Gail Andrews – Canuck Place Children’s Hospice and University of British Columbia Vancouver, BC, Canada
Gail is a registered nurse working in research at the University of British Columbia, and a bedside nurse at Canuck Place Children’s Hospice. Through her dual roles in clinical nursing and academics, Gail brings a unique perspective on the care of children with life-limiting illnesses and the families who support them. Gail is recognized for her commitment to pediatric palliative care, interdisciplinary collaboration, and advancing excellence in nursing practice across clinical and research environments.
Featured Article
Bishop, C., Nguyen, V., D’Souza, T., Yu, D., Johnson, L., & Keller, S. (2026). Finding comfort in complexity: The role of palliative care in children with leukodystrophy. Molecular Genetics and Metabolism, 148(2), 110117. (2044905543).
While there are numerous research studies highlighting how earlier, integrated and specialized pediatric palliative care (PPC) can improve care for children (Marcus et al., 2019), this month’s articles exemplify how this service is rolling out around the world and show how important expanding into new clinical settings and more diagnostic areas can be for implementation. This month’s articles also highlight how shifting the narrative can impact the service uptake.
Over time palliative care consult has been known to help with challenging symptoms, creating trust among clinical teams and assisting with advance care planning. Not all clinicians, however, refer to palliative care when a child could benefit from the service. Our feature article this month in Trends by Bishop and colleagues explores referral rates specifically for leukodystrophy (Bishop et al., 2026). About 30% of children with leukodystrophy die at an early age. Early onset and aggressive forms of leukodystrophy are a major factor for dying at a young age. However, research from a chart review study of 206 children with leukodystrophy in an 8-year period found that only about a quarter of those (26%) had a referral to palliative care recorded in their medical records. The average referral time was 2.4 years from diagnosis to consult. This interval spans about half of their short lives (average age at death was 5.2 years) although presumably dying children were seen sooner. Of the 53 children with consults, 41 died and of those, 63% had been seen by palliative care. This represents a fraction of children who could have benefitted from symptom management, clinical communication and advance care planning, regardless of whether they died. Furthermore, those who did have a consult waited years if they got one at all. Nearly 14% of the children who died of leukodystrophy in this sample did not have a palliative care consult.
Another chart review study looked at implementation of palliative care for children with heart failure over a five-year period in Saudi Arabia (Sadler et al., 2026). In that study, of 47 children treated for heart failure, over a third (43%) died during the study period. In Saudi Arabia and parts of the Middle East, newly developed palliative care programs are slowly being implemented in those countries (Alotaibi et al., 2023). This developmental stage offers a unique window to study both the implementation, and assess effectiveness, of integration into usual clinical care.
One last relevant article described shifting the narrative to include earlier and more impactful PPC (Stewart et al., 2026). This excellent assessment of language and framing science examines how thinking about palliative care is important and how challenges abound in narrative and current communication models. These challenges often prevent referral to palliative care, impacting clinician behaviour and parental understanding of the services offered.
Early adopters of palliative care services such as psychosocial oncology teams were instrumental in supporting palliative care in children (Kaye et al., 2016). These oncology teams, with their integration of research and advanced study trials, were able to identify those diagnostic groups who were at high likelihood of dying at a young age. As children live longer with medical complexity, research into life expectancy and the use of palliative care in children with genetic and neurological disease is advancing alongside. This research is emerging and hopeful for our field.
In my bedside role as a pediatric hospice nurse, children with rare diseases are sometimes known to us for years. Children come for respite when they are “well” and we enjoy time in the hospice with their families, with siblings playing alongside them in the garden playground. This way the clinical team builds a relationship with the family and can ideally provide better care for them when crisis hits. Introducing palliative care early for children with leukodystrophy would be beneficial for these children, who are also candidates for respite care given their fragility. PPC can also help alleviate the heavy burden of caregivers who care for them.
New diagnostic groups, new clinical settings and shifting the narrative can all result in earlier palliative care referrals, which may ameliorate caregiver, patient and sibling psychosocial factors while also helping with pain and symptom management. There is a long way to go, and we continue to see disparities in diagnostic, clinical location and language and framing conventions.
