Darlene Durand, Parent,Kim Faulkner – Canuck Place Family Member and BCIT, BC, Canada
Kim is a mother, undergraduate nursing educator, and an active community member. In 2025, her 5-year-old-son, Tommy, died after being supported by the Canuck Place Children’s Hospice and BCCH Complex Care programs.
Esther Lee – BC Children’s Hospital, Canuck Place Children’s Hospice and University of British Columbia, Vancouver, BC, Canada
Dr. Esther Lee is a palliative medicine specialist at Canuck Place Children’s Hospice and pediatrician with the Complex Care Program at BC Children’s Hospital. She is passionate about advocating for families of children with medical complexity, improving communication in serious illness and crisis, promoting humanity in medicine. Outside of work, Esther enjoys exploring every aisle at Costco and birdwatching – finding joy in everyday moments.
Featured Articles
Mauser, D., Gazzaneo, M., Santucci, G., Klick, J., & Jump, J. (2025). Three Ifs and a Maybe: The Role of a Reality Check. Journal of Pain and Symptom Management, 69(5), e437–e438.
Intro and study description
Although more children with medical complexity now receive a genetic diagnosis, prognosis often remains uncertain. As a result, families and healthcare teams may struggle with care decisions, with parents often carrying the decision-making burden.
At the 2025 Annual Assembly of Hospice and Palliative Care (USA), David Mauser and colleagues from Baylor College of Medicine presented the “Three Ifs and a Maybe” framework. It serves as a reality check for complex, multi-step care plans, helping determine whether a patient’s or family’s goals are medically achievable. The framework can also improve shared understanding of prognosis and reduce the burden of decision-making.
For example, for a patient receiving intensive life-sustaining therapy:
1. If… obesity is managed,
2. If… rehabilitation improves severe deconditioning,
3. If… the patient can participate in activities of daily living,
4. Maybe… the patient can be assessed for lung transplantation.
Mauser explains that this framework is used after understanding the child, family, and clinical situation. It is best applied in a multidisciplinary meeting, with each specialty identifying its own “if” conditions and establishing clear timelines for reassessment. A case series is planned for publication.
Commentary by a parent: Kim Faulkner
My son, Tommy, died in 2025, after living with medical complexity, including Lennox-Gastaut Syndrome. Like many children with medical complexity, a shift in his health during a prolonged PICU stay (5 months before he died), necessitated a team meeting. In this meeting, I asked for a palliative approach alongside fighting his damaging seizures. I’m grateful for my nursing background, which helped me see his decline, but I often think of other families who do not have this experience and how they navigate shifting complexity.
It was clear Tommy’s team members were on different pages in predicting his trajectory. An approach of “Three Ifs and a Maybe” may have helped navigate next steps, particularly for my partner, whose hope for a full recovery remained. In this approach, members of Tommy’s team could have shared what was needed before discussing more aggressive interventions. Using this model, it could have looked like this: If Tommy responds well to the next anti-seizure medication, if Tommy starts tolerating feeds and gaining weight, and if Tommy’s respiratory needs stabilize, then maybe we can explore a more aggressive approach for his seizures. Although this approach was not used in our case, I am grateful that we ultimately came together with a shared plan that best honoured our son.
Finally, this approach may be particularly helpful for families whose child ultimately dies. While my family’s grief cannot be lessened, as life without Tommy will always hurt, our grief could have been significantly complex if we were also left wondering whether we explored all the possible options for him to have a chance at a thriving life. For medically complex families like mine, this structured model could possibly help in navigating difficult choices amidst uncertainty and hopefully provide some peace through understanding why certain interventions could not happen.
Commentary by a physician: Esther Lee
Working in pediatric palliative and complex care requires close coordination among many teams, especially when caring for children with significant symptom burden and uncertain prognoses. Mauser’s framework offers a clear, shared approach that helps families and healthcare teams align around realistic goals and the steps needed to achieve them. It made me reflect on how many families might benefit from understanding that we were still at the first “if,” with only a small chance of reaching the third “if” and very small chance of the “maybe.”
Too often, no single team guides the decision-making process, and teams wait for families to indicate when they are ready to decide. Many parents have told me that these are among the most heartbreaking decisions they will ever face. This framework supports genuine shared decision-making and may help prevent experiences like the one Kim describes with Tommy.
An important consideration is that some families prefer a model of informed non-dissent rather than informed consent, relying on clinicians to recommend decisions that best reflect the family’s values and goals (Kon 2009, Real de Asua 2019). In these situations, even greater coordination and consistency among healthcare providers is essential to ensure recommendations remain aligned with what matters most to the child and family.
References:
- Kon, A. A. (2009). The “Window of Opportunity:” Helping Parents Make the Most Difficult Decision They Will Ever Face Using an Informed Non-Dissent Model. The American Journal of Bioethics, 9(4), 55–56.
- Real De Asúa, D., Lee, K., Koch, P., De Melo-Martín, I., & Bibler, T. (2019). We don’t need unilateral DNRs: Taking informed non-dissent one step further. Journal of Medical Ethics, 45(5), 314–317.
