Pediatric Serious Illness & Family Decision-Making

Skip anything

Every question is optional. No one has to retell painful events, name a diagnosis, or choose a religion or identity to begin.

Pause or stop

Stop at any point. Nothing is sent anywhere, and nothing is shared unless the person chooses it in the sharing review.

Whose words

Record who said each thing: the person, a caregiver or surrogate, or a professional. A caregiver's needs get their own field.

Support to take part

Extra time, a quieter place, pictures, an interpreter or a trusted person can help someone say what matters. Ask what helps.

Barriers are not preferences

Cost, travel, work, housing, caring for others and digital access are written down as barriers, not as what the person wants.

Meaning, religious or not

Hope, purpose, faith, relationships and identity can be part of the conversation if the person wants. None is assumed.

• Pediatrician or pediatric specialist: The illness, treatment options and what to expect.
• Children's nurse: Day-to-day care and questions between visits.
• Pediatric palliative care team: Comfort, symptom care and planning ahead, where available.
• Child life or play specialist: Helping children understand and cope, in ways that fit their age.
• Psychologist or social worker: Family support, siblings and practical needs.
• Chaplain or spiritual-care provider: Meaning, distress, hope and relationships, for people of any faith or none.
• Interpreter or communication specialist: Language and communication support so the person's own words come through.
• People the person chooses: Family, friends, or a community or faith contact, only if the person wants them. Never assumed safe, available or wanted.

Roles, titles and training differ by country and service. Not every role exists everywhere.

A small set of places chosen for contrast, not a ranking or a representative survey: Global, South Africa and Uganda, Pakistan, Lebanon, Malaysia, United Kingdom, Australia, Colombia, Ireland, United States. Each example states what its source establishes and what it does not. Policy on paper is not proof that a service is available.

Guidance, not outcomes:

Shows what is written or recommended. It does not show that it is followed or what results.

Abstract only:

Read from the abstract. The full paper may add or qualify this.

Service as described:

Describes a service when the source was written. Whether it still runs is not verified.

Policy, not outcomes:

Shows what is written or recommended. It does not show that it is followed or what results.

• Global · Guidance · 2018

  WHO's 2018 pediatric palliative care guide says care should honor each child's values and seek the child's uncoerced direction, alongside the family's, about treatments and goals of care.

  Limits: Guidance, not outcomes

  What others could learn: A care conversation can ask the child, not only the parents, what matters and what they understand, at a level fitting their development, and plan in advance how to handle disagreement between child and family.

  Conditions, limits and source

  Conditions that matter:

  Clinicians who can assess a child's developmental stage and communicate at that level; sensitivity to the family's language, culture and trust in the health system; local ethical, cultural and legal guidelines on consent.

  Cannot be inferred:

  Does not set an age at which a child decides; is not law; does not show that any service follows it or that involving children improves outcomes; says nothing on specific countries' consent rules.

  Limits:

  Normative guidance for planners, not an evaluation. The same section says patients below the age of maturity or legal consent may sometimes disagree with parents and sets no age threshold. Table 8 asks clinicians to include the patient in decisions as appropriate to values, culture and developmental stage and to honor relevant legal guidelines.

  Source: World Health Organization, Integrating palliative care and symptom relief into paediatrics: a WHO guide for health-care planners, implementers and managers (Chapter 1, Part 2 'Communication needs', printed p. 7 (PDF p. 15); related rows in Table 8 'Essential competencies in PPC', printed pp. 41-42 (PDF pp. 49-50)). Where: Global. Population: Children and adolescents with life-limiting or life-threatening illness, and their families. Published 2018-09-19; retrieved 2026-10-11.

• South Africa and Uganda · Reported experience · 2023

  In workshops in South Africa and Uganda, most of 32 participating professionals described caregivers who believed not telling children about a life-threatening condition would protect them from pain and upset.

  What others could learn: Professionals can ask caregivers what they fear will happen if a child is told, and say that children are often aware something is wrong; participants also suggested community messages, for example through faith leaders and posters, to open the topic.

  Conditions, limits and source

  Conditions that matter:

  Professional time and training for these conversations; interpreters and agreed words for illness in local languages; attention to cost pressures on families; support for staff, as participants described emotional difficulty.

  Cannot be inferred:

  Not representative of either country or of caregivers; does not show how children fare when told or not told (the study did not measure it); does not describe any group's beliefs as a rule.

  Limits:

  Professionals' views, not those of children or caregivers; recruited English speakers (29 of 32 female); authors note workshops in two countries limit applicability to other sub-Saharan settings and no patients or public were involved in design.

