 |
|
As the fields of bioethics and neonatology have evolved, they have maintained a mutually challenging relationship. Clinical care of critically ill infants has challenged bioethicists to refine and reformulate the principles of sanctity and quality of life; bioethics has challenged clinicians to apply technology responsibly. Emerging from this dialogue are frameworks for rendering decisions to
initiate, withhold, or withdraw life-sustaining therapies in the delivery room and in the neonatal intensive care unit (NICU).1-4
Ethical dilemmas are felt most acutely when an infant’s prognosis is very poor and, ultimately, uncertain. Although many extremely premature infants experience serious complications, some do have good outcomes. Infants with trisomy 13 and trisomy 18 increasingly receive surgeries that extend their life spans.5 Asphyxiated infants can recover from apparently devastating
brain injuries. Conveying uncertainty to parents about their infant’s diagnosis, treatment, or outcome can be very difficult. Health care professionals may worry that discussing uncertainty with parents can create overly optimistic beliefs regarding probable outcomes.6,7 In addition, uncertainty may result in disagreement among providers regarding the most appropriate management course.
Such conflicts only intensify the moral distress for all involved, and neonatologists often receive little training to resolve conflicting opinions in the face of ethically complex scenarios.8
Best practices for decision-making before, during, and after birth are unclear. Current guidelines emphasize parent/provider collaboration when an infant’s prognosis is very poor.9 Ideally, multiple interdisciplinary discussions would occur between families and providers over time, while the stressors of maternal illness, pain, and home-life disruption would be
minimized. But this rarely happens: instead, parents and health care providers regularly proceed quickly and with imperfect supports. They engage, often as strangers, in intense dialogues regarding critical decisions.
Data suggest that parents and health care professionals may have very different priorities when considering these decisions. Reports from a survey by Bastek and coworkers, reviewed in this newsletter, suggest that neonatologists emphasize biomedical information about morbidity and mortality during counseling. In contrast, according to the review by Boss and associates,
families report that their decision-making is influenced mostly by hope, emotion, spirituality, and religion. This may help to explain poor parent/provider consensus about what decisions are made and by whom.10 The Bastek review further reports that, although most neonatologists agree that parents and providers should make decisions together, this occurs less than half the time.
The role played by health care professionals during shared decision-making for critically ill infants can vary. In deference to parental autonomy, some may prefer a neutral role of information-giver. Again, according to Bastek and colleagues, health care providers may be reluctant to recommend a particular management option, although the review by Payot and colleagues suggests
that many parents prefer recommendations from their health care professionals and feel abandoned by a neutral approach to prenatal counseling. Some providers may be inclined to ignore their own recommendations in order to defer to a parent’s wishes.11-13 McGraw and Perlman14 report that neonatologists who are willing to consider resuscitating an infant with trisomy 18 at birth prioritize
parents’ requests for resuscitation over their own feelings about the child’s likelihood of survival. In contrast, the 2 reviews by Kaempf and coworkers describe a standardized approach to prenatal counseling for extreme prematurity that is based on local consensus recommendations about resuscitation, with a small role, if any, for parent preferences at the earliest gestational ages.
The American Academy of Pediatrics policy statement on the Noninitiation or Withdrawal of Intensive Care for High-Risk Newborns9 is vague regarding the appropriateness of physician recommendations, stating: “The physician’s role is to present the treatment options to the parents and provide guidance as needed.”9
A key component of decision-making for infants with a very poor prognosis is parental awareness of the available management options, including the option of comfort care only. Data suggest that physicians may not routinely present families with all the options.15 Martinez and associates reported neonatologist counseling to be highly variable, with anywhere from 10% to 80% of
neonatologists regularly discussing noninitiation or withdrawal of therapies.16 Lack of agreement about futility of treatment or the infant’s best interests may make some health care professionals reluctant to offer these options17,18; further, they may eschew these options because of moral, religious, or legal concerns.19-21 Although discussions of conscientious objection are uncommon in
the neonatology literature,22-24 data from other areas of medicine suggest that nearly 30% of physicians do not discuss or refer patients for procedures that they find morally controversial.25 It is unclear whether parents are aware of this practice.
