Russian ICUs: death behind closed doors

(Moscow News – themoscownews.com – Natalia Antonova – August 19, 2013) It’s a fact of life that most Russians put up with and most expats are shocked by ­ virtually every patient in intensive care is completely cut off from the world: no visitors, no cellphones, and hardly any exceptions. The rules are so strict that even parents of small children are routinely denied access when they want to say goodbye to a dying child.

Every once in a while, the parent of an ill child will make an emotional appeal to the media about lack of visitation rights, an appeal that is usually followed by healthcare officials insisting that such restrictions are fair.

Among the reasons cited by officials in support of isolating patients in intensive care units (ICUs), sanitation rules play a key role. Unlike in the West, individual hospital policy in Russia ­ which is what ultimately determines visitation rules ­ usually equates ICUs with operating theaters.

Due to a lack of definitive federal legislation on the rights of both ICU patients and their relatives, the rules are often enforced arbitrarily.

Sitting in her cheerful kitchen overlooking a dense forest, Marina Desnitskaya, a resident of the Zheleznodorozhny suburb in the Moscow region, recalled the last time she saw her eldest son in the intensive care unit of the local hospital.

“A sympathetic doctor let me in to see Nikita on a Saturday [last month] ­ even though he was sedated, he responded to my presence, even the doctor himself pointed this out to me,” Desnitskaya said. “The following Monday, I was barred from seeing him by another doctor; we were told, very harshly, that he was dying, and that we had no business being near him.”

Nikita, a young cancer patient whose cherubic photos remain a distinct presence in the family apartment, passed away in the hospital the very next day. Not a single family member was allowed to be at his side.

“At one point, my sister Irina actually got down on her knees in front of one of the doctors there, asking for more humane treatment, but this only made him lash out at her some more,” Desnitskaya said. “The ironic thing was that it was the morgue staff at the hospital that was most sympathetic to our plight, who understood that we had lost our child ­ and weren’t even allowed to say goodbye.”

The head of the ICU department at Zheleznodorozhny Central Hospital, Inna Demyokhina, is one of the staff members directly accused by Desnitskaya of cruel treatment of her family.

In a phone conversation with The Moscow News, Demyokhina denied any wrongdoing and blamed cramped working conditions and sanitation norms for barring visitors from the ICU.

Lidia Moniava ­ manager of the children’s program at the Vera Fund, which specializes in supporting Russian hospices, and an outspoken critic of ICU policy in Russia ­ has particular disdain for popular excuses for restricting ICU access, including the argument that intensive care facilities are too cramped for visitors.

“Look at the National Health Service in Britain ­ their facilities are also often cramped,” Moniava said. “[But] no one over there would even think of barring a mother from seeing her sick child.”

For her part, Demyokhina claimed that Desnitskaya had been allowed to visit her son, but that the staff objected to Desnitskaya taking pictures of the boy. When asked whether transparency when it came to working conditions of the ICU was a bad thing, Demyokhina backtracked and said that her comments were being misrepresented.

“It is very wrong of you to ask me these questions and try to put me on the spot like that,” Demyokhina told The Moscow News shortly before the line went dead.

Families as ‘obstacles’

In a July interview with Moskovskiye Novosti, Leonid Pechatnikov, Moscow’s acting deputy mayor for social development and a medical professional, insisted that visitation restrictions at ICUs are fair.

“If a patient is undergoing intensive treatment [as opposed to dying], it is reasonable to bar any visitors,” Pechatnikov said. “Or else tomorrow the relatives of the patient will say, ‘Let me into the operating theater, I must see whether the surgeon is performing surgery correctly!'”

The idea that if you give patients an inch, they will take a mile, is pervasive among Russian doctors ­ but critics say it is unreasonable.

“These suspicions directed at both patients and their relatives are actually born of a very Soviet, father-knows-best mentality,” the Vera Fund’s Moniava said. “It is the same mentality that assumes that children are better off living in state-run facilities as opposed to with their families.”

‘Just another indignity’

Moniava believes that the situation will improve when Russians begin to consistently complain about visitation rights. “Until there is a steady stream of complaints, healthcare officials will not realize that there is a genuine problem,” she said.

One of those people who didn’t complain was middle-aged Muscovite Marina Smirnova, whose elderly father died in intensive care a few years ago.

“I knew he didn’t want to die alone ­ and now I think about it every day,” Smirnova said. “I have depression now because of this, I’m seeing a psychologist, because it’s something I can’t let go of.”

Still, Smirnova couldn’t find it in herself to lodge an official complaint. “Part of the reason is that I felt sorry for his doctors ­ they were always so stressed out, so harried, so bitter,” she said. “But I also just don’t think that we have a complaint culture in Russia, [because] we’re used to being treated horribly by the system, and being barred from saying a few final words to a loved one is just another indignity to put up with.”

Communication and chaos

Palliative care specialist Anna Sonkina-Dorman has seen a lot of suffering and death ­ and believes that Russian doctors require additional training and a better working environment, so that they may handle difficult cases more sensitively.

“[Doctors] have to be trained in communication,” Sonkina-Dorman told The Moscow News in an e-mailed comment. “We must [also] push for the creation of professional associations and insist on decent working conditions for doctors and nurses.”

Sonkina-Dorman’s sentiments were echoed by Ivan, a Moscow intensive care specialist who asked that his last name not be used for fear of retribution from his bosses.

“The harsh truth is that nobody prioritizes communication training for doctors in Russia, which makes a hard job that much harder,” Ivan said. “This is why it is easier for a medical professional to completely shut out the patients’ relatives, to say, ‘No, you can’t visit, go away,’ and so on.”

According to Ivan, communication training must go hand-in-hand with an official visitation policy for all Russian hospitals. “Right now, heads of departments write their own rules, which are never set in stone to begin with, depending on who’s got the shift,” he said. “A lot of the doctors are just as sick of all of this chaos as the patients and their relatives are, but no one wants to say anything openly, for fear of being labeled a trouble-maker.”

Ivan believes that both medical professionals and laymen in Russia are simply unaware that things can be different. “They have these blinders on ­ most don’t even realize that it’s been scientifically proven that a child in the hospital physically benefits from having mom and dad around,” he said.

Ivan said that his colleagues frequently complain about the fact that Russian patients are nevertheless steadily demanding better quality care, “just like in the West.”

“[Russian doctors] believe that for as long as their work remains un-prestigious ­ as opposed to in Western countries, where doctors make more money and receive greater respect ­ they don’t owe anyone anything,” Ivan said. “But when it comes to visitation rights, what does prestige have to do with any of that? Nothing.”

Know your rights

According to Moniava, relatives of patients in the ICU must know their rights and remain calm at all times. “There is no specific legislation barring you from visiting ­ ICUs are not prisons,” she said.

“Don’t be emotional, be calm, don’t start a fight,” Moniava advised. “Just be very clear about knowing your rights and make it very obvious that if you need to complain, you will complain.”

Ivan believes that certain psychological tactics are especially useful in dealing with medical staff. “If the doctors believe that barring you from your child is more trouble than it’s worth, most of them will suddenly become very helpful and understanding,” he said. “Until concrete rules are laid down, visitors will be forced to play these games.”

All of this is of small comfort to Desnitskaya, who couldn’t hold back tears as she recalled seeing Nikita’s body in the morgue. “There was this terrible feeling,” she said. “The fact that I wasn’t allowed to touch him one last time when he was still warm and alive and could feel it, I can’t get over it.”