Andrea Cuviello – Phoenix Children’s Hospital, AZ, USA
Andrea is a pediatric palliative oncologist and clinician scientist. Her academic work focuses on early palliative care integration for vulnerable patient populations.
Featured Article
Bertaud, S., Suleman, M., & Wilkinson, D. (2025). Hope pluralism in antenatal palliative care. Journal of Medical Ethics: Journal of the Institute of Medical Ethics, 51(8), 521–525. (2026-94769-004).
Prior to reading Bertaud et al.’s “Hope Pluralism in Antenatal Palliative Care,” the term hope pluralism was not part of my vocabulary – though, in practice, I suspect I had long been engaging in it without naming it. Simply put, hope pluralism refers to the capacity to hold multiple hopes simultaneously. As a palliative oncologist who routinely navigates hope with patients and families in complex and emotionally fraught situations, I was eager to explore the parallels within the rapidly evolving field of antenatal palliative care.
The authors introduce the concept through the case of expectant parents who receive a life-limiting diagnosis for their unborn child. The parents respond with a familiar constellation of emotions: grief, disbelief, denial, and hope – particularly hope that the diagnosis is incorrect and that their child will be born healthy. It is this hope for a miracle that often precipitates moral and ethical distress among medical providers, who may question whether families fully understand the medical information being shared.1 Bertaud and colleagues highlight the tension that arises when clinicians feel compelled to secure parental acknowledgment of a likely negative outcome. Yet hope is widely recognized as a positive coping strategy2 and may even serve a protective function during bereavement.3 The authors therefore pose challenging questions including: Is there such a thing as “bad” or “inappropriate” hope? And can one have too much hope?
Hope is generally defined as a positive orientation toward a desired but uncertain future outcome.4 In contrast, “inappropriate hope” is often understood as hope that does not align with or respond to relevant clinical facts5 – an interpretation that frequently triggers provider distress. But who determines whether a particular hope is inappropriate? As antenatal medicine advances, particularly with the development of novel in utero interventions,6,7 prognostic uncertainty persists and the boundaries of what is possible continue to shift. Patients and families retain the right to articulate hopes that differ from those of their medical teams.
How, then, should clinicians respond when hope appears misaligned with medical reality? This is where hope pluralism offers guidance. By asking families, “What are you hoping for?” and “What else are you hoping for?” clinicians can uncover the layered values and priorities that shape decision-making. Too often, clinicians fear that sharing prognostic information will extinguish hope. Evidence suggests otherwise. In fact, creating space for multiple hopes can help patients and families clarify realistic goals and, when necessary, transition from one goal to another.8,9 Importantly, acknowledging unrealistic hopes does not obligate clinicians to deliver medically nonbeneficial care – a distinction that may lie at the heart of much provider moral distress.
Recently, I was consulted on the case of a young adult undergoing bone marrow transplantation for a benign hematologic condition. The theoretical probability of cure exceeded 90%, and the patient’s goals were correspondingly aggressive. However, several post-transplant complications ensued, the most life-threatening of which was a disseminated fungal infection. As the clinical course worsened, discordance emerged among medical teams. Arguments for increasingly aggressive interventions centered on the singular hope for a miracle. Yet other hopes had been articulated: the desire for comfort and for meaningful interaction with family. It became distressing to witness how alignment with one dominant hope shaped clinical decisions to such a degree.
This experience left me reflecting on the balance between honoring hope and upholding our medical and ethical responsibilities. Perhaps it is not patients and families whose hopes require scrutiny, but rather we, as clinicians, who must examine how we interpret and respond to them. Monitoring our own reactions to so-called “inappropriate” hope may allow us to better support families while maintaining professional integrity.
I believe hope is a beautiful and powerful force. It can offer strength and peace; it can create space for uncertainty in a way that feels humane and generous; it allows me to align meaningfully with those I serve. I do not believe I have the authority to judge another’s hope as appropriate or inappropriate. I do, however, believe that hope should not cloud my commitment to providing ethically sound and medically responsible care. Learning to hold that balance, I suspect, is a lifelong endeavor.
