Anna Mercante – Department of Biomedical and Neuromotor Sciences (DIBINEM), University of Bologna, Bologna, Italy
Anna is a Child Neuropsychiatrist specializing in pediatric neurology. Her recent research activity focuses on addressing neurological and psychological challenges faced by children and young adults with complex healthcare needs, to promote their well-being and quality of life.
Featured Article
Boström, K., Dojan,T., Tholking, T., Gehrke, L., Rosendahl, C., Voltz, R., & Kremeike, K.(2025). Talking aboutdesire to die: Talking past each other? A framework analysis of interviewtriads with patients, informal caregivers, and health professionals. Palliative& Supportive Care, 23, e83.
Commentary
Boström et al. offer valuable insight into the dynamics of communication surrounding a profoundly sensitive end-of-life topic: the desire to die. Through semi-structured interviews with seriously ill adult patients, their informal caregivers, and multi-professional health staff, the authors conducted a rigorous framework analysis, identifying four key interpretative themes: reception of open communication, shared reality, content that makes death understandable, and communication strategies. Ultimately, they delineated three distinct communicative types, each bearing direct relevance for clinical practice.i
The “Between the Lines” type, marked by avoidance and emotional withdrawal, often leads to discontent and unspoken suffering, making it a scenario that may benefit most from proactive, empathetic outreach by clinicians. The “Matter of Fact” type, while seemingly efficient, emphasizes practical matters and risks overlooking latent desires to die. The “Past Each Other” type reflects well-intentioned yet misaligned communication strategies that fragment dialogue and contribute to exclusion.
This study presents a novel perspective on how communication can either enable or obstruct meaningful engagement with dying, surfacing neglected aspects of discussing death in life-limiting conditions while prompting critical questions and a reexamination of current practices.
But what happens when the patient is a child?
In pediatric palliative care (PPC), taboos surrounding death are stronger, making end-of-life conversations even more difficult. Although PPC is grounded in patient- and family-centered care that emphasizes openness and the active involvement of the child to foster understanding and shared decision-making,1,2 these ideals are frequently constrained by prognostic uncertainty, parental difficulty in accepting incurability, and the child’s cognitive or developmental stage. Cultural norms, emotional stakes, and protective instincts to shield the child from suffering add further complexity, often delaying or preventing disclosure.
Yet evidence consistently shows that this exclusion, though well-intentioned, can cause confusion, anger, and isolation.3 Children often sense when information is withheld, and many are aware of their impending death even if adults remain silent.4 Sensitive, age-appropriate conversations can instead promote alignment between the child’s awareness and their lived reality, helping to reduce emotional conflict and preserve trust in caregivers.5
The above communication types seem to resonate powerfully also with PPC. A “Between the Lines” approach may manifest as parental reticence, leaving the child to interpret non-verbal cues and unanswered questions. This situation can create a harmful complicity with clinicians that hinders transparency and open communication. A “Matter of Fact” style may emerge when clinicians, focusing on treatment logistics, inadvertently overlook the child’s or family’s existential fears. The “Past Each Other” type maps onto situations where all parties wish for openness but pursue it through divergent strategies: parents may filter information; clinicians may favor direct disclosure. At the same time, children may alternate between seeking and avoiding clarity.
Recognizing these communication patterns can help professionals move toward more empathetic and constructive dialogues —even in the face of death.
Therefore, PPC professionals play a critical role as interpreters and mediators in facilitating open and appropriate discussions about death and dying by: (1) exploring the child’s willingness to engage, recognizing that silence does not necessarily indicate disinterest; (2) exploring caregivers’ wishes and rationale regarding disclosure; (3) navigating tensions between parental fears of harm and the child’s right to information; (4) supporting both parents and children through these conversations with concrete emotional tools and personalized strategies; and (5) relieving families of the responsibility to protect one another or remain in fixed roles, thereby enabling trust and mutual understanding.