  Source: Authors at University of Oxford, Makerere University and University of KwaZulu-Natal, with partners; BMJ Open, Exploring the experiences of healthcare professionals in South Africa and Uganda around communicating with children about life-threatening conditions: a workshop-based qualitative study to inform the adaptation of communication frameworks for use in these settings (Results, 'Theme 2: obstacles to telling children about the reality of a life-threatening condition' (PMC9884929); abstract summary of obstacles in Results). Where: South Africa and Uganda. Population: Professionals caring for families in which a child or caregiver has a life-threatening condition. Published 2023-01-27; retrieved 2026-10-11.

• Pakistan · Reported experience · 2026

  Authors of a qualitative study of 19 bereaved parents at one Karachi hospital report that siblings suffer from the family impact of a child's serious illness and are often emotionally neglected while parents focus on the sick child.

  What others could learn: Care teams can ask bereaved and still-caring parents about the other children at home and offer sibling-specific support and information, since parents in this study reported a gap in both.

  Conditions, limits and source

  Conditions that matter:

  Staff time for follow-up after a death; access to psychological care and financial support; parents' reports that stigma and norms about grief expression hindered help-seeking.

  Cannot be inferred:

  Not representative of Pakistan; does not measure sibling outcomes; does not show whether any bereavement or sibling service works; parents' reports of norms are not a national cultural rule.

  Limits:

  One hospital; convenience sampling from hospital records; secondary analysis of a larger study; interviews conducted in Urdu and reported in English; the passage is the authors' summary, not a quotation from a participant; siblings were not interviewed.

  Source: Aga Khan University; BMC Palliative Care, Exploring challenges and opportunities in paediatric bereavement care: a qualitative study from a tertiary care hospital in Pakistan (Results, 'Theme 3: supporting siblings through their grief' (PMC13122890)). Where: Pakistan (Karachi). Population: Bereaved parents of children who died of oncologic (n=10) or non-oncologic (n=9) illness 2 to 5 years earlier. Published 2026-03-19; retrieved 2026-10-11.

• Lebanon · Measured outcome · 2023

  In a survey of 105 caregivers of children with cancer at three Lebanese centers, 17.1% had heard of pediatric palliative care, and over 90% endorsed it and its integration at diagnosis after a brief description.

  Limits: Abstract only

  What others could learn: Caregivers may lack accurate information about palliative care before a first conversation, so a short plain description at diagnosis could be tested as a way to open discussion.

  Conditions, limits and source

  Conditions that matter:

  Referral pathways and palliative care services that exist to refer to; language-appropriate materials; time for explanation. The abstract names religious and spiritual engagement as the facilitator most cited by these caregivers and overwhelming negative emotions as the most cited barrier.

  Cannot be inferred:

  Not national; does not show that palliative care was available or used; does not describe the children's views; says nothing about what any tradition requires.

  Limits:

  Abstract only; the full text was not read. Self-reported attitudes after a brief description may not predict later choices. Questionnaire items were partly newly developed. Three centers only. Caregivers, not children, were asked.

  Source: Pediatric Blood & Cancer (Wiley), Unfolding parental knowledge, attitudes, and beliefs toward palliative care for children with cancer (Abstract, Results). Where: Lebanon. Population: Primary caregivers of children with cancer. Published 2023-06-08; retrieved 2026-10-11.

• Malaysia · Reported experience · 2022

  In Kuala Lumpur interviews with 22 bereaved parents from 15 families, some parents said providers avoided medical discussions with their child and that being truthful to the child was hard for parents themselves.

  Limits: Service as described

  What others could learn: Asking parents early how they want the child told, and who will speak with the child directly, may reduce the strain of hiding information; parents who received home palliative care valued it but had not heard of it before referral.

  Conditions, limits and source

  Conditions that matter:

  A home palliative care service reachable by referral (all nine children at the hospital without a specialist service were either not referred or lived where no home service existed); clinician time and communication training; financial support (immigrant parents reported higher charges and no access to citizen-only assistance).

  Cannot be inferred:

  Not representative of Malaysia; does not show how children were affected by being told or not told; does not show that the services described still operate as then.

  Limits:

  Of 75 eligible families, 29 could not be reached and 15 of those contacted (32.6%) consented, so non-participants are unheard. English or Malay speakers only; two centers; deaths 2016 to 2018; authors state findings do not represent other hospitals or home services. Parents' views, not children's.

  Source: Authors at University of Malaya; Indian Journal of Palliative Care, Compassionate Healthcare for Parents of Children with Life-limiting Illnesses: A Qualitative Study (Results, 'Healthcare communication: Honesty and clarity' (PMC9443155); home care findings under 'Home palliative care'). Where: Malaysia (Kuala Lumpur). Population: Bereaved parents (22 parents, 15 families) of children with life-limiting illness who died more than 3 months earlier. Published 2022-07-29; retrieved 2026-10-11.

