Trends in Palliative Care Research 2024; Issue #05

Commentary By:

Abby R. Rosenberg – Boston Children’s Hospital, Dana-Farber Cancer Institute, Harvard Medical School, Boston, MA, USA – Dr. Rosenberg is the Chief of Pediatric Palliative Care at Dana-Farber Cancer Institute and the Director of Palliative Care at Boston Children’s Hospital. Her research focuses on promoting resilience and quality of life among youth with serious illness and their families.  

Feature Articles

Shack, A. R., Fried, I., & Siedner-Weintraub, Y. (2024). Palliative team involvement in end-of-life care for Jewish and Muslim children in Jerusalem: A unique clinical and cultural context. Palliative & Supportive Care.

Dinicola, G. A. (2024). A Dialogue between Hindu and Catholic Perspectives in Taking Care of Newborns at their End-of-Life. Asian Bioeth Rev, 16(2), 233–248.

Iluno, A. C., Tatterton, M. J., & Haith-Cooper, M. (2024). Meta-synthesis of ethnic minority families’ experiences of children’s palliative care across developed countries. Palliat Support Care, 1–14.


In this era of increasingly polarized rhetoric, talking to patients and families about their faith can feel increasingly difficult. This challenge has felt particularly poignant since the beginning of the current Israeli-Palestinian conflict.  If talking about politics and religion felt uncomfortable before, it now feels taboo. 
There are plenty of reasons clinicians avoid talking about faith, spirituality, and religion with their patients. Historical studies suggest the most common is that clinicians worry they will offend; saying nothing feels safer than saying the wrong thing.  We in palliative care, however, understand that religion and spirituality directly impact decision-making, values, and goals of care.  We also understand that patients and families want healthcare providers who “know” them beyond the illness; they want clinicians who honor their religious and spiritual identity and culture. 
How can we navigate the taboos of religion and spirituality in the current era?  This month’s Trends in Pediatric Palliative Care Research highlights three helpful resources.  First, Shack, et. al., conducted a retrospective chart-review of 78 children who died during a 5-year period at a hospital in Israel (described by the authors as a “majority Jewish and Muslim country with religious and legal constraints around end-of-life care”). Of note, this study was conducted prior to the current conflict.  Findings underscored both universal and nuanced patient- and family-preferences.  Pediatric palliative care involvement was similar across religious Jewish, religious Muslim, and secular groups, and associated with improved pain management and less intensive end-of-life care.  Although the sample sizes lacked power to confidently detect differences in care-delivery patterns, findings suggested nuances in services like hospital-based psychosocial- or spiritual-support, interventions like Cardio-Pulmonary Resuscitation, and the location of the child’s death. 
Second, Dinicola provided a single-author’s ethical commentary of Hindu and Catholic perspectives on end-of-life care.  With a self-described goal to “help Catholic, and more broadly Western, healthcare providers take care of seriously ill newborns and support Hindu parents with difficult decisions,” Dinicola provided a robust description of Hindu philosophies, including on controversial topics like abortion. As with Shack et. al., Dinicola described similarities and differences in faith-based practices, including that it is always difficult to witness a child’s death, that rituals can be helpful and important, and that individual family-values are necessarily unique. 
Finally, Iluno, et. al., conducted a systematic review of the literature with a goal of better understanding how families from ethnic minority and immigrant populations experience pediatric palliative care within high-income countries.  Using data from eight studies, the authors named religion and spirituality as keys not only to family identities, but also to “immigrant and minority group survival.”  Indeed, synthesized themes suggested ethnic minority and immigrant families commonly experience stigmatization, unmet communication and resource needs, and a lack of cultural sensitivity in healthcare settings. 
Together, these articles provide important reminders.  First, no religion or culture is a monolith.  While it may be helpful to understand common religious and spiritual norms, it is insufficient to assume one-size-fits-all.  Instead, these articles argue for an individualized, nuanced, and open-minded approach.  Second, healthcare providers need not be afraid to engage in conversations about culture, faith, religion, or spiritual beliefs.  Rather, we should be curious and lean into learning.  Last, we palliative care clinicians understand that interprofessional approaches are the best practices.  While we must be comfortable with basic spiritual history-taking, we are most effective when we partner with chaplains, religious or spiritual guides and community leaders and community leaders to meet patient/family needs. 
Sometimes, I cynically assume the world will only become more polarized.  I worry about how we will talk to our patients, our neighbors, and even our colleagues around the world about subjects like faith and philosophy.  Let us in pediatric palliative care not be the ones who shy away from these difficult conversations.  Let us instead be the ones to model curiosity, inter-professional collaboration, and the honoring of patient and family faith, religion, spirituality, and culture. I am grateful to authors like Shack, Dinocola, and Iluno and their teams for helping us find our way.
Additional References

  1. Balboni TA, VanderWeele TJ, Doan-Soares SD, Long KNG, Ferrell BR, Fitchett G, Koenig HG, Bain PA, Puchalski C, Steinhauser KE, Sulmasy DP, Koh HK. Spirituality in Serious Illness and Health. JAMA. 2022 Jul 12;328(2):184-197. doi: 10.1001/jama.2022.11086. Erratum in: JAMA. 2022 Aug 23;328(8):780. PMID: 35819420.
  2. El Nawawi NM, Balboni MJ, Balboni TA. Palliative care and spiritual care: the crucial role of spiritual care in the care of patients with advanced illness. Curr Opin Support Palliat Care. 2012 Jun;6(2):269-74. doi: 10.1097/SPC.0b013e3283530d13. PMID: 22469668.
  3. Lekas HM, Pahl K, Fuller Lewis C. Rethinking Cultural Competence: Shifting to Cultural Humility. Health Serv Insights. 2020 Dec 20;13:1178632920970580. doi: 10.1177/1178632920970580. PMID: 33424230; PMCID: PMC7756036.
  4. Superdock, A.K., Barfield, R.C., Brandon, D.H. et al. Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: a qualitative study. BMC Palliat Care 17, 107 (2018).
  5. Wiener L, McConnell DG, Latella L, Ludi E. Cultural and religious considerations in pediatric palliative care. Palliat Support Care. 2013 Feb;11(1):47-67. doi: 10.1017/S1478951511001027. Epub 2012 May 22. PMID: 22617619; PMCID: PMC3437238.

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