Each dialogue should reflect the child’s age, the family’s beliefs, and communication preferences, with discussions prioritizing the child’s best interests and tailoring information to their desire. Guiding principles include beneficence, non-maleficence, respect for autonomy, and cultural sensitivity. Honesty—aligned with the child’s readiness and the family’s capacity to engage, and framed in hope for living as well as possible— is essential. Support should be continuous and non-directive, respecting family dynamics while guiding parents through conversations and preparing for the child’s emotional responses. Communication must unfold as an evolving process over time rather than as a singular disclosure. The timing, frequency, intensity, and content of these conversations should empower the family, following individualized decisions about whether and how to engage the child. To equip clinicians for this complex work, specialist training and ongoing supervision are indispensable.
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i The authors aimed to investigate communication types involved when talking about death and the desire to die. Through a triangled perspective (patient, caregiver, clinician), they identified three types and highlighted their limits. The key point is to make clinicians aware of these possible complex dynamics to prevent their negative consequences. They indeed report: “We do not consider it a problem that we did not identify a type with ‘perfect’ communication (i.e., including health professionals, informal caregivers, and patients, perceived as open and satisfying and resulting in correct transmission of information and completely shared reality). Rather, we suggest that even instances of “failed” communication in our results support the notion of communication as always co-constructed and interpretative: people are simultaneously sender and receiver in a process of mutual influence.”
Additional References
- Stroh JT, Carter BS. Shared decision-making in pediatric palliativecare. Curr Probl Pediatr Adolesc Health Care. 2024 Jan;54(1):101551. doi:10.1016/j.cppeds.2023.101551. Epub 2023 Dec 26. PMID: 38151395.
- Benini F, Papadatou D, Bernadá M, Craig F, De Zen L, Downing J, DrakeR, Friedrichsdorf S, Garros D, Giacomelli L, Lacerda A, Lazzarin P, MarcegliaS, Marston J, Muckaden MA, Papa S, Parravicini E, Pellegatta F, Wolfe J. International Standards for Pediatric Palliative Care: From IMPaCCT toGO-PPaCS. J Pain Symptom Manage. 2022 May;63(5):e529-e543. doi:10.1016/j.jpainsymman.2021.12.031. Epub 2022 Jan 11. PMID: 35031506.
- Aldridge J, Shimmon K, Miller M, Fraser LK, Wright B. ‘I can’t tell mychild they are dying’. Helping parents have conversations with their child. Arch Dis Child Educ Pract Ed. 2017 Aug;102(4):182-187. doi:10.1136/archdischild-2016-311974. Epub 2017 Mar 13. PMID: 28289038
- Kreicbergs U, Valdimarsdóttir U, Onelöv E,Henter JI, Steineck G. Talking about death with children who have severemalignant disease. N Engl J Med. 2004 Sep 16;351(12):1175-86. doi:10.1056/NEJMoa040366. PMID: 15371575.
- van der Geest IM, van den Heuvel-Eibrink MM, van Vliet LM, Pluijm SM,Streng IC, Michiels EM, Pieters R, Darlington AS. Talking about Death withChildren with Incurable Cancer: Perspectives from Parents. J Pediatr. 2015Dec;167(6):1320-6. doi: 10.1016/j.jpeds.2015.08.066. Epub 2015 Oct 1. PMID:26427964.Casau and Beach. Words Matter: Strategies to Reduce Bias in Electronic Health Records. Center for Health Care Strategies. October 2022. https://www.chcs.org/media/Words-Matter-Strategies-to-Reduce-Bias-in-Electronic-Health-Records_102022.pdf
Trends in Pediatric Palliative Care Citation List; 2025; Issue 9
Click the links below to view this months full list in desired format.
Abdelaal, M.,Parsons, H., al-Awamer, A., Mosher, P., Lapenskie, J., Fung, S. G., Yoo, S.,Tanuseputro, P., & Downar, J. (2025). Palliative Care Involvement andEnd-of-Life Care Intensity Among Adolescents and Young Adults with NonmalignantIllnesses: A Population-Based Cohort Study in Ontario, Canada. Journalof Palliative Medicine, 28, 6.
Aburn, D. G.,Moeke-Maxwell, D. T., Gott, P. M., Drake, D. R., & Raphael, D. D. (2025). Developing andadapting the Education in Palliative and End-of-Life Care (EPEC)-Pediatricscurriculum for Aotearoa (New Zealand). Journal of Pain and SymptomManagement.
