Moscow News (Russia)
June 8, 2007
A MESSAGE OF HOPE
By Yelena Komarova The Moscow News
The Russian capital does not have a single non-cancer hospice, but
the first one may be on its way
On May 30, Sergei Mironov, speaker of the Federation Council,the
upper house of the Russian parliament, joined a board oftrustees to
set up Russia’s first "non-cancer" hospice, to be builtin Moscow.
Right now the city has eight hospices, and all are forterminally ill
cancer patients. Hospice services are available topersons who can no
longer benefit from curative treatment; thetypical hospice patient
has a life expectancy of 6 months or less.
Moscow’s first hospice was opened 15 years ago, near theSportivnaya
metro station in the city’s western part. The firstthing a person
passing the red brick wall and entering theivy-covered building sees
is a poster that reads: "Dear friends, wewould be grateful for your
contribution to the upkeep of our birdsand fish." Below is a
see-through plastic piggy bank.
"This is not only for our pets," Head Doctor VeraMillionshchikova
explained.
"We use some of this money to buy vodkafor our alcoholics. People
should be allowed to have a drink beforethey die: there is little
sense in trying to detox them."
Patients are not allowed to leave the premises. But themajority of
them are unable to walk on their own anyway. So everyward has a
direct "exit" to the courtyard.
"Think of an old woman who has for years been confined to herbed at
home, on the fifth floor, without a balcony or elevator. Shedoesn’t
know what fresh air is," the doctor said. "Here, she istaken care of,
her pain is treated. So when she is to be sent backhome, she grips
her bed and starts yelling: ‘Help! Police! They’redischarging me!’ We
have to calm her down and explain that she isnot discharged forever,
and will soon come back."
In a chapel nearby, Father Khristofor, a volunteer priest,
isconducting a service. Almost everything here is done by
volunteers.Patients do generally not have a kopeck. If they had any
money,they have spent it all on medications and bribes.
THE TRUST PROBLEM
"There is no one here from Rublyovka," Millionshchikova wenton,
referring to Moscow’s posh suburb along Rublyovo UspenskoyeShosse.
"The majority are in the low to middle income brackets. But’middle’
does not mean they have enough money to pay for a chemotherapy – at
least $ 8,000 a month. The wealthy go for treatment tothe West: They
do not trust our doctors. They believe doctors hercan substitute a
cheap or fake drug for a genuine one. Our healthcare system has
become rather strange. I was once diagnosed forcancer, but when I
went to Germany the diagnosis turned out to bea mistake. In countries
like Germany the attitude towards patientsis different: the health
care system there is law-based, so patientscan prosecute a doctor for
a mistake. Why are cancer patients inthe West told the diagnosis,
even though this may not be alwayshumane? Because if a doctor has
cheated a patient, he can go toprison. This is why rich Russians are
ready to pay through thenose there. But our hospices are modeled on
Western ones, and ourstandards are the same."
True, in the West a large proportion of incurable, terminallyill
patients choose to receive hospice care at home simply becausethey
can receive the same standard of care there as in a hospital.More
than 90% of hospice services provided in the U.S. are inpatients’
homes. Home hospice programs have an on-call nurse whoanswers phone
calls day and night, makes home visits, or sends theappropriate team
member if needed between scheduled visits. Allcosts are covered by
insurance.
In contrast, a terminally ill cancer patient in Moscow doesnot have
much choice: there are eight hospices, 30 beds each. Notsurprisingly,
there is a long waiting list. As a result of MayorLuzhkov’s directive
that each of Moscow’s administrative districtsshould have a hospice,
two more are being built in the west andeast of the city. But since
the number of cancer patients isconstantly growing, this is not
enough. Furthermore, citizens fromCIS countries are legally entitled
to free hospice care in Moscow.
But whereas Muscovites can at least try to accelerate thediagnosis
process by greasing some palms, out-of-towners simply donot know what
to do in such situations, and wait until it is toolate.
HOPING FOR A MIRACLE
Tsolak Mnatsakyan, a native of Armenia, is thirteen. Hesurvived by a
miracle: last year he was refused hospitalization inMoscow. Health
officials told his father Vardan: "Armenian children should go to
Armenia to die." But there was no money even to buya return ticket.
