Considerations about hastening death among parents of children who die of cancer
ICU Decision Making
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.
2010
Dussel V; Joffe S; Hilden JM; Watterson-Schaeffer J; Weeks JC; Wolfe J
Archives Of Pediatrics & Adolescent Medicine
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1001/archpediatrics.2009.295" target="_blank" rel="noreferrer">10.1001/archpediatrics.2009.295</a>
Parents' views of cancer-directed therapy for children with no realistic chance for cure
Child; Female; Humans; infant; Male; Adult; Parent-Child Relations; Questionnaires; Middle Aged; adolescent; Preschool; Terminally Ill/psychology; infant; Newborn; Parents/psychology; Antineoplastic Agents/adverse effects; Neoplasms/drug therapy/psychology
PURPOSE: Previous literature suggests that parents often wish to continue cancer-directed therapy for their children with incurable cancer. We assessed parents' experiences with treatment for their children with cancer and no realistic chance of cure. PATIENTS AND METHODS: We administered questionnaires to 141 parents of children with cancer who died after receiving care at one of two cancer centers. Parents were asked whether the child benefited and suffered from treatment administered after the parent recognized that cure was not a realistic expectation, and whether they would recommend cancer-directed therapy to other families of children with advanced cancer. RESULTS: Fifty-three (38%) of 141 children received cancer-directed therapy after the parent recognized that the child had no realistic chance for cure. Most of these parents felt that their child had experienced at least some suffering resulting from the therapy (61%, 31 of 51) and little to no benefit (57%, 29 of 51). Fifty-one (38%) of 135 parents overall would recommend standard chemotherapy and 46 (33%) of 140 would recommend experimental chemotherapy to families of children with advanced cancer. Even parents who would not recommend standard chemotherapy generally felt the physician should offer it (91%, 88 of 97). Parents who reported that their children experienced suffering resulting from cancer-directed therapy (odds ratio = 0.46; P = .02) were less likely to recommend standard chemotherapy to other families. CONCLUSION: Although many parents choose treatment for their children with incurable cancer, bereaved parents often would not recommend such therapy. Parents who felt their children suffered as a result of cancer treatment were particularly unlikely to recommend it.
2008
Mack JW; Joffe S; Hilden JM; Watterson J; Moore C; Weeks JC; Wolfe J
Journal Of Clinical Oncology
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1200/JCO.2007.15.6059" target="_blank" rel="noreferrer">10.1200/JCO.2007.15.6059</a>
Issues and challenges in palliative care for children with cancer
PedPal Lit; Adolescent Bioethics Child Health Care Costs Humans Neoplasms/; and the family. The way in which the care is delivered; and the place in which that care is given are not carved into a simple protocol. Quality of life is an important concept that is often overlooked. Educational initiatives for patients; complications Pain/; etiology; Families; health-care providers; methods Reimbursement Mechanisms Terminal Care%X Although the majority of children with cancer are cured of their illness; the child; the services provided; therapy Palliative Care/economics/ethics/
2005
Friedman DL; Hilden JM; Powaski K
Current Pain and Headache Reports
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1007/s11912-004-0073-7" target="_blank" rel="noreferrer">10.1007/s11912-004-0073-7</a>
Program interventions for children at the end of life and their siblings
PedPal Lit; Intervention; Interventions
2006
Duncan J; Joselow M; Hilden JM
Child And Adolescent Psychiatric Clinics Of North America
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.chc.2006.02.002" target="_blank" rel="noreferrer">10.1016/j.chc.2006.02.002</a>
Parent and physician perspectives on quality of care at the end of life in children with cancer
Child; Female; Humans; infant; Male; Physician-Patient Relations; Adult; Health Care Surveys; Parent-Child Relations; Communication; Pain; Odds Ratio; Quality of Health Care; quality of life; adolescent; Preschool; Non-U.S. Gov't; Research Support; infant; Newborn; N.I.H.; Terminal Care/standards; Extramural; Physicians/standards
PURPOSE: To ascertain parents' and physicians' assessments of quality of end-of-life care for children with cancer and to determine factors associated with high-quality care as perceived by parents and physicians. METHODS: A survey was conducted between 1997 and 2001 of 144 parents of children who received treatment at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA) or Children's Hospitals and Clinics of St Paul and Minneapolis, MN, between 1990 and 1999 (65% of those located and eligible) and 52 pediatric oncologists. RESULTS: In multivariable models, higher parent ratings of physician care were associated with physicians giving clear information about what to expect in the end-of-life period (odds ratio [OR] = 19.90, P = .02), communicating with care and sensitivity (OR = 7.67, P < .01), communicating directly with the child when appropriate (OR = 11.18, P < .01), and preparing the parent for circumstances surrounding the child's death (OR = 4.84, P = .03). Parent reports of the child's pain and suffering were not significant correlates of parental ratings of care (P = .93 and .35, respectively). Oncologists' ratings of care were inversely associated with the parent's report of the child's experience of pain (OR = 0.15, P = .01) and more than 10 hospital days in the last month of life (OR = 0.24, P < .01). Parent-rated communication factors were not correlates of oncologist-rated care. No association was found between parent and physician care ratings (P = .88). CONCLUSION: For parents of children who die of cancer, doctor-patient communication is the principal determinant of high-quality physician care. In contrast, physicians' care ratings depend on biomedical rather than relational aspects of care.
2005
Mack JW; Hilden JM; Watterson J; Moore C; Turner B; Grier HE; Weeks JC; Wolfe J
Journal Of Clinical Oncology
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1200/JCO.2005.04.010" target="_blank" rel="noreferrer">10.1200/JCO.2005.04.010</a>
Pediatric Palliative Care
Child; Humans; Grief; Religion; Death and Euthanasia; Terminally Ill/psychology; hospice care; Pediatrics/methods; Palliative Care/ethics/methods/psychology
Each year in the United States, approximately 50,000 children die and 500,000 children cope with life-threatening conditions. Worldwide these numbers are in the millions.1,2 Such children and their families require comprehensive, compassionate, and developmentally appropriate palliative care. Palliative care is a philosophy of care that evolved from the hospice philosophy to meet the gaps in care for seriously ill and dying patients. The aims of pediatric palliative care should best intersect with the aims of curing and healing, and this approach should be instituted when diagnosis, intervention, and treatment are not limited to a disease process, but rather become . . .
2004-04
Himelstein BP; Hilden JM; Boldt AM; Weissman DE
New England Journal Of Medicine
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1056/NEJMra030334" target="_blank" rel="noreferrer">10.1056/NEJMra030334</a>
Neonates, children, and adolescents
medicine
Hurwitz CA; Lewandowski JG; Hilden JM
Palliative Medicine
2009
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Book/Book Section