Dear Editor-in-Chief,
Dr. William Breitbart,
We were pleased to read the article “Hospital, hospice, or home: A scoping review of the importance of place in pediatric palliative care” by Walker et al. (Reference Walker, Nicolardi and Christopoulos2023), which presents essential conclusions concerning three contexts for professionals practicing pediatric palliative care (PPC).
The article focuses on how PPC is almost always associated with preferences on the place of death. Although this is a significant theme for children’s comfort, the authors of this letter believe that discussing the place in PPC deserves a more dedicated approach for promoting children’s quality of life at home and in the community.
Although palliative care is not equally accessible worldwide, its mission is to improve the quality of life, relieve suffering, and prevent complications for patients and families facing problems related to life-limiting conditions (World Health Organization 2002). In a pediatric setting, every child should benefit from individualized PPC beginning at diagnosis and in parallel with any curative approach (International Children’s Palliative Care Network 2008, 2009).
Children with complex chronic conditions and their families are frequent PPC users (Worldwide Hospice and Palliative Care Alliance 2020). These conditions are associated with a severe and incapacitating nature, but not all have an imminent life-threatening profile (Benini et al. Reference Benini, Papadatou and Bernadá2022). These children live increasingly more, mainly depending on care provided by their caregivers. And is that the wrong path to go? Is palliative care only for the ones who are in a dying process?
Providing PPC allows children who will not get better from their condition to benefit from holistic and proactive care toward physical, psychosocial, and spiritual well-being (Bona Reference Bona2006; Goldman et al. Reference Goldman, Hain and Liben2012). This mission can be pursued out of the hospital for many more reasons than dying. A child receiving PPC should not be defined by the disease and be able to go for a stroll, watch a movie, go to school, or do any activity appropriate to her development without forgetting the necessary healthcare interventions.
This perspective demands communities to be compassionate, supportive and involved with the life journey of people with palliative needs (Dumont et al. Reference Dumont, Marcoux and Warren2022). Awareness about symptom management, clear communication, and psychosocial support gather particular concerns in a pediatric context, as well as the demystification of PPC (Aoun et al. Reference Aoun, Stegmann and Deleuil2022; Chowdhury et al. Reference Chowdhury, Bezzahou and Khanom2023).
As end-of-life situations demand reflection on the place for caregiving, we believe that children with palliative needs deserve advanced planning while living in the community. Furthermore, community health teams are responsible for ensuring continuity of care, including managing health/disease needs and empowering communities to optimize their response to these children and their families, contributing to the normalization of chronic complex conditions (Charepe Reference Charepe, Ramos and Barbieri-Figueiredo2020; Jorge et al. Reference Jorge, Carrondo and Lopes2016). Every place – hospital, hospice, home, and community – is needed to support PPC in a continuum that respects children’s rights, promoting a hopeful and joyful life.
Funding
This work is financially supported by National Funds through FCT – Fundação para a Ciência e a Tecnologia, I.P., under the project UIDP/ 04279/2020.
Competing interests
None declared.