Staunton, October 15 – Few things are more horrific than watching a child with an incurable illness suffer, and few things are more unforgiveable than a medical system which is not organized to ensure that at least their suffering is reduced as much as possible. Tragically, that is not the kind of system that is operating in Russia today.
On October 14, Novaya Gazeta‘s Natalya Chernova said that many in Russia and in the Russian medical system do not even know what palliative care is and that only eleven of the 280,000 young Russians suffering from incurable illnesses are receiving its benefits at home as is best.
This situation does not appear likely to change anytime soon. Few Russians even know what palliative care is, doctors don’t specialize in what they view as a low prestige field, and the health ministry “cynically” says that there is no reason to waste resources on children who are going to die anyway, the Novaya Gazeta journalist says.
The horrific figures and the situation they reflect, Chernova continues, are contained in a new report by the Childhood Palliative Foundation, a group that has been pressing for change but that faces an uphill fight. Parliamentarians can move fast to compensate an oligarch like Rotenberg, but they feel no urgency to help sick children.
But even when the foundation has succeeded in the legislature – three years ago the Duma included a section on palliative care in the Russian health law – it has not been able to translate that language into action, and hundreds of thousands of young Russians continue to suffer as a result.
As Chernova puts it, “In Russia, no program for providing palliative care for children has been adopted, no strategy for its development has been worked out, no standards have been set for its provision, no list of services has been developed, no clinical recommendations for specialists have been confirmed, and no issues of access have been resolved.”
In every case, the operative word, she says, is “no.”
The foundation has succeeded in organizing volunteer services in Moscow, but beyond the ring road, there is almost nothing. It isn’t because there are no sick children there, although some officials claim that, Chernova says, but rather because people don’t know what could be done and officials, already short of money, aren’t prepared to commit funds to this area.
And when there is something organized by doctors, it almost always involves the dedication of hospital beds for such children, the very worst arrangement for youngsters who are facing death and who are much better off if they can remain at home. No one is helping Russian parents keep their children at home and as comfortable as possible.
There is one bright spot in this sad landscape, the Moscow journalist says. When Admiral Apanasenko committed suicide because he couldn’t get the morphine he needed to control pain, a Russian pharmaceutical company began produced morphine in doses appropriate for children in tablet form. Clinical tests are now being run, and doctors hope they won’t be prolonged.
Unfortunately, Chernov says, there is very little public pressure on the government to take action because there is very little knowledge among Russians about this vital field of medicine. And she concludes with obvious bitterness that when the palliative care report was released, “only six journalists showed up.”