References
- Feudtner C, Carroll KW, Hexem KR, Silberman J, Kang TI, Kazak AE. Parental hopeful patterns of thinking, emotions, and pediatric palliative care decision making: a prospective cohort study. Archives of pediatrics & adolescent medicine. 2010;164(9):831-839.
- Roscigno CI, Savage TA, Kavanaugh K, et al. Divergent views of hope influencing communications between parents and hospital providers. Qualitative health research. 2012;22(9):1232-1246.
- Beng TS, Xin CA, Ying YK, et al. Hope in palliative care: a thematic analysis. Journal of palliative care. 2022;37(2):177-182.
- de Andrade Alvarenga W, DeMontigny F, Zeghiche S, Verdon C, Nascimento LC. Experience of hope: An exploratory research with bereaved mothers following perinatal death. Women and Birth. 2021;34(4):e426-e434.
- Hill DL, Feudtner C. Hope, hopefulness, and pediatric palliative care. 2016;
- Nekolaichuk CL, Bruera E. On the nature of hope in palliative care. Journal of palliative care. 1998;14(1):36-42.
- Varthaliti A, Pergialiotis V, Theodora M, et al. Advances in Fetal Surgery: A Narrative Review of Therapeutic Interventions and Future Directions. Medicina. 2025;61(7):1136.
- Yasin R, Azhar M, Allahuddin Z, Das JK, Bhutta ZA. Antenatal care strategies to improve perinatal and newborn outcomes. Neonatology. 2025;122(Suppl. 1):13-31.
- Levine DR, Cuviello A, Nelson C, Lu Z, Mandrell BN, Baker JN. Hope-colored glasses: perceptions of prognosis among pediatric oncology patients and their parents. JCO Oncology Practice. 2021;17(6):e730-e739.
TRENDS 2026; Issue #03
Click the links below to view this months full list in desired format.
Adlung, C., Niehot, C., & van Capelle, C. (2025). How can telehealth be used to enhance the quality of care in home-based pediatric palliative care: Protocol for a systematic literature review.medRxiv. (2042572211).
Alladin, A., Pfeiffer, B., Nino, P., Mosal, S., Nares, M., Alba-Sandoval, M., Solano, J. P., Gelman, B., Cantwell, G. P., & Jeyapalan, A. (2026). Race, Ethnicity, and Social Determinants of Health in PICU Mode of Death: Single-Center Retrospective Cohort Study. Critical Care Explorations, 8(1).
Bertaud, S., Suleman, M., & Wilkinson, D. (2025). Hope pluralism in antenatal palliative care. Journal of Medical Ethics: Journal of the Institute of Medical Ethics, 51(8), 521–525. (2026-94769-004).
Cole, A. C. (2025). A Parent’s Perspective on Systemic Gaps in Supporting Complex Pediatric Care at Home. Journal of Patient Experience, 12, 1–3. (190255194).
Cortezzo, D. E., Callahan, K. P., Chaudhari, B. P., Weiss, E. M., Wojcik, M. H., Acharya, K., Schlegel, A. B., Sullivan, K. M., & Fry, J. T. (2025). Managing the Uncertainty of “Precision” While Navigating Goals of Care: A Framework for Collaborative Interpretation of Complex Genomic Testing Results in Critically-Ill Neonates.Children (Basel, Switzerland), 13(1).
Cuartero-Castañer, M. E., Cañas-Lerma, A. J., Bagur, S., & Verger, S. (2026). Foundations of Social Work Practice in Paediatric Palliative Care From the Perspective of the Patient, the Family and the Multidisciplinary Team: A Systematic Review. Health & Social Care in the Community, 2026(1), 8849933.
Eli, K., Bernstein, C. J., Harlock, J., Huxley, C. J., Walsh, J., Blanchard, H., Hawkes, C. A., Perkins, G. D., Turner, C., Griffiths, F., & Slowther, A.-M. (2025). Using the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) in a community setting: Does it facilitate best interests decision-making? Journal of Medical Ethics: Journal of the Institute of Medical Ethics, 51(8), 526–532. (2026-94769-005).
Goloff, N., Sultanem, L., Fong-Leboeuf, A., Grant, E., Kinsella, E. A., Humphreys, J., Williams, R., Verstegen, D., & Kwolek, E. (2026). Discovering What Works Well: Exploring Primary Palliative Care Education in Pediatrics Residency Programs in Canada. Academic Pediatrics, 26(1), 103131.