• United Kingdom · Policy · 1991

  Scottish law gives a person under 16 legal capacity to consent to medical treatment on their own behalf where a qualified medical practitioner attending them judges they can understand its nature and possible consequences.

  Limits: Policy, not outcomes

  What others could learn: Where law ties a minor's consent to understanding, not to a fixed age, the care team can document the capacity judgment and explain it to child and parents; where age cut-offs apply, the child's views may still be heard.

  Conditions, limits and source

  Conditions that matter:

  Clinicians able to assess understanding; documentation practice; professional guidance on assessing capacity; parents and clinicians who know the rule applies.

  Cannot be inferred:

  Does not show how often under-16s consent to serious-illness decisions or how refusal is handled; is not law for England, Wales or Northern Ireland; no outcomes.

  Limits:

  General consent law, not specific to serious illness. Section 2(4) does not itself address refusal of treatment, parental or court override, or children's participation short of legal consent. Capacity rests on one clinician's opinion of the individual child. Law elsewhere in the UK differs and was not compared.

  Source: United Kingdom Parliament; published on legislation.gov.uk by The National Archives, Age of Legal Capacity (Scotland) Act 1991, section 2(4) (Section 2(4); page states it is up to date with changes known to be in force on or before 10 October 2026). Where: United Kingdom (Scotland). Population: Children and young people under 16 in Scotland. Published 1991-07-25; retrieved 2026-10-11.

• Australia · Measured outcome · 2023

  In Sydney interviews with 10 young cancer survivors, 5 parents and 28 health professionals, an American advance care planning guide was rated appropriate by 96.2% overall: 99.6% of professionals, 92.5% of young people, 82.5% of parents.

  What others could learn: Before introducing a planning guide, a team could ask young people and parents which sections feel helpful, stressful or inappropriate. Parents and the Life Support section rated lowest in this study, so sections may need local adaptation.

  Conditions, limits and source

  Conditions that matter:

  Trained clinicians, timing negotiated with the young person, English fluency (non-English readers were excluded), and a guide adapted to local culture and law.

  Cannot be inferred:

  Does not show that using the guide improves care or reduces distress; not representative of Australia or of younger children; says nothing on children's own views below age 15.

  Limits:

  Small purposive, opt-in sample (authors note self-selection toward people comfortable with end-of-life talk); only 15 of 43 were young people or parents, and the overall 96.2% is weighted toward professionals. Appropriateness was rated lower by parents (82.5%) and for the Life Support section (70% overall, 40% of parents). Participants rated a guide in interviews, which is not use in care. Parents also rated helpfulness lowest (mean 2.7 of 5, versus 3.6 for young people and 4.4 for professionals). Guide content not reproduced here.

  Source: Authors at UNSW Sydney and Sydney Children's Hospital; Cancers (MDPI), Adapting the Voicing My CHOiCES Advance Care Planning Communication Guide for Australian Adolescents and Young Adults with Cancer: Appropriateness, Acceptability, and Considerations for Clinical Practice (Results 3.2.1 'Acceptability: Appropriateness of Content' (PMC10093261); abstract gives 96%). Where: Australia (Sydney, New South Wales). Population: Adolescents and young adults aged 15 to 25 with cancer (during or after treatment), their parents, and health professionals. Published 2023-04-03; retrieved 2026-10-11.

• Colombia · Service described in 2024

  A Colombian teaching hospital reports 258 follow-up calls, 150 psychological follow-ups, 79 condolence letters and 10 workshops in its 2019 to 2021 bereavement program; 606 children died in hospital in that period and 319 were assessed.

  Limits: Service as described

  What others could learn: A hospital can build a bereavement program in stages (family assessment, guidelines, staff training, pilot) and keep it going if it enters the hospital budget; follow-up calls and condolence letters are low-cost components.

  Conditions, limits and source

  Conditions that matter:

  Hospital leadership support and budget; staff training (956 trained); data on deceased children to enable follow-up; authors name limited resources, staff and cultural perceptions of death as challenges.

  Cannot be inferred:

  Does not show the program improved bereaved parents' outcomes; not representative of Colombia; not proof the program still operates; no information on siblings' outcomes.

  Limits:

  Activity counts, not outcomes: no measure of parents' grief or satisfaction. Coverage was partial: of 606 child deaths in 2019 to 2021, 319 were assessed and 258 followed up. The abstract's 258 calls match the 258 follow-ups in Table 1, so the unit may be families. Retrospective data from one hospital, with authors noting possible bias. Authors say the hospital later integrated the program into its budget; current status unverified.

