“Is it ethical to conduct research on children in palliative care as they are such a vulnerable group and it would be hard to get ethical approval?” is a question Professor Julia Downing, International Children’s Palliative Care Network’s (ICPCN) Chief Executive, is often confronted with from those working in children’s palliative care. In the latest editorial piece for the online publication, Palliative Medicine, Prof Downing addresses whether or not it is ethical to conduct research on children’s palliative care.
Lack of evidence
A research paper by Beecham identifies the process of getting ethical approval as one of the key barriers to research in children’s palliative care. According to Prof Downing an even more important question to consider is, “is it ethical not to conduct research in children’s palliative care?” There is an incredible lack of evidence in children’s palliative care and much of children’s palliative care practice is based on adult palliative care or clinical practice. One of the persisting problems being the use of medications. A lack of evidence was highlighted in the development of the WHO guidelines on the pharmacological treatment of persisting pain in children with medical illnesses, many cases where recorded where they couldn’t make a recommendation for the use of specific medicines, due to a lack of evidence.
Prof Downing explains how the International Children’s Palliative Care Network (ICPCN) undertook a Delphi study to identify global research priorities. Top priorities included: children’s understanding of death and dying, pain management, funding for and the cost of children’s palliative care, training needs, interventions and models of care. Therefore the need for evidence within children’s palliative is not only limited to the use of specific medications but also includes service development, models and outcomes of care and the cost of providing such care.
Prof Downing writes, “The call for increasing the evidence base is a timely one, as there are attempts to both increase the evidence base for children’s palliative care and implement the WHA resolution in countries where such services are limited.”
In closing she continues, “There are challenges, but these can be overcome. I believe that as children’s palliative care practitioners worldwide, we need to see the generation of evidence as an integral part of all that we do, in order that evidence can be provided that enables us to deliver children’s palliative care services that are ‘evidence-based, cost-effective and equitable’ for neonates, children, adolescents and young people around the world.”
To read the full editorial piece, click here.