Dave Lysecki – McMaster University and McMaster Children’s Hospital, ON, Canada Division Head of Palliative Medicine in the Department of Pediatrics at McMaster University; Founder and Staff Physician in the Quality of Life & Advanced Care program at McMaster Children’s Hospital; Medical Director of Keaton’s House – Paul Paletta Children’s Hospice (in development); Medical Director of Canada’s Pediatric Palliative Care Alliance
Featured Articles
AlThaqafi, W., Alayed, S., Fraihat, L., Sharha, I., Alsubayyil, M., & Alageel, Y. (2025). Measuring the Level of Confidence and Identifying Gaps in Providing Palliative Care Services to Children by the Adult Palliative Care Team in the Kingdom of Saudi Arabia. Journal of Palliative Medicine, 28, 4.
Sadler, K., Altarifi, L., Callaghan, S., Khan, S., AlGhamdi, K., Alayed, T. M., Alhuthil, R., Alshehri, A. A., Altassan, M. A., Aldhari, M., Hussain, H. H., & Baragaa, M. (2025). Intensity of Care at the End-of-Life in Pediatrics: A Single Center Analysis With Implications for Advanced Care Planning in Saudi Arabia. The American Journal of Hospice & Palliative Care, 10499091251339615.
Commentary
One of the great pleasures of my career in medicine to date has been exposure to and learning from various world cultures – through patients, through medical travel, and from learners. Through my time at McMaster, I have had the great pleasure of befriending, teaching, and learning from many medical trainees from Arab Gulf counties. Many of these trainees reported having had little formal education or past exposure to pediatric palliative care and expect little infrastructure to rely upon when going back home. This is why it brings me such delight to present two articles in this month’s review from the Kingdom of Saudi Arabia.
In the first, Sadler et al. report a descriptive retrospective study at a 1200-bed (adults and children) tertiary care centre in Riyadh over a 2-year period. The study characterized end-of-life care for 302 children. Cardiac disease was the most common underlying cause of death (30.1%) followed by malignancy (20.9%, of which over half were solid tumours). 80% had intensive interventions in the last 48 hours of life including CPR for 28%, and 75% died in the ICU. 67% had no advance care planning (defined as “agreement between the treating team and the child’s legal guardians on priorities and goals of care if the child’s condition deteriorates”) while 67% had a DNAR order in place at the time of death, signed a median of 3 days before death (95% CI 1-15 days). Only 28% of the children who died had been referred to palliative care.
Next, Althaqafi et al. sought to understand the comfort of adult palliative care physicians in providing palliative care to children. The survey had 86 respondents, 84% of whom worked in tertiary hospitals. 67% had followed at least one child in the last year. 77% felt their training in pediatric palliative care was insufficient and while some where confident, many reported not feeling confident in pain management, communication, and care planning for children. A majority preferred that pediatric palliative care operate as a separate service (78%).
These studies are invaluable in establishing the foundation for pediatric palliative care and defining targets for high-yield initiatives. It is a dangerous temptation to use published care models, benchmarks, outcomes, and guidelines from other contexts and attempt to apply them to one’s own; however, the patients and families, their circumstances, their needs, and the available/potential healthcare supports may vary dramatically. For example, in comparison to my experiences here in North America, the high proportion of death by cardiac disease is notable, as are the proportion of solid tumours (generally behind CNS tumours and leukemias), the high degree of intensive care at end of life, and the limited advance care planning. As well, the responses from adult palliative care physicians and particularly the proportion of respondents working in tertiary care centres raises the question of access to confident care particularly outside of tertiary institutions.
When trainees come to Canada, my “role” has been to teach pediatric palliative care knowledge and skills, generally for them to take back to their country of origin. It is, however, abundantly clear that pediatric palliative care (and all health care for that matter) is inherently contextual; pediatric palliative care is intimately tied to ethics, culture, and law. Its practice requires translation – linguistically, yes – but also culturally, ethically, and legally. And so, we have found ourselves learning from one another, and not only for their future practice back home, but in the active care for Canadians in finding balance between culture and the Canadian medical, legal, and social system.
We all benefit from the development of pediatric palliative care expertise across the world, furthering our understanding of the application of its principles across the global spectrum of cultures, religions, health systems, and legislation. Searching “Saudi Arabia” and “pediatric palliative care” in PubMed yields 8 search results – and all from within the past 2 years!