Gouda, S. R., Snaman, J. M., D’Anna, R., Upham, E. J., Dahlberg, S. E., Rosenberg, A. R., & DeCourcey, D. D. (2026). Pediatric Palliative Care Consultation in the PICU Following Out-of-Hospital Cardiac Arrest: Analysis of the U.S. Pediatric Health Information Systems Database, 2013-2023. Pediatric Critical Care Medicine : A Journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies, 27(1), 14–24.
Hizanu Dumitrache, M., Stafie, L., Plesea-Condratovici, A., Mindru, D. E., Salim, C., Elkan, E. M., Duceac Covrig, M., Matei, M. N., Dinu, C. A., & Duceac, L. D. (2025). Types of Challenges and Barriers in Accessing Paediatric Palliative Care in Romania: A Qualitative Study Based on Focus Groups Guided by a Semi-Structured Discussion Guide. Medicina (Kaunas, Lithuania), 62(1).
Hunter, R., Pilling, A., Warren, H., Fox, K., & McCormack, M. (2025). A preliminary evaluation of a group compassion-focused intervention for individuals affected by perinatal loss. Frontiers in Psychiatry, 16. (2027-05882-001).
Jairam, J. A., Brown, H. K., Diong, C., Berger, H., Guan, J., Cohen, E., & Ray, J. G. (2026). Change in maternal income status following stillbirth, neonatal death and severe neonatal morbidity. Matern Health Neonatol Perinatol, 12(1), 3. (41566388).
Latham, R., Williams, K., Guest, K., Paize, F., & Lotto, R. (2026). Parental experiences of perinatal loss, with a focus on hospice provision: A thematic analysis. Palliative & Supportive Care, 24, e22. (649848656).
Low, S. Z. Q., Lim, J. K. B., Sultana, R., Lee, J. H., Lim, B. Y. L., & Ang, L. B. (2025). Epidemiology of inpatient paediatric mortalities from 2011 to 2020: A single centre study.Critical Public Health, 35(Supplement 1), 48EP – 49. (649898615).
Luitingh, T. L., Prentice, T. M., Rowe, J., Rotin, L., Heywood, M., & Vemuri, S. (2026). Memory making during bereavement care following the death of a child: A survey exploring parental experiences.Palliative Medicine, 40(1), 143–151.
Lysecki, D. L., Callen, J., Humphreys, J., Sutherland, K., Halderen, C. van, Meer, S. V., & Zuniga-Villanueva, G. (2025). Specialist paediatric palliative care program development in the standard-of-care era Open Access. Paediatrics & Child Health (1205-7088), 30(8), 723–730. (190386446).
Mackley, M. P., Dickson, M. A., Szuto, A., Anderson, J., Chitayat, D., Hayeems, R. Z., Mendoza-Londono, R., Ng, E., Offringa, M., Wang, Y. W., Ly, L. G., & Chad, L. (2026). Experiencing acute genomic care: Perspectives from parents in the neonatal and paediatric intensive care units towards rapid genomic sequencing.European Journal of Human Genetics.
Martinsen, L. J., Holmen, H., Steindal, S. A., & Winger, A. (2026). Exploring parents’ perspectives on health technology to support communication in home-based pediatric palliative care: A qualitative study. BMC Palliative Care.
Martz, K., Mirpuri, K. K., Malone, S., & Kolmar, A. (2026). Multiprofessional Clinician Perspectives on Communicating about Brain Death in Children. Journal of Pain and Symptom Management.
Mauser, D., Bartiss, M., Lipsitz, J., Sawyer, K., Carpenter, A., Crawford, C., Franklin, N., Coleman, R., & Casas, J. (2025). Implementing a Best Practice Guideline for Withdrawing Life Sustaining Therapies at a Large Pediatric Hospital. Journal of Pain and Symptom Management. (649718817).
Molati, A., Safarifard, R., Nicholson, E., Nevin, M., & Lambert, V. (2025). Engaging Children and Young People in Pediatric Palliative Care Research: A Scoping Review Protocol of Patient and Public Involvement Practices.HRB Open Research, 8, 107.
