Palliative care from diagnosis to death for all ages
We agree with Murray et al when they describe late palliative care as a missed opportunity to do better for patients, families and healthcare services (1). While their work has focused on adults, there is also a need to do better for children and young people (CYP) with life-limiting and life-threatening conditions. Just as with adults, palliative care for CYP is often delayed, with referrals to specialist palliative care services occurring very late in the course of illness, if at all (2). This is a pressing concern as the numbers of CYP who could benefit from palliative care rises (3) and because the majority of children and young people who die in the UK currently do so in an intensive care unit environment (4).
There is wide debate around how palliative care can best be delivered for CYP, and a limited evidence base and resources to support service design (5, 6). Palliative care can be considered a shared responsibility between every healthcare professional involved in the care of individuals: “palliative medicine is only going to have its greatest effect when everybody from that junior nurse or junior doctor who they meet ….. has the skills to deliver that care to them in the way that’s appropriate for that child” (Dr A Thompson: https://vimeo.com/170747606).
We are currently undertaking a longitudinal interview project with CYP who are living with life-limiting and life-threatening conditions, and their families. The relevance of Murray et al’s concept of multi-dimensional wellbeing trajectories is highly evident in our interviews, but the importance of additional trajectories that need to be considered for CYP is also clear. A trajectory for education aligns closely with, but is distinct from, psychological and social trajectories. There is also an information and knowledge trajectory which would provide insight into where CYP and their families are receiving information, and how that compares to levels of knowledge, beliefs and expectations which are shaped by experience (7).
A further consideration for CYP and adults alike, is that with advances in clinical medicine and technology, more people are surviving once incurable conditions, or longer with conditions that are still associated with a shortened life expectancy, including some cardiac conditions. We have much to learn about the lived experiences of those individuals in order that healthcare services become responsive to their multi-dimensional needs.
One final point is relates to the term “palliative care” for CYP. Through patient and public involvement work, we have found that CYP who have received services from a children’s hospice have never heard the term “palliative care” being used in relation to themselves. They report that they feel negative about the term and prefer that it isn’t used; previous research suggests similar responses from parents (8, 9). The opinions of CYP and their families towards the terms used to describe their care is an important issue that can influence access to and take-up of services, and warrants further attention.
1. Murray SA, Kendall M, Mitchell G, et al. Palliative care from diagnosis to death. Br Med J. 2017;356.
2. Niswander LM, Cromwell P, Chirico J et al. End-of-life care for children enrolled in a community-based pediatric palliative care program. J Palliat Med. 2014;17(5):589-91.
3. Fraser LK, Miller M, Hain R, et al. Rising national prevalence of life-limiting conditions in children in England. Pediatr. 2012;129(4):e923-9.
4. Plunkett A, Parslow RC. Is it taking longer to die in paediatric intensive care in England and Wales? Arch Dis Child. 2016. doi: 10.1136/archdischild-2015-309592
5. Knapp C, Woodworth L, Wright M, et al. Pediatric Palliative Care Provision Around the World: A Systematic Review. Pediatri Blood Canc. 2011;57:361-8.
6. Mitchell S, Morris A, Bennett K, et al. Specialist paediatric palliative care services: what are the benefits? Arch Dis Child. 2017. doi:10.1136/archdischild-2016-312026
7. Bluebond-Langner M. The Private Worlds of Dying Children. Princeton N.J: Princeton University Press; 1978.
8. Monterosso L, Kristjanson L. Supportive and palliative care needs of families of children who die from cancer: an Australian study. Palliat Med. 2008;22(1):59-69.
9. Morstad BA, Yusuf F, Himelstein B. Perceptions of the term palliative care. J Palliat Med. 2006;9(5):1128-36.
Competing interests: No competing interests