I am thrilled to see this awakening of pediatric palliative care in the Kingdom of Saudi Arabia and to know of great strides and cooperative efforts occurring across Arab Gulf countries (Alotaibi & Dighe, 2023; Alotaibi & Siden, 2023). For other areas of the world who may be starting a foundation of pediatric palliative care, the Kingdom of Saudi Arabia is demonstrating a measured, evidence-based approach to establishing a foundation upon which to flourish.
Additional References
- Khan S, Sadler K, Sidiqui K, AlYami H, AlGarni M, Al-Kofide A, Podda A. Physicians’ Knowledge, Attitudes, and Perception Toward Pediatric Palliative Care in Saudi Arabia: A National Exploratory Survey. Palliat Med Rep. 2023 Jul 21;4(1):185-192.
- AlThaqafi W, Alqahtani BM, Khan MA, AlAbdulkarim AA, Alkhars AZ. Demographic Data, Clinical Characteristics, and Outcomes of Pediatric Patients Who Received Palliative Care in King Abdullah Specialized Children’s Hospital, Riyadh, Kingdom of Saudi Arabia. Cureus. 2023 Nov 18;15(11):e49032.
- Sadler K, Khan S, AlGhamdi K, Alyami HH, Nancarrow L. Addressing 10 Myths About Pediatric Palliative Care. Am J Hosp Palliat Care. 2024 Feb;41(2):193-202.
- Alotaibi Q, Dighe M. Assessing the Need for Pediatric Palliative Care in the Six Arab Gulf Cooperation Council Countries. Palliat Med Rep. 2023 Feb 16;4(1):36-40.
- Alotaibi Q, Siden H. An agenda to develop Pediatric Palliative care programs to serve children with life-threatening and life-limiting conditions in the Gulf Cooperation Council countries. Palliat Care Soc Pract. 2023 Sep 29;17:26323524231201868.
View the 2025 Issue #7 Citation List in Library
View a PDF of the 2025 Issue #7 Citation List
View Commentary 2025 Issue #7 on Zenodo
Trends in Pediatric Palliative Care Citation List; 2025; Issue 7
Click the links above to view this months full list in desired format.
AlThaqafi, W., Alayed, S., Fraihat, L., Sharha, I., Alsubayyil, M., & Alageel, Y. (2025). Measuring the Level of Confidence and Identifying Gaps in Providing Palliative Care Services to Children by the Adult Palliative Care Team in the Kingdom of Saudi Arabia.Journal of Palliative Medicine, 28, 4.
Andrist, E., Firn, J. I., Kirschen, M. P., Sederstrom, N. O., Kon, A. A., Fowler, J. C., Wolfe, A. H. J., McIlroy, M. E., Kiragu, A., Morrison, W. E., Tegtmeyer, K., Agarwal, K., Pope, T. M., Vercler, C. J., Winiarski, D., McGowan, N., Leber, S. M., Carroll, C. L., & Flori, H. R. (2025). Themes in the Management of Pediatric Brain Death Contestation: Exploratory Qualitative Work From Multidisciplinary Health Professionals in the United States.Pediatric Critical Care Medicine : A Journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.
Baker, L., Gagne-Loparo, K., Stern, N., Rouchou, B., Remy, A., & Anderson, I. M. (2025). Communicating after the Death of a Child: Bereaved Parent Insights on the GRIEV_ING Framework.Journal of Palliative Medicine.
Bjornerud, E., Steindal, S. A., Hofmann, B. M., Winger, A., Riiser, K., Chen, W., & Holmen, H. (2025). Ethical, legal, and social aspects of health technologies for home-based paediatric palliative care—A systematic review.BMC Palliative Care, 24(1), 139.
Boratynska, M. (2025). When is that moment? The criteria for withdrawing treatment from terminally ill children—In the context of the recurring problem of “passive euthanasia.”Pediatria i Medycyna Rodzinna, 21(1), 1EP – 28.
Boutillier, B., Juneau, A. L., Reichherzer, M., Tremblay, C., & Janvier, A. (2025). Managing moral distress and complex ethical challenges in the NICU.Seminars in Perinatology, 49(3), 152050.
Bradshaw, L., & Williams, S. (2025). THE PHARMACY TECHNICIAN WITHIN A CHILDREN’S HOSPICE: BUILDING NEW ROLES.BMJ Paediatrics Open, 9(Supplement 2), A18EP – A19.
Braybrook, D., Coombes, L., Scott, H. M., Harardottir, D., Roach, A., Bariuan, J., Ellis-Smith, C., Downing, J., Murtagh, F. E. M., Bluebond-Langner, M., Fraser, L. K., Harding, R., & Bristowe, K. (2025). What Constitutes High-Quality Paediatric Palliative Care? A Qualitative Exploration of the Perspectives of Children, Young People, and Parents.The Patient.
