The key to a compassionate friendship
Radio Prague, Magazine, author Daniela Lazarova,
date of broadcasting: 17.05.2003.
Fighting a serious illness is a major challenge for any
of us - much more so for children. Hospital wards where children are seriously
sick or dying are heartrending places which most of us hope to avoid. A young
student couple walked into one such ward in 1988 - with purely academic
interests in mind : to ascertain the impact of a hospital environment on sick
children. The project was to change their entire lives. Within three years of
that first visit Jiri Kralovec and his wife Marketa set up a foundation to help
improve the lives of sick and terminally ill children. I asked Jiri to tell me
how it all began.
"Well, in fact the idea
came to us in 1988 when my wife and I first visited Motol Hospital which is the
biggest pediatric teaching hospital in the Czech Republic. We visited the paediatric cancer
ward in 1988 and it was a totally unexpected experience for us. We came with
many misconceptions and the main one was that the children lying in those
hospital beds would somehow be different from healthy children. This
misconception disappeared after a few minutes spent on the ward. We found
perfectly normal children who had the misfortune to suddenly find themselves
in an environment which was fairly unpleasant and in many ways strange to them.
And, we very much wanted to bring back some normality to their lives. So we
started working in the ward - first as volunteers - and made friends with the
children. That sounds like a cliche but it really was so. We became personally
involved with the children. We listened to them, we spent many hours talking
about their lives and their hopes and their homes, about the things they were
missing most. These personal encounters were the main impulse or the trigger
which totally changed our own future. We have never been members of any helping
profession, we are not from a medical background, psychologists or whatever. We
are just people who happened to walk in, were touched by what we saw and
decided to do something on a purely humane level."
So what did you go on to do?
"Well, at first we just listened a lot and tried to meet
some of their small needs -bringing toys, taking them out for walks, talking,
helping them write postcards home, making telephone calls to their family and
such. We wanted the ward to become a little more child-friendly."
So, how did the hospital management, the doctors and nurses react to this effort?
"We were - if not really welcome - then
accepted. But the longer we were there the more problems we saw. Problems that
were not being addressed by the hospital and problems that we wanted to address
very much. It was impossible to do this simply as a young couple who had some
ideals, some goodwill and energy to devote to this. So together with some
friends we set up a foundation and as an organization we could do more. We could
address people, we could start publishing things, we could start organizing
seminars and we could also negotiate with hospital management which we did."
So what are the foundations' main goals today?
"Most importantly, we want to set up a children's hospice,
which is a facility that is still missing in the Czech Republic. Initially we
didn't call it a hospice as we didn't expect children to die there. Later on, however,
we saw that many children couldn't be treated successfully and we saw the
difficulties - the very practical difficulties - that they and their families
have to face when they see that there is nothing really effective that the
hospital can offer in terms of a cure. So we decided to include the hospice
dimension to our original plan, which was a house in the country - an "open
house" or a "therapeutic farm," since we wanted to use the beneficial influence
of trees and farm animals and so on. We wanted to create a place that would
resemble a grandmother's village house but that would, at the same time, be
adjusted to the needs of individual child patients."
One of the main things you are focussing on is to enable
these children to be with their parents as much as possible, aren't you?
"Yes, exactly, exactly. All the things that we are trying to
do are focused on the whole family not just on the children themselves."
Does that mean you are giving the parents some kind of
counselling or guidance as well?
"As I mentioned, we are neither
psychologists nor members of any other "helping" profession. What we are trying
to offer the parents is mediation in case they need professional help. But the
main thing, which is at the core of all our activities, is a sort of
"compassionate friendship". Sister Frances Dominica who is the founder of Helen
House, the first children's hospice in the world, established in the early 1980s
in Oxford, Great Britain, once said that a hospice is not a house but a sort of
"extended friendship" offered to the families -and that is exactly our view. We
simply want to be as close to the families as they themselves wish. We want them
to know that we are there to share with them whatever they find important or
relevant to shar with someone else. And, of course, we want to provide
whatever practical help we can as lay people. The children's hospice will have
mostly a respite function, a respite role. A place where sick children and their
families can re-charge their batteries and find the strength and courage to
carry on. Of course, we are trying to do some other things as well. We have
started supporting parents in hospitals and this is true not only of parents
with seriously sick children but also parents whose children simply have to be
in hospital for whatever reason. We try to inform both the parents and members
of staff that the treatment should always include the whole family."
Is that the case? Are children, as a rule, alone in
hospitals? Aren't parents allowed to spend time with them whenever possible?
"You know, the situation is very mixed. There are some open
minded hospitals that allow parents to stay with the children almost
automatically or whenever the parents wish to stay and there are hospitals that
still exclude parents from treatment and care. So one of our aims is to map the
situation in the Czech Republic, in fact we have been doing it since 1994, and
we have produced a list of all children's wards with their characteristics and
with the services they offer to the parents of sick children. So that is one of
our activities. We try to supply both the care providers and the families with
the information they may need to make the right choice of hospital."
You obviously have a deep understanding of these problems
- of what very sick children and terminally ill children really need. To some
extent you've already given us the answer to this question, but could you tell
us - again - what you think is most important for them ? What do they need most?
"They naturally need superior medical and nursing care which
they, in most cases are, - hopefully - receiving. They also need not to feel
abandoned. Both the children and their parents need to know that they can, under
any circumstances, be together for all difficult situations. The diagnosis
of a life limiting or life threatening
disease is a very difficult and sometimes damaging situation for the family.
They need to know that they do not have to suffer any more than is inevitable.
If the child is in hospital alone and has to undergo a new and strange and
frightening experience which both the hospital environment and the treatment
itself represent and when there is no one from the family sharing this with him
or her then it is really difficult for the child. The child returns home as a
little stranger. There is no one who knows exactly what he or she experienced at
the hospital and it is something that is difficult to verbalize and to convey to
someone else. If there is no one with you, sharing the experience directly, it
is almost inexplicable."
Today the Klicek Foundation is involved in numerous
activities - it is building a hospice for children and operating a dormitory for
parents of sick children on the grounds of the Motol Children's Hospital. Jiri
and Marketa organize summer camps for sick children to help bring some joy and
normality back to their lives and translate books for parents on how to come to
terms with their child's illness or death. Since that kind of literature is
still scarce in the Czech Republic the translations from English are a Godsend
to parents who are desperate for advice on how to best help their children and
find the strength to carry on.
Source: Czech Radio 7, Radio Prague
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