  Source: Fundación Valle de Lili with partner institutions; BMC Palliative Care, Implementation of a hospital-based end-of-life and bereavement care program in a latin American middle-income country. A source of light and compassion in the midst of cloudy times (Abstract, Results (PMC11285602); program components in Methods and Table 3). Where: Colombia (Cali). Population: Parents of children under 18 who died in hospital, including perinatal deaths. Published 2024-07-29; retrieved 2026-10-11.

• Ireland · Reported experience · 2025

  In interviews with 20 bereaved parents in the Republic of Ireland and Northern Ireland, hospital was often the default place of end-of-life care for a child because parents were not told their options; siblings also mattered.

  What others could learn: A team could give parents an early, specific and honest account of what home, hospital and hospice care would involve for their child and for siblings, and revisit it as the child's condition changes. The authors suggest early advance care planning as one opening for that conversation.

  Conditions, limits and source

  Conditions that matter:

  Parents described gaps in local services and hospice access that left home or hospital as the only options, and sudden deterioration could change an earlier preference; a child's expressed preference could outweigh other factors. Home was most often the first preference but could change when parents found it was not what they had imagined or lacked timely information about what home care would require.

  Cannot be inferred:

  Not representative of bereaved parents in Ireland or of any service. Does not show how many families are offered a choice of place, which setting is best, or what children themselves wanted.

  Limits:

  Only two families used a hospice, both in Northern Ireland, so findings may not reflect hospice care in the Republic. Mostly mothers took part, and the study did not examine disagreement within couples. English-speaking parents only; sudden deaths were excluded; parents recalled care 6 to 48 months afterward. The study was not designed to compare services in the two jurisdictions. Children were not interviewed.

  Source: BMC Palliative Care (Crowe A, McCauley R, Corcoran Y, et al.); PMC open access, Bereaved parents' perspectives of factors influencing decision-making about place of end-of-life care for children with life-limiting, life-threatening conditions: an all-Ireland qualitative study (Abstract, Conclusions). Where: Ireland (Republic of Ireland and Northern Ireland). Population: Bereaved parents (14 mothers, 6 fathers) of 15 children aged under 1 to 16 years with life-limiting or life-threatening conditions who died 6 to 48 months earlier in hospital (6), at home (7) or in a hospice (2). Published 2025-11-24; retrieved 2026-10-11.

• United States · Measured outcome · 2025

  In a US randomized trial of 126 adolescents with cancer, a three-session family advance care planning program was followed by modestly higher anxiety, depressive symptoms and pain interference at 12 months, not at 3 or 6 months (secondary outcomes).

  What others could learn: Teams offering advance care planning to adolescents could pair it with a planned check-in about symptoms and worries months later, not only at the sessions. Short-term gains in feeling prepared and in agreement with family were not sustained at 12 months in this trial.

  Conditions, limits and source

  Conditions that matter:

  Three weekly 60-minute sessions with a certified facilitator, ending with a legal advance directive placed in the medical record and shared with the oncologist. Adolescents who were severely depressed or had suicidality or active psychosis were excluded. The comparison group received treatment as usual.

  Cannot be inferred:

  Not evidence that advance care planning harms adolescents or should be withheld: the quality-of-life outcome showed no group difference until 12 months, and the cause of the late rise is unknown. Does not apply to non-English speakers, other illnesses or services outside academic pediatric hospitals.

  Limits:

  Participation rate was 39%, so selection bias is possible. These are secondary outcomes; the primary outcome showed no intervention effect. Effects were small (mean ratios 1.10 to 1.14; the pain interference interval reaches 1.00) and appeared at one of three follow-up points. Arms differed at baseline: leukemia or lymphoma 58.1% versus 43.3%, and the intervention group was 11 months further from diagnosis. English-speaking participants only; African American adolescents were underrepresented; most were not on active treatment. The sample after COVID-19 began was small. The authors could not explain the late symptom rise. Outcome scales are self-report; named instruments are not reproduced.

  Source: Pediatrics (Friebert S, Trujillo Rivera EA, Baker JN, et al.); abstract via PubMed, full text via PMC, Pediatric Advance Care Planning and Adolescent Preparedness and Quality of Life: An RCT (Abstract, Conclusions). Where: United States (four pediatric hospitals). Population: Adolescents and young adults aged 14 to 20 with cancer (n=126; mean age 17; 57% female; 79% white), each randomized with a family member (legal guardian for ages 14 to 17; a chosen surrogate for ages 18 to 21). Published 2025-02-01; retrieved 2026-10-11.

• The sourced examples include guidance, reported experience, measured outcome, policy, service description. Each quote was matched to the source text; that is not independent expert review.
• The prompts and fictional case are original. They have not been tested with patients, caregivers or clinicians.
• Whether this workflow helps anyone is an open research question.
• Content is in English. Interface translations are not reviewed for this topic.