The business of breathing

How Vladimir Putin tried and failed to help Russia's sickest children

During his last live-televised public “Q&A” on April 14, 2016, Vladimir Putin responded to a question about close relatives' access to hospital patients in intensive care. He said that there currently aren’t provisions for this. In response to another question—about the possibility of the government buying medical respirators so the terminally ill could be at home and not in intensive care—Putin said that the state doesn’t have the money. Meduza's special correspondent Katerina Gordeeva looks at many times Putin has been asked these questions and how his answers have changed over the years.

Nastya in 2014

For the first three hours, Lydia (a pseudonym) sat on a chair staring at a crack between the tiles on the opposite wall. Then she started to gasp. Suddenly all the unshed tears for her sick daughter flowed and it was impossible to hold them back. Lydia's legs turned to rubber bands, and she could no longer get up. She no longer had the strength to go find a doctor, and look him in the eye and ask him to let her into the intensive care unit for at least a minute.

She thought to herself, “If they let me in, I’ll find a way to stay.”

Technically speaking, there were 100 feet between Lydia and her daughter Nastya (a pseudonym). Lydia sat in the hallway, and Nastya was lying in intensive care. This was at a children's hospital in a Moscow suburb. It was the weekend, and the doctor on duty said he couldn’t authorize Lydia's access to her own daughter. And he refused to call the head doctor and bother him on his day off.

Lydia returned home around nighttime. She took her brother’s hunting rifle and wrapped it in rags. She got into a taxi and drove to the hospital. With the rifle at her hip, she advanced in the direction of the intensive care unit.

At this point, everything became a blur: Lydia screams, someone wrings her arms, someone else calls the police, doctors and nurses are running around, and there’s the smell of ammonia. And from somewhere above, the voice of the doctor on duty rings out: "Do what you want! She’s dead! She’s dead! She’s gone!"

That’s how Lydia found out that her only daughter, the 5-year-old Nastya, died in intensive care.

For some time beforehand, Nastya was seriously ill with cancer. She had already been in intensive care several times. Lydia, of course, was haunted by thoughts about when disaster would strike. But Lydia never imagined that her daughter would die without her mother at her side.

She rushed about the hospital, demanding her daughter's body and blaming the doctors for murder. The alerted police were already arriving at the hospital. Employees and hospice volunteers (who had helped Lydia psychologically, and provided her daughter with anesthesia) tried to resolve the situation by phoning a hospital about 2.5 hours outside Moscow.

An agreement was reached in the end: they would “forget” about the incident with the gun, and Lydia got to collect and bury her daughter, as long as she didn’t try to sue the hospital.

This incident happened in the winter of 2013, on New Year’s Eve.

In spring 2014, Niuta Federmesser, the head of the Faith Hospice charity was invited for the first time to appear on President Putin's live-televised “Q&A.” Remembering the story of Lydia and Nastya well, she decided to ask the president about parents’ right to be with their children in intensive care.

During the TV broadcast, the president responded to 81 questions. The show lasted 3 hours and 54 minutes, but there was no time for Niuta Federmesser to ask a question. She did manage, however, to get through to the president’s electronic mailbox. The Kremlin rerouted the letter to the Ministry of Health, where officials responded that "the heads of Russian Federation’s government health agencies will take the necessary steps to organize family visitations with children being treated at medical centers, including the Department of Anesthesiology and Intensive Care."

But here have been no significant changes in the daily lives of seriously ill children and their parents.

Ksiusha in 2015

Before she turned three, Ksiusha Kreshtopova was hospitalized nine times at various intensive care centers. At one hospital, the girl’s ear literally fell off due to bedsores. She spent time in one intensive care unit so miserable that her parents weren't allowed to see her under any circumstances. At a better facility, her parents were allowed place a toy pony with long bangs beside her hospital bed.

Ksenia suffers from Type 1 Spinal Muscular Atrophy (Werdnig-Hoffmann Disease). She will never be able to breathe on her own—only with the aid of an artificial respirator. One that would fit into her home and stand alone with the standard set of refillable parts (a humidifier, a pulse oximeter, a nebulizer, an oxygen concentrator, and suction unit) costs about one million rubles ($15,000).

