Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology

Seminars in Perinatology

Volumn 38, Issue 1, 2014, Pages 38-46

  Janvier, Annie ^a,b   Barrington, Keith ^a,b   Farlow, Barbara ^c,d  

^a UNIVERSITÉ DE MONTRÉAL   (Canada)

^b UNIVERSITY OF MONTREAL   (Canada)

^c DeVeber Institute for Bioethics and Social Research   (Canada)

^d Patients for Patient Safety Canada   (Canada)

Author keywords

Communication; Emotions; Empathy; End of life decisions; Extreme prematurity; Family centered care; Life sustaining interventions; Neonatology; Palliative care; Personalized medicine; Withhold and withdraw intensive care

Indexed keywords

COPING BEHAVIOR; DOCTOR PATIENT RELATION; EMOTION; FAMILY ATTITUDE; HEALTH CARE PERSONNEL; HEALTH PERSONNEL ATTITUDE; HUMAN; INTERPERSONAL COMMUNICATION; LIFE SUSTAINING TREATMENT; MEDICAL DECISION MAKING; MEDICAL ETHICS; NEONATOLOGY; NEWBORN MORTALITY; PARENTAL ATTITUDE; PERSONAL EXPERIENCE; PERSONALIZED MEDICINE; PRIORITY JOURNAL; PSYCHOLOGICAL WELL BEING; REVIEW; SOCIAL SUPPORT; TERMINAL CARE; TREATMENT WITHDRAWAL;

BPD; BRONCHOPULMONARY DYSPLASIA; CARDIOPULMONARY RESUSCITATION; COMMUNICATION; CPR; ELGAN; EMOTIONS; EMPATHY; END-OF-LIFE DECISIONS; EXTREME PREMATURITY; EXTREMELY LOW-GESTATIONAL-AGE INFANTS; FAMILY-CENTERED CARE; GA; GESTATIONAL AGE; LIFE-SUSTAINING INTERVENTIONS; NEC; NECROTIZING ENTEROCOLITIS; NEONATAL INTENSIVE CARE UNIT; NEONATOLOGY; NICU; PALLIATIVE CARE; PERSONALIZED MEDICINE; PMA; POST-MENSTRUAL AGE; WITHHOLD AND WITHDRAW INTENSIVE CARE;

COMMUNICATION; EMOTIONS; FEMALE; HUMANS; INDIVIDUALIZED MEDICINE; INFANT, NEWBORN; INFANT, PREMATURE; INFANT, VERY LOW BIRTH WEIGHT; INTENSIVE CARE UNITS, NEONATAL; MALE; MEDICAL FUTILITY; NEONATOLOGY; PALLIATIVE CARE; PARENTS; PREGNANCY; PROFESSIONAL-FAMILY RELATIONS; PROGNOSIS; RESUSCITATION ORDERS; WITHHOLDING TREATMENT;

EID: 84892998091     PISSN: 01460005     EISSN: 1558075X     Source Type: Journal    
DOI: 10.1053/j.semperi.2013.07.007     Document Type: Review

References (48)