Appleyard, J.,Copnell, B., Haling, A., Manning, J. C., & Butler, A. E. (2025). Multi-stakeholderperspectives into the experiences of siblings when a child is critically ill: Aqualitative systematic review. Intensive & Critical Care Nursing,87, 103920.
Bally, J. M.G., Burles, M., Widyaratne, A., Spurr, V. A., Hodgson-Viden, H., & Sinha,R. (2025). SupportingIndigenous Family Caregivers of Children with Life-Threatening andLife-Limiting Illness in One Canadian Province: Healthcare Providers’Perspectives. Children, 12(7), 895.
Benedetti, F.,Giacomelli, L., Papa, S., Verzeletti, V., & Agosto, C. (2025). Navigating Cultural and Religious Differences in Communication with Neurologically Ill Children Requiring Palliative Care.
Boström, K., Dojan,T., Tholking, T., Gehrke, L., Rosendahl, C., Voltz, R., & Kremeike, K.(2025). Talking aboutdesire to die: Talking past each other? A framework analysis of interviewtriads with patients, informal caregivers, and health professionals. Palliative& Supportive Care, 23, e83.
Briere, J.,Cole, A., Lajoie, D., Kennedy, K. O., Gulla, E., Toole, C., DeGrazia, M., &Hickey, P. A. (2025). Strategiesand Tools Used by Pediatric Nurses and Nurse Practitioners in Guiding FamiliesFrom Curative to Comfort Care. Dimensions of Critical Care Nursing: DCCN,44(5), 262–276.
Brock, K. E.,Trowbridge, A., Arora, G., Patneaude, A. M., Van Breemen, C., & Goloff, N.(2025). The Networkof Pediatric Palliative Care Educators: Cultivating Community in InterprofessionalEducation. Journal of Pain and Symptom Management.
Chia, K. H.(2025). EquippingEducational Therapists for Pediatric Palliative Care (PPC): A Holistic Approachto Support Terminally-Ill Children. Asian Journal of Pediatric Research,15(6), 21–36.
Djaogol, T.,Gautier, J., Martinez, H., Pouly, G., Sondarjee, I., Frappaz, D., Perol, D.,& Schell, M. (2025). Paediatricpalliative care medical hotline: Retrospective database study. BMJSupportive and Palliative Care, spcare-2025.
Drago, M. J.,Raviv, G., Weintraub, A., & Guttmann, K. (2025). Maternal fetal medicine,obstetric, and neonatology perspectives on joint prenatal counseling atperiviable gestational ages. Journal of Perinatology, 45(6),745EP – 754.
Evans, H. E.,Ralph, M., Jaaniste, T., Wakefield, C. E., & Sansom-Daly, U. M. (2025). The Rhythm of Connection:Describing the Heartbeats Intervention for Patients and Families ReceivingPaediatric Palliative Care. Children (Basel, Switzerland), 12(7).
Garstang, J.,Pease, A., Shaw, K., Spry, J., Routledge, G., & Kenyon, S. (2025). Family Involvement in Learning FromExpected Child Deaths: A Qualitative Study of UK Parents. Child: Care,Health and Development, 51(4), e70134.
Glaser Chodik,N., & Baum, N. (2025). The experience of menfollowing stillbirth: The case of Israeli bereaved fathers. Journal ofReproductive and Infant Psychology, 43(2), 443–458.
Gonzalez, M.J., Sanchez, B. G., & Fernandez, F. P. G. (2025). Palliative Sedation inPediatric Patients.
Gonzalez-Gil,M. T., Alcon-Najera, S., & Oter-Quintana, C. (2025). Research poems: Exploringthe experience of parents of children who have died in the paediatric intensivecare unit. Enfermeria Clinica, 502255.
Grailey, K.,Roland, J., Lambert, M., Fontana, G., Dale-Harris, L., Williams, I., Shaw, A.,Neves, A. L., & Downing, J. (2025). What are the greatestopportunities for innovation to improve access to and quality of palliativecare services to children? A qualitative interview study. BMC PalliativeCare, 24(1), 184.