References
- 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. doi: 10.1089/pmr.2022.0037. PMID: 36910455; PMCID: PMC9994439.
- Bishop, C., Nguyen, V., D’Souza, T., Yu, D., Johnson, L., & Keller, S. (2026). Finding comfort in complexity: The role of palliative care in children with leukodystrophy. Molecular Genetics and Metabolism, 148(2), 110117. (2044905543).
- Sadler, K., Alghamdi, W., Albert-Brotons, D. C., El Haddad, M., Alyami, M. M., Khan, S., Alghamdi, K., Alyami, H. H., Alali, Y. A., & Hakami, E. A. (2026). Integrating Palliative Care in the Care of Children With Heart Failure: Findings and Recommendations From a 5-Year Experience in a Tertiary Care Center. Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association, 28(3), 124–131.
- Kaye, E. C., Friebert, S., & Baker, J. N. (2016). Early integration of palliative care for children with high-risk cancer and their families. Pediatric Blood & Cancer, 63(4), 593–597.
- Marcus KL, Santos G, Ciapponi A, Comandé D, Bilodeau M, Wolfe J, Dussel V. Impact of Specialized Pediatric Palliative Care: A Systematic Review. J Pain Symptom Manage. 2020 Feb;59(2):339-364.e10. doi: 10.1016/j.jpainsymman.2019.08.005. Epub 2019 Aug 9. PMID: 31404638; PMCID: PMC6989377.
- Stewart, C. E., Vare, C., Kerr-Elliott, T., Rennie, T., Githinji, C., Skinner, E., Titherington, E., & Aidoo, E. (2026). Shifting the narrative: Reframing paediatric palliative care to enable earlier engagement. BMJ Paediatrics Open, 10(1).
TRENDS 2026; Issue #06
Click the links below to view this months full list in desired format.
Aburn, G., Moeke-Maxwell, T., Gott, M., Drake, R., & Raphael, D. (2026). Te Whare Kaiao-an Indigenous-informed paediatric palliative care framework for Aotearoa New Zealand. The New Zealand Medical Journal, 139(1633), 12EP – 22. (650924767).
Akard, T. F., Dietrich, M. S., Gilmer, M. J., Lense, M., Hills, T., & Hendricks-Ferguson, V. (2026). Feasibility and Acceptability of Remote Music Therapy for Cognitively Impaired Children Receiving Palliative/Complex Care and Their Families. Journal of Palliative Medicine, 10966218261441211. (650897802).
Alexander, S., St Louis, J., Rapoport, A., Horan, R., Korenblum, C., Weingarten, K., & Widger, K. (2026). Feasibility, Acceptability, and Impact of Using Virtual Reality Social Support for Adolescents Living with Serious Illness. Journal of Palliative Medicine, 10966218261428902. (650660063).
Alm, A., & Beck, M. (2026). Being There: Danish Nurses’ Lived Experiences of Companionship With Families in Home-Based Paediatric Palliative Care in Regional Settings. Scandinavian Journal of Caring Sciences, 40(2), e70239. (650925664).
Bailey, L., & Goodman, K. (2026). A call for equity-informed pediatric palliative care in Canada. Paediatrics & Child Health, pxag010.
Beck, M., Missel, M., Bergenholz, H., & van Manen, M. A. (2026). Bereavement Groups for Parents Who Have Lost a Child: A Qualitative Study of Parental Experiences in a Danish Context. Scandinavian Journal of Caring Sciences, 40(2), e70232. (650771385).
Betke, M., Stiel, S., & Schwabe, S. (2026). Bereavement Counsellors’ Experiences Supporting the Families of Deceased Children Within a German Bereavement Network– A Qualitative Interview Study. Omega: Journal of Death & Dying, 93(1), 98–123. (192433861).
Bishop, C., Nguyen, V., D’Souza, T., Yu, D., Johnson, L., & Keller, S. (2026). Finding comfort in complexity: The role of palliative care in children with leukodystrophy. Molecular Genetics and Metabolism, 148(2), 110117. (2044905543).
