8- 10 Others suggest that surrogate decision making, based on best interests of ill family members, is also compromised by SDMs’ limited understanding of ill family members’ medical information. However, the ethical concepts of substituted judgment and the best-interest standard generate debate among ethicists and healthcare professionals because evidence suggests that SDMs’ accuracy in predicting ill family members’ preferences for EOL care is poor to moderate. 1 For this standard, the patient’s current and future interests should be considered weighing the patient’s previous treatment experiences, health trajectories, goals of treatment, and potential benefits and burdens of treatment as well as his/her values and beliefs. 1, 6 Using the concept of substituted judgment, SDMs should make decisions based on “the patient’s inferred values and preferences, as best they can be gleaned from knowledge of and experience with the patient.” 1(p52) On the other hand, the best-interests standard is referred to as a way of making decisions that considers what would be best for the patient in given situations. Numerous studies and guidelines suggest that SDMs should make decisions for their ill family members based on the person’s advance directive, substituted judgment, or best-interest standard. 3 These ethical decisions are difficult for many SDMs as they struggle to do what is best for their loved ones. 2 SDMs are usually family members who are asked to make a complex array of medical and other types of family-related decisions for ill family members, particularly, at end-of-life (EOL). ![]() 1 In most states in the United States, SDMs are also determined by state laws if designated SDMs are unable to make decisions or no one is designated or appointed in documents. 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.Ī surrogate decision maker (SDM) is a person designated in a patient’s advance directive (e.g., health proxy, health agent) or appointed by a court (e.g., guardian) to make necessary healthcare decisions on behalf of incapacitated individuals. Understanding the complexity of surrogates’ experiences of end-of-life care planning is beyond the scope of conventional ethical frameworks. In fact, an overarching theme of “wanting to do the right thing” for incapacitated adults and/or themselves was prominent. ![]() Themes identified about surrogate decision making included: responsibilities and goals, factors affecting surrogates’ decision making, and outcomes for surrogates. ![]() Seven papers explicitly identified ethical theories, principles, or concepts for their studies, such as autonomy, substituted judgment, and best interests. 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. 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.
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