Factors Influencing End-of-Life Decision-Making by Critically Ill Adult Patients, Surrogate Decision-Makers and Health Care Professionals: A Systematic Review.

Author(s):  
DW Frost ◽  
RA Fowler
2016 ◽  
Vol 40 (1) ◽  
pp. 84-120 ◽  
Author(s):  
Grant Pignatiello ◽  
Ronald L. Hickman ◽  
Breanna Hetland

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.


Author(s):  
Deborah A. Lafond ◽  
Katherine Patterson Kelly

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.


Author(s):  
Pamela S. Hinds ◽  
Linda L. Oakes ◽  
Wayne L. Furman

The purposes of this chapter are to offer a review of the current literature (both clinical and research-based) on end-of-life decision-making in pediatrics, with a special emphasis on pediatric oncology, and to offer guidelines for the use of health-care professionals in assisting children, adolescents, their parents, and other healthcare professionals in making such decisions.


2009 ◽  
Vol 16 (6) ◽  
pp. 743-758 ◽  
Author(s):  
Joanne Whitty-Rogers ◽  
Marion Alex ◽  
Cathy MacDonald ◽  
Donna Pierrynowski Gallant ◽  
Wendy Austin

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.


2019 ◽  
Vol 37 (5) ◽  
pp. 354-363
Author(s):  
Valerie Satkoske ◽  
Joann M. Migyanka ◽  
David Kappel

With the growing number of individuals with Autism Spectrum Disorder (ASD) reaching the age of consent, health-care providers must be prepared to bridge gaps in their knowledge of ASD. This is especially true for clinicians who may have to determine if a person with ASD has the capacity to engage in end-of-life decision making, complete advance directives, or act as a surrogate decision maker for someone else. This paper provides an overview of the unique characteristics of autism as related to the communication, cognitive processing, and the capability to participate in advance care planning and, when acting as a surrogate decision maker, to consider the values and preferences of others. In addition, we examine the roles and responsibilities of clinician as facilitator of shared health-care decision making communication with the individual who has autism. Consideration is given to determining capacity, planning for atypical responses, the impact or lack of influence of the framing effect, and strategies for presenting information. Finally, we will offer health-care providers information and examples for adapting their existing end-of-life decision-making tools and conversation guides to meet the communication needs of persons with ASD.


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