Skip to main content
SpringerLink
Log in

Intractable Disagreements About Futility in the PICU

  • Chapter
  • First Online:
Bioethics in the Pediatric ICU: Ethical Dilemmas Encountered in the Care of Critically Ill Children

Part of the book series: International Library of Ethics, Law, and the New Medicine ((LIME,volume 77))

  • 305 Accesses

Abstract

Much distress may be felt within the PICU setting regarding the impression that “futile,” or “inappropriate” care is being provided. While a clear definition of futility remains elusive in the medical community, efforts have been made by critical care societies to differentiate between appropriate therapeutic options from potentially inappropriate and inappropriate treatments. Inappropriate treatments should not be offered. However, it can be challenging to know when some benefit is worthy of pursuit (such as a “slow code” for the sake of the family). Families may have cultural or religious values which may translate into a treatment having benefit to them. Healthcare workers typically are most concerned when issues surrounding futility lead to intractable disagreements. These issues seem to occur rarely in pediatric critical care settings, but can lead tension with consequences to medical care. However, intractable disagreements about medical treatments are most frequently resolved through excellent communication. Understanding the values and information that underpin parents’ requests is the first step to resolution and may reveal that a therapy is not truly without some benefit.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 84.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Hardcover Book
USD 109.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Bertolini, G., et al. 2010. End-of-life decision-making and quality of ICU performance: An observational study in 84 Italian units. Intensive Care Medicine 36 (9): 1495–1504.

    Google Scholar 

  • Birchley, G. 2018. Charlie Gard and the weight of parental rights to seek experimental treatment. Journal of Medical Ethics 44 (7): 448–452.

    Google Scholar 

  • Blackhall, L.J. 1987. Must we always use CPR? New England Journal of Medicine 317 (20): 1281–1285.

    Google Scholar 

  • Boelens, J.J., et al. 2013. Outcomes of transplantation using various hematopoietic cell sources in children with Hurler syndrome after Myeloablative conditioning. Blood 121 (19): 3981–3987.

    Google Scholar 

  • Bosslet, G.T., et al. 2015. An Official ATS/AACN/ACCP/ESICM/SCCM policy statement: Responding to requests for potentially inappropriate treatments in intensive care units. American Journal of Respiratory and Critical Care Medicine 191 (11): 1318–1330.

    Google Scholar 

  • Caplan, A. 2013. Death, brain death, and life support, January 18, 2017. Available from: http://www.bioethics.net/2013/12/death-brain-death-and-life-support/.

  • Casarett, D., and M. Siegler. 1999. Unilateral do-not-attempt-resuscitation orders and ethics consultation: A case series. Critical Care Medicine 27 (6): 1116–1120.

    Google Scholar 

  • Choma, D.P., K.L. Cavanaugh, and J.P. Dwyer. 2010. Is it always wrong to perform futile CPR? New England Journal of Medicine 362 (21): 2036; author reply 2036–2037.

    Google Scholar 

  • Cotler, M.P., and D.R. Gregory. 1993. Futility: Is definition the problem? Part I. Cambridge Quarterly of Healthcare Ethics 2 (2): 219–224.

    Google Scholar 

  • Cranford, R.E. 1994. Medical futility: Transforming a clinical concept into legal and social policies. Journal of the American Geriatrics Society 42 (8): 894–898.

    Google Scholar 

  • Diekema, D.S. 2011. Revisiting the best interest standard: Uses and misuses. Journal of Clinical Ethics 22 (2): 128–133.

    Google Scholar 

  • Epstein, E.G., and A.B. Hamric. 2009. Moral distress, moral residue, and the crescendo effect. Journal of Clinical Ethics 20 (4): 330–342.

    Google Scholar 

  • Feltman, D., et al. 2014. Is treatment futile for an extremely premature infant with giant omphalocele? Pediatrics 133 (1): 123–128.