"We had sold our apartment and car, and come to Moscow to havethe
operation," Vardan explained,"but authorities at the Tushinohospital
dragged their feet until I paid for everything in advance,plus a
little extra. We are simple folks who came straight from themountains
and don’t know Moscow ways. So it took a while before wecaught on."
He haunted the doorsteps of the Moscow City Health Departmentand
other agencies to obtain a hospice referral, but was alwaysrefused.
It wasn’t until Aleksandr Chuyev, deputy chairman of theState Duma
Committee on Public and Religious Organizations,intervened: at last
the already comatose boy was admitted toHospice No. 1.
"This case is certainly not an exception," Chuyev said, "theydidn’t
want to issue a referral, presumably because they didn’t getpaid
enough for the ‘favor.’"
"Can’t that be done for free?"
"Indeed, that’s exactly what the law says. But unfortunately,everyone
interprets ‘free’ in his own way. A doctor who has becomea bureaucrat
sometimes forgets the Hippocratic Oath," the MP said.
"There are special quotas for people from the Moscow
Region,out-of-towners and foreigners: a certain share of the city
budgetis allocated to provide assistance to people who have
foundthemselves in trouble in another country," Vera
Millionshchikovaexplained. "It’s another matter how these quotas are
granted on thelocal level. No official will tell you that. They are
rumored to beavailable for money: a referral to our hospice
purportedly costs$ 1,500. Whenever I hear this, I say: ‘Just tell me
who gave to whom,and how much, and this person will be out of here in
no time.’ Butno one has ever told me. They are afraid."
Tsolak has become a symbol of life for Hospice No. 1. But it’snot
clear what is to be done with this symbol now. The boy lives ina
separate ward with his parents and brother, while hospice staffeach
contribute 100 rubles a month to send him for rehabilitationtreatment
in Germany. And they are hoping for yet another miracle:that some
philanthropist will provide the necessary 25,000 euros.Unlike Russia,
Germany does not grant Armenian citizens any quotasor benefits.
A NEW SPIRAL
Unlike Western hospices, where a certain number of beds areallocated
to neurological, asthmatic, diabetic patients, etc., allof Moscow’s
facilities are for cancer victims. But eventually otherterminally ill
patients also end up there because they have nowhereelse to go.
"We acted on the premise that our patients no longer needanything,"
Millionshchikova said, referring to the early 1990s whenshe and
Briton Victor Zorza were running from one office to officetrying to
convince officials that Moscow needed a hospice. Theprincipal aim of
a hospice is to control pain and other symptoms sothe patient can
remain as alert and comfortable as possibe.
"Where a diabetic or an asthmatic needs hormonal medications,while a
neuro-surgical patient requires expensive equipment – aterminally ill
cancer patient who has already been operatedundergoes radiation
treatment and chemotherapy, and is only givenrelief from suffering,
treatment for pain and other distressingsymptoms – bedsores, pain
syndrome, nausea, etc.," she said." ‘Cheapand effective’ was our
message to the authorities in the town hall- considering the
country’s general poverty. That was shortsighted,as it turns out now.
But today, when the state is no longer poor,it is also necessary to
open ‘non-cancer’ hospices, two to three ineach borough, to cater to
all chronically ill. I’m sure that therewill be a positive response
from the government if the project isspearheaded by a young,
energetic, and self-motivated doctor,someone like myself 15 years
ago."
DR. LIZA
Yelizaveta Glinka opened her first hospice in Kiev, Ukraine.She is
the president of VALE Hospice International foundation,which supports
shelters and other facilities for terminally illpatients in
post-Soviet countries. There are already severalfoundations in Moscow
that apparently provide assistance for suchpatients, but Dr. Liza is
the only one who has come out with theinitiative to open a
"non-cancer" hospice in the Russian capital.
For quite a long time she was unable to either obtain
officialapproval or to enlist support from her medical colleagues.
Whereasa ‘cancer’ hospice spends on average 1,500 rubles about $ 60
perpatient per day, the kind of an institution which she
wascampaigning for would have to spend about 10 times as much:
itwould need to buy and operate imported state-of-the-art
equipmentsuch as ventilation machines. But the city budget had no
fundsavailable for that. City authorities did not want to hear
aboutconstructing a special building for this, and neither
medicalinstitutes and academies wanted to share their premises.
