MOSCOW – Children seldom cry at the Lighthouse.
Tucked away in a quiet neighbourhood in central Moscow, the children’s hospice is filled with joyful colours, lots of light, and caring staff. Artwork made by the patients decorates the walls, a yellow submarine inspired by the Beatles song serves as the nurses’ station, and a spotted ray flaps its fins in a large aquarium.
One afternoon in July, Alexey Veselov, a 16-year-old boy with advanced-stage leukaemia, lay in bed in Cabin No. 2, surrounded by his mother, his father and a fluffy white Bichon Frise named Snezhok, or Snowflake. Outside, Alexey’s brother Misha, a cheerful preschooler, darted around the hospice’s leafy park. Alexey was frail and drowsy, but he was not in pain.
Alexey spent four years being treated for cancer, undergoing a bone marrow transplant and several rounds of chemotherapy, but in the end doctors concluded that the disease was terminal. As the illness progressed, Alexey began experiencing severe pain. He couldn’t eat, he vomited, he was too weak to move.
“I just lay in bed staring at my tablet and suffered,” Alexey recalled.
Here at the hospice, Alexey was put on tramadol, an opioid analgesic, and the pain went away. He could now focus on the time he had left. Alexey swam in the hospice’s pool, played video games, enjoyed having breakfast with a view of the park, and made short trips in his wheelchair around the neighbourhood. His family and Snezhok all stayed with him in his room.
“It’s very important for us that we can be here with him, that we have the medical support that we need and that we can all be together,” said Alexey’s mother, Nadezhda Veselova.
In Stavropol, a city about 1,400 kilometres (900 miles) south of Moscow, a starkly different scene unfolded with another child in need of palliative care. Angelina Goritko, an emaciated 12-year-old girl with cerebral palsy, lay in her bed screaming and convulsing in pain, her tongue falling out of her mouth. Next to her, her mother, Anastasia Goritko, was wringing her hands in despair, unable to help her daughter.
For months, Goritko had been pleading with doctors to give her daughter medication to alleviate her pain, but her pleas went nowhere.
“I don’t know what to do with her. She just screams and screams,” said Goritko. “I don’t know who to turn to.”
While the US and some other Western countries are struggling to contain an opioid crisis caused, in part, by overprescription of narcotic analgesics, Russia has the opposite problem: Hundreds of thousands of cancer and other patients in severe pain are denied adequate pain relief due to a repressive drug control system, a stifling bureaucracy, a lack of proper training of medical professionals, and national attitudes toward pain. Many other countries struggle with similar issues as Russia, driven by the way in which international drug prohibition functions.
Remarkably, the difference between the fate of Alexey and Angelina is, in many ways, due to the groundbreaking work of one woman: Lidia Moniava, the founder of the Lighthouse children’s hospice, who together with a group of allies set out to help Russian children in pain and humanise healthcare. Her mission has faced huge obstacles and required colossal effort. And the work is far from over.
Moniava has a thin voice, big brown eyes and a penchant for wearing black dresses. She comes across as reserved and withdrawn, with a melancholic gaze that hints at the weight of responsibility, and grief, she carries on her shoulders.
Moniava, 33, was born into a family of Moscow intelligentsia, her father, a painter and her mother, a realtor. When Moniava was in high school, she started volunteering at a hospital for children with cancer, first exchanging letters with them, then, long before the COVID-19 pandemic descended on the world, putting on a protective gown and a face mask to visit them in the hospital ward to read, play and draw. Seeing some of her charges die was painful, Moniava said in one YouTube interview, but the time spent with them was so condensed, so full of life and love, more real than anything else she had experienced.
She studied journalism at Moscow State University and covered philanthropy for a city newspaper, but eventually Moniava realised that doing charity work was more fulfilling than writing about it, and her beat became her job.
A turning point came in 2008, when Moniava cared for Zhora Vinnikov, a 7-year-old boy who was suffering from neuroblastoma, she told VICE World News in an interview at the hospice. Zhora was declared incurable after one and a half years of treatment and was discharged from the hospital to die at home. This is when Moniava encountered the wall that she would later set out to break.
Russia has a highly punitive drug control system. In 2017, а quarter of Russia’s prison population of 519,000 people were convicted on drug-related charges, with more inmates serving time for drug use than for drug dealing, according to an expert analysis. The Soviet Union had strict anti-narcotics laws, but Russia tightened them further after drug use soared in the decade following the Soviet collapse in 1991. As part of that campaign, the government cracked down on medical narcotics, and cancer and other pain patients ended up paying the price.