Boutros, I., Tapp, D., Couture, V., Maroun, E., & Hyland-Carignan, C. A. (2026). A mixed-methods systematic review of interventions for parents during and after neonatal end of life in the neonatal intensive care unit. International Journal of Palliative Nursing, 32(4), 194EP – 206. (650926440).
Brickmann, C., Ackermann, K., Kruger, M., Mommsen, H., Tschositsch, K., Scholz, C., Hauer, J., Oberhoffer-Fritz, R., Ewert, P., & Kleinpass, A. S. (2026). Expert collaboration for safe perinatal stabilization of neonates with select critical congenital heart defects at non-cardiac centers. BMC Pediatrics, 26(1), 371. (2044976003).
Burke, J. G., Checo, G., Agarwal, A., Hawley, B., Scheunemann, L. P., Grassmyer, C. M., Hackwelder, T., Leinbach, M., Pentz, M., Weber, A., Indralingam, R., & Baumann, S. (2026). Parental Grief and Bereavement: Exploring the Impact of Collaboratively Created Films on Audience Members. Health Promotion Practice, 27(3), 435–439. (192342397).
Caminiti, F., Lumia, C., Tomaselli, S., Colciago, E., Serafini, M., Fumagalli, S., & Nespoli, A. (2026). Midwifery practice in perinatal palliative care: A scoping review and conceptual framework. Women and Birth, 39(3), 102206. (2044960482).
Cassidy, C., Dwyer, C., Fraser, L., & Robinson, A. (2026). Because we care: Exploring care and well-being with siblings of children with life-limiting conditions through philosophical inquiry. Childhood and Philosophy, 22, 1–26.
Catapano, F., Sperti, G., Bisulli, M., Corvaglia, L. T., Locatelli, C., & Parravicini, E. (2026). The First 13 Years of “Percorso Giacomo”: Patients’ Outcomes. Children, 13(3), 389. (192663952).
Crnjak, E., Kerns, M., Stevens, M., O’Connell, B., & Mednick, L. (2026). Enhancing psychosocial care at end of life: A novel simulation training program. Palliative & Supportive Care, 24, e102. (650846295).
Damps, M., Rybojad, B., Byrska-Maciejasz, E., Gajda, M., Mierzewska-Schmidt, M., Bartkowska-Sniatkowska, A., Zielinska, M., Kubica-Cielinska, A., Pagowska-Klimek, I., Aftyka, A., Wiktor, L., & Duda, I. (2026). Implementation of Polish guidelines on futile therapy protocols in pediatric intensive care units: A multicenter retrospective review. Scientific Reports.
Denhup, C. (2026). “Trying to Find North”: Fathers Voice the Nature of Their Bereavement. Omega: Journal of Death & Dying, 93(1), 349–371. (192433873).
Fernández-Alcántara, M., Madrid-Valero, J. J., Esteban-Burgos, A. A., Congost-Maestre, N., Oliver-Roig, A., & Cabañero-Martínez, M. J. (2025). Spanish adaptation of the Perinatal Grief Intensity Scale. Journal of Reproductive and Infant Psychology, 43(5), 1276–1287. (2024-65793-001).
Fonville, V., & Perrin, M. (2026). Lactation During Perinatal Bereavement From the Perspective of Families and Support Providers: A Scoping Review. Journal of Human Lactation, 42(1), 49–62. (192476475).
French, M., Walshe, C., & Garner, A. (2026). How many children have palliative care needs and which of them are less likely to be actively seen by services? A cross-sectional analysis of survey data. BMJ Paediatrics Open, 10(1). (650873857).
Gershfeld-Litvin, A., Ressler, I., & Avidan, O. S. (2025). Experiences of pregnancy loss in fathers of existing children: A qualitative study. Death Studies, 49(9), 1202–1210. (2025-15971-001).
Hakami, E. A. (2026). Integrating Palliative Care in the Care of Children With Heart Failure: Findings and Recommendations From a 5-Year Experience in a Tertiary Care Center. Journal of Hospice & Palliative Nursing, 28(3), 124–131.
