Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Commentary
  • Published:

Approaches to end-of-life discussions with parents of a profoundly compromised newborn

Journal of Perinatology volume 37, pages 1078–1081 (2017)Cite this article

Subjects

A new father is faced with an unanticipated and nearly unimaginable scenario—his wife, who was pregnant with twins has undergone an emergency Caesarian section after one twin’s heart rate was no longer detectable. Twin A did not survive. Her sister, Twin B, required resuscitation efforts and is now on life support. The surviving twin responded to resuscitation to the extent that she has a heart rate and blood flow. She also has evidence of extensive multi-organ injury as well as severe neurological damage. Complicating the situation, the mother became acutely ill following childbirth and was admitted to the intensive care unit. This new father, who just lost one daughter, and whose wife and second daughter are both critically ill, is understandably overwhelmed.

The attending physician meets with the father and describes Twin B’s prognosis as ‘very guarded’. Multiple organs incurred significant injury. Her brain has suffered a severe insult. She will likely not recover any meaningful neurological function. In a situation like this, what is the best way for the medical team to discuss the goals of care with the parents? The approach today in most American hospitals involves presenting the parents with clinical details, discussing the prognosis and asking the parents what they want done. This practice grants the parents a range of choice on the care to be provided to the newborn. It also presents a considerable burden to the parents.

This is a preview of subscription content, access via your institution

Relevant articles

Open Access articles citing this article.

Access options

Buy this article

  • Purchase on Springer Link
  • Instant access to full article PDF
Buy now

Prices may be subject to local taxes which are calculated during checkout

References

  1. Gawande A . Letting Go: What Should Medicine Do When It Can’t Save Your Life?. The New Yorker: New York, NY, 2010; 36–50.

    Google Scholar 

  2. Meisel A End-of-life care. In: Crowley M (ed). From Birth to Death and Bench to Clinic: The Hastings Center Bioethics Briefing Book. Hasting Center Report: Garrison, NY: 2008, pp 51–54.

  3. Kass L I will give no deadly drug: why doctors must not kill. In: Foley K, Hendin H (eds). The Case Against Assisted Suicide. Johns Hopkins University Press: Baltimore, MD, USA, 2002, pp 1–26.

  4. Marzak P . The right kind of paternalism. N Eng J Med 1985; 313: 1474–1476.

    Article  Google Scholar 

  5. McCormick R . Bioethics: a moral vacuum. Am Magazine 1999; 180 (15): 8–12 at 9.

    Google Scholar 

  6. Robinson EM, Cadge W, Zollfrank AA . After the DNR: surrogates who persist in requesting cardiopulmonary resuscitation. Hastings Cent Rep 2017; 47 (1): 10–19.

    Article  Google Scholar 

  7. Ramsey P . The Patient as Person: Exploration in Medical Ethics. 2nd edn. Yale University Press: New Haven CT, USA, 2002.

    Google Scholar 

  8. Drought TS, Koening BA . Choice in end-of-life decision making: researching fact or fiction? Gerontologist 2002; 42 (Special issue III): 114–128 at 115.

    Article  Google Scholar 

  9. Pellegrino ED . The metamorphosis of medical ethics: a thirty year retrospective. JAMA 1993; 269: 1158–1162.

    Article  CAS  Google Scholar 

  10. Levinsky N . The doctor’s master. N Eng J Med 1984; 311 (24): 1573–1575 at 1574.

    Article  CAS  Google Scholar 

  11. Paris JJ, Crone R, Reardon FE . Physician refusal of requested treatment: the case of Baby L. N Eng J Med 1990; 322: 1012–1014.

    Article  CAS  Google Scholar 

  12. Paris JJ, Miles SH, Kohrman A, Reardon F . Guidelines on the care of anencephalic infants: a response to Baby K. J Perinatol 1995; 15: 318–324.

    CAS  PubMed  Google Scholar 

  13. Paris JJ, Billings JA, Cummings B, Moreland MP . Howe v. MGH and Hudson v. Texas Children’s Hospital: two approaches to resolving family-physician disputes in end-of-life care. J Perinatol 2006; 26: 726–729.

    Article  CAS  Google Scholar 

  14. Paris JJ, Cummings BM, Moore MP . Brain death, dead, and parental denial: the case of Jahi McMath. Camb Q Healthc Ethics 2014; 23: 371–382.

    Article  Google Scholar 

  15. Brain-dead: Jahi McMath’s family searches for options as life-support cutoff looms, Global Ville News. Available at http://globalvillenews.com/tag.arthur.caplan/ Accessed on 17 January 2014.

  16. Thurow LC . Learning to say ‘No’. N Eng J Med 1984; 311 (24): 1569–1572 at 1571.

    Article  CAS  Google Scholar 

  17. President’s Commission for the Study of Problems in Medicine and Biomedical and Behavioral Research Deciding to Forgo Life-Sustaining Treatment. US Government Printing Office: Washington, DC, USA, 1983.