Meanwhile, the anti-narcotics unit is itself plagued by corruption. This year, five police officers in Moscow were convicted of planting drugs on a prominent investigative reporter, and President Vladimir Putin has called for the creation of a special oversight body that would monitor the work of drug police. A quota system in which police officers are expected to report or solve a certain number of crimes in a given time period creates a motivation to fabricate cases. A recent study suggested that Russian police regularly manipulate the weight of seized narcotics, confiscating the exact amount needed to open a criminal case. Such a system also encourages drug police to go after doctors and nurses over technicalities in handling medical drugs.
“It’s much easier to fight drug abuse by jailing a doctor for two vials,” said Olga Osetrova, the head doctor of a hospice in the city of Samara on the Volga River. “We (doctors) aren’t going to run away: There is much less hassle with us, but you can open a case, you can solve it, you can write a report about it.”
The Interior Ministry did not return a request for comment.
Diederik Lohman, a longtime palliative care researcher and advocate who co-authored a major study on pain relief in the medical journal Lancet, said that tightening the screws on medical opioids was a frequent but ineffective tactic employed by governments around the world.
“In all the years that I’ve worked on this issue, I always see this: ‘We have a crisis of drug use. What are we going to do about it?’” Lohman said. “Well, the easiest thing we can do is put more restrictions on medical use of these medicines, even though in many of these cases it isn’t actually the medical system from which there is diversion [of narcotics].”
At the time when Zhora was ill, receiving an opioid prescription in Russia required four visits to various doctors, collecting countless forms, seals and signatures. If one of those doctors happened to be on vacation or on a long stretch of government holidays, which are common in Russia, the patient was condemned to agony. Neighbourhood government clinics could not prescribe narcotics to out-of-town patients or even to patients from a nearby district. Narcotics could only be prescribed for a maximum of five days, after which the patient or his relative had to repeat the process all over again.
Supply was also a big problem, with several crucial medications not registered in Russia. Clobazam, an antipsychotic drug used widely in the West to treat epileptic seizures, was unavailable in Russia, and parents had to look for other ways of procuring it. Some asked their friends traveling abroad to quietly bring back the medicine in their suitcase. Some mothers, unable to bear their children’s cries, purchased the drugs online. In 2019, Elena Bogolyubova went on the internet to order Frisium, the local brand name for clobazam, to relieve the seizures of her 10-year-old son, Misha, who had a rare, fatal disorder called Batten disease. When she came to the post office to receive the package, she was detained by law enforcement officers and questioned for seven hours. At home, Misha convulsed in pain and developed stomach bleeding, a side effect of his seizures. After a public outcry, Bogolyubova was released, but the drug was seized and Bogolyubova had to beg other mothers of similar children to share their supplies of Frisium with Misha.
Doctors handling narcotic or psychotropic drugs had an equally hard time. They faced fines, inspections and even criminal charges for accidentally breaking vials of morphine, for errors in bookkeeping and for prescribing to patients outside their districts. Medical personnel had to return the used vials and even used fentanyl patches to authorities, and some doctors found themselves running to the morgue to remove a patch from their patients’ bodies. In 2013, Alevtina Khorinyak, a grey-haired, 71-year-old physician in the Siberian city of Krasnoyarsk, went on trial after being charged with drug trafficking for writing out a prescription for tramadol for a dying cancer patient who wasn’t legally registered as a patient in her clinic. Prosecutors initially asked to sentence her to eight years in prison, but the court decided on a fine. The ruling caused a public uproar, and a year later it was overturned and the charges against Khoriniak were dropped. But the case sent shockwaves through the medical community and made Russian doctors even more fearful of prescribing narcotics.
There’s a cultural factor at play too. Whether it is a legacy of Soviet healthcare – which was not of a gentle nature – or the result of the country’s traumatic history, many Russians see hardship as a natural part of being human and endurance as an essential life skill. As a result, many doctors and nurses, as well as patients themselves, are not attuned to spotting and treating pain.
“We have a greater tolerance for suffering than your average person on planet Earth,” said Osetrova.
