who but a physiotherapist can come up with something to get this child out of pain? Just come and play with her and show her parents that she can be treated like a normal child," says Yatsulchak.

The palliative care is provided by a mobile squad. "This format of home visits is incomprehensible in Ukraine, but all over the world medics have been working like this for a long time. Because the child is relaxed and perceives you as an animator. We do not come in white coats. But at the same time, children receive medical care."

Yatsulchak remembers her first working day and the first patients very well.

"First, a boy with a congenital brain defect, microcephaly, cerebral palsy and epilepsy. He is still under our care. This is a great family – they are positive and love him very much. They are our friends now. And second, a boy in a large family with a genetic disorder transmitted through the male line, Duchenne myodystrophy. He is the fifth child in the family. The four previous children are healthy. This is also a caring family. Older children help their elderly parents, the boy is gregarious, mentally fine, he understands what he is sick and how it will all end. He understands that every day his muscles become weaker, it is harder for him to breathe,” she told adding that there is no effective cure for this genetic pathology.

«Надо воспринимать ребенка как ребенка, которому надо подарить радость детства. И кто как не физиотерапевт может придумать что-то, чтобы этот ребенок оторвался от боли?», Киев, 26 марта 2020 года

Kyiv, Ukraine, March 26, 2020. Photo: Anastasia Vlasova / hromadske

Pediatric palliative care patients have a wide range of diseases. The first association with palliative care is oncology, but in reality they have almost no cancer patients, says Yatsulchak. In 80-90% of cases of children with cancer, their parents do not agree with palliative care and fight the disease to the last breath: they look for money, doctors, opportunities, go abroad.

"But we had a boy with cancer. The mother was told that the child was terminally ill. They took the child and went to the river. The boy was 9 years old, he loved fishing, and they spent all summer in a tent. Then in Italy they found maintenance chemotherapy, then went for a CT scan and it showed improvement. Now the boy is discharged from palliative care. They haven't contacted us in over a year,” she recalled.

There are families that became etched in your mind and you want to help them not only as a specialist

According to Yatsulchak, currently 80% of children under the care of the palliative care department have neurological lesions: сongenital brain defects, cerebral palsy, which are complicated by epilepsy, severe scoliosis, or respiratory failure. Some have genetic syndromes, such as Edwards syndrome which is common in palliative care – children are born with chromosomal abnormalities and have severe inoperable heart diseases. Usually they have feeding tubes.

"I have seen those who have lived with this syndrome for a month, but there are also those who have lived for 9-10 years. We now have two kids with Edwards syndrome. One is a little over two years old, the other is six and a half months. We took her out from the intensive care ward in Ohmatdyt clinic very gradually, without procedures which are traumatic for parents, and switched to palliative care. They constantly receive treatment from our service, they are not constantly looking for doctors and do not hear offensive phrases. Although they had undergone all screenings in expensive clinics, they did not know that they were expecting a child with developmental disabilities. It was a shock for them. They were faced with the choice of what to do next, how long this child will live. Now they are under our care," told Yatsulchak.

«Я наблюдала, как в реанимации умирают дети, но когда ты видишь ребенка в семье, а не на больничной койке, когда ты видишь, как ребенка любят таким, каким он родился, то это совсем другие ощущения», Киев, 26 марта 2020 года

Anna Yatsulchak in Kyiv, Ukraine, March 26, 2020. Photo: Anastasia Vlasova / hromadske

During the coronavirus quarantine, the team does not do any planned visits, for fear of infection.

But under normal conditions, families are very much waiting for them. Usually, these families are lonely people, whose life, due to child’s serious disease, is an endless groundhog day. Most children with a palliative diagnosis have disturbed sleep, do not distinguish between day and night, so their parents do not have time for themselves. And the doctors’ visit is an opportunity to get some relief.

Often Yatsulchak becomes friends with her patient’s family. "There are families that become etched in your mind and you want to help them not only as a specialist. There are basic household problems, and you can buy a pack of diapers for the family. And there are families with whom it is easy to distance oneself and have more businesslike communication."

«Формат паллиативной помощи как домашние посещения выездной бригады врачей для Украины непонятен, но весь мир так давно работает. Потому что ребенок расслаблен. Они воспринимают тебя как аниматора. Мы же не приходим в белых халатах. Но при этом дети получают медицинскую помощь», Киев, 26 марта 2020 года

Kyiv, Ukraine, March 26, 2020. Photo: Anastasia Vlasova / hromadske

Palliative care is about the quality of life and every child, regardless of health, and of having a childhood, underlines Yatsulchak.

"All my work as a physiotherapist is aimed at keeping the child where something is happening. For the child to be in the family, socialized, so that the child is not perceived as a patient who lies on the couch all day. This child is the same as others.”

However, palliative doctors often have to deal with patient death. In the last year alone, two Yatsulchak’s patients have died.

"A girl was diagnosed with metabolic encephalopathy. Simply put, with this diagnosis, the body secretes substances that poison the brain. They had undergone tests in Ukraine and Germany, they had a very correct approach to rehabilitation. They had everything to make her feel like a child. They raised money through funds, bought a comfortable wheelchair for her, so they could walk for a long time. When she began to have breathing problems, a tracheostomy tube was placed. When the parents realized that there were problems with swallowing, they put in a gastrostomy tube. At some point, problems with the respiratory system began very sharply. Eventually, she was admitted with pulmonary edema to the intensive care unit at night. Four days later the child died. She was three years old."

