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.
Parents of the children cared for by the EmmaThuis care team commented on the commitment, expertise and accessibility of the staff and mentioned that they wished that they had been connected with the team earlier in their child’s illness.
Read the full article on the international children’s edition of ehospice.