Working with Children in End-of-Life Decision Making

2009 ◽  
Vol 16 (6) ◽  
pp. 743-758 ◽  
Author(s):  
Joanne Whitty-Rogers ◽  
Marion Alex ◽  
Cathy MacDonald ◽  
Donna Pierrynowski Gallant ◽  
Wendy Austin
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Decision Makers ◽  
Ethical Challenges ◽  
Children And Families ◽  
Best Interest ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
End Of Life Decision

Traditionally, physicians and parents made decisions about children’s health care based on western practices. More recently, with legal and ethical development of informed consent and recognition for decision making, children are becoming active participants in their care. The extent to which this is happening is however blurred by lack of clarity about what children — of diverse levels of cognitive development — are capable of understanding. Moreover, when there are multiple surrogate decision makers, parental and professional conflict can arise concerning children’s ‘best interest’. Giving children a voice and offering choice promotes their dignity and quality of life. Nevertheless, it also presents with many challenges. Case studies using pseudonyms and changed situational identities are used in this article to illuminate the complexity of ethical challenges facing nurses in end-of-life care with children and families.

Whose Decision Is This?

2020 ◽  
pp. 3-6
Author(s):  
Elissa G. Miller
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Surrogate Decision Making ◽  
Life Care ◽  
Best Interest ◽  
Best Interest Standard ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
End Of Life Decision

Decision-making in palliative and end-of-life care can be difficult to navigate. This is even more so in pediatric palliative and end of life care when parents may disagree with each other or for teenagers who are not yet legally able to make their own medical decisions. Surrogate decision making can also complicate end of life decision making in pediatrics. To navigate these complex situations, the best interest standard, harm principle, and other standards are often applied when concerns arise over surrogate decision-making. This chapter presents a discussion of the ethical principles and a recommended approach to managing clinical situations with uncertain or conflicting surrogate decision-makers.

scholarly journals End-of-Life Decision Support in the ICU: Where Are We Now?

2016 ◽  
Vol 40 (1) ◽  
pp. 84-120 ◽  
Author(s):  
Grant Pignatiello ◽  
Ronald L. Hickman ◽  
Breanna Hetland
Keyword(s):  
Intensive Care Unit ◽  
Decision Making ◽  
Intensive Care ◽  
Decision Support ◽  
End Of Life ◽  
Decision Makers ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
End Of Life Decision ◽  
Life Decision

Determining effective decision support strategies that enhance quality of end-of-life decision making in the intensive care unit is a research priority. This systematic review identified interventional studies describing the effectiveness of decision support interventions administered to critically ill patients or their surrogate decision makers. We conducted a systematic literature search using PubMed, CINAHL, and Cochrane. Our search returned 121 articles, 22 of which met the inclusion criteria. The search generated studies with significant heterogeneity in the types of interventions evaluated and varied patient and surrogate decision-maker outcomes, which limited the comparability of the studies. Few studies demonstrated significant improvements in the primary outcomes. In conclusion, there is limited evidence on the effectiveness of end-of-life decision support for critically ill patients and their surrogate decision makers. Additional research is needed to develop and evaluate innovative decision support interventions for end-of-life decision making in the intensive care unit.

Ethics in Pediatric Anesthesiology

2018 ◽  
Author(s):  
Monica Shah ◽  
David Waisel
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Ethics Committees ◽  
Decision Makers ◽  
Best Interest ◽  
Medical Decisions ◽  
Risks And Benefits ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
Life Therapy

Ethical principles affect daily decision-making in pediatric anesthesiology. These medical decisions are interlaced with the ethical components of informed consent and obligations to the child and family. Informed consent in pediatrics includes the concepts of best interest, in which the parents or other surrogate decision-makers choose acceptable treatment for the child, and assent, which enables children to participate in decision-making to the best of their ability. Of equal significance to informed consent, the process of informed refusal requires anesthesiologists to more fully inform children and their guardians about risks and benefits while respecting refusal of assent and avoiding coercion. Pediatric considerations regarding end-of-life therapy are slightly different than adult considerations. To help resolve these ethical dilemmas, ethics committees are available for consultations to assist the medical team, family members, and patients in order to make the best decision for the child.

