Influence of Genetic Information on Neonatologists' Decisions: A Psychological Experiment
Attitude of health personnel; Decision making; Infants; Neonatologists; Physicians
BACKGROUND AND OBJECTIVES: Genetic testing is expanding among ill neonates, yet the influence of genetic results on medical decision-making is not clear. With this study, we sought to determine how different types of genetic information with uncertain implications for prognosis influence clinicians' decisions to recommend intensive versus palliative care. METHODS: We conducted a national study of neonatologists using a split sample experimental design. The questionnaire contained 4 clinical vignettes. Participants were randomly assigned to see one of 2 versions that varied only regarding whether they included the following genetic findings: (1) a variant of uncertain significance; (2) a genetic diagnosis that affects neurodevelopment but not acute survival; (3) a genetic versus nongenetic etiology of equally severe pathology; (4) a pending genetic testing result. Physicians answered questions about recommendations they would make for the patient described in each vignette. RESULTS: Vignette versions that included a variant of uncertain significance, a diagnosis foreshadowing neurodevelopmental impairment, or a genetic etiology of disease were all associated with an increased likelihood of recommending palliative rather than intensive care. A pending genetic test result did not have a significant effect on care recommendations. CONCLUSIONS: Findings from this study of hypothetical cases suggest neonatologists apply uncertain genetic findings or those that herald neurodevelopmental disability in problematic ways. As genetic testing expands, understanding how it is used in decision-making and educating clinicians regarding appropriate use are paramount.
Callahan KP; Flibotte J; Skraban C; Wild KT; Joffe S; Munson D; Feudtner C
Pediatrics
2022
<a href="http://doi.org/10.1542/peds.2021-052130" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-052130</a>
Communicating about prognosis: ethical responsibilities of pediatricians and parents
adolescent; Child; Female; Humans; Male; Terminal Care; Physician-Patient Relations; Pediatrics; Adult; Parents; Prognosis; Professional-Family Relations; Communication
Clinicians are sometimes reluctant to discuss prognosis with parents of children with life-threatening illness, usually because they worry about the emotional impact of this information. However, parents often want this prognostic information because it underpins informed decision-making, especially near the end of life. In addition, despite understandable clinician concerns about its emotional impact, prognostic disclosure can actually support hope and peace of mind among parents struggling to live with a child's illness. Children, too, may need to understand what is ahead to manage uncertainty and make plans for the ways their remaining life will be lived. In this article, we describe the ethical issues involved in disclosure of prognostic information to parents and children with life-threatening illness and offer practical guidance for these conversations.
2014-02
Mack JW; Joffe S
Pediatrics
2014
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/10.1542/peds.2013-3608E" target="_blank" rel="noreferrer">10.1542/peds.2013-3608E</a>
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>