Jennings, O., Leitao, S., & O’Donoghue, K. (2026). Mind Yourself So You Can Mind Me; The Role of Parental Behaviour in Perinatal Death on the Surviving Sibling’s Grief. Omega: Journal of Death & Dying, 93(1), 439–457. (192433878).
Kosiv, K. A., Wong, B. G., Anderson, R. A., & Carey, J. C. (2026). Current prenatal counseling of congenital heart disease in trisomy 18, pediatric cardiologists’ perspective: A Fetal Heart Society Research Collaborative Study. Journal of Perinatology, 46(3), 377EP – 382. (2036170031).
Lang, Z., Lipman, S. A., Roudijk, B., Stalmeier, P., & Attema, A. E. (2026). The Effect of Perspective, Duration, and Views on Death on the Valuation of Severe Health States. Value in Health, 29(4), 659–667.
Martisella, M., Marquis, M.-A., Stypulkowski, A., Payot, A., Bourque, C. J., & Bouthillier, M.-E. (2026). Medical assistance in dying in pediatrics: A retrospective case study of clinical interactions and implications for team training. Paediatrics & Child Health, pxag016.
McDonough, M. R., Leone-Sheehan, D., & Kellogg, M. (2026). Father’s experience of fetal death: A secondary analysis. Death Studies. (2027-42555-001).
Michelson, K. N., Hayes, A., Barrera, L., James, K., Miller, C., Guzman, Z., Torres, N., McNicholas, A., & Becker, A. B. (2026). Pilot Study of a Bereavement Referral Program for Parents Following Perinatal Death. Journal of Pain and Symptom Management. (2044530568).
Mosetti, S. (2026). Telling is Caring: Prioritizing the Best Interests of Dying Children. HEC Forum: An Interdisciplinary Journal on Hospitals’ Ethical and Legal Issues. (650820550).
Nevin, S. M., Kelada, L., Elvidge, K. L., Maack, M., Hilton, G., Kershaw, J., Ros, E. D., Briggs, N. E., Farrar, M. A., & Wakefield, C. E. (2026). Navigating the complex landscape of childhood dementia: Caregiver psychological well-being, grief, and health system challenges. Journal of Pediatric Psychology, 51(1), 60–72. (192319937).
Pant, S., Kelly, M. P., Morales, M. M., Thayyil, S., & Lavender, T. (2026). Lived experiences of healthcare personnel in supporting parents around neonatal death: Encounters, challenges and meaning. BMJ Paediatrics Open, 10(1).
Parrish, M., Nolte, L., & Duff, S. (2026). Journeys Through the Terrain of Grief: Bereaved Parents’ Narratives Across Time. Illness, Crisis & Loss, 34(2), 315–334. (192177244).
Redman, H., Thomas, F., & Clancy, M. (2026). What are fathers’ experiences of neonatal-perinatal palliative care? A Scoping review. BMC Palliative Care. (650925893).
Rosa, M., Santini, A., De Tommasi, V., & Benini, F. (2026). Measuring the psychological symptoms of pediatric palliative care patients and their caregivers: A scoping review of available instruments. BMC Psychology.
Stewart, C. E., Vare, C., Kerr-Elliott, T., Rennie, T., Githinji, C., Skinner, E., Titherington, E., & Aidoo, E. (2026). Shifting the narrative: Reframing paediatric palliative care to enable earlier engagement. BMJ Paediatrics Open, 10(1).
Takayama, A., Kawaguchi, A., Irie, W., Miyashita, M., Yamaguchi, T., Yotani, N., & Shiwaku, H. (2026). Japanese Version of the Quality of Dying and Death in the PICU Instrument: Development and Validation in Eight Centers in Japan. Pediatric Critical Care Medicine: A Journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies. (650804236).
Vatne, T. M., Pedersen, E. O., & Lie, H. C. (2026). Reactions, Adaptation, and Support Needs of Siblings of Children with a Life-Limiting Disease: The Parents’ Experiences. Children, 13(5), 620.