Lighthouse Children's Hospice collected money for Ksiusha from all over the world. And then the world compared pictures of Ksiusha from her life in intensive care and her life at home. It's hard to believe it, but Ksiusha actually smiled at home. Her father, Alexander, reported to all those interested: according to his calculations, Ksiusha’s home respirator was paid off in six months. In other words, keeping Ksiusha in intensive care cost the state more than it took to let her Ksiusha at home. "If the government took it upon itself to transfer these children from the hospital to their homes,” Alexander says, “it would have saved. I'm not just talking about the psychological aspect.”

In the spring of 2015, Niuta Federmesser, the head of the Faith Hospice relief fund was back at Putin's next annual “Q&A.” This time, she managed to reached a microphone.

Federmesser spoke about developing arrangements for supplying free, temporary-use respirators (that is, use at home) to children in need. According to the charity’s information, there are about 2,500 such children across Russia today. "[They] live in intensive care, at public expense, and can’t see their mothers, their peers, and don’t mature. They die prematurely, including from loneliness. Their lives depend on these devices, and they want to be at home," Federmesser told the president. Putin said he didn’t know anything about it, but promised to give the relevant authorities the necessary directives, and the problem with purchasing respirators for children whose parents want to take them home from intensive care would be solved.

A year later, Federmesser had to admit that Putin really did give those orders to his subordinates, but they never fulfilled them. "In the process of executing the president’s orders, officials held several meetings at various levels. They invited charities, the parents of sick children, financiers, doctors, and lawyers to meetings. As a result, the Ministry of Health reported to the government that the issue had already been resolved, and further changes in Russia's laws were unnecessary because the respirators were included in hospice equipment lists.

It wasn't clear what this response had to do with Putin's orders; what mattered was that officials had “accounted for the thing,” Federmesser says. “In reality, everything is the same way as it was before the question to the president and his directives. We don’t know of a single case where a child was released from a hospital with the necessary equipment purchased by state funds. Moreover, parents’ requests for respirators so they could bring their children home from intensive care have been denied."

Alyosha in 2016

Alyosha P. was born in the autumn of 2015, and he almost died at the end of the winter in 2016. The ambulance took the child to a large children’s hospital in Moscow, where he was placed in intensive care, and hooked up to tubes. Like all patients' parents, the boy's mother and father were turned away and told to come back between the visiting hours of 2 p.m. and 3 p.m.—the time doctors in intensive care usually inform relatives about their children’s conditions. It's then when relatives are allowed a brief 5-10-minute visit with the children.

Alyosha's parents knew their son's illness was terminal. And they suffered especially because Alyosha spent his final days separated from them behind three doors and a corridor, alone in intensive care, hooked to a respirator, with mama, papa, and his brothers and sisters waiting in the dark, unaware if he was alive, crying, cold, or thirsty.

After two weeks in intensive care, Alyosha was transferred to the palliative ward. Children's hospice provided the hospital with a non-invasive mask respirator. Alyosha was breathing, but his eyes were still fading.

His mother and father told the doctors they preferred to have their son die at home, in the company of their large and friendly family. It would make everything so much easier, they pleaded. But the doctor said discharging Alyosha on a Friday would be impossible; it would have to wait until Monday. The parents explained that every minute he spent at home was precious. The argument could have gone on indefinitely, it seems, but Alyosha's parents were resolute. Under their own responsibility and despite the protests of others, they took the boy home. And the hospital called the police.

The next day, police officers came to the boy's home. For 30 minutes, Alyosha's mother and father explained to a stranger the importance of being at the bedside of their helpless child at his most difficult final moments.

"Try to imagine what a child goes through just lying and lying alone in intensive care for a month. With strangers. Without the ability to cry, to ask for anything and be heard,” says Dr. Alexandra Levontin, who works in intensive care. “Now I'm not even talking about what's going on inside that child. I say this as a doctor. A child who spends lots of time in intensive care without close relatives develops severe psychosomatic reactions.

“I have a patient. She had to endure being admitted to six city hospital intensive care units. At times, it was an adventure for the parents: which intensive care hospital will the child be taken to next? How do you find out if she’s alive or not? But when she was finally at home, the family was faced with an enormous challenge: the child became hysterical whenever the mother or grandmother left the room. She thought she was going to be alone again. And that’s how it is forever," Dr. Levontin says.

Alyosha died on the second day after his mother and father took him home from the hospital. The parents believe it was important for the entire family that the boy died in his mother's arms.

Less than a month after Alyosha's death, at Putin's televised “Q&A,” the actor Konstantin Khabensky, who founded a charity that helps children with cancer and other serious brain diseases, again asked Putin a question related to the possibility of relatives gaining access to children in intensive care. Khabensky also asked what prevents the state from allowing terminally ill adults and children to be at home, where they would need respirators and related devices.