Russian writer Lyudmila Ulitskaya, a breast cancer survivor, recalled an episode that stunned her. Ulitskaya was in an Israeli clinic recovering from cancer surgery when a nurse asked her whether she was in any pain. Ulitskaya answered that she was but the pain was not too bad, so she could bear it. The nurse looked at her in shock and said that pain should not be tolerated. “I was astounded there and then,” she recounted. “It was a healthcare system that was organised in such a way that a person did not need to be in pain.”
Because of all that, managing pain was not a priority. Zhora’s parents spent two weeks knocking on doors, collecting the necessary paperwork to get a prescription for narcotics, while Zhora screamed in agony. The day he died, Moniava said in a public lecture, his clinic finally called to say that a prescription for morphine was ready.
At Zhora’s funeral, Moniava saw that he had bit his lips so hard from pain that they turned black. And Zhora’s parents were in a state of unimaginable grief after watching their child suffer that way. Moniava realised that Moscow needed a hospice so that no family would have to go through such an ordeal again.
“For that boy, Zhora, we couldn’t get pain relief,” Moniava told VICE World News. “And that’s how it all started.”
Moniava turned to her mentors, and they began brainstorming ways to help terminally ill children. One of the mentors was Vera Millionschikova, the founder of Moscow’s first adult hospice and the driving force behind Russia’s palliative care movement. The other one was Galina Chalikova, a philanthropist who ran a flagship foundation helping children with cancer.
Moniava and her colleagues wrote a letter petitioning the Moscow city government to open a hospice in the Russian capital. (Some Moscow hospitals had palliative care units on site, but at-home care was not provided.) The answer they received from the mayor’s top health official served as a vivid illustration of the state of palliative care in Russia at the time. “Over my dead body,” Moniava remembers the official saying. “Children should be getting better. Children should not be dying in Moscow,” he added. There was only one thing left to do: Moniava and her colleagues had to build the hospice themselves.
They started thinking of ideas for a name. When a doctor leads the parents of an ill child into his office and announces that their son or daughter cannot be saved, their world plunges into darkness. What can help them, give them some light? A lighthouse. “We wanted to send the parents a signal, that this is not the end, that there is a place where they can get help,” Moniava said in the same public lecture several years ago.
While Moniava searched for funds and a location for a future clinic, she decided that the hospice would start operating as a mobile team of doctors and nurses visiting patients in their homes. In 2013, Moniava found a three-room apartment in central Moscow, but she was 25 and looked so youthful that she had to send some older-looking friends to negotiate the rent. When the lease was signed, Moniava hired the first doctor, the first nurse, and the first psychologist, and the Lighthouse born. As they were settling in to the new office, Moniava and her team laughed when they realised that the previous tenants had used the apartment for sex work: A brochure they found in one of the cabinets advertised a nurse cosplay for 3,000 rubles (then about $100, or £72).
In interviews, Moniava often gets a version of the same question: Where does she find the strength and resolve to almost single-handedly fight the rigid, soulless government system and the audacity to think that she can actually succeed. Each time, Moniava seems puzzled by this question. For her, there is no other way.
“If there is a child in the apartment next door who is in pain, won’t you knock down all the walls to give him pain relief?” she said in one interview.
Moniava’s Lighthouse began operating, but it would take a long time and more unnecessary suffering before the walls would start crumbling.
On the 6th of February, 2014, one day before the grand opening ceremony of the 2014 Winter Olympics in Sochi, Vyacheslav Apanasenko, a 66-year-old rear admiral, was pacing around his apartment in Moscow, writhing in pain. He had advanced pancreatic cancer, and the pain was so severe that it could only be relieved with opioids. Apanasenko was counting the minutes until his wife, Irina, would come home from the doctor’s office and bring him morphine.
Apanasenko was a military man who believed in stoicism and endurance, and initially he was reluctant to use narcotic analgesics, his daughter Ekaterina Lokshina told VICE World News. But eventually the pain became unbearable, and he finally headed to his doctor to ask for opioids. The doctor balked, telling Apanasenko that it was not yet the time and that pain was a natural part of his illness.
“Have you seen your diagnosis? Of course you are in pain; you have cancer,” Lokshina recalled the doctor saying.
Eventually, the doctor agreed to put Apanasenko on tramadol, but that worked only for some time. As his pain intensified, his wife pleaded for stronger medicine and Apanasenko was prescribed fentanyl patches, which slowly release the synthetic opioid into the patient’s body. The patches offered greater relief, yet the experience was traumatising. His doctor showed up at his home and demanded to see the patch underneath Apanasenko’s clothes to ascertain that he hadn’t sold it on the black market or given it to his relatives. Apanasenko found this procedure highly humiliating.
