Hospice Marks Children’s Day
Published: May 30, 2012 (Issue # 1710)
A charity event being held around the city on June 1 will raise funds for St. Petersburg Children’s Hospice (above).
As International Children’s Day is celebrated around the world on June 1, a charity event aimed at drawing attention to one of the most sobering social topics, child mortality, will be held in the city.
On this day, people are encouraged make a donation to St. Petersburg Children’s Hospice and in exchange receive a white paper flower as a sign of hope and new life. Organizers insist, however, that while raising money for the organization is important, the main idea of the event is to raise awareness of the issue.
The idea for Friday’s drive came from a charity event held in Russia before the 1917 Revolution. Founded by Tsar Nicholas II and first held in 1911, the event was organized to raise money for severely ill patients by allowing people to buy a white flower at a price they set themselves.
The paper flowers for this year’s event were made by elementary school students as part of a “lesson of goodwill” that took place on May 18 in every school in St. Petersburg.
“The fact that children made these flowers means that thousands of pupils are now aware of who they made them for and why. That is important,” said Pavel Krupnik, executive director of the St. Petersburg Children’s Hospice.
The St. Petersburg Children’s Hospice opened in 2003, funded by private donations as a medical service that visited people at home and became the first hospice service for children in Russia. Seven years later, in June 2010, it transformed into a full-fledged in-patient department and state medical institution. But its main building, situated in the city’s Kurakina Dacha Park, doesn’t look like a standard medical establishment inside or out.
“The idea of the hospice originated when archpriest Alexander Tkachenko — the founder of the hospice — saw a children’s hospice in America. It looked like a dream house or Disneyland. He wanted to create something similar in Russia,” said Krupnik.
Children under the age of 18 years old with congenital disorders and terminal illnesses including cancer, neurological diseases and others live at the hospice. At the moment, the hospice has more than 200 patients. It provides 24-hour care for 18 children, day care for about 10 children, and home care for the rest. The youngest patient is only two months old — a girl whose parents declined to take her home from the hospital because she was born with a terminal illness.
The hospice sees itself as an end-stage service establishment within the palliative sector of medicine.
The idea is not to have children die in a hospital, but to relieve pain and provide them with psychological and emotional care, thereby improving the quality of their lives. Providing the parents of sick children with psychological care, including after their child dies, is another crucial part of the service.
Russia’s palliative care legislation was created more than 20 years after the country’s first hospice — a hospice for adults, also in St. Petersburg — was founded. Under the federal law on health protection passed on Nov. 21, 2011, palliative care is considered to be a separate type of medical care and is free to those who use it. The law helped to bring the mandate concerning the fundamentals of palliative care for children to the forefront. It also helped set basic standards for children’s hospices and address problems such as supplying hospitals with necessary medications.
“There is always enough medication for hospice-based patients, as it is provided by the state, whereas the situation with home-based children can be challenging,” said Olga Shargorodskaya, head of the hospice’s social services department.
“Some time ago, the hospice suffered a shortage of medication. Of course the funds allocated by City Hall are not enough to cover what we need because they are provided according to the norms of an ordinary hospital. The hospice wouldn’t be able to afford medication, food and care without additional funds raised by charity events and donated by individuals,” Krupnik said.
An affiliate of the hospice was built on the outskirts of the city in Lakhta in 2011, and now functions funded solely by donations. Children from other regions stay there between operations and the primary treatment they receive at the hospital.
“For now, most donations come from businessmen,” said Krupnik. “The majority of them have never visited the hospice. They are willing to help, but they don’t want to see children suffer. Psychologically, it’s very difficult.”
The staff are one of the most important elements of the hospice, as its members not only care for the children, but also work to create a homely atmosphere.
“At one point we had a high personnel turnover, especially among young staff and volunteers,” said Krupnik. “They would care for a child, and then he or she would die. Then that employee would leave and new people would come. But if people stay at the hospice for at least half a year, they usually end up staying for a long time. But it’s difficult to deal with the fact that these children will die,” he said.
Now the hospice plans to become a training ground for specialists from other regions of Russia aiming to work in the sphere of palliative care. Consultations for those looking to open a hospice in their region are already being held.
The hospice always needs volunteers: Those who are able to spend some time with the children, read to them or play games with them.
Some 600 volunteers, including students from St. Petersburg State Medical University will volunteer at the June 1 event. From 11 a.m. to 8 p.m. the students will hand out flowers at 100 locations around the city, primarily near subway stations. All volunteers will be wearing medical uniforms and one person in each group will wear a surgical apron with the image of a flower depicted on it. In addition, events such as concerts and master classes on making paper flowers will be held near Gostiny Dvor metro station and at the Bukvoyed bookstore at 46 Nevsky Prospekt.
“I understand that not everyone can help the hospice; some of them choose to give money to children who can be saved, but on June 1 it is impossible to ignore the issue of dying children,” said Krupnik.