Commentary by Arun Ghoshal, MD, MRes, palliative care physician at Tata Memorial Hospital, Mumbai
Feature Articles: Marcus, K. L., Santos, G., Ciapponi, A., Comandé, D., Bilodeau, M., Wolfe, J., & Dussel, V. (2020). Impact of Specialized Pediatric Palliative Care: A Systematic Review. Journal of Pain and Symptom Management, 59(2), 339-364.e10.
The provision of palliative care for children has long been a global concern, and lately, there is much discussion on the need for palliative care for children, both internationally and in the local setting. It is hard to ascertain accurate figures on the number of children worldwide that would benefit from palliative care, with estimations varying as much as between 7 and 20 million 1. Quantification of the need is complicated by factors such as uncertainty of population numbers; the unpredictability of disease trajectories; access to preventative and curative services, and, muddle about which children would benefit from palliative care.
Guidelines from professional societies around the world advocate that palliative care services should ramp up their amenities to match to the diagnoses and number of children requiring it, along with the needs of those children and their families. Universal implementation of these recommendations seems a distant future to me. Even convincing a receptive pediatrician might be hard in the absence of scientific evidence. Here, the paper by Marcus et al. brings up this essential evidence from world literature through a well-conducted systematic review. The authors have critically evaluated the effects of providing Specialized pediatric palliative care (SPPC) to children with serious illnesses and their families on patient and health system outcomes.
Many themes, those which are pertinent to the ongoing debate in international SPPC, can be identified in the paper, such as the need for SPPC; measuring outcomes in SPPC; assessing the quality of life, the prevalence and management of different symptoms; understanding the parent’s perspectives; and the importance of research from different countries and socio-cultural settings. The authors moreover have described other nonetheless significant care-related aspects including caregivers, end of life care patterns, and utilization of health care services.
Understanding the experience of children through their parents has engendered much debate. The use of proxy-measures for understanding a patient’s experience is not new, particularly at the end of life, and clinicians often ask the opinions of family members or informal caregivers to promote optimal care decisions. Thus, describing illness experience in children suffering from a life-limiting illness is difficult, often due to the lack of validated symptom assessment scales in this population. Whilst various symptom assessment scales, such as the Edmonton Symptom Assessment Scale (ESAS), Memorial Symptom Assessment Scale (MSAS) and the Palliative care Outcome Scale Symptom List (POS-S) exist as validated tools in adults, it is only recently that work has been done on evaluating the reliability and validity of such tools in children. This paper shines on this aspect and has beautifully described the various tools used in SPPC along with outcome measures throughout the trajectory of illness.
There are children in India who suffer from complex, chronic, and ultimately life-threatening conditions that necessitate frequent and prolonged contact with the pediatric health care system2. These children and their families can benefit from the incorporation of palliative care into the existing treatment-focused plan of care. Within SPPC there are a critical need for evidence, resources, guidelines on best practice and opportunities for collaboration, and research needs to be multi-professional, focused on the needs of the child, from a local, national, and international perspective. As SPPC services continue to develop and evolve around the world, research from different services and countries must be published so that we learn from each other and adapt our services as appropriate. Evidence synthesis, such as this one, is important in understanding that evidence base.
1. Sasaki, H., Bouesseau, M., Marston, J. et al. A scoping review of palliative care for children in low- and middle-income countries. BMC Palliat Care 16, 60 (2017).
2. A brief history of children’s palliative care in India – ehospice. https://ehospice.com/inter_childrens_posts/a-brief-history-of-childrens-palliative-care-in-india/. Accessed 6 May 2020