End-of-Life Decisions and Palliative Care in a Children's Hospital

Tan, Gim H.; Totapally, Balagangadhar; Torbati, Dan; Wolfsdorf, Jack

doi:10.1089/jpm.2006.9.332

Cited by 31 publications

(28 citation statements)

References 42 publications

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“…The majority of parents of children with cancer prefer to share the responsibility for decision‐making with the physician. Shared medical decision‐making includes careful consideration of which options best promote the patient's interests, and minimizes harm to the patient and family, while ensuring that all options represent responsible therapeutics . Parents and AYA patients/participants depend on physician/investigators to demonstrate these values during the phase 1 ICP and to provide guidance in the decision‐making process.…”

Section: Discussionmentioning

confidence: 99%

Suggestions from adolescents, young adults, and parents for improving informed consent in phase 1 pediatric oncology trials

Baker

Leek

Salas

et al. 2013

Cancer

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BACKGROUND: Informed consent for a pediatric oncology phase 1 trial is a delicate process, and is made more complex by the difficulty of the information and the requirement for parental consent, and patient assent when applicable. This analysis identifies suggestions for improving the informed consent process received from parents and adolescent and young adult patients (aged 14 years-21 years) who had the option of participating in a phase 1 pediatric oncology trial. METHODS: A total of 57 parents and 20 patients completed interviews as part of a multisite, prospective, descriptive study. These transcribed interviews were studied using established content analysis methods. RESULTS: Parent and patient responses contained 220 suggestions and 54 suggestions, respectively. A total of 21 unique suggestions for improvement emerged in 3 main themes: 1) provision of more information; 2) structure and presentation of the informed consent process, and 3) suggestions for physicians conducting the process. Common suggestions included providing more specific information about the trial, allowing more time for decision-making, and using different methods to deliver information. CONCLUSIONS: Participants involved in the informed consent process for a phase 1 trial provided specific recommendations to research teams to enhance the process. Physician/investigators should be informed of these recommendations and develop and test interventions incorporating them. Cancer 2013;119:4154-61.

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Section: Discussionmentioning

confidence: 99%

Suggestions from adolescents, young adults, and parents for improving informed consent in phase 1 pediatric oncology trials

Baker

Leek

Salas

et al. 2013

Cancer

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“…V O L U M E 2 8 ⅐ N U M B E R 2 0 ⅐ J U L Y 1 0 2 0 1 0 communication with clinicians and psychosocial support at the end of life improve parental satisfaction, emotional relief, and bereavement adaptation, [7][8][9][10] especially when it identifies patient preferences and supports advance care planning. 11 Insight into the parental decisionmaking process can help clinicians offer effective, compassionate care, support decisions consistent with parental integrity, and minimize decisional regret.…”

Section: Journal Of Clinical Oncology O R I G I N a L R E P O R Tmentioning

confidence: 99%

Decision Making by Parents of Children With Incurable Cancer Who Opt for Enrollment on a Phase I Trial Compared With Choosing a Do Not Resuscitate/Terminal Care Option

Maurer

Hinds

Spunt

et al. 2010

JCO

131

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A B S T R A C T PurposeParents of children with incurable cancer make complex and difficult decisions about remaining treatment options. We compared the self-reported rationale, good parent definition, and desired clinical staff behaviors of parents who recently decided for phase I (P1) chemotherapy with parents who chose a do not resuscitate (DNR) or terminal care (TC) option. Patients and MethodsSixty-two parents of 58 children were asked for the basis of their decision, their definition of a good parent, and what staff behaviors supported their good parent role. After semantic content analysis, results were compared in the P1 versus DNR/TC groups. These categories were mutually exclusive but did not necessarily represent an either/or decision. ResultsThirty-one decisions were for P1 chemotherapy and 27 for DNR/TC. Median survival time after study enrollment was greater in the P1 group (0.4 v 0.1 years). Most P1 group parents reported having felt compelled to continue cancer-directed therapy (71% v 7%), whereas those who opted for DNR/TC cited quality of life (QOL; 74% v 3%) and patient wishes (67% v 13%). Decision factors common to both groups were medical facts, doing right, and others' opinions. Both groups believed that a good parent did right, provided support and presence, and sacrificed for the child. The groups desired similar support from clinicians and expressed gratitude. ConclusionDespite similar definitions of a good parent and desired staff behaviors, parents in the P1 group reported having felt compelled to continue cancer-directed therapy, whereas QOL and patient wishes were emphasized in decisions for DNR/TC.

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“…[1][2][3][4] Most children who die in American hospitals do so after critical care interventions are withheld or withdrawn. [5][6][7][8] The American Academy of Pediatrics (AAP) has stated that it supports allowing the withholding and withdrawing of a medical intervention when the projected burdens of the intervention outweigh the benefits to the child. 9 The AAP has also stated that treatment decisions regarding an infant should be based on the judgment that the infant will derive net benefit, concluding that medical treatment that is judged to be harmful, of no benefit, or "futile" is inappropriate and should not be offered or provided.…”

Section: Introductionmentioning

confidence: 99%

Forgoing Medically Provided Nutrition and Hydration in Children

Diekema¹,

Botkin²

2009

Pediatrics

130

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There is broad consensus that withholding or withdrawing medical interventions is morally permissible when requested by competent patients or, in the case of patients without decision-making capacity, when the interventions no longer confer a benefit to the patient or when the burdens associated with the interventions outweigh the benefits received. The withdrawal or withholding of measures such as attempted resuscitation, ventilators, and critical care medications is common in the terminal care of adults and children. In the case of adults, a consensus has emerged in law and ethics that the medical administration of fluid and nutrition is not fundamentally different from other medical interventions such as use of ventilators; therefore, it can be forgone or withdrawn when a competent adult or legally authorized surrogate requests withdrawal or when the intervention no longer provides a net benefit to the patient. In pediatrics, forgoing or withdrawing medically administered fluids and nutrition has been more controversial because of the inability of children to make autonomous decisions and the emotional power of feeding as a basic element of the care of children. This statement reviews the medical, ethical, and legal issues relevant to the withholding or withdrawing of medically provided fluids and nutrition in children. The American Academy of Pediatrics concludes that the withdrawal of medically administered fluids and nutrition for pediatric patients is ethically acceptable in limited circumstances. Ethics consultation is strongly recommended when particularly difficult or controversial decisions are being considered.

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End-of-Life Decisions and Palliative Care in a Children's Hospital

Abstract: Patterns of care at the end of life vary in children with differing clinical and demographic characteristics. Because EOLC discussions are associated with greater focus on palliative care, strategies to enhance EOLC communications for pediatric patients should be further evaluated.

Cited by 31 publications

References 42 publications

Suggestions from adolescents, young adults, and parents for improving informed consent in phase 1 pediatric oncology trials

Suggestions from adolescents, young adults, and parents for improving informed consent in phase 1 pediatric oncology trials

Decision Making by Parents of Children With Incurable Cancer Who Opt for Enrollment on a Phase I Trial Compared With Choosing a Do Not Resuscitate/Terminal Care Option

Forgoing Medically Provided Nutrition and Hydration in Children

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