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.

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.

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.

Process and impact of an advance care planning intervention evaluated by bereaved surrogate decision-makers of dialysis patients

2016 ◽  
Vol 31 (3) ◽  
pp. 267-274 ◽  
Author(s):  
Mi-Kyung Song ◽  
Maureen Metzger ◽  
Sandra E Ward
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Advance Care Planning ◽  
Care Planning ◽  
Dialysis Patients ◽  
Advance Care ◽  
Surrogate Decision ◽  
End Of Life Decision ◽  
Life Decision ◽  
Planning Intervention

Background: Few studies have examined the process and impact of an advance care planning intervention experienced by surrogate decision-makers of dialysis patients. Aim: To explore the perspectives of the bereaved surrogates of dialysis patients on the process and impact of an advance care planning intervention and to compare the perceived impacts of the intervention between African Americans and Whites. Design: Qualitative interviews and thematic analysis. Setting/participants: 24 bereaved surrogates of patients from outpatient dialysis centers were interviewed. Both patients and surrogates had been participants in a larger efficacy study and had received an advance care planning intervention, SPIRIT (Sharing Patient’s Illness Representations to Increase Trust). Results: Two themes related to the process of SPIRIT were as follows: (1) SPIRIT provided a welcome opportunity to think about and discuss topics that had been avoided and (2) SPIRIT helped patients and surrogates to share their feelings. Four themes of the SPIRIT’s impact were as follows: (1) SPIRIT was an eye-opening experience, acquiring knowledge and understanding of the patient’s illness and end-of-life care, (2) SPIRIT helped strengthen relationships between patients and surrogates, (3) SPIRIT helped surrogates feel prepared during the time leading up to end-of-life decision-making, and (4) SPIRIT helped surrogates have peace of mind during and after actual end-of-life decision-making. Themes related to SPIRIT’s impact on feeling prepared for end-of-life decision-making and the actual decision-making experience more frequently occurred in African Americans than in Whites. Conclusion: Our data may help explain the beneficial effects of SPIRIT on surrogates, but future trials should include data on control surrogates’ perspectives.

Overcoming Challenges to Surrogate Decision Making for Young Adults at the End of Life

2021 ◽  
Vol 38 (6) ◽  
pp. 596-600
Author(s):  
Nathan Lightfoot ◽  
Yordanka Kirkova ◽  
Stephen Fox ◽  
Sheinei Alan
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Moral Distress ◽  
Medical Decision ◽  
Community Group ◽  
Advanced Directives ◽  
End Of Life Decisions ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
Improve Patient

Surrogate decision makers (SDMs) are challenged by difficult decisions at the end of life. This becomes more complex in young adult patients when parents are frequently the SDMs. This age group (18 to 39 years old) commonly lacks advanced directives to provide guidance which results in increased moral distress during end of life decisions. Multiple factors help guide medical decision making throughout a patient’s disease course and at the end of life. These include personal patient factors and SDM factors. It has been identified that spiritual and community group support is a powerful, but inadequately used resource for these discussions. It can improve patient-SDM-provider communications, decrease psycho-social distress, and avoid unnecessary interventions at the end of life.

scholarly journals Doctors’ perceptions of how resource limitations relate to futility in end-of-life decision making: a qualitative analysis

2019 ◽  
Vol 45 (6) ◽  
pp. 373-379 ◽  
Author(s):  
Eliana Close ◽  
Ben P White ◽  
Lindy Willmott ◽  
Cindy Gallois ◽  
Malcolm Parker ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Moral Distress ◽  
Medical Specialties ◽  
Resource Limitations ◽  
Tertiary Hospitals ◽  
Definition Of ◽  
Scarcity Of Resources ◽  
End Of Life Decision ◽  
Life Decision

ObjectiveTo increase knowledge of how doctors perceive futile treatments and scarcity of resources at the end of life. In particular, their perceptions about whether and how resource limitations influence end-of-life decision making. This study builds on previous work that found some doctors include resource limitations in their understanding of the concept of futility.SettingThree tertiary hospitals in metropolitan Brisbane, Australia.DesignQualitative study using in-depth, semistructured, face-to-face interviews. Ninety-six doctors were interviewed in 11 medical specialties. Transcripts of the interviews were analysed using thematic analysis.ResultsDoctors’ perceptions of whether resource limitations were relevant to their practice varied, and doctors were more comfortable with explicit rather than implicit rationing. Several doctors incorporated resource limitations into their definition of futility. For some, availability of resources was one factor of many in assessing futility, secondary to patient considerations, but a few doctors indicated that the concept of futility concealed rationing. Doctors experienced moral distress due to the resource implications of providing futile treatment and the lack of administrative supports for bedside rationing.ConclusionsDoctors’ ability to distinguish between futility and rationing would be enhanced through regulatory support for explicit rationing and strategies to support doctors’ role in rationing at the bedside. Medical policies should address the distinction between resource limitations and futility to promote legitimacy in end-of-life decision making.

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