In Switzerland, support services for children suffering from incurable diseases, and for their families, have been slow to develop. Change is on the way, but one of the few Swiss specialists in the field says there is much to be done.
"Marc, I have had enough. I want to end it all."
Marc is professor Marc Ansariexternal link, head of the paediatric oncology and haematology unit at Geneva University Hospitals. Just before he spoke to swissinfo.ch, he was told this by a teenage patient suffering from an incurable cancer.
The message sums up the whole difficulty of the situation: a youngster fighting a disease which, in the end, is not going to let him go; and a doctor trying to give him the treatment and support that makes sense.
Ansari says the wish to die is not an unusual one. Mostly, he hears it from patients in their teens. The reasons are many, he says. "You have to try to understand the ‘why’ of such a wish – what triggered it. Sometimes, it is an attempt to deal with problems that have not been talked about yet, to talk about fears. Often, these are youngsters with whom we need to spend more time trying to understand and resolve the issues. There is a need to support the child in his family setting."
Not just the child, but also the family
Including the family is one of the distinguishing features of paediatric palliative care. The aim – apart from alleviating physical and psychological pain of the child and improving quality of life – is also to help the whole family in every way possible during the course of the disease, and also after the child dies.
While the disease takes its course, it is indispensable to to be able to provide the option of at-home care for the child, if the family wishes it. This, Ansari says, is "very important: it allows the child and the family to go back to their own environment, to have times together which are very different from what can be experienced inside a hospital”.
Thanks to its team specialising in palliative care, and to the collaboration of paediatricans in Geneva and trained private nurses, the paediatric oncology and haematology unit can provide the support needed to make this happen.
"We suggest home-based care, but we do not require it," notes Ansari. “Often, in the beginning, families prefer to stay at the hospital because it represents safety. They think the child will get better care, and they are afraid to take him home. By the time you talk to them about palliative care and comfort care, the future is looking quite black. So they are afraid of not being able to handle the situation at home."
Home care represents a major undertaking, since comparable services to those available in the hospital must be provided.
"For every patient, there is a need for specific strategies and very varied approaches, to give them the maximum of comfort,” Ansari explains.
Nonetheless, once families know that they can count on backup from a mobile team available round the clock, and that the hospital door is always open if help is needed, they usually opt to care for their child at home. "Usually, families who do that thank us at the end that they were given that option," says Ansari.
Support for grieving families
Palliative care is ongoing. In the end, Ansari explains, "the child will die, but it is important to continue supporting these families so that, bit by bit, we can try to rebuild them, so that they can live a normal life. These parents and siblings will have a deep, painful wound. We hope that our support will help make it heal, even though, of course, they will carry the scar their whole lives".
An illness that leads to a child’s death puts family relationships to a hard test. It is not unusual for couples to break up, and for siblings to experience negative impacts on their own development and their relationships with their parents. "One of the solutions is to bring in family therapists. To try to rebuild the family – to find a balance again – it takes specialists who have more resources and time than we do, in particular paediatric psychiatrists specialising in family therapy," Ansari explains.
The broad, multidisciplinary approach is one of the chief characteristics of palliative care. The sheer complexity of the human context and the range of pathologies dealt with require it. These pathological conditions are rare and quite specific to the child. The way the disease develops, and the drugs and treatments used to fight it, are often different in children than adults, says Ansari.
In his view, "paediatrics really needs to have these groups of specialists in palliative care". The group for paediatric palliative care he heads at Geneva University Hospitals was set up in 2007 within the paediatric oncology and haematology unit. "We did it as a kind of volunteer project outside our normal working hours. Bit by bit, with the help of private foundations, we found the means to do it better," he recalls.
Now the group is thinking of expanding its mission to helping children with other conditions, such as neurological disorders or congenital metabolic, pulmonary or cardiac diseases. For this, Ansari says, more resources will be required. “We are making proposals at the institutional level,” he says.
Slow growth in Switzerland
The fact that the Geneva team was set up only due to a volunteer effort by a group of pioneering professionals, and the fact that the hospital does not currently have an official paediatric palliative care unit, reflects the situation in Switzerland as a whole.
There are only three hospitals (St Gallen, Zurich and Lausanne) that have such units, as noted in a studyexternal link [in German, French and Italian] released last February by the Zurich University Chidlren’s Hospital and the University of Basel Institute of Nursing Science. The study showed that there are differences between hospitals that have a team specialising in child palliative care, and those that do not.
Ansari remains hopeful, as more resources slowly become available and more people and institutions become aware of the issue.
"I can only see positive things coming in the future. In Switzerland, we are not always the quickest, but when we do something, we do it well – and we do it solidly, for the long term. At this stage, we are aware of the need to speed up the development of palliative care, and this is the direction we are going in, although there is a lot of work to be done."
Translated from Italian by Terence MacNamee, swissinfo.ch