Outcomes Among Surrogate decision makers In Stroke (OASIS)

点击翻译按钮获取中文摘要

 DESCRIPTION (provided by applicant): Every day in hospitals across the country, patients with severe stroke and their families are faced with decisions about life-sustaining treatments in the initial hours of admission. These decisions about resuscitation status, invasive treatments, or possible transitions to comfort care are typically made by a surrogate decision- maker due to communication or cognitive deficits in the patient. This surrogate must consider the patient's life goals and values to determine if their loved one would choose on-going intensive treatments where they may survive and yet have long term disabilities, or prioritize comfort and accept the likelihood of an earlier death. Serving as a surrogate decision maker for a patient in the intensive care unit can have long lasting negative consequences. However, almost nothing is known about surrogate decision makers in diverse populations with stroke. Hispanic Americans are now the largest minority group in the US, rapidly growing and aging, with Mexican Americans comprising the largest subgroup. Multiple disparities have been identified in stroke incidence and outcome between Mexican Americans and non-Hispanic Whites, particularly in the use of life- sustaining treatments. Minority populations may be particularly vulnerable to inadequate communication about end-of-life issues due to socioeconomic disadvantage, poor health literacy, and lack of provider empathy and health system strategies to improve communication. However, Mexican American culture includes strong values of family support and religiosity that may have a positive influence on discussions about life-sustaining treatment and adapting to stroke-related disabilities. There is currently a critical gap in understanding the perspectives and outcomes of stroke surrogate decision makers, making it impossible to design interventions to help diverse populations of patients and families through this incredibly trying time. The aims of this proposal are 1) To assess physician quality of communication, shared decision-making, and quality of end-of-life care among stroke surrogate decision makers; and 2) To assess the long-term impact of serving as a surrogate decision maker for stroke and assess the unmet decision support needs of stroke surrogates. Results will be used to design future targeted decision support interventions for diverse populations of stroke patients and family members. This proposal takes advantage of the extensive established infrastructure of the Brain Attack Surveillance in Corpus Christi (BASIC) project (R01 NS038916), a population based epidemiological stroke surveillance study recently funded for its fourth 5-year cycle. New prospectively obtained data on surrogate decision-maker outcomes using established validated measures will be linked to BASIC's rich longitudinal patient-level data on functional outcome to maximize efficiency. Leveraging the resources of this highly successful project will allow a comprehensive yet cost-effective investigation that would not otherwise be feasible to study in a prospective longitudinal cohort design.