“Can you then do nothing more at all for my child?” This is a question asked by concerned parents which many pediatricians fear. The helplessness of the situation is expressed when a disease is stamped “incurable”. This expression is also the title of a book. Munich-based palliative physicians Monika Fuehrer, Gian Domenico Borasio and Ayda Duroux, as publishers of the book, have within it established the basic principles of palliative care for children.
Death is not the end of the suffering
Some 22,000 children in Germany suffer from tumors, metabolic disorders or chronic diseases of the nervous and immune system, for which there is no chance of recovery. About four to five thousand children die each year without an accident or an infection bringing about the fatal outcome.
One of the young patients – Nora – lay until her death at the age of 13 years for more than half a year in intensive care. For such patients, the nights spent without parents and siblings and with psychological pain were above and beyond the torments of their cancer therapy. A Survey in Sweden showed that nearly half of the parents of these terminally ill children perceived the care of their children as negligent and a similar number claimed inadequate pain management was involved. Most of these parents suffer for years after the death of their child.
Pediatric palliative care and children’s hospices
Boris Zernikow and Monika Fuehrer are the only two professors of children’s palliative care in Germany. In the Westphalian town of Datteln during last Summer, Zernikow was able to open the world’s first palliative care unit for children and young people. More than 50 children have since been there for an average of about two weeks as guests, only two having died in the ward. In Munich as well – by the latest next year – one such center is supposed to be built in the immediate vicinity of the Grosshadern Hospital, if the required 5.5 million € of financing is secured. Already in 2004 (similarly to that in NRW) a plan for coordinated multi-professional palliative care originated here, with the catchy name HOMe (an acronym in German for “Hospice Without Walls).
For severely ill and dying children like Nora, the best place is home, with the family. This is the unanimous opinion of palliative physicians such as Zernikow and Fuehrer. Their team also includes pediatric nurses with palliative care training, chaplains and social workers. They are always available, especially during pain crises which can’t be managed any longer by parents and pediatricians alone. Intensive care especially for such emergency situations is what distinguishes the palliative pediatric care in Datteln or Munich from the existing seven children’s hospices in Germany. Hospices provide parents and siblings with an unburdening of the stress that comes from daily care of the terminally ill child. Support is not just for the young patients, but also for the relatives. However, the hospices are not geared for intensive medical care. Showing stable symptoms is a prerequisite for admission to the hospice.
Authenticity and time
Before that, the disease affecting their children makes many parents desperate. As Boris Zernikow reports they often go to their pediatricians with unrealistic expectations about the chances of a cure and seek to protect their child from bad news. The confrontation with reality and desperate parents is – even for doctors and nurses – difficult. This is not uncommonly a reason to limit this contact to the necessary minumum. “If I am averse to meeting somebody because I myself am not tolerating death or suffering, my counterpart senses that”, says Zernikow. Authenticity and time are the keys that gain access to the patients and their families. What is important, explains Monika Fuehrer in addition, is listening: “What the suffering of the families is about and who is suffering at the time in families.”
The symptoms in children during their last months of life often resemble those of adults: pain, loss of appetite, nausea, vomiting, shortness of breath, and above all fear. Fear of being left alone, of parting with beloved people. Pediatric palliative care means therefore also dealing with these fears.
Particularly in the palliative phase pain – both physical and mental – is unbearable, because its sense is no longer clear. That means for the doctor: quick treatment with adequate pain medication. Oral rather than invasive administration is better for children. The isolation from play mates and school mates and not having holidays together with parents contributes to the suffering. Depending on the age of the children, death also has different meanings, ranging from “loss of everyday life“ through “punishment for “bad-ness” to “disconnecting the concept of transience from its innocuous wrappings” among teenagers.
Inner power of the helpers
The care – not only of the dying child, but also of siblings and parents – runs, at best, from diagnosis up to a point beyond death. All too often the family loses not only one of its members. The contact with nurses and doctors is also broken off, which is a relationship that has been built up through frequent contact over the past few years and is often very intense. The support of relatives can prevent pathological grief and psychiatric disorders.
But whence comes the power of the aid workers who are constantly confronted with despair and death? Regular supervision, inter-professional training or a helper conference after a death provides a cushion from mental stress. Above all else is one’s own attitude to be a help to all concerned, especially when the illness is for parents as well as for the pediatrician no longer controllable. “How is one to know how to treat a three-year-old child with morphine,” Boris Zernikow is quoted in the weekly magazine „Die Zeit“. In such cases, a doctor cannot draw on his experience.
So that in such crises children don’t end up in a “normal” intensive care unit, in which ticking apparati sit all over the bed instead of caring family members, palliative care units such as that in Datteln (and soon also in Munich) are necessary. Just so that children like Nora can spend the last days of their lives as self-determined as possible and together with the family at home.