“A person who has been a big boss for many years is not used to somebody coming up to him and unceremoniously pulling up his pajama shirt,” Lokshina said.
As the disease progressed, the pain grew worse, and the patches also stopped working. Apanasenko was in such agony that he couldn’t sleep at night and a hospice doctor recommended morphine. Irina headed to their neighbourhood outpatient clinic to get the prescription. For several hours, Irina was shuffled from one doctor to the next, waiting in long lines, collecting signatures and seals from various doctors, until she needed one last signature before she could head to the pharmacy and receive the medication. She knocked on that doctor’s door five minutes before the end of business hours, but, it turned out, the doctor had already left for the day.
“I remember she called me in the evening in horror and in tears because it was all just horrible,” Lokshina recalled, wiping tears from her eyes. ”They had her running from door to door, and in the end they didn’t give her anything.”
“They said, come in the morning, we will do everything,” Lokshina said of the doctors at Apanasenko’s clinic. “But when a person is in severe pain, how can he withstand it?”
When Irina came home empty-handed, Apansenko’s heart sank. He told her he’d hoped for at least one night without pain. He wished her good night in a voice that seemed distant and detached and went into his room. Irina worked on her computer late into the night.
In the bedroom, Apanasenko took out his handgun, a ceremonial gift for his long years of service in the navy, put it to his head and pulled the trigger. In a suicide note that Irina found on the kitchen table the next morning, Apanasenko said he was blaming the government and the health ministry for his death. Apanasenko died at the hospital four days later of the wound inflicted by the shot.
Lohman, the global palliative care expert, said he was struck by the similarity between the testimonies of people suffering from cancer pain and torture victims.
“Both would say, ‘I would do anything to make it stop,’” Lohman said. For a cancer patient, he continued, “if their doctor is unable to prescribe the medicines or unwilling to do so, you often see that people become suicidal because death is one sure way to get out of it.”
Apanasenko’s death, followed by a series of similar suicides, finally caused enough of a public outcry to make a dent in the system. Millionschikova, the palliative care crusader, had passed away, but her daughter Nyuta Federmesser, now 44, took over her mother’s hospice and her cause and doubled efforts in campaigning for pain relief.
That required making some uneasy choices.
Whether to join the government or work closely with it is a centuries-old dilemma for the opposition-minded Russian intelligentsia. Federmesser, a former English teacher, wrestled with that question and decided to set her reservations aside in the name of helping her patients. That has caused some heated debate in the liberal camp, with some accusing her of letting her honest name be used by a corrupt, authoritarian government. But Federmesser is undeterred, insisting she must serve her patients on their life’s final journey. “I am doing my job,” Federmesser said in a recent YouTube interview. “It’s a rational approach to solving the problems of people who don’t have time to wait until there is a change of power.” But the efforts came at a high personal cost, she added. “I didn’t know that one could absorb as much human pain and suffering as I did.”
In 2016, Federmesser joined the Moscow government to head the city’s palliative care department. In 2018, she publicly endorsed Moscow mayor Sergei Sobyanin, a close Putin ally, who has supported her hospice, for reelection. Soon after, she joined the All-Russia People’s Front, a national political organisation headed by Putin, which enabled her to push her reforms in faraway regions.
That also gave Federmesser direct access to President Putin, the single man without whom no reform stands a chance in today’s Russia. Year after year, in televised meetings at the Kremlin and in Putin’s annual national call-in shows, Federmesser pleaded with him to make opioids more accessible and to stop prosecuting doctors dispensing them.
The efforts worked. A raft of changes adopted in recent years have improved access to medical narcotics. One of the laws that eased those restrictions came to be known as Apanasenko’s law.
Today, Russian doctors are no longer required to return empty vials and patches. Patients can receive two-week supplies of drugs, palliative care doctors making house calls are allowed to carry narcotics in their medical bags, as well as pre-approved prescription sheets they can give to patients in pain right away. Doctors can now prescribe narcotic drugs to patients regardless of their legal address. Federal funding has increased for medical opioids and more drugs have become available, including Frisium, the drug that was needed so badly by Misha Bogolyubov, who died earlier this year under the care of the Lighthouse. And finally, in July, Putin signed a law that decriminalised clerical errors for doctors handling opioids.