Budak, S. E., & Ay Kaatsız, M. A. (2025). “Even though it is difficult, …, is truly worth everything”: A qualitative study on pediatric nurses’ end of life care experiences.Journal of Pediatric Nursing, 82, 82.
Deng, C., Zheng, R., Hong, J., & Guo, Q. (2025). Legacy-making interventions in pediatric palliative care: A mixed methods systematic review.Asia-Pacific Journal of Oncology Nursing, 12, 100694.
Gaskell, C., Crampton, R., Martin, A., Heckford, E., Williams, A., Wiltshire, S., & Taylor, S. (2025). COMMUNITY PAEDIATRIC MEDICATION LISTS FOR CHILDREN WITH COMPLEX AND PALLIATIVE CARE NEEDS.BMJ Paediatrics Open, 9(Supplement 2), A11.
Grekov, K., Batten, J., Tate, T., Anand, K. J. S., Magnus, D., & Halley, M. C. (2025). Exploring how claims of “suffering” are operationalized in pediatric critical care.Journal of Pain and Symptom Management.
Hernandez Moscoso, B. S., & Torralba Rosello, J. M. (2025). “What about Your Social Worker?” Professionals and Families’ Perceptions of Pediatric Palliative Care Social Work: A Qualitative Study.Journal of Social Work in End-of-Life & Palliative Care, 1EP – 18.
Lamb, C. M., & Cook, K. (2025). Death talk and access gaps: Applying a personalist lens to address inequities for children with complex conditions at the end of life.Monash Bioethics Review.
Lin, S. C., Kao, C. Y., Chen, H. F., Mudiyanselage, S. P. K., Lu, H. Y., & Huang, M. C. (2025). Disparities in specialist palliative care for Taiwanese children and young adults impacted by local digital development and noncancer diagnoses.Journal of Hospital Medicine.
Lisakowski, A., Frenkert, J., Hartenstein-Pinter, A., Kubek, L., Zernikow, B., & Wager, J. (2025). Effective communication in pediatric palliative care: Evaluation of two educational videos.Patient Education and Counseling, 137, 108790.
Mercante, A., & Owens, J. (2025). A call to action: The need to recognize the importance of sleep for children and adolescents in pediatric palliative care.Sleep.
Merkel, E. C., Meyer, C. L., Yusuf, R. A., Morrison, C. F., Kelly, D. L., Levine, D. R., LeBlanc, T. W., Ullrich, C. K., & El-Jawahri, A. (2025). What do pediatric transplant physicians think about palliative care? Results from a national survey study.Bone Marrow Transplantation, e26996.
Molina-Gomez, K., Cuervo-Suarez, M. I., Henao, K. M., Gomez, I. E., Proano, C., Duque, N., Jaramillo, M. L., Marmolejo, M., Burbano, L. S., & Garcia-Quintero, X. (2025). Pediatric palliative care in neonates: A cross-sectional study from a high-complexity hospital in Latin America. Neopalped study.BMC Palliative Care, 24(1), 141.
Mowery, A., & Brunelli, L. (2025). The Role of Genetic Testing in Palliative Care Decisions for Critically Ill Newborns.Children, 12(5), 634.
Payne, E., Silverio, S. A., Fellows, R. E., Heywood, L. E., Burgess, K., Storey, C., Oza, M., Kent-Nye, F. E., Haddad, L., Sampson, A., & Knighting, K. (2025). From mourning to memorialising—A lasting connection through remembrance: The role of memory making in preserving the identity of parenthood amongst women who have suffered a perinatal bereavement.Women & Birth, 38(3), N.PAG-N.PAG.
Perez-Pozuelo, J. M., Pereira-Afonso, M. R., Hernandez-Iglesias, S., Checa-Penalver, A., Garcia-Valdivieso, I., Lopez-Gonzalez, A., & Gomez-Cantarino, S. (2025). Effectiveness of Non-Pharmacological Methods in Reducing Pain in Paediatric Patients and the Role of Nursing; A Systematic Review.SSRN.
Porter, A. S., Heneghan, C., & Snaman, J. M. (2025). Is it Time to Rethink Pediatric Palliative Care Staffing to Optimize Access?Journal of Pain and Symptom Management.