1. Janvier A., Lorenz J.M., Lantos J. Antenatal counseling for parents facing an extremely preterm birth: limitations of the medical evidence. Acta Paediatr 2012, [no-no].
2. Griswold K.J., Fanaroff J.M. An evidence-based overview of prenatal consultation with a focus on infants born at the limits of viability. Pediatrics 2010, [peds.2009-1473].
3. Guillén Ú., Suh S., Munson D., et al. Development and pretesting of a decision-aid to use when counseling parents facing imminent extreme premature delivery. J Pediatr 2012, 160(3):382-387.
4. Janvier A., Leuthner S.R. Chronic patients, burdensome interventions and the Vietnam analogy. Acta Paediatrica 2013, 102(7):669-670.
5. Fontana M.S., Farrell C., Gauvin F., Lacroix J., Janvier A. Modes of death in pediatrics: differences in the ethical approach in neonatal and pediatric patients. J Pediatr 2013, [0].
6. Verhagen A.A.E., Janvier A., Leuthner S.R., et al. Categorizing neonatal deaths: a cross-cultural study in the United States, Canada, and The Netherlands. J Pediatr 2010, 156(1):33-37.
7. Janvier A., Lantos J.D. Variations of Practice in the Care of Extremely Preterm Infants 2011, Cambridge University Press.
8. Kaempf J.W., Tomlinson M., Arduza C., et al. Medical staff guidelines for periviability pregnancy counseling and medical treatment of extremely premature infants. Pediatrics 2006, 117(1):22-29.
9. Batton D.G., DeWitte D.B., Pryce C.J. One hundred consecutive infants born at 23 weeks and resuscitated. Am J Perinatol 2011, 28(4):299-304.
10. Ubel P.A. Afterword. Curr Probl Pediatr Adolesc Health Care 2011, 41(4):128-130.
11. Janvier A, Farlow B, Wilfond BS. The experience of families with children with trisomy 13 and 18 in social networks. Pediatrics. 2012.
12. Ho A. Relational autonomy or undue pressureα Family's role in medical decision-making. Scand J Caring Sci 2008, 22(1):128-135.
13. Kon A.A. The shared decision-making continuum. J Am Med Assoc 2010, 304(8):903-904.
14. Caeymaex L., Jousselme C., Vasilescu C., et al. Perceived role in end-of-life decision making in the NICU affects long-term parental grief response. Arch Dis Child Fetal Neonatal Ed 2013, 98(1):F26-F31.
15. Noninitiation or withdrawal of intensive care for high-risk newborns. Pediatrics 2007, 119(2):401-403. Committee on Fetus and Newborn.
16. Guidelines on forgoing life-sustaining medical treatment. Pediatrics 1994, 532-536. Committee on Bioethics A.
17. Visschers V.H.M., Meertens R.M., Passchier W.W.F., De Vries N.N.K. Probability information in risk communication: a review of the research literature. Risk Anal 2009, 29(2):267-287.
18. Zikmund-Fisher B.J., Fagerlin A., Ubel P.A. Improving understanding of adjuvant therapy options by using simpler risk graphics. Cancer 2008, 113(12):3382-3390.
19. Yamagishi K. When a 12.86% mortality is more dangerous than 24.14%: implications for risk communication. Appl Cogn Psychol 1997, 11(6):495-506.
20. Zikmund-Fisher B.J., Fagerlin A., Roberts T.R., Derry H.A., Ubel P.A. Alternate methods of framing information about medication side effects: incremental risk versus total risk of occurrence. J Health Commun 2008, 13(2):107-124.
21. Haward M.F., Murphy R.O., Lorenz J.M. Message framing and perinatal decisions. Pediatrics 2008, 122(1):109-118.
22. Kakkilaya V., Groome L.J., Platt D., et al. Use of a visual aid to improve counseling at the threshold of viability. Pediatrics 2011.
23. Feudtner C., Morrison W. The darkening veil of "do everything". Arch Pediatr Adolesc Med 2012, 166(8):694-695.
24. Charland L.C. Is Mr. Spock mentally competentα Competence to consent and emotion. Philos Psychiatry Psychol 1998, 5(1):67-81.
25. Renjilian C.B., Womer J.W., Carroll K.W., Kang T.I., Feudtner C. Parental explicit heuristics in decision-making for children with life-threatening illnesses. Pediatrics 2013, 131(2):e566-e572.
26. Kahneman D., Slovic P., Tversky A. Judgment Under Uncertainty: Heuristics and Biases 1982, Cambridge University Press.
27. Kahneman D. Thinking, Fast and Slow 2011, Farrar, Straus and Giroux.
28. Marewski J.N., Gaissmaier W., Gigerenzer G. Good judgments do not require complex cognition. Cogn Process 2010, 11(2):103-121.
29. Epley N., Gilovich T. The anchoring-and-adjustment heuristic: why the adjustments are insufficientα. Psychol Sci 2006, 17(4):311-318.
30. Nussbaum M.C. Upheavals of Thought: The Intelligence of Emotions 2003, Cambridge University Press.
31. Boss R.D., Hutton N., Sulpar L.J., West A.M., Donohue P.K. Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns. Pediatrics 2008, 122(3):583-589.
32. Jefferies A.L., Kirpalani H.M. Canadian Paediatric Society FaNC. Counselling and management for anticipated extremely preterm birth. Paediatr Child Health 2012, 17(8):443.
33. Miller T. ShaleBug. Curr Probl Pediatr Adolesc Health Care 2011, 41(4):121-123.
34. Roy C. Who would want a child like thatα. Curr Probl Pediatr Adolesc Health Care 2011, 41(4):127.
35. Hassall R., Rose J., McDonald J. Parenting stress in mothers of children with an intellectual disability: the effects of parental cognitions in relation to child characteristics and family support. J Intellect Disabil Res 2005, 49(Pt 6):405-418.
36. Saigal S., Stoskopf B.L., Feeny D., et al. Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents. J Am Med Assoc 1999, 281(21):1991-1997.
37. Lam H.S., Wong S.P.S., Liu F.Y.B., Wong H.L., Fok T.F., Ng P.C. Attitudes toward neonatal intensive care treatment of preterm infants with a high risk of developing long-term disabilities. Pediatrics 2009, 123(6):1501-1508.
38. Saigal S., Rosenbaum P.L., Feeny D., et al. Parental perspectives of the health status and health-related quality of life of teen-aged children who were extremely low birth weight and term controls. Pediatrics 2000, 105(3 Pt 1):569-574.
39. Payot A., Barrington K.J. The quality of life of young children and infants with chronic medical problems: review of the literature. Curr Probl Pediatr Adolesc Health Care 2011, 41(4):91-101.
40. Rosenbaum P. Children's quality of life: separating the person from the disorder. Arch Dis Child 2008, 93(2):100-101.
41. Smith D.M., Loewenstein G., Jankovic A., Ubel P.A. Happily hopeless: adaptation to a permanent, but not to a temporary, disability. Health Psychol 2009, 28(6):787-791.
42. Ubel P. You're Stronger Than you Think 2006, McGraw-Hill.
43. Lacey H.P., Fagerlin A., Loewenstein G., Smith D.M., Riis J., Ubel P.A. Are they really that happyα Exploring scale recalibration in estimates of well-being. Health Psychol 2008, 27(6):669-675.
44. Singer L., Davillier M., Bruening P., Hawkins S., Yamashita T. Social support, psychological distress, and parenting strains in mothers of very low birthweight infants. Fam Relations 1996, 45:343-350.
45. Murphy N., Caplin D.A., Christian B.J., Luther B.L., Holobkov R., Young P.C. The function of parents and their children with cerebral palsy. Phys Med Rehabil 2011, 3(2):98-104.
46. Cronin C., Shapiro C., Casiro O., Cheang M. The impact of very low-birth-weight infants on the family is long lasting: a matched control study. Arch Pediatr Adolesc Med 1995, 149(2):151-158.
47. Janvier A., Lantos J., Deschenes M., Couture E., Nadeau S., Barrington K.J. Caregivers attitudes for very premature infants: what if they knewα. Acta Paediatr 2008, 97(3):276-279.
48. Feudtner C. The breadth of hopes. N Engl J Med 2009, 361(24):2306-2307.