    Google Scholar 

  • Fine, R.L. 2010. Is it always wrong to perform futile CPR? New England Journal of Medicine 362 (21): 2035; author reply 2036–2037.

    Google Scholar 

  • Fine, R.L., and T.W. Mayo. 2003. Resolution of futility by due process: Early experience with the Texas advance directives act. Annals of Internal Medicine 138 (9): 743–746.

    Google Scholar 

  • Forbat, L., et al. 2016. Conflict in a paediatric hospital: A prospective mixed-method study. Archives of Disease in Childhood 101 (1): 23–27.

    Google Scholar 

  • Frader, J., and K. Michelson. 2007. Can policy spoil compassion? Pediatric Critical Care Medicine 8 (3): 293–294.

    Google Scholar 

  • Frader, J., E. Kodish, and J.D. Lantos. 2010. Ethics rounds. Symbolic resuscitation, medical futility, and parental rights. Pediatrics 126 (4): 769–772.

    Google Scholar 

  • Gatter Jr., R.A., and J.C. Moskop. 1995. From futility to triage. Journal of Medicine and Philosophy 20 (2): 191–205.

    Google Scholar 

  • Grossman, E., and P. Angelos. 2009. Futility: What Cool Hand Luke can teach the surgical community. World Journal of Surgery 33 (7): 1338–1340.

    Google Scholar 

  • Halevy, A., and B.A. Brody. 1996. A multi-institution collaborative policy on medical futility. JAMA 276 (7): 571–574.

    Google Scholar 

  • Hammond-Browning, N. 2017. When doctors and parents don’t agree: The story of Charlie Gard. Journal of Bioethical Inquiry 14 (4): 461–468.

    Google Scholar 

  • Hamric, A.B., and L.J. Blackhall. 2007. Nurse-physician perspectives on the care of dying patients in intensive care units: Collaboration, moral distress, and ethical climate. Critical Care Medicine 35 (2): 422–429.

    Google Scholar 

  • Hanto, D.W., and K. Ladin. 2010. Is it always wrong to perform futile CPR? New England Journal of Medicine, 362 (21): 2034–2035; author reply 2036–2037.

    Google Scholar 

  • Helft, P.R., M. Siegler, and J. Lantos. 2000. The rise and fall of the futility movement. New England Journal of Medicine 343 (4): 293–296.

    Google Scholar 

  • Henrikson, C.A. 2010. Is it always wrong to perform futile CPR? New England Journal of Medicine 362 (21): 2036; author reply 2036–2037.

    Google Scholar 

  • Janvier, A., K. Barrington, and B. Farlow. 2014. Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology. Seminars in Perinatology 38 (1): 38–46.

    Google Scholar 

  • Johnson, S.H., et al. 1997. Legal and institutional policy responses to medical futility. Journal of Health and Hospital Law 30 (1): 21–36.

    Google Scholar 

  • Kapottos, M., and S. Youngner. 2015. The Texas advanced directive law: Unfinished business. American Journal of Bioethics 15 (8): 34–38.

    Google Scholar 

  • Kon, A.A., et al. 2016. Defining futile and potentially inappropriate interventions: A policy statement from the society of critical care medicine ethics committee. Critical Care Medicine 44 (9): 1769–1774.

    Google Scholar 

  • Lantos, J.D., et al. 1989. The illusion of futility in clinical practice. American Journal of Medicine 87 (1): 81–84.

    Google Scholar 

  • Leeuwenburgh-Pronk, W.G., et al. 2015. Are we allowed to discontinue medical treatment in this child? Pediatrics 135 (3): 545–549.

    Google Scholar 

  • Luce, J.M. 2010. A history of resolving conflicts over end-of-life care in intensive care units in the United States. Critical Care Medicine 38 (8): 1623–1629.

    Google Scholar 

  • Luce, J.M. 2015. The uncommon case of Jahi McMath. Chest 147 (4): 1144–1151.

