A good death

Kremlin and St. Basil's

(Moscow News – themoscownews.com – Natalia Antonova – October 15, 2012) For terminally ill patients in Russia, dying with dignity is often not an option, as many doctors still reject the notion that improving the quality of life of a dying patient must be prioritized. Yet more and more people, despairing at seeing loved ones suffer needlessly, have called for greater access to both palliative medicine and hospice care.

“My mother died of cancer in the 1990s,” Olga Malinova, a retired teacher, told The Moscow News.  “They treated her brutally at our local hospital, so we took her back to die at home, but she was in too much pain and drugs were hard to come by due to bureaucratic matters; it was a tragedy for all of us.”

After watching her mother pass away in agony, Malinova faced the possibility that her father, who also developed cancer, would also suffer. “We discussed his options with his doctor, and I borrowed money so that we could ensure better care for him,” she said.

But Malinova’s elderly father was found dead at the family dacha a few months after his diagnosis. “His death was ruled accidental, but everything that led up to it led me to believe that he had seen her suffering, was depressed, and decided that he wanted to get it all over with,” she said.

Today, Malinova thinks that too many Russians still see death as something awful and terrible. “But death is a fact of life,” she said. “And once you accept that, you begin to understand that the concept of a good death deserves to exist.”

Changing attitudes

Russia’s first modern hospice opened in 1990 in St. Petersburg. This was followed by the opening of Moscow’s first hospice in 1994. Today, both private and state-care facilities cater to the needs of dying patients in Moscow.

“It’s better for a terminally ill person to die at home rather than at a special facility ­ and hospice care usually involves getting pain medication for use at home,” Sergei Sokolov, an anesthesiologist who works in a country hospital in the Vladimir region, told The Moscow News.

According to Sokolov, lack of good end-of-life care is compounded by callous relatives. “You can get good care even out in the country, the doctors here understand what it takes to make a cancer patient comfortable, for example,” he said. “But family members themselves often don’t take an interest in their dying loved ones, which is a bigger problem.”

Sokolov believes that large urban centers foster estrangement. “Look at how families live in the North Caucasus ­ the idea of abandoning a dying relative is virtually unheard of,” he said. “But in Moscow, attitudes are different ­ and the fact that Moscow doesn’t represent all of Russia is a good thing.”

Sokolov believes that the horror stories of patients dying without pain medication that routinely show up in the press ­ such as with the recent case of bard Ada Yakusheva, who, it was revealed, was barred from receiving pain medication until the day before her death due to bureaucratic matters ­ can be traced to human resources issues. “Russia has a catastrophic shortage of doctors and nurses,” he said. “Many people in the profession feel as though they are not required to put in any effort ­ after all, it’s not like anyone is coming in to replace them.”

Moscow’s first hospice

Since 1994, Moscow’s original hospice, referred to officially as the Perviy Moskovsky Hospice, has cared for dying patients ­ as well as provided their loved ones with much-needed support. It’s a cozy place, staffed by people who have a habit of greeting visitors warmly and looking them in the eye ­ a rare sight for a Moscow medical establishment.

Nyuta Federmesser, daughter of hospice founder of Vera Millionshchikova and the head of the Vera Fund, which specializes in aiding hospices, believes that the Perviy Moskovsky Hospice is an oasis that highlights the fact that hospice care is as-of-yet nderdeveloped in Russia.

Among the chief problems of hospice care in Russia is the extremely rigid bureaucratic procedures that surround the dispensation of pain medication, which is especially needed for stage IV cancer patients. The Vera Fund is working with legislators on improving access to pain medication in Russia, but the process has been a long and arduous one so far, Federmesser confessed.

Yet a dignified death is not just a matter of access to adequate medication ­ it’s also a matter of awareness and preparedness.
“Moscow is all about consumerism and the good life,” Federmesser said. “But no matter how much money you have, when your 87-year-old mother starts dying… you will have to deal with the ignorance and fear of medical personnel, who are untrained in the matter of end-of-life care.”

Her interactions with Moscow doctors have convinced Federmesser that there is a proverbial light at the end of the tunnel. “There are good administrators who are raising the bar at Moscow’s hospitals,” she said. “This is now a city where you can get good treatment ­ it’s just not a city where there is room to die [well], as of yet.”

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