Visitors in a hallway after the opening of Tatarstan's first hospice for children in Kazan, which is to become the second in-patient children's hospice in Russia.Maxim Bogodvid / RIA Novosti
A children's hospice which opened in 2010 in St. Petersburg has become the first institution in Russia to provide care for terminally ill (palliative) children.
"Fifteen years ago we visited a girl named Nastya. She was extremely ill but was very courageous," said Archpriest Alexander Tkachenko, general director of the hospice. "Once she told us what a cozy hospice should be like. Everything we did in the following years was to realize her desire."
The hospice has the feel of a big comfortable house. It has learning facilities and psychotherapeutic rooms where volunteers work with the children. In the basement there is a pool with a hydro massage. Generally, children with serious illnesses are not allowed to swim, explained Tkachenko.
"I wanted to give them this possibility here. People disagreed with me, telling me that children come to a hospice to die, not swim in a pool,” he said. “I argued: In a hospice children must live and feel the joy of living.
“Then I asked if it would be possible to build a church in the hospice. The official said that a church would be useful. I then said that I would need a bath for baptism. In the hospice's jargon this pool is called ‘a tub for preserving holy water with hydro massage’."
St. Petersburg invested around 80 million rubles ($1.27 million) in the hospice, which is now the most expensive institution in Russia, in terms of resources spent on one bed. There are now 23 beds in the institution. The hospice's outreach service takes care of another 300 children in St. Petersburg.
A total of 89 million rubles ($1.4 million) is needed annually to maintain the hospice. The government gives 70 million rubles ($1.11 million) and the rest comes from charity organizations.
Tkachenko believes that palliative care cannot be provided only by charity funds: "Charity organizations can assist the government, but they can't replace the government," he said.
There are around 200,000 children in Russia diagnosed with terminal ailments, in need of palliative care, but very few hospices. Over the past two years, palliative care departments have been opened in association with children's hospitals, to supplement those resources. Perhaps not as cozy and warm as the children's hospice in St. Petersburg, they can take the place of a hospice.
It is important that parents can be with their children round the clock in palliative care departments, unlike most reanimation centres. However, because of an insufficient number of hospices, many terminally ill children are still moved to the reanimation centres in normal hospitals, in which visiting time is limited and, in some cases, relatives are not allowed.
"Palliative children may spend months, even years in reanimation and parents are allowed to see them for only half an hour. The children die in loneliness and the parents can't forgive themselves afterward," said Yelena Martyanova, a specialist from the Vera Hospice Charity Foundation.
The Russian government recently adopted a plan, called an analgesic ‘road map’, to "increase accessibility to drugs and psychotropic substances for medical purposes." The plan should partially ease the problems of terminally ill patients by increasing the accessibility and quality of analgesics, expanding the list of analgesic drugs and simplifying the prescription procedure.
"Expanding the list of the registered analgesic drugs in Russia is an important step, but if doctors don't prescribe them, it will be useless," explained Nyuta Federmesser, president of the Vera Hospice Charity Foundation. "That is why the ‘road map,’ together with increasing the number of accessible analgesic drugs, also mentions the need to train doctors."
Reducing pain is the basis for developing palliative assistance. But many doctors in Russia still fear prescribing opioid analgesics, and many do not know how to use such drugs for palliative patients.
Federmesser notes that in the West, many painful conditions found in palliative patients are treated with higher dosages of morphine than in Russia. Morphine is prescribed in small doses or is not prescribed at all in Russia. Parents of dying children are often told: "Why do you want to get him hooked on morphine? He'll become a drug addict." The parents listen to the doctor and the child suffers in pain.
Also, there are hardly any palliative care doctors in Russia.
"We don't even have such a professional category," said Federmesser. "The 'road map' indicates that in 2017, the category will appear, which means that educational institutions will start teaching palliative medicine."
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