Osetrova, the head of the Samara hospice, said that the situation has improved markedly over the past decade. For instance, in 2010 only 100 patients in her region were receiving narcotic medication; in 2020 there were 3,000 of them.
“Things have changed dramatically,” Osetrova said. “We’ve come out of complete darkness into the light. Yes, there are still shadows, but it’s daytime.”
In 2019, Moniava finally opened an in-patient facility on a piece of land granted to the hospice by the Moscow city government. A wealthy businessman paid to turn the old four-storey school building into a modern-day clinic. Today, the Lighthouse serves about 1,000 patients per year in Moscow and its suburbs, with a staff of about 440 people. The hospice operates on a budget of 1 billion rubles a year ($13.7 million or £9.8 million). Eighty percent of the funding comes from small donations from regular Russians, while the government provides the remaining 20 percent.
The nautical theme became central in how the clinic is decorated and furnished. Lighthouses, ships, sea creatures, and lifebuoys dot its hallways. Patients and their families stay not in rooms but in cabins, the swimming pool is called the sea, and a sign on the door of the hospice’s fundraising office reads “Pirate Ship.” When a child dies, the parents can honour their memory by hanging a small wooden ship on the fence that encloses the hospice’s park. Mark. Sasha. Sweet Tanya.
Asked how she copes with the constant grief and loss that her job entails — about 100 patients of the Lighthouse die each year – Moniava said she focuses on helping the child live a full life in the time he has left surrounded by loved ones and die with dignity and without pain.
“When somebody dies because they weren’t given medication or they weren’t given pain relief or they weren’t given the necessary equipment, it’s very hard to get over it because you feel guilty,” Moniava told VICE World News. “But if you were able to do everything possible for that person and he received everything he needed, he didn’t suffer, he wasn’t in pain, his family received support, it means we did a good job.”
“What is hard for us is not when a child dies but when a child dies in a bad way,” she added.
Some cancer patients, like Alexey, the boy with Snezhok, the white Bouchon Frise, come to the Lighthouse for end-of-life care. They receive pain medication, psychological help and, as is common practice in many hospices, can have a special wish fulfilled. In early December, for example, the hospice threw a New Year party for 12-year-old Valya Kharicheva because she wasn’t going to live long enough to celebrate the actual holiday. Patients also spend time at the hospice when doctors need to adjust their medication or train parents in how to care for their children at home after they’re discharged from the hospital. The hospice also runs a “social time-out” programme, where a child and his family can spend up to two weeks a year at the clinic, receiving medical and social care while the parents get a reprieve from the grueling work that taking care of such children requires.
But the biggest bulk of the hospice’s work is its mobile team of doctors, nurses, psychologists, play therapists, nannies and social workers who care for the patients in their homes.
One Monday in July, Anna Lorens, a paediatrician at the Lighthouse, drove out to an apartment building on the eastern edge of Moscow. She rode the elevator to the 13th floor to visit Arseny Shestakov, an 8-year-old boy with severe cerebral palsy and epilepsy. Arseny lay on a special medical bed provided by the hospice, underneath family photos and a big red heart that his 2-year-old brother Semyon and his father drew on the wallpaper one evening as a sign of love for their mother and wife, Elizaveta Shestakova.
Lorens listened to Areseny’s lungs, examined his stomach for signs of constipation, checked his ears and his oxygen saturation, his tracheostomy and gastrostomy tubes. Shestakova stood next to the bed, holding her newborn son, Grisha, while Semyon ran around the room, enjoying the commotion. Arseny was calm and alert. On his right thigh was a white fentanyl patch.
Two years ago, Arseny’s condition had worsened dramatically. He was in severe pain, refused to feed, lost weight and didn’t sleep at night, waking up Semyon and his parents, who all slept in the same room. Shestakova’s elderly grandmother occupied the other room in the small apartment. Arseny screamed so hard that Shestakova and her husband, Dmitry, started taking turns sleeping in the bedroom with Semyon for several hours while the other one cradled Arseny in the kitchen, trying to soothe his cries.
“He screamed. There was nothing I could do about it. He just lay and screamed. It was hell,” Shestakova said.
Everything changed when Shestakova learned about the Lighthouse and turned to them for help. As soon as Arseny became Lorens’ patient, she got to work on treating his pain. First, she tried non-narcotic painkillers, then she started him on tramadol, which helped him for four months. But when the pain returned, she prescribed him fentanyl patches.
