Ethical frameworks for surrogates’ end-of-life planning experiences

Abstract

Despite the growing body of knowledge about surrogate decision making, we know very little about the use of ethical frameworks including ethical theories, principles, and concepts to understand surrogates’ day-to-day experiences in end-of-life care planning for incapacitated adults. This systematic review of 30 qualitative research papers was conducted to identify the types of ethical frameworks used to address surrogates’ experiences in end-of-life care planning for incapacitated adults as well as the most common themes or patterns found in surrogate decision making research.. Seven papers explicitly identified ethical theories, principles, or concepts for their studies, such as autonomy, substituted judgment, and best interests. Themes identified about surrogate decision making included: responsibilities and goals, factors affecting surrogates’ decision making, and outcomes for surrogates. In fact, an overarching theme of “wanting to do the right thing” for incapacitated adults and/or themselves was prominent. Understanding the complexity of surrogates’ experiences of end-of-life care planning is beyond the scope of conventional ethical frameworks. Ethical frameworks that address individuality and contextual variations related to decision making may more appropriately guide surrogate decision making research that explores surrogates’ end-of-life care planning experiences.

Ethics in nursing: A systematic review of the framework of evidence perspective

“…As a result of the examination, 15 studies dealt with ethics and nursing together; 32,52,57 –69 six studies addressed ethical difficulties/ethical dilemmas and nursing; 33,34,51,53,70,71 two studies were on ethical competence and nursing; 54,72 two studies were on nursing professional ethics; 14,73 one study was on ethics, education, and nursing; 74 and one study was conducted on ethics in health research. 75 It can be said that the search for equilibrium in the direction of findings obtained from studies with high level of evidence about nursing and ethics continued and that the common focal point of the researches concentrated on the preferences and characteristics of the nurses.…”

“…Studies conducted in the field of ethics and nursing include the following subjects: care of patients who demand euthanasia and ethical interrogations of nurses, 59 ethical sensitivities of nurses, 65 moral courage of nurses, 52 ethical support mechanisms for older people care, 67 ethical dilemmas experienced by surrogate decision-makers, 61 ethical dimensions of pediatric nursing, 58 factors affecting professional values among nursing students and teachers, 66 ethical issues in nursing homes, 57 ethical situations faced by nurses in rare or unusual situations, 68 technology and ethics in nursing, 62 psychometric properties of the instruments measuring the quality of care and care ethics, 63 technical and ethical aspects of nursing care, 69 sexual and ethical situations in care homes, 64 publication ethics in the field of pediatric nursing, 32 and nurses’ decisions about physical restraint situations. 60 The versatility of the studies under this theme may be due to the fact that the nursing profession undertakes positions in many areas such as training, counseling, case management, and care.…”

“…52 It has been found that the ethical dilemmas of those individuals who are surrogate decision-makers in caring for people with inadequate capacity are frequent and unclear. 61 It has been determined that there are only a few qualitative types of studies evaluating ethical dimensions in pediatric nursing and that more research on publication ethics is required. 32,58 Institutional ethical support mechanisms for individuals aged 65 years and over have been divided into four categories, focusing on ethical issues and adapted to the nurses’ concrete learning style.…”

Overview of Systematic Reviews of Advance Care Planning: Summary of Evidence and Global Lessons

“…70,72e74 It is important for the patient to appoint someone who knows them well, usually a family member or spouse, given that patients are more concerned with whom will make the decision than with the decision itself. 72 Although surrogates try to do the right thing by protecting and advocating for their family member, 74 being a proxy decision maker can be stressful and anxiety producing. 72,73 Focus should be placed on providing surrogates with appropriate information and supporting them emotionally.…”

State of advance care planning research: A descriptive overview of systematic reviews

“…Experiences, perceptions or attitudes towards ACP Studies that examined the experiences towards the ACP process, its discussions and its effects for different stakeholders 6 (8) Fosse et al, 2014;S. Johnson et al, 2015;Ke et al, 2015;Kim et al, 2017;Lee, Hinderer, & Kehl, 2014;Tong et al, 2014 7. Effectiveness of ACP Studies investigating ACP effectiveness, looking at different ACP interventions or using a variety of outcome measures 6 (8) Brinkman-Stoppelenburg et al, 2014;Houben et al, 2014;Jezewski et al, 2007;Patel et al, 2004;Robinson et al, 2012;Tamayo-Velazquez et al, 2010 8.…”