HizanuDumitrache, M., Duceac Covrig, M., Mîndru, D. E., Plesea Condratovici, A.,Mitrea, G., Elkan, E. M., Curici, A., Gafton, B., & Duceac, L. D. (2025). The Need for PediatricPalliative Care in Romania: A Retrospective Study (2022–2023) Based onQuantitative Research and Analysis of Secondary Statistical Data. Medicina,61(7).
Howe, E. G.,3rd. (2025). Teaching ofMedical Ethics Regarding Children, Death and Dying, and Research at theUniformed Services University of the Health Sciences (USUHS) During Its FirstFifty Years. Military Medicine, 190(7–8), 1386–1390.
Jaaniste, T.,Helyar, M., Eamens, M., Smeal, T., Coombs, S., & Mherekumombe, M. (2025). Challenges, Benefits, andFuture Directions of Pediatric Home-Based End-of-Life Care: A QualitativeStudy. Journal of Palliative Care, 8258597251341039.
Jansen, G.,Irmscher, L., Jagoda, S., Hinkelbein, J., May, T. W., Popp, J., & Rehberg,S. (2025). Prediction ofperi-operative mortality in care of preterm children in non-cardiac surgery.BMC Anesthesiology, 25(1), 1–11.
Lin, M.,Horner, C., Butler, K., Bosworth, O., Kiernan, T., Nelson, J., Pierce, K.,Dore, D., Eison, D., Kazmi, S., & Zawistowski, C. (n.d.). Impact of PalliativeCare on Psychosocial and Spiritual Outcomes in the Neonatal Intensive CareUnit. Journal of Pain and Symptom Management.
Loucka, M.,Zindulkova, M., Dvorakova, H. M., & Stanickova, Z. (2025). Priorities for research inperinatal palliative care: An international Delphi study. BMC PalliativeCare, 24(1), 202.
Loughnan, S.A., Lancaster, A., Crocker, S., Astell, C., Griffin, A., Wojcieszek, A. M.,Boyle, F. M., Ellwood, D., Dean, J., Horey, D., Callander, E., Jackson, C.,Seeho, S., Shand, A., & Flenady, V. (2025). Living with Loss: Studyprotocol for a randomized controlled trial evaluating an internet-basedperinatal bereavement program for parents following stillbirth and neonataldeath. Journal of Loss & Trauma, 30(5), 708–732.
Mahat-Shamir,M., & Huri-Rotman, S. (2025). Losinga child with a severe developmental intellectual disability: Israeli mothers’ accounts.The American Journal of Orthopsychiatry, 95(3), 312–321.
Massaad, M.,Downing, J., Allard, E., & Friedel, M. (2025). Exploring pediatricpalliative care in Luxembourg: A mixed-methods study. BMC PalliativeCare, 24(1), 170.
Mercante, A.,Siden, H., Baker, J. N., Papadatou, D., Abu-Saad Huijer, H., Zernikow, B.,Hauer, J., Benini, F., for the Neuro-Irritability and Pediatric Palliative CareGroup, Alotaibi, Q., Althoff, R. R., Aragon, J., Bergsträsser, E., Bolognani,M., Boone, K., Brotman, M. A., Brown, H., Catrine, K., Roberta Cilio, M., …Zanin, A. (2025). InsightsFrom the International Consensus on Neuro-Irritability in Pediatric PalliativeCare. Neurology Clinical Practice, 15(5), e200525.
Peat, G.,McLorie, E. V., Barrett, L., Weatherly, H., Hinde, S., Lake Walker, G., Noyes,J., Oddie, S., Vasudevan, C., Feltbower, R., Phillips, B., Hewitt, C. E., Hain,R., Subramanian, G., Haynes, A., Fraser, L., Murtagh, F., & Hackett, J.(2025). Parents’experiences of paediatric end-of-life care in the UK: a multisite qualitativestudy. BMJ Supportive & Palliative Care.
Prendergast,L., Crane, E., Bray, N., & Noyes, J. (2025). Economic costs of health andsocial care for a child with a life-limiting condition in their last year oflife: A systematic review. BMJ Paediatrics Open, 9(1),e003526.
