ReviewJAMA pediatrics2016
Ethics, Emotions, and the Skills of Talking About Progressing Disease With Terminally Ill Adolescents: A Review.
Review in JAMA pediatrics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to 2 registered trials, which are not on this map. Cited by 30 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Longitudinal Pediatric Palliative Care: Quality of Life & Spiritual Struggle
Building Evidence for Effective Palliative/End of Life Care for Teens With Cancer
Who cites it
30 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment.BMC palliative care · 2024Guideline
- Physician decision-making process about withholding/withdrawing life-sustaining treatments in paediatric patients: a systematic review of qualitative evidence.BMC palliative care · 2022Pooled it
- Communication About Dying, Death, and Bereavement: A Systematic Review of Children's Literature.Journal of palliative medicine · 2017Pooled it
- Promoting Resilience in Stress Management: A Randomized Controlled Trial of a Novel Psychosocial Intervention for Adolescents and Young Adults With Advanced Cancer.JCO oncology practice · 2026Trial
- Adolescents and young adults with cancer conversations following participation in an advance care planning video pilot.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024Trial
- Ethical dilemmas and intervention strategies in doctor-patient-family communication in end-of-life pediatric oncology: a narrative review.Translational pediatrics · 2026Review
- Mapping the palliative care needs of children with cancer: a scoping review through the bio-psycho-socio-spiritual lens.Pediatric research · 2026Review
- Describing the Impact of Physician End-of-Life Communication Training on Simulated Stress Using a Novel Stress Marker.The American journal of hospice & palliative care · 2026Observational
- Transition from pediatric to adult care in thoracic transplantation-Challenges and opportunities.JHLT open · 2025Article
- 'You Can't Muck Around With Transplant': Young People's Experiences of Clinical Care Following Lung Transplant.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Attachment as a mechanism influencing end-of-life communication: An analogue investigation.PloS one · 2024Article
- Physicians' Knowledge, Attitudes, and Perception Toward Pediatric Palliative Care in Saudi Arabia: A National Exploratory Survey.Palliative medicine reports · 2023Article
- Advance Care Planning in Serious Illness: A Narrative Review.Journal of pain and symptom management · 2023Review
- Quality of Life in Adolescents and Young Adults: The Role of Symptom Burden.Journal of pain and symptom management · 2022Observational
- Top Ten Tips Palliative Care Clinicians Should Know About Their Work's Intersection with Clinical Ethics.Journal of palliative medicine · 2022Article
- "Will You Still Feel Beautiful When You Find Out You Are Different?": Parents' Experiences, Reflections, and Appearance-Focused Conversations About Their Child's Visible Difference.Qualitative health research · 2022Article
- To Disclose or Not to Disclose: A Case Highlighting the Challenge of Conflicts in Pediatric Disclosure.Journal of pain and symptom management · 2021Article
- End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice.Journal of adolescent and young adult oncology · 2020Article
- Pediatric Palliative Care in Oncology.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2020Review
- Taboo Topics in Adolescent and Young Adult Oncology: Strategies for Managing Challenging but Important Conversations Central to Adolescent and Young Adult Cancer Survivorship.American Society of Clinical Oncology educational book. American Society of Clinical Oncology. Annual Meeting · 2020Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
Importance: For clinicians caring for adolescent patients living with progressive, life-threatening illness, discussions regarding prognosis, goals of care, and treatment options can be extremely challenging. While clinicians should respect and help to facilitate adolescents' emerging autonomy, they often must also work with parents' wishes to protect patients from the emotional distress of hearing bad news. Observations: We reviewed the ethical justifications for and against truth-telling, and we considered the published ethical and practice guidance, as well as the perspectives of patients, parents, and clinicians involved in these cases. We also explored particular challenges with respect to the cultural context, timing, and content of conversations at the end of adolescents' lives. In most cases, clinicians should gently but persistently engage adolescents directly in conversations about their disease prognosis and corresponding hopes, worries, and goals. These conversations need to occur multiple times, allowing significant time in each discussion for exploration of patient and family values. While truth-telling does not cause the types of harm that parents and clinicians may fear, discussing this kind of difficult news is almost always emotionally distressing. We suggest some "phrases that help" when clinicians strive to deepen understanding and facilitate difficult conversations with adolescents, parents, and other family members. Conclusions and Relevance: The pediatrician's opportunities to engage in difficult conversations about poor prognosis may be rare, but such conversations can be crucial. These discussions affect how patients live at the end of their lives, how they die, and how their families go on. Improved understanding of basic principles of communication, as well as augmented understanding of patient, family, and clinician perspectives may better enable us to navigate these important conversations.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.