Once Arseny’s pain went away, the child flourished, Shestakova said. He gained weight, became calm and started sleeping at night. Arseny is non-verbal, but Shestakova said he became much more responsive to the outside world: He smiles and interacts with his parents and Semyon, who likes to pretend to feed his brother with kefir, a fermented milk drink popular in Russia.
“When we took care of the seizures and the pain syndrome, when we replenished his protein deficit, his body stabilised and the child opened up to the world,” Lorens said. “He stopped suffering, and that brought peace to the whole family and to the child.”
While Lorens was checking up on Arseny in Moscow, Angelina Goritko, who has a condition similar to Arseny’s, lay in her bed in her Stavropol apartment on a pink sheet covered with white stars, screaming in pain.
Wearing a purple top and a child’s nappy, Angelina shook uncontrollably, her mouth opening wide and her tongue sticking out with each new seizure. Stifled by her tracheostomy tube, the cries came out as moans and grunts that were terrifying to hear.
Angelina was born two months premature and was diagnosed with cerebral palsy and epilepsy. She has the developmental level of a one-year-old but is an open and joyful child who responds well to the care and communication of her loved ones. Two years ago, Angelina fell ill with pneumonia and spent several months at the hospital, her weight halving from 25kg to just 12. The doctors installed a tracheostomy tube to help her breathe and a gastrostomy tube to feed her.
While at the hospital, Angelina also developed severe pain. She shouted at the top of her voice, and when she became too exhausted to scream, she hunched up in agony. “She screamed so hard that she turned deep red. She twisted and writhed. I didn’t know what to do with her,” said her mother, Anastasia Goritko.
The doctors treating Angelina said they could not help. “I was told, ‘This is a very ill child; there is nothing that can be done’,” Goritko added.
But Goritko didn’t take that for an answer. She pressed doctors to find what was causing her daughter so much pain. Was it her teeth, her head, her stomach? Finally, she was told that Angelina was suffering from hip displacement, a common condition for children with cerebral palsy in which tight muscles force the hip out of its socket. That could be the cause of Angelina’s intense pain, the doctors said.
But when Angelina was discharged from the hospital, she wasn’t given any pain medication.
Goritko, an energetic blonde who works as a manager at a billiards club, rents a two-room flat in an apartment building on the outskirts of Stavropol. She is raising Angelina with the help of her mother, Svetlana, a retired cement factory worker. Angelina’s father is not present in her life and provides very little help financially. Goritko supplements her income by selling home-dried tomatoes, and their sweet smell fills the air in her apartment.
Angelina had a lull in her pain over last summer and autumn, but the pain returned with new intensity in December. Again, the doctors said they could not help.
“I am ready to let her go when the time comes, but I cannot accept that she is in pain and I am not doing anything about it,” Goritko told VICE World News, as she cradled Angelina on her lap, gently wiping saliva from her mouth and neck and soothing her if Angelina got restless.
Goritko went through several psychological phases as she cared for her daughter. There were times when she was so consumed by fear that Angelina would fall asleep and never wake up that she had panic attacks. Eventually, Goritko made her peace with Angelina’s condition and even started a WhatsApp support group for several dozen local mothers with palliative children similar to Angelina, where she consults them on how to fight government bureaucracy to get medical and social services for their children and also counsels them in moments of grief and despair.
In early July this year, Angelina was examined by a team of six doctors at the region’s main paediatric hospital: a neurologist, an orthopedist, a pulmonologist, an internist, an otolaryngologist and an anaesthesiologist.
“They saw the child, they looked at the X-rays, they themselves told me, ‘You cannot imagine how painful this is’. And I said, ‘Then do something about it!’”
According to Goritko, the doctors promised to prescribe Angelina pain medication, but that never happened.
Contacted by VICE World News, the hospital refused to comment on Angelina’s case, citing patient privacy laws. Natalia Tarnovskaya, the spokesperson for the regional health ministry that oversees the hospital and the neighbourhood clinic where Angelina is being treated, defended her care.
“There are no objective reasons to sound the alarm and to say that the child is not receiving the care that she needs,” Tarnovskaya said. “We are doing everything possible.”
But Yuri Sukhanov, the head of the city-run First Moscow Children’s Hospice, examined a video of one of Angelina’s seizures, recorded by Goritko, and disagreed.
“I see that the child is in pain, that something is hurting and quite a lot,” Sukhanov said. “Something must be done. She needs medication for pain.”