Moral distress impacts both parents and health care professionals alike in these scenarios.26,27 The review by Cadge and Catlin (reviewed herein) describes the various ways in which physicians and nurses make meaning and sense of the suffering that they witness in the NICU, particularly the suffering that precedes the death of an infant. A key feature of distressing situations
in the NICU involves participation in actions perceived to cause patient suffering; further, a sense of professional failure adds to the distress for health care professionals. The review by Brosig et al. describes how important it is to families’ long-term adjustment for providers to be perceived as trustworthy, which often means being present with them throughout the very difficult
process of their infant’s death.
Logistical and ethical challenges to direct observation of parent/provider decision-making and communication in these scenarios clearly impact the quality of research about these interactions. Most of the existing data are philosophical, retrospective, or based on hypothetical scenarios. Enrolling and obtaining informed consent from laboring parents, or those with critically ill newborns, can
be burdensome for families. But existing data suggest that families may find it helpful to discuss their difficult experiences.28 Without additional, careful study 29 of these interactions, truly collaborative parent/provider decision-making in the face of ethical dilemmas will not be realized.
Commentary References
| 1. |
Tyson JE, Stoll BJ. Evidence-based ethics and the care and outcome of extremely premature infants. Clin Perinatol. 2003;30(2):363-387.
|
 |
| 2. |
Doroshow RW, Hodgman JE, Pomerance JJ, Ross JW, Michel VJ, Luckett PM, et al.
Treatment decisions for newborns at the threshold of viability: an ethical dilemma. J Perinatol.
2000;20(6):379-383. |
|
| 3. |
Wilder MA.
Ethical issues in the delivery room: resuscitation of extremely low birth weight infants. J Perinat Neonatal Nurs. 2000;14(2):44-57. |
|
| 4. |
Racine E, Shevell MI.
Ethics in neonatal neurology: when is enough, enough? Pediatr Neurol. 2009;40(3):147-155. |
|
| 5. |
Kaneko Y, Kobayashi J, Yamamoto Y, Yoda H, Kanetaka Y, Nakajima Y, et al. Intensive cardiac management in patients with trisomy 13 or trisomy 18. Am J Med Genet A.
2008;146A(11):1372-1380.
|
|
| 6. |
Mack JW, Cook EF, Wolfe J, Grier HE, Cleary PD, Weeks JC.
Understanding of prognosis among parents of children with cancer: parental optimism and the parent-physician interaction. J Clin Oncol.
2007;25(11):1357-1362. |
|
| 7. |
Reder EA, Serwint JR. Until the last breath: exploring the concept of hope for parents and health care professionals during a child's serious illness. Arch Pediatr Adolesc Med.
2009;163(7):653-657. |
|
| 8. |
Boss RD, Hutton N, Donohue PK, Arnold RM.
Neonatologist training to guide family decision-making for critically ill infants. Arch Ped Adol Med. 2009;163(9):783-788. |
|
| 9. |
Bell EF.
Nomination or withdrawal of intensive care for high-risk newborns. Pediatrics. 2007 Feb;119(2):401-3. |
|
| 10. |
Zupancic JA, Kirpalani H, Barrett J, Stewart S, Gafni A, Streiner D, et al.
Characterising doctor-parent communication in counselling for impending preterm delivery. Arch Dis Child Fetal Neonatal Ed. 2002;87(2):F113-117.
|
|
| 11. |
van der Heide A, van der Maas PJ, van der Wal G, Kollee LA, de Leeuw R, Holl RA.
The role of parents in end-of-life decisions in neonatology: physicians' views and practices. Pediatrics. 1998;101(3 Pt 1):413-418.
|
|
| 12. |
Doron MW, Veness-Meehan KA, Margolis LH, Holoman EM, Stiles AD.