    Google Scholar 

  • Manara, A.R., J.A. Pittman, and F.E. Braddon. 1998. Reasons for withdrawing treatment in patients receiving intensive care. Anaesthesia 53 (6): 523–528.

    Google Scholar 

  • McDougall, R.J., and L. Notini. 2016. What kinds of cases do paediatricians refer to clinical ethics? Insights from 184 case referrals at an Australian paediatric hospital. Journal of Medical Ethics 42 (9): 586–591.

    Google Scholar 

  • Miller, R.B. 2003. Children, ethics, & modern medicine. IN: Indiana University Press.

    Google Scholar 

  • Mohrmann, M.M. 2006. Whose interests are they anyway? Journal of Religious Ethics 34: 141–150.

    Google Scholar 

  • Moore, L. 1998. Birds of America. New York: Alfred Knopf.

    Google Scholar 

  • Moore, D., et al. 2008. The prevalence of and survival in mucopolysaccharidosis I: Hurler, Hurler-Scheie and Scheie syndromes in the UK. Orphanet Journal of Rare Diseases 3: 24.

    Google Scholar 

  • Moreno, S. 2007. Case puts Texas futile-treatment law under a microscope. Washington Post.

    Google Scholar 

  • Morrison, W., and V. Madrigal. 2012. “My way or the highway” versus “whatever the family wants”—Intensivists reject both extremes. Pediatric Critical Care Medicine 13 (5): 612–613.

    Google Scholar 

  • Naghib, S., et al. 2010. Mortality in very long-stay pediatric intensive care unit patients and incidence of withdrawal of treatment. Intensive Care Medicine 36 (1): 131–136.

    Google Scholar 

  • Nevada, S.C.O. 2015. In re Aden Hailu. Nevada Advanced Opinion 89.

    Google Scholar 

  • Okhuysen-Cawley, R., M.L. McPherson, and L.S. Jefferson. 2007. Institutional policies on determination of medically inappropriate interventions: Use in five pediatric patients. Pediatric Critical Care Medicine 8 (3): 225–230.

    Google Scholar 

  • Paris, J.J., R.K. Crone, and F. Reardon. 1990. Physicians’ refusal of requested treatment. The case of Baby L. New England Journal of Medicine 322 (14): 1012–1015.

    Google Scholar 

  • Paris, J.J., et al. 2017. The Charlie Gard case: British and American approaches to court resolution of disputes over medical decisions. Journal of Perinatology 37 (12): 1268–1271.

    Google Scholar 

  • Paulus, S.M. 1985. In re L.H.R. Issues in Law and Medicine 1 (3): 233–236.

    Google Scholar 

  • Pope, T.M., and K. Kemmerling. 2016. Legal briefing: Stopping nonbeneficial life-sustaining treatment without consent. Journal of Clinical Ethics 27 (3): 254–264.

    Google Scholar 

  • Robinson, E.M., et al. 2017. After the DNR: Surrogates who persist in requesting cardiopulmonary resuscitation. Hastings Center Report 47 (1): 10–19.

    Google Scholar 

  • Rubin, S. 1998. When doctors say no: The battleground of medical futility. Indiana: Indiana University Press.

    Google Scholar 

  • Sadovnikoff, N. 2010. Is it always wrong to perform futile CPR? New England Journal of Medicine 362 (21): 2035; author reply 2036–2037.

    Google Scholar 

  • Sands, R., et al. 2009. Characteristics of deaths in paediatric intensive care: A 10-year study. Nursing in Critical Care 14 (5): 235–240.

    Google Scholar 

  • Schneiderman, L.J. 2011. Wrong medicine: Doctors, patients, and futile treatment. Baltimore, Maryland: Johns Hopkins University Press.

    Google Scholar 

  • Schuklenk, U. 2018. Bioethics culture wars—2018 edition: Alfie Evans. Bioethics 32 (5): 270–271.