Dr David Korones, professor of pediatrics and chief of pediatric palliative care at the University of Rochester Medical Center, watched the video and said he would consider prescribing opioids for a patient like Angelina.
In such non-verbal patients, doctors can use various measurements to assess the child’s pain, Korones said. “You look at facial expression, whether there is a grimace, a quivering of the chin, a curling of the legs, shaking the way she is – she really has all of those things. I am sure she would score high on that scale,” he said.
“It’s a very basic question,” Korones said. “It kind of speaks to the core of our humanity. Nobody should suffer from pain if they don’t have to, and nobody should have to. Pain is controllable in the vast majority of kids. And for a helpless child to be crying in pain, I don’t think we should ever say there is nothing more we can do.”
While Russia has made significant progress in pain management since the death of Apanasenko, the rear admiral, as Angelina’s case demonstrates, it is nowhere near enough.
Russia’s Health Ministry did not provide statistics on pain relief in Russia, but VERA Hospice Charity Fund, Russia’s leading hospice support and advocacy organisation, headed by Federmesser, estimates that about a quarter of the country’s 1.3 million palliative patients suffer without pain relief. In the 2017 Lancet study, researchers estimated that only 8 percent of Russian patients in need of narcotic analgesics were receiving the drugs. And Russia ranks 84th out of 213 governments in terms of availability of opioids for pain management, according to the United Nations drug control agency.
But while the federal government has done a lot to ease the regulations and make narcotics available to patients, it takes a very long time for the new directives to be implemented and embraced in Russia’s far-flung provinces.
Anastasia Zhdanova, a lawyer with the VERA fund, visits palliative centres across the country as part of her work for All-Russia People’s Front. She regularly sees clinics that have no narcotic drugs in stock on site. When she asks the doctors how they help patients in pain, she hears a common refrain. “In all the regions, throughout the entire country,” she said, “the most frequent phrase we hear is ‘We make do’.”
Zhdanova recalls walking into a palliative care home in the village of Gastello on the island of Sakhalin in the Far East and hearing moans so loud that they resonated throughout the entire building. It was a terminally ill cancer patient who was in immense pain, but the clinic did not have any opioids. The doctors inspecting the site together with Zhdanova immediately wrote out a prescription for morphine, but the drug had to be delivered from another city, which further prolonged the patient’s suffering.
Zhdanova said some rural clinics restock their supplies of narcotics only once a month, when officials can dispatch armed law enforcement officers to accompany the delivery. What happens if a patient needs opioids before the scheduled delivery?
“You are out of luck. You wait,” Zhdanova said with a sigh. “Sometimes you don’t live long enough to see it come.”
In some places, local health officials put in place their own rules. In Livadia, another remote community in the Far East, doctors are not allowed to prescribe opioids. If a patient requires narcotics, the head nurse at the local clinic must travel to the nearby regional centre of Nakhodka, where only the city’s chief doctor is authorised to dispense the drugs, and then fill the prescription at the local pharmacy. Because of roadwork and winter snowstorms, the trip can take up to three hours one way. With clinics chronically understaffed, it is a big question if the nurse will make the trip. “There is no guarantee that they won’t try to ‘make do’ without narcotics,” Zhdanova said.
And although thanks to the recently passed law, doctors no longer face criminal charges for honest mistakes in handling narcotics, they’re still often subjected to inspections, fines and stifling bureaucracy, a level of oversight that the medical community believes to be excessive.
“They walk into a medical organisation with the words ‘Everybody has violations, and we will find them here as well’,” said Zhdanova. “They act quite aggressively, they presume that medical workers are guilty of violations, they go through the nurses’ personal belongings. For medical workers, it’s a huge stress.”
Last fall, they came for the Lighthouse.
When COVID reached Russia in the spring of 2020, Moniava became a foster parent to Kolya, a severely disabled 12-year-old boy from an overcrowded Moscow orphanage, where, she feared, he was likely to die of coronavirus. Once confined to his bed and so undernourished that he wore the clothes of a 7-year-old and still had baby teeth, Kolya discovered a completely new life in Moniava’s home. He received a state-of-the art wheelchair, bright yellow boots, a fancy haircut. He had his ear pierced, and he put on 15 pounds. He flew on a helicopter, started attending school, swam in a swimming pool, and appeared on the pages of the Russian edition of Harper’s Bazaar. He discovered the taste of mango. He started smiling.
