Palliative care for children
Bereavement Leave Policy Paper
This statement presents an integrated model for providing palliative care for children living with a life-threatening or terminal condition. Advice on the development of a palliative care plan and on working with parents and children is also provided. Barriers to the provision of effective pediatric palliative care and potential solutions are identified. The American Academy of Pediatrics recommends the development and broad availability of pediatric palliative care services based on child-specific guidelines and standards. Such services will require widely distributed and effective palliative care education of pediatric health care professionals. The Academy offers guidance on responding to requests for hastening death, but does not support the practice of physician-assisted suicide or euthanasia for children.}
2000
Nelson RM; Botkin JR; Kodish ED; Levetown M; Truman JT; Wilfond BS; Kazura A; Krug E; Schwartz PA; Caniano DA; Donovan GK; Davis DS; Tellez S; Neff JM; Hardy DR; Jewett PH; Packard JM; Snitzer JA; Steinhart CM; Dull S; O'Connor M; Ostric EJ; Rucki SQ; Weiner E; Wilson JM; Wise R; Klein MD; Striker T; Mucha S; Bioethics Comm; Comm Hosp Care
Pediatrics
2000
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.106.2.351" target="_blank" rel="noreferrer">10.1542/peds.106.2.351</a>
Variability in physician opinion on limiting pediatric life support
Child; Cross-Sectional Studies; Female; Humans; Male; Intensive Care Units; Medical Staff; Prognosis; Questionnaires; Euthanasia; Fellowships and Scholarships; Regression Analysis; Pediatric; Empirical Approach; Death and Euthanasia; decision making; Pediatrics/statistics & numerical data; ICU Decision Making; Neoplasms/therapy; Terminal Care/psychology; Passive/psychology; Intensive Care/psychology; Hospital/psychology/statistics & numerical data; Medical Oncology/statistics & numerical data
OBJECTIVE: We conducted this study to investigate how physicians in a pediatric intensive care unit (ICU) currently make decisions to withdraw and withhold life support. Consultation with the patient's primary caregiver often precedes decisions about withdrawal and limitation of life support in chronically ill patients. In these scenarios, the patient's primary caregiver was the pediatric oncologist. To evaluate the influence of subspecialty training, we compared the attitudes of the pediatric intensivists and the oncologists using scenarios describing critically ill oncology patients. DESIGN: Cross-sectional survey. Each physician was randomly assigned 4 of 8 potential case scenarios. SETTING: A total of 29 American pediatric ICUs. PARTICIPANTS: Pediatric intensive care and oncology attendings and fellows. INTERVENTION: Systematic manipulation of patient characteristics in two hypothetical case scenarios describing 6-year-old female oncology patients presenting to the ICU after the institution of mechanical ventilator support for acute respiratory failure. Cases 1 through 4 described a patient who, before admission, had a 99% projected 1-year probability of survival from her underlying cancer and suffered from severe neurologic disabilities. Cases 5 through 8 described a patient who was neurologically normal before admission and had a /=10% of respondents chose full aggressive management as the most appropriate level of care, whereas another >/=10% chose comfort measures only when viewing the same scenario. The most significant respondent factors affecting choices were professional status (attending vs fellow) and the self-rated importance of functional neurologic status. The majority of respondents (83%) believed that the intensive care and the oncology staff were usually in agreement at their institution about the level of intervention to recommend to the parents. (ABSTRACT TRUNCATED)
1999
Randolph AG; Zollo MB; Egger MJ; Guyatt GH; Nelson RM; Stidham GL
Pediatrics
1999
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.103.4.e46" target="_blank" rel="noreferrer">10.1542/peds.103.4.e46</a>
Physicians' contact with families after the death of pediatric patients: a survey of pediatric critical care practitioners' beliefs and self-reported practices
OBJECTIVES: Although research with bereaved families has shown that they appreciate contact with clinicians after the child's death, this realm of clinical practice remains empirically uncharted. The objective of this study was to describe pediatric critical care practitioners' attitudes and self-reported practices regarding contacting families after a patient's death. METHODS: A total of 376 board-certified members of the American Academy of Pediatrics Section of Critical Care received e-mail invitations to complete a Web-based questionnaire; 204 members responded (effective response rate: 54.3%). RESULTS: Most (95%) participants reported 0 to 1 patient deaths per week. A total of 79% of the respondents reported contacting families at least sometimes, 71.9% had attended funerals, and only 2.5% thought that it was inappropriate for clinicians to attend funerals. A total of 75.9% agreed that follow-up contact helps the family, whereas 47.3% agreed that follow-up contact helps the physicians. The most common methods of follow-up contact included the passive measures of providing contact information; active methods such as meeting with the family, calling them by telephone, or writing a letter or note were used less often. In multivariable analysis, respondents were more likely to report contact with a family after the death of a child when they affirmed the belief that such contact was useful to the family or to the physician or when they were female physicians. Regarding reported funeral attendance after the death of a patient, multivariable analysis revealed similar patterns of association but to an attenuated and nonstatistically significant degree. CONCLUSIONS: A high proportion of pediatric critical care physicians have contacted bereaved families and attended funerals after the death of a child patient. These practices were consistently associated with the belief that such follow-up contact helps the family or the practitioner.
2008
Borasino S; Morrison W; Silberman J; Nelson RM; Feudtner C
Pediatrics
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/10.1542/peds.2008-0952" target="_blank" rel="noreferrer">10.1542/peds.2008-0952</a>
Parental opinions about clinical research
OBJECTIVE: To characterize parental perception of clinical research, particularly in emergency settings. To identify specific aspects of clinical research that concern parents and to discuss how these concerns can be addressed. STUDY DESIGN: Quantitative and qualitative survey in tertiary care children's hospital and affiliated clinics. RESULTS: Family caregivers (n = 136) participated in this study; 81% of study participants agreed or strongly agreed that physicians should do research involving children, with 5% disagreeing. However, 18% felt that researchers care more about the research than about the patient, and 13% believed that when a child is in a research study, physicians must follow the research protocol even if it is not in the best interest of the child. Participants were significantly less likely to endorse the conduct of research in an emergency setting than in a nonspecified setting (P < .001). Parents' foremost concern about emergency research was that it could delay therapy or distract physicians' attention from the child's needs. CONCLUSION: Parents largely support pediatric clinical research, but they have specific concerns that should be addressed in research planning and in communicating with parents about clinical research.
2007
Morris MC; Besner D; Vazquez H; Nelson RM; Fischbach RL
The Journal Of Pediatrics
2007
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.jpeds.2007.04.032" target="_blank" rel="noreferrer">10.1016/j.jpeds.2007.04.032</a>