Thesis advisor: Pamela J. Grace / Significance/Background: Surrogate decision-makers (SDMs) take part in 1.5 million end-of-life (EOL) decisions per year. Most find the role burdensome, often do not make decisions concordant with patients' wishes, and many suffer negative psychological aftereffects. Specific Aims: 1) Identify and describe the psychological processes of recent SDMs for adults at EOL in the intensive care unit (ICU) and 2) develop a theoretical model of SDMs' psychological processes. Methods/Analysis: Descriptive, multiple case study research design using a cognitive task analysis (CTA) interviewing approach. Participants completed an in-depth semi-structured CTA interview and a demographic form. Verbatim transcribed interviews were encoded and analyzed until theoretical saturation was met. Results: Nineteen SDMs (female=11) with a mean age of 59 years (± 11) who made decisions for patients (mean age, 67±13 years) who died in the ICU completed interviews. Data analysis yielded 27 psychological processes representing the hypothesized theoretical links amongst 20 individual psychological concepts. The PREDICAMENTS model (Psychology, Reasoning, and Ethics Demonstrated In Choices about the Acceptability of Medical Treatments and Patient Conditions Encountered in Life Threatening Situations) of surrogate decision-making was assembled from these psychological processes and concepts. The model depicts a complex web of psychological processes wherein SDMs ultimately express acceptance or rejection of medical treatments and/or the patient's physical condition based on their perception of the acceptability (or lack thereof) of medical treatments and/or the patient's physical condition. Conclusions: The PREDICAMENTS model offers an initial picture of the underlying psychological processes operating in SDMs decision-making. Implications for Practice and Research: The PREDICAMENTS model can be used to assess and understand SDMs' thought processes, emotions, and ethical concerns. Further research is needed to test and corroborate constructs and linkages in this model with the aim of developing decision support interventions. Ethicists need to discuss the implications of this descriptive theoretical model for the normative ethical standards expected of SDMs. / Thesis (PhD) — Boston College, 2013. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

Indiana University-Purdue University Indianapolis (IUPUI) / Background: When a patient is incapacitated and unable to make health care decisions, a surrogate decision maker must be designated to make decisions about the patient’s care in his or her place. Studies show that fewer than 20% of patients in hospitals present with a designated health care representative form. Therefore, the overwhelming majority of surrogates in hospitals are identified via default state statutes. Little is known about the implications of state default surrogate decision making statutes on physicians and patient care in clinical practice. Methods: An evaluation of state surrogate decision making statutes was conducted in order to determine variability among state laws. Additionally, a statewide, quantitative, descriptive, cross-sectional survey of a random sample of 405 physicians working in Indiana hospitals was conducted to determine: 1) physicians’ knowledge of Indiana’s surrogate decision making law; 2) physicians’ approaches to hypothetical cases they might encounter in hospital practice; and 3) any delay in patient care physicians experience as a result of state surrogate decision making laws. Results: There is very little consistency among states regarding who may serve as a surrogate decision maker. In Indiana, less than half of the surveyed physicians (47.90%) were able to correctly identify legally allowable surrogates. When presented with clinica vignettes, nearly all physicians (84.90%) report that they would allow a grandchild to act as a surrogate decision maker, even though grandchildren are not legal surrogates under the law. Additionally, more than half of physicians (53.8%) experienced a delay in patient care due to the inability to identify a legal surrogate. Conclusions: The narrow construction of state laws can leave patients in situations where they either have no qualified surrogate under the law or where they have multiple surrogates. If there are multiple surrogates with competing interests a consensus may not be reached on the patient’s medical care. These situations result in a delay of patient care. The results of this study show that the Indiana Surrogate Decision Making law is flawed as it does not reflect the composition of Indiana families and leads to delays in patient care.