«У каждого ребенка, независимо от состояния здоровья, должно быть детство», Киев, 26 марта 2020 года

Yatsulchak underlines that “palliative care is about the quality of life and every child, regardless of health, having a childhood”, Kyiv, Ukraine, March 26, 2020. Photo: Anastasia Vlasova / hromadske

Caring for children who will never recover is very difficult psychologically for the doctor as well. Yatsulchak says that she gets mental strength from her own family. Together with her husband, she raises two children, 7 and 5 years old.

But when she feels very bad, she turns to a psychotherapist and pays for services out of pocket.

Despite the difficulties, Yatsulchak cannot imagine herself anywhere else. "I came from the intensive care unit, you can't fix it. I don't imagine myself as a rehabilitation specialist in a fitness center."

Palliative Care for Adults: "The emotions to live for"

Zoya Maximova is a palliative care doctor for adults. She received her medical education as a doctor/medical psychologist and did an internship in a psychiatric hospital. Then she worked in a palliative care department of the Kyiv City Clinical Hospital №2.

After ten years at the hospital, Maximova went on maternity leave and did not return afterward. Now she works in a mobile palliative care team at the Svoyi charity fund. Maximova and her colleagues try to care for their patients at home.

"In palliative care, you do not encounter ordinary patients. You don't see a person only once – you live with a person for the rest of the patient’s life. You are involved in the family, you meet relatives. You become friends with the patient,” noted Maximova.

Therefore, in addition to medical interventions, the palliative care doctor performs purely caring actions.

"We had a wonderful family in Irpin. They loved their dad very much. He worked as a welder, made things in the garage, and helped his wife. But when he was laid up, neither his wife nor daughter could psychologically even force themselves to approach him. The daughter was getting hysterical, she was starting to cry. So I was helping the man to shave, he taught me to shave with a special blade."

Врач паллиативной помощи Зоя Максимова работает в мобильной паллиативной помощи при благотворительном фонде «Свои», оказывает помощь взрослым пациентам, преимущественно у них дома, Киев, 17 марта 2020 года

Palliative care doctor Zoya Maximova in Kyiv, Ukraine, March 17, 2020. Photo: Anastasia Vlasova / hromadske

Maximova believes that palliative care is about respect for human dignity. Very often doctors do not see a patient with a difficult disease as a person. When cancer patients see a doctor with a headache or runny nose, the doctor often replies, "You have cancer, what do you want?". And for people with difficult diseases, attitude is important.

Maximova told about the experiment she did together with volunteer Lesya Lytvynova: they tested T-shirts and fixation sleeves which are usually used for bedridden patients.

"Lesya fastened me to a chair with the T-shirt and tilted me head down without warning. It was very scary."

People are frightened by the unknown and their inability to control it.

At the same time, medical workers often make such interventions with seriously ill patients without even a warning, perceiving patients simply as bodies. But when a patient is bedridden after a stroke and can’t speak, they’re often still conscious and lucid.

"I have a cancer patient, Ira. She has gastrostomy and tracheostomy tubes. But when I come to her, we have a tradition – we drink coffee together. I drink from a cup and she drinks from a syringe to the gastrostomy tube. For her, this ritual is important, that we sit next to each other, drink coffee and talk about something,” said Maximova.

«Очень часто за тяжелыми диагнозами врачи не видят в пациенте человека, а людям с тяжелыми диагнозами важно человеческое отношение», Киев, 17 марта 2020 года

Palliative care doctor Zoya Maximova in Kyiv, Ukraine, March 17, 2020. Photo: Anastasia Vlasova / hromadske

Palliative care physicians often have to tell patients about death.

"Sometimes when I come to a patient, he asks if euthanasia is allowed in Ukraine. This is a signal that a symptom has not been corrected: either the pain, or he is suffocating, or he is exhausted and mentally tired. That is, the patient does not sleep, has constant pain, he is frustrated and he is ready to die. You must correct the symptom: relieve pain, provide portable oxygen so that a person can go outside,” says Maximova.

"And there are patients who ask how they are going to die. People are frightened by the unknown and their inability to control it. People don’t know what to expect and how to deal with it. For example, if there is bleeding, here is a list of drugs that should have at home. If there is pain, then these drugs will help. This reduces the level of anxiety and the patient understands that at least something is under his control.”

«Есть пациенты, которые спрашивают о том, как они будут умирать. Людей пугает неизвестность и невозможность ее контролировать», Киев, 17 марта 2020 года

“There are patients who ask how they are going to die,” says Maximova, Kyiv, Ukraine, March 17, 2020. Photo: Anastasia Vlasova / hromadske

The work of a palliative doctor requires empathy. "You cry with the patients," says Maximova.

"There is occupational burnout anyway. I don't take antidepressants, but when patients tell you their stories, you really feel sorry for them. There are doctors who distance themselves. For example, a surgeon needs to do this, because if not, he will not be listened to and he will not be an authority. In my case, you need to be a patient’s friend to know their concerns. So if I want to cry, I cry next to the patient, I do not hold back. Maybe it's not right, but it's easier for me,” she explains.

There is a stereotype that palliative care means death, but in reality, palliative care is about life, stressed Maximov, and about the fact that it is important for a person to spend their remaining time as well, as comfortably – physically and psychologically – as possible. And often caring for the patient gives the doctor themselves "the emotions and the moments to live for."

«Есть стереотип, что паллиатив — это смерть, но на самом деле паллиатив — это жизнь», Киев, 17 марта 2020 года

"There is a stereotype that palliative care means death, but in reality, palliative care is about life," stressed Maximova, Kyiv, Ukraine, March 17, 2020. Photo: Anastasia Vlasova / hromadske

/By Anastasia Vlasova and Tatyana Okharkova. Translated by Vladyslav Kudryk.