  18. Ethical and moral guidelines for the initiation, continuation and withdrawal of intensive care. American College of Chest Physicians/ Society of Critical Care Medicine Consensus Panel. Chest 1990; 97: 949–958.

  19. American Thoracic Society. Withholding and withdrawing life-sustaining therapy. An Intern Med 1991; 15: 478–485.

    Google Scholar 

  20. Cobb LA, Fahrenbrunch CE, Walsh TR, Copas MK, Olsufka M, Breskin M et al. Guidelines for cardiopulmonary resuscitation and emergency cardiac care. Emergency Cardiac Care Committee and Subcommittees, American Heart Association. Part VIII. Ethical considerations in resuscitation. JAMA 1992; 268: 2282–28.

  21. Consensus report on the ethics of foregoing life-sustaining treatments in the critically ill. Task Force on Ethics of the Society of Critical Care Medicine. Crit Care Med 1990; 18: 1435–1439.

  22. Dzeng E, Colaini A, Roland M, Chandler G, Smith T, Kelly MP et al. Influence of institutional culture and policies on do-not-resuscitate decision making at the end of life. JAMA Inter Med 2015; 175 (5): 812–819.

    Article  Google Scholar 

  23. Cole HM . Legal interventions during pregnancy: court-ordered medical treatments and legal penalties for potentially harmful behavior by pregnant women. JAMA 1996; 264 (2): 2663–2670 at 2666.

    Google Scholar 

  24. Truog RD . Is it always wrong to perform futile CPR? N Eng J Med 2010; 362: 477–479 at 448.

    Article  CAS  Google Scholar 

  25. Inglefinger F . Arrogance. N Eng J Med 1980; 303 (26): 1507–1511 at 1509.

    Article  Google Scholar 

  26. Quill TE, Brody H . Physicians recommendation and patient autonomy: finding a balance between physicians power and patient choice. Ann Inter Med 1996; 125 (9): 763–769 at 766.

    Article  CAS  Google Scholar 

  27. Salamon P, Hall GM . Patient empowerment and control: a psycho logical discourse in the service of medicine. Soc Sci Med 2003; 57 (10): 1969–1980.

    Article  Google Scholar 

  28. Billings JA, Krakauer EL . On patient autonomy and physician responsibility in end-of-life care. Arch Intern Med 2011; 171 (9): 849–853.

    Article  Google Scholar 

  29. Bruera E, Palmer JL, Pace E, Zhang K, Willey J, Strasser F et al. A randomized, controlled trial of physician postures when breaking bad news to cancer patients. Palliat Med 2007; 21: 501–505.

    Article  Google Scholar 

  30. Vanderkieft G . Breaking bad news. Am Fam Physician 2001; 64 (12): 1975–1978.

    Google Scholar 

  31. Lantos JD, Meadow WL Moral psychology of decision making. In: Lantos JD, Meadow WL (eds) Neonatal Bioethics: The Moral Challenges of Medical Innovation. Johns Hopkins University Press: Baltimore, MD, USA, 2006, 111–121.

  32. Dostoevsky F . The Brothers Karamazov. Farrar, Straus and Giroux: New York, NY, USA, 2002.

    Google Scholar 

  33. Paris JJ, Graham N, Schreiber MD, Goodwin M . Approaches to end-of-life decision-making in the NICU: insights from Dostoevsky’s The Grand Inquisitor. J Perinatol 2006; 26: 389–391 at 390.

    Article  CAS  Google Scholar 

  34. Consensus report on the ethics of foregoing life-sustaining treatments in the critically ill. Task force on ethics of the society of critical care medicine. Crit Care Med 1990; 18: 1435–1439.

  35. Hippocrates‘The art’ in Hippocrates. Trans. WHS Jones, Harvard University Press: Cambridge, MA, USA, 1923, pp 317–318..

Download references

Author information

Authors and Affiliations

  1. Bioethics, Boston College, Chestnut Hill, MA, USA

    J J Paris

  2. Department of Pediatrics, Stanford University School of Medicine, Stanford, CA, USA

    J J Paris

  3. Division of Neonatology, Lucile Packard Children's Hospital Stanford, Stanford, CA, USA

    V Pai & W E Benitz

  4. Department of Pediatrics, Massachusetts General Hospital, Boston, MA, USA

    B M Cummings

  5. Stanford University School of Medicine, Stanford, CA, USA

    J Batten

  6. Division of Neonatology, Stanford University School of Medicine, Stanford, CA, USA

    W E Benitz

Authors
  1. J J Paris
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. V Pai
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. B M Cummings
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. J Batten
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. W E Benitz
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to J J Paris.

Ethics declarations

Competing interests

The authors declare no conflict of interest.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Paris, J., Pai, V., Cummings, B. et al. Approaches to end-of-life discussions with parents of a profoundly compromised newborn. J Perinatol 37, 1078–1081 (2017). https://doi.org/10.1038/jp.2017.77

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/jp.2017.77

This article is cited by

Search

Advanced search

Quick links