"We all know that, last year, Niuta [Federmesser] already asked a question about respirators and apparently got a positive response. And two years ago, there was a question about intensive care,” said Alena Meshkova, the director of the Konstantin Khabensky Foundation. “We know that questions were asked and answers were given, but nothing has, in fact, changed. They ‘sorted out’ parents' visitation rights the same way nobody allocated state funds in a whole year to purchasing a single respirator for home use. So we decided to ask the question again. It is in the interests of the charitable community that systemic problems be solved quickly and efficiently. But we certainly did not expect the answer would be that there isn’t any money. We thought the process would start and this initiative would be implemented—that you just have to push again. But it turned out otherwise."

"No one believed in the money for respirators. But now even the rhetoric has disappeared—especially lately," says Ekaterina Chistyakov, the director of the Give Life charity, another charitable organization that has for a long time devoted serious attention to the issues of family access to intensive care and the possibility of palliative patients to be at home, rather than in medical institutions.

"Vladimir Putin has specified that there isn’t any money to provide our patients with respirators,” says Nyuta Federmesser. “But we’ve provided documents to the Ministry of Health, which in fact show our proposal will save the state money. See for yourself: it costs 13,000 rubles [$200] a day for a child to be connected to the respirator at home. This total includes everything from servicing the respirator to diapers and the patient’s food. One day in a state intensive care unit on a respirator costs 36,000 rubles [$550]. It’s almost three times less expensive!"

"A year ago, after Niuta raised the issue about providing home respirators at Putin's ‘Q&A,’ we presented the Ministry of Health with a complete financial feasibility study,” says Olga Germanenko, the head of the Association of Patients with Spinal Muscular Atrophy. “We have calculated that equipment for the home costs many times less than professional equipment in the hospital. And consider how much it costs for nursing, and servicing and replacing defective parts: It’s 4,000 rubles [$60] at home versus 24,000 rubles [$365] a day in the hospital! These are the net expenditures on respirators. How could the government not take advantage of such savings? "

Alina. What it costs to breathe at home

For the past two and a half years, Olga’s seven-year-old daughter Alina has only breathed through a respirator. Alina can’t tell her mother what it was like to be alone in intensive care or how much better it is to be at home. Alina cannot speak. But Olga washes and dresses Alina every day at home. She still braids her daughter's hair, too, saying it “turns her beautiful.” This is their life today, but it wasn't always the case. Alina once spent five months isolated from her mother in intensive care. Were it not for charity workers who collected the money necessary to buy Alina's respirator and medical supplies, the girl would still be locked away at the hospital.

"In the summer, we’re going to try and start going out for walks,” Olga says. “For now, we're improving our stamina. Every day, I give her a massage, wipe her, and turn her over... Tell me, who would do all this in intensive care? Who can love her like I love her, when it's just their job? For even the best nurse and the most compassionate doctor, it’s still work. But for me, Alina is my life. This is the difference. And I don’t need to be paid for taking care of my own daughter. I do it because I am her mother. That's what I say when asked about money."

"The issue, of course, is not about money; it’s about the lack of the legal framework that would regulate the procedures for how children on respirators are transferred home and regularly provided with supplies so children currently in intensive care can live at home with their families. Did you know that children with a respirator can go to school, swim in the pool, and walk? Instead, they are locked in intensive care, where they develop bedsores, where they are lonely and scared, where their physicians avoid them because they are hopeless, where they can perish much earlier than at home, because they see no parental care, and where they are dying alone and without love," says Niuta Federmesser.

Today, all 110 respirators used in Russian homes were purchased and are serviced by money donated to the Faith Foundation. Technically (according to federal law N323, which states that health care in Russia takes place in medical institutions maintained by healthcare providers), the parents using respirators at home and the doctors helping them are criminals because they violate the law, in fact, by practicing intensive care at home. "A family with a person on a respirator in their house has already broken the law,” Federmesser says. “In the event of the death of such a person, a child, for example, a family can be charged with criminal negligence. And nobody will be able to protect them.”

"You've also got to understand that a person's blood levels on a respirator change over time and depending on conditions. If it’s a child, he’s still growing,” says Anton Volkovsky, a resuscitation doctor. “You have to adjust and correct the machine. A resuscitation doctor has to do it. There’s a 40-percent shortage of resuscitation doctors in intensive care units in our country’s regions, and nobody is going to make house calls and no one will help. But what can you say? You drive out 60 miles from Moscow or St. Petersburg and there isn’t a single functioning blood analyzer in any hospital. And these things are necessary to adjust the operation of respirators. So much for having a respirator at home!"