End-of-Life Decision-Making in Pediatric Oncology

2019 ◽  
pp. 736-748
Author(s):  
Deborah A. Lafond ◽  
Katherine Patterson Kelly
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Healthcare Providers ◽  
Communication Style ◽  
Serious Illness ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
End Of Life Decision ◽  
Informed Patient ◽  
Life Decision

Decision-making for parents facing the serious illness of a child is difficult, particularly when facing end-of-life decisions. Healthcare providers can influence patients’ and parents’ end-of-life decision-making involvement by communication style and timing of the discussion. Children and adolescents need assistance making decisions based on their cognitive development, which necessitates the assessment of each patient’s competence and preference for decision involvement. Competence and preference for decision-making should also be explored for parents and other surrogate decision-makers. Preferences for treatment should be balanced between the child or adolescent and the caregiver or surrogate. Nurses have a professional responsibility to facilitate informed patient and surrogate decision-making at the end of life.

scholarly journals Forgoing life-sustaining treatment – a comparative analysis of regulations in Japan, Korea, Taiwan, and England

2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Miho Tanaka ◽  
Satoshi Kodama ◽  
Ilhak Lee ◽  
Richard Huxtable ◽  
Yicheng Chung
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Asian Countries ◽  
Regulatory Frameworks ◽  
Life Sustaining Treatment ◽  
Surrogate Decision Makers ◽  
Incapacitated Patients ◽  
Surrogate Decision ◽  
Definition Of ◽  
End Of Life Decision

Abstract Background Regulations on forgoing life-sustaining treatment (LST) have developed in Asian countries including Japan, Korea and Taiwan. However, other countries are relatively unaware of these due to the language barrier. This article aims to describe and compare the relevant regulatory frameworks, using the (more familiar) situation in England as a point of reference. We undertook literature reviews to ascertain the legal and regulatory positions on forgoing LST in Japan, Korea, Taiwan, and England. Main text Findings from a literature review are first presented to describe the development of the regulatory frameworks surrounding the option of forgoing LST in each country. Based on the findings from the four countries, we suggest five ethically important points, reflection on which should help to inform the further development of regulatory frameworks concerning end-of-life care in these countries and beyond. There should be reflection on: (1) the definition of – and reasons for defining – the ‘terminal stage’ and associated criteria for making such judgements; Korea and Taiwan limit forgoing LST to patients in this stage, but there are risks associated with defining this too narrowly or broadly; (2) foregoing LST for patients who are not in this stage, as is allowed in Japan and England, because here too there are areas of controversy, including (in England) whether the law in this area does enough to respect the autonomy of (now) incapacitated patients; (3) whether ‘foregoing’ LST should encompass withholding and withdrawing treatment; this is also an ethically disputed area, particularly in the Asian countries we examine; (4) the family’s role in end-of-life decision-making, particularly as, compared with England, the three Asian countries traditionally place a greater emphasis on families and communities than on individuals; and (5) decision-making with and for those incapacitated patients who lack families, surrogate decision-makers or ADs. Conclusion Comparison of, and reflection on, the different legal positions that obtain in Japan, Korea, Taiwan, and England should prove informative and we particularly invite reflection on five areas, in the hope the ensuing discussions will help to establish better end-of-life regulatory frameworks in these countries and elsewhere.

The new futility? The rhetoric and role of “suffering” in pediatric decision-making

2019 ◽  
Vol 27 (1) ◽  
pp. 16-27
Author(s):  
Erica K Salter
Keyword(s):  
Decision Making ◽  
Decision Makers ◽  
Medical Decision ◽  
Value Judgments ◽  
Medical Decisions ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
Pediatric Decision Making

This article argues that while the presence and influence of “futility” as a concept in medical decision-making has declined over the past decade, medicine is seeing the rise of a new concept with similar features: suffering. Like futility, suffering may appear to have a consistent meaning, but in actuality, the concept is colloquially invoked to refer to very different experiences. Like “futility,” claims of patient “suffering” have been used (perhaps sometimes consciously, but most often unconsciously) to smuggle value judgments about quality of life into decision-making. And like “futility,” it would behoove us to recognize the need for new, clearer terminology. This article will focus specifically on secondhand claims of patient suffering in pediatrics, but the conclusions could be similarly applied to medical decisions for adults being made by surrogate decision-makers. While I will argue that suffering, like futility, is not sufficient wholesale justification for making unilateral treatment decisions, I will also argue that claims of patient suffering cannot be ignored, and that they almost always deserve some kind of response. In the final section, I offer practical suggestions for how to respond to claims of patient suffering.

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