Moniava documented her life with Kolya on Facebook and Instagram, and while many applauded her, some called her work a publicity stunt and said she was being reckless with Kolya. Like Arseny, Kolya was receiving fentanyl patches for his seizures, and someone complained to the police that Moniava was overmedicating him.
Twenty-seven days after the Lighthouse received a government licence to dispense narcotics inside the clinic, four police officers showed up without warning and started sifting through documents and counting vials. All the medicines were accounted for, but the police found mistakes in the way the books were kept: Some of the pages were not properly bound and numbered, some lacked a signature or a seal. The police also found that a nurse had moved some medications from one safe to another but did not immediately reflect the transfer in the books.
Authorities filed administrative charges and the Lighthouse faced a fine of up to 400,000 rubles ($5,500 or £4,000) or a three-month suspension of operations. In early December, journalists gathered outside a Moscow court that was hearing the case. A woman whose son had recently died of cancer under the care of the hospice stood shivering in the freezing cold and holding a painting of a lighthouse in a sign of support. Inside the courthouse, Moniava, wearing one of her black dresses and a black face mask, stood impassively as the judge read out the verdict: a fine of 200,000 rubles ($2,700 or £2,000), an equivalent of the monthly salary of several hospice employees.
After a public outcry, the decision was overturned and the case against the hospice was closed, but Moniava was shaken by the incident. She said police should be chasing criminals instead of going after doctors caring for terminally ill children.
“It’s much easier to investigate and catch a scared nurse than a real drug dealer on the street,” Moniava said.
Moniava, a frequent attendee of opposition protests, also wrestled with the dilemma of how to reconcile her work with the government healthcare system and her own liberal values. Would the government stop funding her hospice if she continues attending street protests? What would happen to Kolya if she were arrested at one, as happened to a hospice nurse earlier this year?
In the end, Moniava found a delicate compromise. She studied Russian legislation and discovered a law that protects her from being detained during a protest, as the guardian mother of a minor child. Moniava printed out a copy of that law to demonstrate to the police, if need be, and she intends to continue attending opposition rallies, she said.
In July, Moniava and Kolya appeared on a popular home-renovation TV show that remodelled the tiny 29-square-meter (312-square-foot) studio that Moniava had received several years earlier as a prize in a philanthropy contest. Wearing a black dress yet again, she rolled Kolya into the fancy new space, which was redesigned to accommodate Kolya’s wheelchair and his medical bed but also left some space for Moniava to work and socialise. Once again, Moniava was knocking down walls: Kolya, wearing fancy yellow Crocs, was shown on national television, and the host talked about special needs children, ramps and bathrooms accessible for people in wheelchairs.
In Stavropol, after receiving multiple requests for comment from VICE World News and after the intervention of Sukhanov, the senior palliative doctor in Moscow, local health officials said they would look into Angelina’s case. Several days later, after more than a year of pleading with the doctors, Anastasia Goritko finally received a prescription for tramadol for her daughter.
The evening in August when Goritko gave Angelina the first injection was a memorable one. For the first time in many long months, Angelina did not scream, twist or writhe when her mother gave her a bath. Then Gorikto shampooed and dried her hair and put her to bed, and the girl slept peacefully through the night. “Can you believe what time she woke up?” Goritko said with a big smile. “At 7AM!”
VICE World News caught up with Goritko several days later by video call as she was preparing Angelina for sleep. The girl lay on her mother’s bed, her head resting on a green sheet dotted with Dalmatian puppies from the Disney film. Angelina grinned broadly, something she hadn’t done in a long time, and even giggled soundlessly when her mother spoke to her. After Angelina fell asleep, Goritko moved to the kitchen to finish making another batch of dried tomatoes.
Looking tired, her hair pulled back in a ponytail, Goritko said she was relieved that Angelina was feeling better but also utterly depleted by the suffering and strain of the past year.
“I know that my child will not go to school. All I am asking is that she doesn’t feel pain. I am not asking for anything else,” Goritko said. “But nobody wants to do anything — until you shout, until you complain, until you yell, until you become hysterical.”
“They could have done a lot more for my child.”
Editor’s Note: Alexey Veselov died of leukaemia earlier this month. He passed away at the Lighthouse, surrounded by his parents, brother and Snezhok, his dog. Before Alexey’s death, the hospice brought in a master chef who held an Italian pizza cooking class, Alexey’s last wish.
Maria Danilova is a journalist and writer based in Washington D.C. This article was written with support from New York University’s Matthew Power Literary Reporting Award.