The PAL Foundation (PALliative care for children) is committed to improving children’s palliative care: care with the aim to give a child with a life threatening or life limiting illness the highest possible quality of life. This care requires a coordinated approach to support the whole family in this difficult process. Specific knowledge and skills are needed to streamline such a process, and these are sorely needed in the Netherlands.
It is estimated that in the Netherlands between 4000 and 6700 children per year qualify for some form of palliative care. Of these children, about 1000 children die each year. The underlying problems and the disease courses are very diverse. Most of the children die during the prenatal period. Congenital malformations and neoplasms are the second and third cause of mortality.
The challenges that are experienced in children’s palliative care in the Netherlands range from those of coordination of care by a multi-disciplinary team of professionals to inadequate accessibility and lack of expertise. These problems are not only experienced by families but also by the caregivers involved. Parents of these children feel unsupported and professionals are often not qualified enough to identify care needs in time and/or provide the appropriate assistance. Coordination is missing when the child is being cared for at home, mainly because of the great diversity of disciplines involved in the child’s care. During their career most caregivers have little to do with children who need palliative care and lack the experience and knowledge to meet professional quality standards.
Inspired by some great examples in Europe, for example, ‘Koester-team Gent’ in Belgium and Kinderpalliativcentrum Datteln in Germany, the Emma Home Team pilot project was developed. The project is an initiative of the PAL Foundation, in collaboration with the Emma Children’s Hospital AMC, a section of the Academic Medical Centre of Amsterdam. With the Emma Children’s Hospital AMC the PAL Foundation has found a partner who shares the overarching goal of contributing to a structural improvement in children’s palliative care in the Netherlands. On the basis of this project a model will be developed with the provision of expert children’s palliative care guaranteed, regardless of where the child is located. To realise this from the start it has been decided to monitor and evaluate the project with the use of scientific research methods. The project will run for three years with the intention to implement the positive results in the broader context of the Netherlands.
The project was launched in mid 2012 in the Emma Children’s Hospital AMC. The Emma Home team consists of experienced paediatric nurses who work as case managers, and a multidisciplinary team of paediatricians, psychologist, pedagogical staff, social worker and a spiritual counsellor. The case managers work from the hospital with visits to the family homes. The goal of the Emma Home team is that children with life threatening or life limiting illness, and the family as a whole, get expert care and adequate guidance focusing on quality of life and when the time comes, to a good end of life. The team is available 24 hours a day, 7 days a week. A structure has been developed for registration, scheduling and reporting with the use of an internet based care file. The Emma Home Team provides comprehensive support for seriously ill children, their parents/guardians and siblings. It is comprehensive in the sense that they are aware of the physical, psychosocial and spiritual aspects of care, plus the important dimension for children: development. The case manager visits the family home and coordinates the care to meet the unique situation of each family. In this way the Emma Home Team has an important bridging function, not only from the hospital to home, but also from home to hospital.
From past experience of the Emma Home Team it has become increasingly clear how important it is that the perspective of the family and the home situation is seen and recognised by the hospital. The team also connects the various caregivers so that everything is streamlined and both coordination and continuity of care are guaranteed.
On June 1, 2013, the Emma Home Team was officially in existence for one year, during which time 58 families were supported. Initially much time and effort was put into promoting awareness of the Emma Home Team by the caregivers within the Emma Children’s Hospital. Within this academic setting palliative thinking and practice is not an obvious treatment course, with the focus on curative treatment still dominant. However, the new focus and the first experiences with children’s palliative care have begun to take effect. Both from within the general paediatric and the paediatric oncology department of the Emma Children’s Hospital, children are now being referred to the Emma Home team. And these referrals are coming earlier in the treatment process as it is ideal to start the provision of palliative care from diagnosis. Experiences from the Emma Home team show that the palliative process can also complement possible curative treatment. In addition, specific attention to bereavement care is an important facet of the project and will be developed in the near future.
Some reactions from parents:
“Pity we were not connected with the Emma Home team earlier….”
“The commitment, expertise and accessibility are a great support for us…..we can always call..”
“They arranged things I have not managed to do or where I had to wait for a very long time….”
“Previously we often went home with a lost feeling………….”
“Been very supportive during a time of crisis and we felt taken seriously…..”
“The Emma Home team has not intruded but has helped to take care of our needs…..”
The scientific research will be conducted both from the perspective of the child and parent or caregiver. The researchers are working together under the name PANDA study: Palliative ANticipated and Dedicated cAre. One of the studies focuses on the team itself. The project in the Emma Children’s Hospital AMC should reveal whether the model can be used effectively, efficiently and is easily transferable to other locations and other hospitals, but also as collaboration in home care. We will also examine the effectiveness of the intervention from the Emma Home team for children with a general paediatric disease, and for children with oncology diseases. Another study focuses on the added value of the Emma Home Team. Parents who are supported by the Emma Home Team will be interviewed about the perceived quality of care, and their effects on quality of life.