The key to a compassionate friendship
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 teaching hospital in the Czech Republic. We visited the pediatric 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 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 they 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. But it was impossible to do so as a young couple that 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. But later on 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 focussed on the whole family not just on the children themselves."
Does that mean you are giving the parents some kind of counseling 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 be shared 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?
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. If you would like more information about the Klicek Foundation or would be interested in volunteer work please go to: www.klicek.org