Delivery room resuscitation decisions for extremely premature infants. Pediatrics. 1998;102(3 Pt 1):574-582.
|
|
| 13. |
Peerzada JM, Richardson DK, Burns JP.
Delivery room decision-making at the threshold of viability. J Pediatr. 2004;145(4):492-498.
|
|
| 14. |
McGraw MP, Perlman JM.
Attitudes of neonatologists toward delivery room management of confirmed trisomy 18: potential factors influencing a changing dynamic. Pediatrics. 2008;121(6):1106-1110.
|
|
| 15. |
Singh J, Fanaroff J, Andrews B, Caldarelli L, Lagatta J, et al.
Resuscitation in the "gray zone" of viability: determining physician preferences and predicting infant outcomes. Pediatrics. 2007;120(3):519-526.
|
|
| 16. |
Martinez AM, Partridge JC, Yu V, Wee Tan K, Yeung CY, Lu JH, et al.
Physician counselling practices and decision-making for extremely preterm infants in the Pacific Rim. J Paediatr Child Health. 2005;41(4):209-214.
|
|
| 17. |
Mercurio MR, Peterec SM, Weeks B.
Hypoplastic left heart syndrome, extreme prematurity, comfort care only, and the principle of justice. Pediatrics. 2008;122(1):186-189.
|
|
| 18. |
Meadow W, Lagatta J, Andrews B, Caldarelli L, Keiser A, Laporte J, et al.
Just, in time: ethical implications of serial predictions of death and morbidity for ventilated premature infants. Pediatrics. 2008 Apr;121(4):732-740.
|
|
| 19. |
Streiner DL, Saigal S, Burrows E, Stoskopf B, Rosenbaum P.
Attitudes of parents and health care professionals toward active treatment of extremely premature infants. Pediatrics. 2001;108(1):152-157.
|
|
| 20. |
Rebagliato M, Cuttini M, Broggin L, Berbik I, de Vonderweid U, Hansen G, et al.
Neonatal end-of-life decision making: Physicians' attitudes and relationship with self-reported practices in 10 European countries. JAMA. 2000;284(19):2451-2459.
|
|
| 21. |
Lorenz JM.
Prenatal counseling and resuscitation decisions at extremely premature gestation. J Pediatr. 2005;147(5):567-568.
|
|
| 22. |
Lantos JD, Curlin FA.
Religion, conscience and clinical decisions. Acta Paediatr. 2008;97(3):265-266.
|
|
| 23. |
Beal J.
Conscientious objection: a potential neonatal nursing response to care orders that cause suffering at the end of life? Study of a concept. MCN Am J Matern Child Nurs. 2008;33(5):325.
|
|
| 24. |
Catlin A, Armigo C, Volat D, Vale E, Hadley MA, Gong W et al.
Conscientious objection: a potential neonatal nursing response to care orders that cause suffering at the end of life? Study of a concept. Neonatal Netw. 2008;27(2):101-108.
|
|
| 25. |
Curlin FA, Lawrence RE, Chin MH, Lantos JD.
Religion, conscience, and controversial clinical practices. N Engl J Med. 2007;356(6):593-600.
|
|
| 26. |
Epstein EG.
End-of-life experiences of nurses and physicians in the newborn intensive care unit. J Perinatol. 2008;28(11):771-778.
|
|
| 27. |
Kain VJ.
Moral distress and providing care to dying babies in neonatal nursing. Int J Palliat Nurs. 2007;13(5):243-248
|
|
| 28. |
Emanuel EJ, Fairclough DL, Wolfe P, Emanuel LL.
Talking with terminally ill patients and their caregivers about death, dying, and bereavement: is it stressful? Is it helpful? Arch Intern Med. 2004;164(18):1999-2004.
|
|
| 29. |
Meert KL, Eggly S, Dean JM, Pollack M, Zimmerman J, Anand KJ, et al.
Ethical and logistical considerations of multicenter parental bereavement research. J Palliat Med. 2008;11(3):444-450.
|
|
|
|
|