TRENDS 2026; Issue #09
Click the links below to view this months full list in desired format.
Al-Shehri, H., Alotaibi, A., Alanazi, B., Alshehri, A., Alajlan, A., Alsulami, M., Alshehri, R., Alshehri, F., Alshammari, R. A., Alrashed, K., Alhumaidan, R., Al-Ghadeer, A., Almutairi, A. M., & Alzayed, A. (2026). Neonatal nurses’ perceptions of providing palliative care in neonatal intensive care units in Saudi Arabia. Medicine, 105(29), e49821. (651785027).
Brady, S., McNamee-Tweed, B., Zhang, Y. S., Blenitsky, N., & Parravicini, E. (2026). Outcomes of patients with trisomy 13 and 18 in a center with a dedicated perinatal palliative care program. Journal of Perinatology.
Broden Arciprete, E. G., Michelson, K. N., Feder, S. L., Marr, J. W., Al-Roub, N., Gouda, S. R., Jones, A. M., Schopen, A. B., Tapper, A. K., Pasek, T. A., Kelly, R. J., Morris, L. R., Olszewski, A. E., Gallagher, C., Taylor, J. A., McCarthy, S. B., Snaman, J. M., & Ananth, P. (2026). Noticing and responding to end-of-life suffering in the PICU: A co-designed conceptual framework for nursing practice. Intensive & Critical Care Nursing, 96, 104498. (651775560).
Campbell, S., Delaney, L., Rovensky, N., Kent, R., Matthiesen, A., Carnevale, F. A., & Macdonald, M. E. (2026). How are agency and autonomy understood in children’s palliative and end-of-life care?: A narrative review. Palliative Care and Social Practice, 20.
Campbell, S., Rovensky, N., Kent, R., Delaney, L., Carnevale, F. A., & Macdonald, M. E. (2026). Listening to Young People on Childhood Death: A Youth-Focused Participatory Approach to Children’s Palliative and End-of-Life Research and Policymaking. Children and Society.
Ellard, H., Kreicbergs, U., Wray, J., Lewis, C., Arthurs, O. J., & Simcock, I. C. (2026). Navigating arrested parenthood: Bereaved parents’ and healthcare professionals’ experiences of less-invasive autopsy using micro-focus computed tomography. Midwifery, 104931.
Hocher, R., Ruthke, N., Busse, T. S., Ghori, S., Krumpelmann, S., Messerschmidt, C., Nathrath, M., Vaillant, V., Voelker, T., Voelzke, A., Zimmermann, J., & Deckers, M. (2026). Pediatric Palliative Symptom Categories for (e)PROM in specialized pediatric palliative home care. Journal of Pain and Symptom Management. (651777302).
Jeon, Y., Jung, C., Jeong, D., An, J., Kim, Y. S., Jang, W., Lee, I. K., Lee, B., & Park, J. D. (2026). End-of-Life Care Patterns by Disease Trajectory in Pediatric Intensive Care Units: A Multicenter Study. Pediatrics International, 68(1).
Johnston, E. E., Tefera, R., Nyamao, T., Martinez, I., Bhayani, S., Mendoza, E., Ananth, P., Whittle, S., Sadler, E., James, K., Moynihan, K., Bhatia, S., & Asch, S. (2026). Quality Measures for End-of-Life in Children with Heart Disease: A Modified Delphi Approach. Journal of Pain and Symptom Management.
Kirakosyan, V., Daneshgar-Pironneau, S., & Bacqué, M. F. (2026). Family experiences of paediatric palliative care during hospital-at-home: A systematic review. Archives de Pediatrie, 33(6).
Kmetec, S., Veber, A., Magusa, I., Krel, C., & Reljic, N. M. (2026). Nurses’ Experiences with Spiritual Care in Paediatric Palliative Care: A Systematic Review. Healthcare (Switzerland), 14(13), 1994. (2047614259).
Lin, M., Bosworth, O., Kazmi, S., Kiernan, T., Horner, C., Nelson, J., Pierce, K., Dore, D., Eison, D., & Zawistowski, C. (2026). Impact of palliative care consultation on neonatal end-of-life care utilization. Journal of Perinatology.
Masterson, K., Connolly, M., & Brenner, M. (2026). The lived experiences of paediatric intensive care unit nurses during the initiation of long-term ventilation. Australian Critical Care, 39(4), 101652.
Mauser, D., Gazzaneo, M., Santucci, G., Klick, J., & Jump, J. (2025). Three Ifs and a Maybe: The Role of a Reality Check. Journal of Pain and Symptom Management, 69(5), e437–e438.
McParland, J., O’Gorman, B., Victor, J., & Portnoy, S. (2026). Big Thoughts in Little Jars: Memory Days for Families Where a Child has Died. Clinical Child Psychology and Psychiatry.
Mosleh, D., & Gibson, B. E. (2026). Worlds in the making: A posthuman experiment with time, development and disability. Journal of Youth Studies.
