Skip to main content Accessibility help
×
Hostname: page-component-78c5997874-lj6df Total loading time: 0 Render date: 2024-11-02T19:01:58.925Z Has data issue: false hasContentIssue false

18 - End-of-life care: resolving disputes over life-sustaining interventions

from Section 3 - When a child dies: ethical issues at the end of life

Published online by Cambridge University Press:  07 October 2011

Douglas S. Diekema
Affiliation:
Seattle Children's Research Institute
Mark R. Mercurio
Affiliation:
Yale University School of Medicine
Mary B. Adam
Affiliation:
Department of Pediatrics, University of Arizona School of Medicine, Tucson
Get access

Summary

Case narrative

A 7-year-old boy with recurrent medulloblastoma presents to the emergency department with seizures. He receives multiple antiepileptics and subsequently loses the ability to protect his airway. As a result, he is intubated and supported with mechanical ventilation. Over the next several days he requires high doses of benzodiazepines and barbiturates to control his seizures. Eventually, his seizures stop and physicians modify the antiepileptic agents to a maintenance regimen. He is evaluated for extubation. Because of his waxing and waning mental status and frequent apneic episodes (not related to medications) he does not meet extubation criteria. Imaging of his brain demonstrates spread of his brain tumor despite previous aggressive chemotherapy. The neuro-oncologist acknowledges that no therapeutic alternatives remain to lessen tumor burden or halt progression of the disease. The clinicians hold a meeting with the family to discuss care options and goals and create a clinical plan.

Ethical principles and discussion

Medical technologies provide the opportunity to maintain life artificially and, at times, nearly indefinitely. Most of the time life support appropriately allows time for patients to recover from complex surgery or devastating illness. However, at other times technology sustains bodily functions with no realistic possibility of cure or return to what involved parties consider a reasonable quality of life. In these situations determining when to forgo life-sustaining therapies provides clinical and emotional challenges for families and the clinicians caring for the critically ill children. While some argue that the “sanctity of life” is absolute and the full complement of available technologies should always be used to maintain life, others believe in the moral permissibility of forgoing life-sustaining therapies (FLT) in certain situations. In this chapter, we address the ethical issues posed by FLT through a discussion of the steps involved in reasoned decision making: first, recognizing criteria for considering FLT; second, deliberating about the FLT decision; and third, determining whether or not to go ahead with FLT. We also discuss the specific issues pertinent to decisions about discontinuing medically provided fluids and nutrition (MPFN). Finally, we briefly consider issues related to care of patients for whom a decision to forgo life-sustaining therapies has been made.

Type
Chapter
Information
Clinical Ethics in Pediatrics
A Case-Based Textbook
, pp. 101 - 105
Publisher: Cambridge University Press
Print publication year: 2011

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

American Academy of Pediatrics 1994 Guidelines on foregoing life-sustaining medical treatmentPediatrics 93 532Google Scholar
American Academy of Pediatrics 1995 Informed consent, parental permission, and assent in pediatric practicePediatrics 95 314Google Scholar
Charles, C.Gafni, A.Whelan, T. 1999 Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making modelSocial Science and Medicine 49 651Google Scholar
Diekema, D.S. 2004 Parental refusals of medical treatment: the harm principle as threshold for state interventionTheoretical Medicine and Bioethics 25 243Google Scholar
Diekema, D.S.Botkin, J.R. 2009 Clinical report – forgoing medically provided nutrition and hydration in childrenPediatrics 124 813Google Scholar
Frader, J. E.Michelson, K. 2011 Care, Pediatric CriticalFuhrman, B.Zimmerman, J.Philadelphia, PAMosby Elsevier
Offices of the Congregation for the Doctrine of the Faith 2007 www.vatican.va/roman_curia/congretations/cfaith/documents/rc_con_cfaith_doc_20070810_risposte-usa_en.html
President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research 1983 Deciding to Forego Life-Sustaining TreatmentWashington, DCUS Government Printing Office
Truog, R.D.Brett, A.S.Frader, J. 1992 The problem with futilityNew England Journal of Medicine 326 1560Google Scholar

Save book to Kindle

To save this book to your Kindle, first ensure [email protected] is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Available formats
×

Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

Available formats
×

Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

Available formats
×