Considerations About Hastening Death Among Parents of Children Who Die of Cancer
Open accessAbstract
OBJECTIVES: To estimate the frequency of hastening death discussions, describe current parental endorsement of hastening death and intensive symptom management, and explore whether children's pain influences these views in a sample of parents whose child died of cancer. DESIGN: Cross-sectional survey. SETTING: Two tertiary-care US pediatric institutions. PARTICIPANTS: A total of 141 parents of children who died of cancer (response rate, 64%). OUTCOME MEASURES: Proportion of parents who (1) considered or (2) discussed hastening death during the child's end of life and who endorsed (3) hastening death or (4) intensive symptom management in vignettes portraying children with end-stage cancer. RESULTS: A total of 19 of 141 (13%; 95% confidence interval [CI], 8%-19%) parents considered requesting hastened death for their child and 9% (95% CI, 4%-14%) discussed hastening death; consideration of hastening death tended to increase with an increase in the child's suffering from pain. In retrospect, 34% (95% CI, 26%-42%) of parents reported that they would have considered hastening their child's death had the child been in uncontrollable pain, while 15% or less would consider hastening death for nonphysical suffering. In response to vignettes, 50% (95% CI, 42%-58%) of parents endorsed hastening death while 94% (95% CI, 90%-98%) endorsed intensive pain management. Parents were more likely to endorse hastening death if the vignette involved a child in pain compared with coma (odds ratio, 1.4; 95% CI, 1.1-1.8). CONCLUSIONS: More than 10% of parents considered hastening their child's death; this was more likely if the child was in pain. Attention to pain and suffering and education about intensive symptom management may mitigate consideration of hastening death among parents of children with cancer.
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Provider discomfort with palliative care conversations and misconceptions that palliative care is only beneficial when treatment is no longer effective are barriers.
“Additional barriers include provider discomfort with palliative care conversations,[2,19,23,38,57] or misconceptions regarding palliative care as only beneficial when treatment is no longer effective[32,58,59] both of which may benefit from clarity in palliative care guidelines.[60]”
From Palliative Care as a Standard of Care in Pediatric Oncology (2015) · cites this paper as [19]
The Discussion (page unavailable) says physicians find conversations about hastening death highly challenging, offering limited support for the provider-discomfort part. It does not say providers are uncomfortable with palliative care conversations generally, or that people believe palliative care is beneficial only after treatment stops working. (LLM, conf=0.78)
Experimental — accuracy not yet measuredOver one-third of 141 bereaved parents retrospectively reported they would have considered hastening their child's death if the child had been in uncontrollable pain.
“Over one-third of 141 bereaved parents retrospectively reported that they would have considered hastening their child’s death had the child been in uncontrollable pain.[19]”
From Palliative Care as a Standard of Care in Pediatric Oncology (2015) · cites this paper as [19]
Families whose primary oncologist clearly explained treatment options during their child's end-of-life care and who involved home-care services were more likely to plan for the child's location of death.
“Relatedly, families whose primary oncologist clearly explained treatment options during their child’s end of life care and who involved home-care services were more likely to plan for child’s location of death.[19]”
From Palliative Care as a Standard of Care in Pediatric Oncology (2015) · cites this paper as [19]
The Methods > Parental survey passage says location of death was collected, while the Implications/Conclusions discuss explaining symptom-management options in relation to considerations of hastening death. Neither passage reports whether oncologists’ explanations or home-care services were associated with planning the child’s location of death. Searches for home-care services, planned location of death, and explained treatment options found no such result in our copy; page numbers were unavailable. (LLM, conf=0.74)
Experimental — accuracy not yet measuredThe opportunity to plan location of death is associated with high-quality palliative care.
“The opportunity to plan location of death is associated with high quality palliative care and may suggest that communication regarding planning rather than actual location of death may be a more relevant outcome.[19,43]”
From Palliative Care as a Standard of Care in Pediatric Oncology (2015) · cites this paper as [19]
The Methods (Parental survey; page unavailable) say that location of death was collected, but do not address whether parents had an opportunity to plan it. The Discussion (page unavailable) concerns planning symptom-management options, not an association between planning the location of death and high-quality palliative care. Searches for planned place or location of death and palliative-care quality found no passage making that association. (LLM, conf=0.74)
Experimental — accuracy not yet measuredCommunication regarding planning, rather than actual location of death, may be a more relevant outcome.