There's no legal basis in Russia to realize the idea putting respirators in homes, and the country lacks the doctors and the clearly stated Health Ministry policies to manage the process. And there is no law that stating that domestic respirators, supplies for them, or the aid of resuscitation doctors should be subsidized by the state, though governments in many other countries do fund such services. Every breath these children take through a respirator is money from donors. And if one of these charities, for example, were suddenly unable to collect the necessary funds, it’s frightening to imagine what could happen.

"According to our estimates, solving the issue of home respirators in Russia requires a thousand respirators and monthly supplies for them,” says Niuta Federmesser. “This issue costs about one billion rubles [$15.5 million]. This is a one-time purchase of the devices, as well as monthly supplies. Of course, the devices can move from one family to another, after—for natural and sorrowful reasons—they would no longer be needed. The cost, of course, is rather large. But the state spends more on people in hospitals!"

"I don’t know. Maybe the problem is that they can find finding in one place, but not another,” says Olga Germanenko, head of the Association of Patients with Spinal Muscular Atrophy. “After all, the hospitals with OMS [compulsory health insurance] in fact spend more. And everyone is satisfied with this. Whereas putting these devices in home costs much less, but they can't reallocate the funds?”

“Alas, everything is simple and clear: when a person on a respirator occupies a bed in a state hospital branch, all the help he gets is from OMS funds, which means that if we talk about allocating him a home respirator, it's not about additional funding, but about saving a significant amount of money by allocating it wisely. But we need to think about how we redistribute it. We need to devise a good support system. Nobody cares before you do that. Nobody is racking their brains about it, anyway,” Federmesser concludes sadly.

After Putin's ‘Q&A.’ Stepa

"You know, we watched Putin ‘Q&A’ with our doctors. And when Khabensky asked the question, and the president answered him, it became clear that all these problems aren’t considered important at the governmental level,” says resuscitation doctor Alexandra Levontin. “There are several thousand sick people who are scared and alone in intensive care, but it's small potatoes compared to military conflicts and the economic crisis. And the people we reach out [the authorities] to don’t face such problems. But they just know if one of their loved ones lands in intensive care, it’s most likely not going to be in this country. And they’re allowed to be with them. This, of course, is very unsettling. "

Just over a year ago, Dr. Levontin, while working at the Scientific Center for Children’s Health, met Stepa Gorbanev from the village of Komsomolsk outside Belgorod. Stepa did not have (and still doesn’t have) a specific diagnosis, but there is a specific problem: Stepa could not breathe on his own. Dr. Alexandra Levontin took the Gorbanevs in hand. She taught Stepa’s mom how to change the respirator tube, and how to deal with the chirping alarm every intensive care respirator has. And then she went on vacation.

There isn’t a single Russian clinic that likes patients to "lie" for more than 21 days, and Stepa was lying in intensive care for several months. And while Dr. Levontin was on vacation, Stepa was transferred to another intensive care unit where his mother couldn’t be with him all day. The mother was crying and called Dr. Levontin. She returned to Moscow and went to Stepa’s new intensive care unit, lying that she was his godmother, because she didn’t know if they would admit a third-party resuscitation doctor. But they told her to wait. Dr. Levontin spent several hours waiting in front of the intensive care doors without her white coat, just as all relatives do, waiting to see patients in intensive care. Then they brought her in for 15 minutes and very quickly told her to leave. "You know, it turned out that waiting wasn’t as hard to leaving," Alexandra says. Having been in a relative’s shoes, Dr. Levontin decided that she would never force relatives out of the intensive care unit.

