The
following summarises an interview conducted by an ASI correspondent with
consultant paediatrician Anna Sonkina exploring issues that will arise.

Dr
Sonkina said that the subject of seriously ill children had not commanded a
great deal of public attention until recently. However, hard work had been put
in promote the idea of palliative medicine. Conferences and other charitable
events had been organised and more information had begun to appear in the
media. All this had contributed to a change in the climate of public opinion
and so to the provision of the hospice on land made available by the
municipality.

There
were however outstanding issues. The system of palliative care needed further
development. Some cancer patients preferred to be at home, particularly in the
regions where there was frequently no access to pain killing drugs. Also how
might people coming from another town be dealt with? It was impossible to
create perfect arrangements at the start but every effort would be made to come
as close to the ideal as possible.

Whilst
any hospice opening today would have to declare readiness to deal with
incurable patients who have limited life expectancy, only a percentage of
children taken on by the hospice would be actually in the process of dying.
This was similar to the case in Great Britain, the USA and Canada. Most of the
patients would be temporary e.g. with a view to selecting a new pain management
regime or to afford patient and parents some respite from home care.

The
powers of palliative care doctors were limited. They were not allowed to
prescribe strong pain killers or sedatives. Only polyclinic doctors could do
that on the advice of the regional oncologist. However, the hospice doctors can
relieve other symptoms in the terminal phase (such as nausea, vomiting,
constipation, loss of appetite, bedsores, dry mouth). Parents became calmer
when they saw their children’s suffering relieved. The hospice would also help
them to understand what various symptoms mean and how to deal with them. What
parents feared most of all was being kept in the dark. Hospice doctors would help
parents decide whether to stop intensive treatment.

The
hospice would expect to receive patients with an illness likely to result in
premature death e.g. a severe variant of children’s cerebral paralysis. Life
expectancy was heavily dependent on the quality of nursing. The public needed
to understand that not only cancer patients would be received. An issue might
arise where someone was suffering from, say, cystic fibrosis, and needed
intensive treatment and to be resuscitated. Ms Sonkina did not think it would
be the hospice’s duty to provide this service. It was a place where people come
to die with dignity not where heroic efforts were made to prolong life. The
temptation to see the hospice as a substitute for a hospital should be
resisted. In a hospice relatives can be with their child when he or she is
dying.

Palliative
help might be understood only in the context of evidence-based. It recognised
medical assistance based on clinical research. But simply saying that it is
necessary to do something because it is scientifically proven (e.g. to give
high doses of pain killing drugs to children in pain or having breathing
difficulties or to support parents in their wish to refuse resuscitation) might
not work in Russia. Furthermore there were legal obstacles in the way of
providing totally competent palliative help. In Russia the most reliable course
would be to do something new and show that it works. For that purpose a
dedicated scientific centre would be needed which would have the courage to
work up new practices and assert the necessity for new legislation.

 http://www.asi.org.ru/asi3/rws_asi.nsf/va_WebPages/A78AFCCDEC00331244257ACD00310406Rus