    Google Scholar 

  • Shah, S.K., A.R. Rosenberg, and D.S. Diekema. 2017. Charlie Gard and the limits of best interests. JAMA Pediatrics 171 (10): 937–938.

    Google Scholar 

  • Stark, Z., J. Hynson, and M. Forrester. 2008. Discussing withholding and withdrawing of life-sustaining medical treatment in paediatric inpatients: Audit of current practice. Journal of Paediatrics and Child Health 44 (7–8): 399–403.

    Google Scholar 

  • Studdert, D.M., et al. 2003. Nature of conflict in the care of pediatric intensive care patients with prolonged stay. Pediatrics 112 (3 Pt 1): 553–558.

    Google Scholar 

  • Thomas, S.M., et al. 2015. Not just little adults: A review of 102 paediatric ethics consultations. Acta Paediatrica 104 (5): 529–534.

    Google Scholar 

  • Truog, R.D. 2010. Is it always wrong to perform futile CPR? New England Journal of Medicine 362 (6): 477–479.

    Google Scholar 

  • Truog, R.D., A.S. Brett, and J. Frader. 1992. The problem with futility. New England Journal of Medicine 326 (23): 1560–1564.

    Google Scholar 

  • U.S. District Court, E.D.V. 1993. Alexandria Division. In re Baby K. Fed Suppl 832: 1022–1031.

    Google Scholar 

  • Varelas, P.N., et al. 2009. Withdrawal of life support in critically ill neurosurgical patients and in-hospital death after discharge from the neurosurgical intensive care unit. Clinical article. Journal of Neurosurgery 111 (2): 396–404.

    Google Scholar 

  • Veatch, R.M., and C.M. Spicer. 1992. Medically futile care: The role of the physician in setting limits. American Journal of Law and Medicine 18 (1–2): 15–36.

    Google Scholar 

  • Vemuri, G., and S.D. Playfor. 2006. Futility and inappropriate care in pediatric intensive care: A cross-sectional survey. Paediatric Anaesthesia 16 (3): 309–313.

    Google Scholar 

  • Verhagen, A.A., et al. 2010. Categorizing neonatal deaths: A cross-cultural study in the United States, Canada, and The Netherlands. Journal of Pediatrics 156 (1): 33–37.

    Google Scholar 

  • White, D.B., et al. 2007. Toward shared decision making at the end of life in intensive care units: Opportunities for improvement. Archives of Internal Medicine 167 (5): 461–467.

    Google Scholar 

  • Zawacki, B.E. 1995. The “futility debate” and the management of Gordian knots. Journal of Clinical Ethics 6 (2): 112–127.

    Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Pediatric Critical Care Medicine, Children’s Mercy Hospital Department of Pediatrics, University of Missouri-Kansas, Kansas City, MO, USA

    Laura Miller-Smith

  2. Pediatric Critical Care Medicine, Children’s Mercy Hospital Department of Pediatrics, University of Missouri-Kansas, Kansas City, MO, USA

    Ásdís Finnsdóttir Wagner

  3. Children’s Mercy Hospital Bioethics Center and Department of Pediatrics, University of Missouri-Kansas, Kansas City, MO, USA

    John D. Lantos

Authors
  1. Laura Miller-Smith
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Ásdís Finnsdóttir Wagner
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. John D. Lantos
    View author publications

    You can also search for this author in PubMed Google Scholar

Rights and permissions

Reprints and permissions

Copyright information

© 2019 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Miller-Smith, L., Finnsdóttir Wagner, Á., Lantos, J.D. (2019). Intractable Disagreements About Futility in the PICU. In: Bioethics in the Pediatric ICU: Ethical Dilemmas Encountered in the Care of Critically Ill Children. International Library of Ethics, Law, and the New Medicine, vol 77. Springer, Cham. https://doi.org/10.1007/978-3-030-00943-4_6

Download citation

Publish with us

Policies and ethics

Search

Navigation