Ramadan, O. M. E., Hafiz, A. H., Katooa, N. E., Alghamdi, N. M., Elsharkawy, N. B., Abdelaziz, E. M., Mohamed, N. A., & Baraka, N. I. M. (2025). Nurturing compassion in neonatal end-of-life care: A qualitative exploration of palliative care nurses’ roles and experiences.BMC Nursing, 24(1), 580.
Riedy, H., Lyons, K., Casarett, D. J., Jordan, M., Monroe, B. S., Eckert, E., & Ma, J. E. (2025). Content and comprehensiveness of goals-of-care documentation in pediatric patients.Journal of Pain and Symptom Management.
Rybka, M., Cetin, A., DeWitt, A., Griffis, H., Naim, M., & Walter, J. (2025). Caring for chronically critically ill children in the pediatric cardiac intensive care unit: Correlations of a primary palliative care intervention with clinical outcomes.Progress in Pediatric Cardiology, 78, 101839.
Sadler, K., Altarifi, L., Callaghan, S., Khan, S., AlGhamdi, K., Alayed, T. M., Alhuthil, R., Alshehri, A. A., Altassan, M. A., Aldhari, M., Hussain, H. H., & Baragaa, M. (2025). Intensity of Care at the End-of-Life in Pediatrics: A Single Center Analysis With Implications for Advanced Care Planning in Saudi Arabia.The American Journal of Hospice & Palliative Care, 10499091251339615.
Shaw, K., Kenyon, S., Pease, A., Spry, J., Routledge, G., & Garstang, J. J. (2025). Child death review: Understanding variations in practice using normalisation process theory.BMJ Paediatrics Open, 9(1).
Sinnathamby, A. (2024). DEVELOPING AN EVIDENCE-BASED COMPASSIONATE EXTUBATION PROTOCOL IN AN ASIAN PAEDIATRIC INTENSIVE CARE UNIT.BMJ Supportive and Palliative Care, 14(Supplement 3), A54.
Tappauf, N., Lamers, Y., Sham, H. P., & Piper, H. G. (2025). Multiomics profiling and parenteral nutrition weaning in pediatric patients with intestinal failure: A longitudinal cohort study.Journal of Parenteral and Enteral Nutrition, 49(4), 451EP – 459.
Ting, J., Snaman, J. M., Sinha, A., Puccetti, D. F., Decourcey, D. D., & Moynihan, K. M. (2025). Navigating Time-Critical Decisions in Pediatric Critical Care: A Proactive Communication Guide for Cultivating Prognostic Awareness.Journal of Palliative Medicine.
Ulloa, Z. G., García-Quintero, X., Nakashima-Paniagua, Y., Rivas, S., Gana, M. A., Torelli, A. E., Gutiérrez, H. M., Lopera, J., García, W. C. G., Chacón, S., Bernadá, M., & McNeil, M. J. (n.d.). Evolving Models of Community-Based Pediatric Palliative Care in Eight Countries Across Latin America.Journal of Pain & Symptom Management, e747–e754.
van Driessche, A., La Rondelle, L., Boelen, P. A., Brunetta, J., Kars, M. C., Spuij, M., Nijhof, S. L., & Fahner, J. C. (2025). Characteristics of child development in the context of serious illness: A scoping review.BMC Palliative Care, 24(1), 133.
van Teunenbroek, K. C., Mulder, R. L., Verhagen, A. A. E., Kremer, L. C. M., Falkenburg, J. L., Honig-Mazer, P., van den Bergh, E. M. M., Kars, M. C., Verheijden, J. M. A., Rippen, H., Borggreve, B. C. M., Kochen, E. M., Michiels, E. M. C., van Roosmalen, T., van Wageningen, N., M, W. A., Berkhout, L., Karen, G. C. B. B. H. K., Looijestijn, J., … Gijsbertsen-Kool, A. (2025). A Dutch clinical practice guideline for paediatric palliative care: A systematic review and recommendations on psychosocial care including preloss and bereavement care.BMC Palliative Care, 24(1), 147.
Wickramasinghe, L. (2024). THEMATIC ANALYSIS OF THE EXPERIENCES OF HOME HOSPICE PROFESSIONALS WHEN COMMUNICATING WITH YOUNG CHILDREN OF TERMINALLY ILL PATIENTS.BMJ Supportive and Palliative Care, 14(Supplement 3), A15EP – A16.
Wilpers, A. B., Kobler, K., Schafer, R., Wilpers, M., Zeme, M., Batten, J., Canty, L., & Lorch, S. A. (2025). Dobbs-driven expansion of perinatal palliative care: A scoping review of the evidence and its limits.Health Affairs Scholar, 3(5), qxaf081.