Monfort Belenguer, L., Piolatti Luna, A., Lázaro Carreño, M. I., Cantavella Pons, T., & Villar Vera, C. (2026). Sleep disorders in children managed in the pediatric palliative care unit of a tertiary hospital. Anales de Pediatría (English Edition), 104(1), 504084.
Rosenstein, E., Wilson, J., & Perazzo, S. (2025). A Quality Improvement Approach to Perinatal Palliative Care: Using Standardized Criteria and Education to Increase Early NICU Palliative Care Consultation.Advances in Neonatal Care : Official Journal of the National Association of Neonatal Nurses. (649793991).
Rossen, L., Opie, J. E., & O’Dea, G. (2026). A Mother’s Voice: The Construction of Maternal Identity Following Perinatal Loss. Omega: Journal of Death & Dying, 92(3), 1559–1581. (190662577).
Safarifard, R., Molati, A., Corcoran, Y., Kiernan, G., Courtney, E., Mitchell, J., Akard, T. F., Moore, G., & Lambert, V. (2025). Digital storytelling as a memory-making intervention for children and families in paediatric palliative care in Ireland: An adaptation study. Frontiers in Public Health, 13, 1690798.
Santini, A., Marinetto, A., Grigolon, E., Fasson, A., Schiavon, M., D’Angelo, I., Moro, N., Roverato, B., Lazzarin, P., & Benini, F. (2026). Training Healthcare Assistants for School-Based Care of Children Receiving Paediatric Palliative Care: A Post-Training Evaluation. Children (Basel, Switzerland), 13(1).
Santini, A., Marinetto, A., Papadatou, D., & Benini, F. (2026). Understanding Maternal Role in Caring for Children with Severe Cognitive Impairment in Paediatric Palliative Care: A Qualitative Pilot Study. Children (Basel, Switzerland),13(1).
Sebastiani, A., Tiozzo, E., Marti, F., Salata, M., & Facchinetti, G. (2026). Narrative Medicine to Enhance the Well-Being of Caregivers in the Care of Pediatric Patients with Complex or Serious Illnesses: A Systematic Review. Journal of Palliative Medicine, 10966218251410545.
Shin, E. A., & Kim, E. J. (2026). End-of-life care stress in korean pediatric nurses: A cross-sectional analysis of related perceptions, attitudes, and self-efficacy.PLOS ONE, 21(1 January), e0340466. (2043011918).
Sun, V., Coombs, S., Armitage, N., Dowling, M., & Jaaniste, T. (2026). Actual and Preferred Location of Death for Children Known to a Palliative Care Service. Omega, 302228251415138. (649880161).
Tooten, S., Hermens, R. P. M. G., Verhoeven, M., Vierhoven, E. M., Boulakhrif, F., Reintjes, J. M., Willemsen, M. A. A. P., Aris-Meijer, J. L., Fahner, J. C., Engel, M., Kars, M. C., Ahout, I. M. L., & Deuning-Smit, E. (2026). Pediatric advance care planning: A mixed-methods evaluation of documentation and sharing in current practice. BMC Palliative Care.
Urbanska, K. A., Jarosz-Lesz, A. A., Wasek-Buko, M. D., Naworska, B. M., & Drosdzol-Cop, A. B. (2025). Perinatal palliative care in Poland: Current legal status, organization, standards and guidelines. Palliative Medicine in Practice, 19(4), 306EP – 311. (2037583212).
Varallo, G., Mercante, A., Baldini, V., Gnazzo, M., Testoni, C., Benini, F., Amarri, S., Scorza, M., Rubichi, S., Pizza, F., & Plazzi, G. (2026). Understanding Sleep Challenges in Pediatric Palliative Care: A Patient-Focused Scoping Review and Implications for Practice.J Clin Med, 15(2). (41598378).
Wenzel, S. C. (2026). Implementing Education for Community Adult Hospice Nurses to Expand Pediatric Hospice and Palliative Care. Journal of Hospice and Palliative Nursing: JHPN : The Official Journal of the Hospice and Palliative Nurses Association, 28(1), 34–40.