“The opportunity to plan location of death is associated with high quality palliative care and may suggest that communication regarding planning rather than actual location of death may be a more relevant outcome.[19,43]”
From Palliative Care as a Standard of Care in Pediatric Oncology (2015) · cites this paper as [19]
The Methods > Parental survey section says location of death was collected, but does not discuss planning that location. The Discussion addresses conversations about hastening death and symptom management, not whether communication about location planning is a more relevant palliative-care outcome than actual location of death. Searches for location-of-death planning and palliative-care quality found no passage addressing that comparison. (LLM, conf=0.76)
Experimental — accuracy not yet measured
Bereaved parental anxiety and quality of life scales correlate with level of child anxiety and pain at end of life.
“Bereaved parental anxiety and quality of life scales have correlated with level of child anxiety and pain at end of life,[19–22]”
From Palliative Care as a Standard of Care in Pediatric Oncology (2015) · cites this paper as [19]
The Methods (Statistical methods; page unavailable) examine whether child pain was associated with parents’ consideration or endorsement of hastening death. The Parental survey section mentions the child’s quality of life, but the passages found do not report parental anxiety or quality-of-life scales, or correlations between those scales and the child’s anxiety or pain. Searches for those measures and correlations found no supporting passage in our copy. (LLM, conf=0.75)
Experimental — accuracy not yet measuredEarly integration of palliative care as a standard has potential to improve long-term family wellness outcomes.
“implying early integration of palliative care as a standard of care has potential to improve long-term family wellness outcomes.”
From Palliative Care as a Standard of Care in Pediatric Oncology (2015) · cites this paper as [19]
The Implications/Conclusions section says that explaining symptom-management options may ease parents’ consideration of hastening their child’s death. The Discussion mentions greater integration of palliative strategies into care, but does not assess early integration as a standard of care or long-term family wellness outcomes; searches for those concepts found no supporting passage. No page numbers were provided in our copy. (LLM, conf=0.76)
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Palliative Care as a Standard of Care in Pediatric Oncology
Weaver, M. S., Heinze, K. E., Kelly, K. P., Wiener, L., Casey, R. L., Bell, C. J., Wolfe, J., Garee, A. M., Watson, A., & Hinds, P. S. (2015) · Pediatric Blood & Cancer · doi:10.1002/pbc.25695 · Cited by 238 · see citing works
“[8,17,54–56] Additional barriers include provider discomfort with palliative care conversations,[2,19,23,38,57] or misconceptions regarding palliative care as only beneficial when treatment is no longer effective[32,58,59] both of which may benefit from clarity in palliative care guidelines.”
BackgroundInfluentialWeaver, M. S., Heinze, K. E., Bell, C. J., Wiener, L., Garee, A. M., Kelly, K. P., Casey, R. L., Watson, A., & Hinds, P. S. (2016) · Palliative Medicine · doi:10.1177/0269216315583446 · Cited by 184 · see citing works
Palliative care considerations and practices for adolescents and young adults with cancer
Upshaw, N. C., Roche, A., Gleditsch, K., Connelly, E., Wasilewski‐Masker, K., & Brock, K. E. (2021) · Pediatric Blood & Cancer · doi:10.1002/pbc.28781 · Cited by 35 · see citing works
Care at the End of Life for Children with Cancer
Bergstraesser, E., & Flury, M. (2018) · Pediatric Oncology · doi:10.1007/978-3-319-61391-8_11 · Cited by 7 · see citing works
- Authors
- Dussel, V.
- Venue
- Archives of Pediatrics & Adolescent Medicine
- Publisher
- American Medical Association (AMA)
- Published
- 2010-03-01
- Volume
- 164
- Issue
- 3
- Pages
- 231
- ISSN
- 1072-4710 (ISSN-L)
- PMC
- PMC4760349
- OpenAlex
- W1972528723
- Semantic Scholar
- 4d89837df955cfa98ce6affaf57113eb12aee79c
- Cited by
- 44
- References
- 41
- Citations by year
- 2025: 1 · 2024: 1 · 2023: 1 · 2022: 3 · 2021: 4 · 2020: 1 · 2019: 2 · 2018: 2 · 2017: 5 · 2016: 3 · 2015: 6 · 2014: 3 · 2013: 5 · 2012: 2
- FWCI
- 3.80
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Archives of Pediatrics and Adolescent Medicine (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Funders
- U.S. Public Health Service (T32 HP 10018)
- National Cancer Institute (K07CA096746)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Ethics and Legal Issues in Pediatric Healthcare
- Keywords
- hastening death, childhood cancer, parental attitudes, end-of-life care, pain management, child suffering, parental decision-making, palliative care, end-of-life discussions
- MeSH terms
- Adult, Attitude to Death, Boston, Child, Cross-Sectional Studies, Female, Humans, Male, Minnesota, Neoplasms, Pain, Parents, Retrospective Studies, Socioeconomic Factors, Comorbidity, Euthanasia, Active
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