"Today such patients are simply discharged from intensive careto free
up scarce beds and facilities. If they do not get better,they are
sent to general district hospitals," Glinka said."District hospitals
lack special equipment, so these people simplydie there. According to
our data, there are as many non-cancer ascancer patients in need of
special care in Moscow. In neurosurgeryalone 253 patients a year need
palliative care. Getting rid of themmeans killing them."
Dr. Liza believes that euthanasia, is a crime: "Five years agoI had a
patient; wealthy and self-sufficient, a self-made man. Hedid not lack
anything. He had a bodyguard and a driver who lookedafter him. He
only ordered food from the restaurant, with plenty ofliquor. He
didn’t want to depend on anyone. When he was unable torise from his
bed, and I asked him if there was anything he wanted.I expected him
to say something like ‘get well,’ ‘go to Spain,”order some rare
medication.’ But he asked me to bring him a kidgoat. He had been
raised in the countryside, among sheep and goats.I hired a kid from a
local farmer for 50 hryvnyas. The kid was putright into his bed. He
embraced it and started crying, for thefirst time in five months. I
always try to carry out a patient’ssecret dream. But if a patient
says that he wants ‘to go,’ thismeans primarily that he has not been
given an opportunity tocontinue an alert, pain-free life so that
their last days may bespent with dignity and quality. A hospice
affirms life anddoes not hasten or postpone death."
Last week, Dr. Liza’s project got off the ground, on thefederal level
even.
"Anatoly Vyalkov, an aide to the Federation Council
speaker,acknowledged the problem and told me that a federal law or
aspecial program on palliative care for non-cancer patients will
beadopted," she said. "When it is, clear guidelines will be
providedas to how many beds in the hospices are to be allotted, say,
insuch a megalopolis as Moscow. Sergei Mironov has decided to
endorsethe idea and get personally involved in our project. This is
avictory."
It certainly is a victory, albeit a very modest one: thefacility will
only have a dozen beds.
FACT BOX
The Hospice, in the earliest days, was a concept rooted in
thecenturies-old idea of offering a place of shelter and rest,
or"hospitality", to weary and sick travelers on a long journey.
DameCicely Saunders at St. Christopher’s Hospice in London
firstapplied the term "hospice" to specialized care for dying
patientsin 1967. Today, hospice care provides humane and
compassionate carefor people in the last phases of incurable disease
so that they maylive as fully and comfortably as possible.
Hospitals that treat seriously ill patients often have ahospice
program. This arrangement allows patients and theirfamilies easy
access to support services and health careprofessionals. Some
hospitals have a special hospice unit, whileothers use a "hospice
team" of caregivers who visit patients withadvanced disease on any
nursing unit. In other hospitals, the staffon the patient’s unit will
act as the hospice team. Many nursinghomes and other long-term care
facilities have small hospice units.They may have a specially trained
nursing staff to care for hospicepatients, or they may make
arrangements with home health agenciesor independent community-based
hospices to provide care. This canbe a good option for patients who
want hospice care but do not haveprimary caregivers.
(source: http:/)
OPINION
Aleksandr Parfyonov, head of the Intensive Care Department atthe N.
N. Burdenko Scientific Research Institute of Neurosurgery:
There are no ‘non-cancer’ hospices in Moscow today. So I amready to
participate in Dr. Glinka’s project. The new health careinstitution
will not be exactly a hospice: it could, for example,provide
rehabilitation care to patients after serious neurosurgicaloperations
or traumatic brain injury. The problem is that patientsmay have to
stay in intensive care for up to one or two years,while
rehabilitation can be extremely slow. When their conditionimproves
somewhat, one to one and a half months after an operation,they are
treated as chronic cases but remain in intensive carebecause they
need lung ventilation. The majority of medicalinstitutions simply
cannot afford to keep them for so long. Withstate-of-the-art
technology, patients who simply died in the pastsurvive today, but
much painstaking work is required to improve theirquality of life.
This is not the task of intensive care. During sixmonths that a
‘chronic’ patient may spend there, neurosurgicalassistance can be
provided to tens if not hundreds of otherpatients.
I see the new project as an extended-care facility, a sectionof
palliative care to neurosurgical patients at a large medicalcenter.
This will require expensive equipment but intensive care isthree to
four times more expensive.
www.cancer.org/