"This is not only a human consideration,” says the doctor. “It's also a professional matter: when a child is with their parents, then, at least, they do not need such a deep sedation, which is usually administered in intensive care to protect the central nervous system and the heart. If someone can explain this or that procedure to the mother, she can turn around and explain it to the child. And that makes it easier for the child. And then it's easier for the doctors, too. And then you'll finally get normal constructive work. "

"I understand what Putin is talking about when he says it's not possible to realize relatives’ right to unrestricted visitation in intensive care,” says Anton Volkovsky, a resuscitation doctor. “Our hospital, and generally all hospitals across the country, was built between 1940 and 1950. They were built according to different technical standards than those of today. There's no forced ventilation, it's cramped, and there's no space to turn around. It's also difficult to establish a normal laundry system in most regional intensive care units. Take the curtains on the folding screens. If we suddenly assumed that someone wanted to move these screens to get things more comfortable when a patients’ relatives visit, they would have to be changed daily. The laundry service must work like clockwork to keep on top of sterility and maintain the microbial balance of the system. "

According to Volkovsky, the vast majority of regional hospitals simply cannot physically afford to open the intensive care doors to unrestricted visits. "That is, unless, you undertake some Herculean effort, then it’s possible. But hospital managers and the medical staff have no motivation to do this,” Volkovsky concludes. “Generally there aren’t enough nurses and doctors in intensive care, and the work conditions aren’t so great. If you let in anyone, you'll get a flood of videos and complaints, most of which are perfectly reasonable, but who needs a headache like that?"

Volkovsky believes that, for an ICU to be ready to receive visitors, many hospitals would need to redo already finished cosmetic repairs—they'd need to separate the department by areas, set up functional beds, arrange for the installation of modern ventilation systems, and install a sliding rail system that allows the screens to move. There isn’t money for much of this, not to mention an absence of willingness. "It requires replacing the entire system, including the system of opinions on things. It’s simple to say nothing is impossible. But it would also be true! To allow people in intensive care without all the proper conditions would increase the frequency of infections, trigger the transfer of intra-hospital strains between departments, and result in the massive infection of people with weakened immune systems, primarily in oncological departments. That’s what any person familiar with the system would tell you. And they would be right," Volkovsky concludes.

"Talk about hygiene always seems strange to me. This is a desperate argument concerning the intensive care unit when there is nothing else to say,” says Alexandra Levontin. “It’s easy to use sanitary norms and standards as a shield to hide behind, if you have nothing else to say. And what about employees who work in intensive care? Do they stay off the streets and avoid all contact with infections? No, they go outside and they come into contact with diseases. I remember how Italian colleagues told us, laughing, that the infections from outside gobbled up the germs inside the hospital, after they stopped changing their street shoes when they got to work.

“But all this, I repeat, all this is not an argument in the discussion about whether or not to let the family be with a person who is wasting away. You get the right answer if you imagine yourself in the place of someone bad off. Or if the one underneath the tubes and catheters is the most priceless person in the world to you. You need to go to him or not, what would you say now?"

Lydia Moniava, the children's program manager for the Faith Hospice Foundation Hospice says, "When they explain to a mother, who is in intensive care with a precarious child in critical condition, the purpose of medical procedures and openly say when the child gets worse, what will happen to him and what the doctors will do to help him, the mother becomes the doctors’ ally. You only get help and cooperation from her."

"Occasionally there are times when the parents are inept,” Levontin says. “But mostly relatives in intensive care are hands-on, attentive, and helpful. No one from the medical staff will take care of the patient when it comes to collecting saliva, wiping snot, treating bedsores, or turning them every two hours like a family will."

Professionals and resuscitation doctors, while arguing the nuances, all agree: good hygiene (washing hands before and after visiting the intensive care unit and wearing shoe covers, caps, and gowns), and fulfilling medical staff directives will contribute to making intensive care an area open to families. "Of course, in most cases, even a miracle won’t make a 24-hour family stay possible, but that, as a rule, is not up for debate," Levontin adds.

"I remember Alina lying in an intensive care unit where it was so crowded that it was impossible to turn around. There were three children with tubes, wires, and catheters. So, if their relatives all came visit at the same time, you got more than three adults. All relatives can’t find room at the same time. We came to an arrangement to find a way out of the situation," says Olga Germanenko, the head of the Association of Patients with Spinal Muscular Atrophy. And then she adds, "What we're doing is asking for respirators in homes and the discharge of patients who would ‘live’ on them, just so they can be near their families, so they don’t occupy hospital beds useful for other acute and urgent patients. So things were easier for our hospitals, too.”

"Try to imagine it: In the country's intensive care units, there are still 2,500 patients who could be at home! Who could free up beds for others who need them very badly but there are no places!” Niuta Federmesser says enthusiastically. And then she falters, saying, “But we'll need to save, heal, and discharge all the new patients. And, again, we'll need money. But, as they’ve already told us, there is no money.”

This text was translated from Russian by Sean Guillory.

Katerina Gordeeva

Riga, Latvia