When a child is diagnosed with cancer, everything possible will be done to achieve curation. Unfortunately, for a number of patients at some point there will be no curative options left, and treatment has to switch to palliative care. The same dismal prognosis is seen in some children with metabolic or neurodegenerative disorders.  

The growing interest and possibilities in palliative home care for adults has luckily made people realise that also children (and their parents) wish to spend the last weeks or months of their lives in the comfort of their own homes and families. Even more than for adults, a hospital appears threatening to a child, a place where it doesn’t want to spend the last weeks of its life. 

Yet, until recently, children used to go or stay in the hospital to die. A lack of knowledge and means hampered good quality palliative home care for children and the family doctor had little people to turn to in case of problems. Palliative care for children is not the same as palliative care for adults in smaller doses. A child is not a small adult, and requires some special considerations. The doses of the medications are different and some techniques appear very threatening to children and should never be used in palliative setting, such as intramuscular injections. Emotionally children react differently than adults, according to their age, and the huge entourage (parents, brothers and sisters, grandparents, school friends etc.) only make the problem more complicated.

All this has led people to realise the need for professionals trained in palliative home care for children, and to the foundation of a Children's Committee within the organisation Palliative Home Care Antwerp (PHA). The latter is a network for palliative home care in the district of Antwerp, with intent to optimise the quality of life of the dying patient and his/her family.  One basic principle is very important in all this: PHA does not take over tasks of  existing organisations for home care, but merely supports and co-ordinates intra- and extramural care. Former experiences in adult palliative patients showed that this kind of approach significantly improved the quality of home care and life of the patients and their families. 

The Children’s Committee is composed of a general practitioner, two paediatricians, a palliative nurse, a representative from the network PHA, a social worker and people who professionally come in contact with dying children. This committee started a project called ”Children and palliative care“, offering a structure for the organisation of palliative home care for children and their families, following the same basic principle i.e. not taking over tasks from existing organisations, merely supporting them. The extent of the care is determined completely by the need of the child and his/her family and is not binding. 

Practically, a child is entered by the treating specialist or by the family who informs PHA. In the latter case, PHA will notify the treating physician. A third possibility is the general practitioner contacting PHA, who in turn will notify the specialist. The fact that the family (and the child) are well-informed about the palliative nature of the situation is a prerequisite, as the consent of the parents (and the child) are needed to bring in PHA. 

At the start of the palliative care, a first meeting is organised in the hospital with the treating specialist, the general practitioner of the family, a representative of PHA who is responsible for this child, the palliative nurse, a nurse from the hospital where the child was treated, a social worker, a psychologist and  home care workers that are involved at that moment. The medical, nursing, psychosocial and spiritual situation and needs of the patient and his/her family are discussed, as well as problems that are expected to arise in the future. The possibilities of home care are mapped and a “work chart” is filled in with the names and respective tasks of all people involved in the home care (fig. 1). The general practitioner becomes the pivot on which the medical treatment hinges, and the specialist stays in the background, but is in easy reach for any possible questions the general practitioner may have. 

The co-worker of PHA that is responsible for this child co-ordinates all the care given. He/she is the person to be contacted by all co-workers, and is responsible for advice and support of all first line caregivers. This can range from very practical help such as lending out medical equipment, to giving social support by calling in volunteers. PHA can be reached by telephone 24/24 hours in case of emergency. 

The palliative nurse from the hospital is the “bridge” between intramural and extramural care. She is in very close contact with the PHA co-worker. She prepares everything for the discharge from the hospital of the palliative child, and teaches paediatric nursing skills to the caregivers at home if necessary. She informs the specialist in the hospital about the situation at home.

Shortly after the first consultation in the hospital, a second meeting takes place at the home of the sick child, involving all people that will take care of the child and his/her family, including the child and the parents but excluding the treating specialist. The goal of this meeting is to get the child and the family acquainted to all the caregivers, and explain to them what can (and what cannot) be expected from the help. At the same time, parents and children can express their needs and expectations.  

Depending on the need of the family or the caregivers, further meetings will be arranged. It is obvious that very good communication between the caregivers is of utmost importance to report problems, changes in medication etc…

The project started in 1998. Meanwhile, about 20 children were entered, some of them from outside the Antwerp region. In the latter case, the gained knowledge and experiences were successfully shared with the network responsible for that child.

It is very hard to express the value of this project in figures, which is so important in modern medicine. However, every palliative situation is evaluated afterwards, by parents as well as by all the caregivers. Both parents and caregivers experience the home care given as very positive. Caregivers indicate they have the feeling to be doing something that really makes a difference. Parents can spend their time on things that really matter, such as just being there for their dying child during the time they still have together, because a lot of practical arrangements and worries are taken out of their hands. Furthermore, they know that in case of an emergency, somebody that is familiar with their specific situation can be reached, day or night. This is very comforting and enables parents and children to spend their last moments together in a very calm and intimate atmosphere.

Dr. E. Michiels., M.D., Ph.D.

Paediatric Oncologist

Koningin Paola Kinderziekenhuis Antwerp

Tel. +32 3 280 21 60 or PHA Tel. +32 3 820 25 31