Moynihan, K. M., Cashen, K., Daughtrey, H. R., Delgado-Corcoran, C., Robinson, L., Ting, J., Flores, S., Beshish, A. G., Chlebowski, M. M., Batsis, M., Pryce, P., Asfari, A., Sznycer-Taub, N., Karki, K. B., Wakeham, M., Ohman, R. T., Shutes, B. L., Narasimhulu, S. S., Schramm, J. E., … Mastropietro, C. W. (2026). Death and Cardiac Disease in Pediatric Hospitals and the Role of Subspecialty Palliative Care. Pediatrics. (651774807).
Nourmusavi Nasab, S., Smith, C. L., & McLaughlan, R. (2025). The space between life and death: Monumentality and the architecture of dying in paediatric palliative care. Journal of Architecture, 30(8), 1274–1292.
Page, B., Jarvis, S. W., & Fraser, L. K. (2026). Increasing complexity in children with life-limiting conditions in England: An analysis of national routine data. Archives of Disease in Childhood.
Pestian, T., Ellakula, J. C., Awtrey, E., Carle, A. C., Winick, N., Kanov, J., & Thienprayoon, R. (2026). Clinician experiences of organisational compassion in healthcare: A qualitative study. BMJ Open, 16(5).
Prendin, A., Mellucci, C., Strini, V., Cerrone, V., Andretta, V., Damiani, G., & Specchia, M. L. (2026). Digital Health Perspectives and Opportunities in Pediatric Palliative Care: Results From a Focus Group. Nursing Forum, 2026(1).
Priyanti, R. P., Asri, Chen, Y.-W., & Lin, S.-C. (2026). Nurses’ stressful experiences in providing palliative and end-of-life care for children: A meta-synthesis. Palliative and Supportive Care, 24, e191.
Riegel, M., Ranse, K., Butler, A. E., Ekanayake, K., & Buckley, T. (2026). Effectiveness of Family-Focused End of Life and Bereavement Interventions Across Neonatal, Paediatric, and Adult Intensive Care: An Overview of Reviews. Journal of Clinical Nursing. (651755428).
Riva de la Hoz, B., de Miguel, M. E., Gorbe, C. L., Tristancho-Perez, A., Garcia-Palop, B., Corro, B. G., Nogue-Pujadas, E., Bosch-Peligero, M., Zurbano, R. J., Yunquera-Romero, L., & Garcia-Lopez, I. (2026). Subcutaneous Drug Administration in Pediatric Palliative Home Care: A Multicenter Prospective Study. Journal of Pain & Symptom Management.
Saito, Y., Wakimizu, R., Ozawa, N., & Saito, S. (2026). Effectiveness of an end-of-life family support nursing educational program in neonatal intensive care units. Journal of Neonatal Nursing, 32(4).
Sivakumar, N., Kukora, S., Ginwalla, C., Lakshminrusimha, S., & Rosenthal, J. (2026). Healthcare provider’s perceptions of family values when making end-of-life care decisions for their children: Developing and implementing a survey tool. Palliative Care and Social Practice, 20.
Smith, S., Delamere, T., Fraser, L. K., Murphy, O., May, P., McElligott, F., Devins, M., Horne, T., Rabbitte, M., Guerin, S., O’Hara, S., Dillon, M., & Balfe, J. (2026). Estimating national prevalence of life-limiting conditions amongst infants, children, and adolescents using administrative hospital data in the absence of a unique health identifier; evidence from Ireland. BMC Pediatrics, 26(1).
Torrez, K., Ursua, K., Phillips, H., & Lilitwat, W. (2026). Legacy at the Bedside: A Nurse-Led Evidence-Based Framework for Memory-Making in the Pediatric Intensive Care Unit. Journal of Hospice & Palliative Nursing.
Trae, G., Winger, A., & Nordstrøm, M. (2026). Tailoring support for parents of children in palliative care: Feasibility of the carer support needs assessment tool intervention paediatric in a Norwegian context. Palliative Care and Social Practice, 20.
Weiss, M. J., Siebelink, M. J., Cavazzoni, E., Figini, M. A., Kazzaz, Y., Nadalin, S., Nakagawa, T. A., Scales, A., Dominguez-Gil, B., Oniscu, G. C., Cillo, U., & Martin, D. E. (2026). The Bucharest international European Society for Organ Transplantation consensus on paediatric controlled donation after circulatory determination of death. Transplant International, 39, 16462.
Wells, C. M., Cossich, M., May, R., & Phelan, C. (2026). Palliative care in the neonatal intensive care unit: Qualitative study of parent experiences. BMJ Supportive & Palliative Care. (651709088).
Wilson, S., Vince, S. C., Jarman, H., Johnson, G., Marquinez Vecchione, N. E., Leyland, C., Salf, J., Heer, P. S., Dainty, J., & Keating, L. (2026). Characteristics and Palliative Care Involvement in Patients Dying in Five UK Emergency Departments: A Retrospective Service Evaluation. Open Access Emergency Medicine, 18.