Safarifard, R.,Kiernan, G., Corcoran, Y., Courtney, E., Mitchell, J., Akard, T., &Lambert, V. (2025). Memory-makinginterventions for children with life-threatening or life-limiting conditionsand their families: A systematic review of evidence and implications forpractice. Palliative Medicine, 2692163251353006.
Scendoni, R.,& De Micco, F. (2025). The“gray zone” in pediatric end-of-life care: Bioethical and medico-legalreflections. Frontiers in Pediatrics, 13, 1599837.
Semple, A.,Finlay, M., Ali, A., Tsiandoulas, K., Chakravarti, V., Buchanan, F., Widger,K., Diskin, C., & Nelson, K. E. (2025). Components of Family Meetingsfor Hospitalized Children With Serious Illness: A Scoping Review. HospitalPediatrics, 15(8), e392–e403.
Sierakowski,E., Corcoran, C. D., Moore, D., Kronaizl, S., Peterson, T., Masih, J., Harman,B., & Harousseau, M. (n.d.). Length of Stay byPediatric Hospice Diagnoses: A Retrospective Experience from a Single Center.Journal of Pain and Symptom Management.
Thermaenius,I., Holm, M., Arestedt, K., Udo, C., Alvariza, A., Lundberg, T., Wallin, L.,& Lovgren, M. (2025). Implementingthe Family Talk Intervention among families with a severely ill parent or childwith palliative care needs- a longitudinal study of the perspectives ofhospital social workers. Frontiers in Health Services, 5,1527431.
Vaerland, I.E., Johansen, A. B. G., & Lavik, M. H. (2025). “That Is What We Have Left ofHer”: The Significance of Transitional Objects After the Death of an Infant ina Norwegian Context. Qualitative Health Research, 35(6),626–639.
Vazquez Colon,Z., Robinson, L., Lopez-Colon, D., Joong, A., Waldman, E., Delgado-Corcoran,C., May, L. J., Cousino, M. K., Peng, D. M., Lukich, S., Blume, E. D., Machado,D. S., & M Moynihan, K. (2025). End-of-Life Course andSubspecialty Palliative Care Involvement for Children on Mechanical CirculatorySupport: Five-Center Retrospective Cohort Study from the United States,2015-2020. Pediatric Critical Care Medicine: A Journal of the Society ofCritical Care Medicine and the World Federation of Pediatric Intensive andCritical Care Societies.
Verhoeven, R.,Kooi, E. M. W., Obermann-Borst, S. A., Labrie, N. H. M., Geurtzen, R.,Verhagen, A. A. E., & Hulscher, J. B. F. (2025). Empowering Parents in NeonatalDecision Making Using Q-Methodology: Development Of a Decision GuidanceFramework for Necrotizing Enterocolitis. SSRN.
Weaver, M. S.,Smith, S. M., Torkildson, C., Fisher, D., Hawley, B., Ware, A., Davis, H.,Williams, C. S. P., & Lindley, L. C. (2025). The State of PediatricConcurrent Hospice Care in the United States. Pediatrics,e2025071610.
Winter, M. C.,Zhou, A. X., Laksana, E., Aczon, M. D., Ledbetter, D. R., Avesar, M.,Burkiewicz, K., Chandnani, H. K., Fainberg, N., Hsu, S., McCrory, M. C.,Morrow, K. R., Noguchi, A., O’Brien C, E., Ojha, A., Pringle, C., Ross, P. A.,Shah, J., Shah, S., … Wetzel, R. C. (2025). Death One Hour AfterTerminal Extubation in Children: Validation of a Machine Learning Model toPredict Cardiac Death After Withdrawal of Life-Sustaining Treatment in aMulticenter Cohort, 2009-2021. Pediatric Critical Care Medicine,3772.
Younge, T.,Moore, H., Thompkins, J. D., & Lyon, M. E. (2025). Parental Goals of Care forChildren with Rare Diseases: A Content Analysis of Pediatric Advance CarePlanning Conversations. The American Journal of Hospice & PalliativeCare, 10499091251356237.