The implantable cardioverter defibrillator (ICD) is an electronic medical device that was invented by Dr. Michael Mirowski and his team in 1980. The purpose of the ICD, which is implanted in a person's chest, is to sense and shock the heart when detecting a lethal cardiac arrhythmia into a rhythm that can sustain life. While the ICD saves lives, it also has the potential to deliver painful shocks when it is activated. The ICD was initially inserted in people who had survived a sudden cardiac arrest; the device is now being implanted in older adults with heart failure and no known history of cardiac arrhythmias. When talking with patients and personal family members who had an ICD, it was unclear what influenced their decision to have an ICD implanted. Understanding the experience of decision-making for older adults who had an ICD has added to nursing knowledge, practice, and education when working with people who had an ICD inserted. To understand the lived experience, the researcher conducted a phenomenological research study, guided by the theoretical lens of Paterson and Zderad's (1976/1988) humanistic nursing and analyzed the data as outlined by Giorgi (2009). The results of the study indicated the participants' lived experience of decision-making for older adults who had an implantable cardioverter defibrillator inserted was influenced by the following : trust in their physician's decision; accepting the device was necessary; the decision was easy to make; and hope and desire to live longer. / by Louise A. Lucas. / Thesis (Ph.D.)--Florida Atlantic University, 2011. / Includes bibliography. / Electronic reproduction. Boca Raton, Fla., 2011. Mode of access: World Wide Web.

Cancer incidence is high for aging minority and underserved populations, yet research is limited about patient-provider communications with aging racial and ethnic minority populations. Achieving high-quality cancer care is crucial to reducing health disparities for this population. However, potential shortages in professional health personnel, the cost to treat cancer, a strained health care system, and large aging populations contribute to the problem. The purpose of this qualitative study was to understand the personal experiences of aging minorities during cancer treatment decision making when communicating with their cancer care providers. Purposive sampling methods were used to recruit 10 minority women and men born between 1946 and 1964 who had experienced communicating with providers and making cancer treatment decisions. In-depth semi-structured interviews and thematic analysis of qualitative data was conducted. Important findings were barriers related to miscommunication with providers, the need for more time with the cancer doctor, and mistrust of the medical profession. Participants perceived poor interpersonal communication with providers as causing a lack of understanding regarding their cancer treatment options, which affected their decision making regarding their treatment. Barriers to communication included long wait times at public or teaching health care systems for follow up cancer care services. The findings of this study could be useful to assist health care providers in improving communication with their cancer patients, reducing cancer health disparities, and increasing the quality of cancer care for this population.

This dissertation aims to enhance our understanding of the experiences of surrogates (e.g., family, close friends) who make medical decisions for a loved one in the intensive care unit (ICU) after a cardiac arrest. Nearly 500,000 Americans experience a cardiac arrest annually; given high mortality (80%-90%), most surrogates become bereaved. For those who receive post-cardiac arrest care in an ICU, almost three in four surrogates make decisions to limit life-sustaining treatments. The burden of medical decision-making for a loved one has been well-documented and those who serve as surrogate decision-makers in the ICU are known to experience symptoms (e.g., depression, post-traumatic stress) for months after their loved one’s hospitalization. However, it is unknown to what extent decision-making experiences near a loved one’s end-of-life influence symptom burden among bereaved surrogates after cardiac arrest. Decisional conflict, uncertainty about which course of action to take, is reported by half of surrogates faced with ICU treatment decisions and one in five report regret around their decisions after 6 months. Following a cardiac arrest, prognostic uncertainty can complicate surrogate decision-making and potentially worsen decisional conflict and/or regret. The overall objective of this dissertation is to inform future interventions to improve outcomes for this highly vulnerable group. The dissertation study aims were to (1) evaluate the efficacy of interventions for ICU surrogates facing end-of-life decisions, (2) explore differences in surrogate decision-making experiences by level of decisional conflict reported around end-of-life decisions after cardiac arrest, (3) assess physical and psychological symptoms among surrogates during the first 6 months of bereavement after a loved one’s cardiac arrest, and (4) explore relationships between decisional conflict, decision regret, and symptoms. To address these aims, three studies were conducted. Study 1 was a systematic review and meta-analysis to evaluate the efficacy of interventions to improve symptoms among surrogates whose loved one had either died in the ICU or had high predicted likelihood of mortality. The study demonstrated that interventions have yielded only small, significant improvement in depression and post-traumatic stress at 3 months and anxiety at 6 months; findings derived from the meta-analysis have moderate-to-very-low certainty of evidence and have potentially limited clinical utility. Most interventions were delivered in the ICU, suggesting that different approaches (e.g., beyond the ICU) warrant exploration. Studies 2 and 3 report findings from a convergent mixed methods study of bereaved cardiac arrest surrogates. Study design was informed by the Integrative Risk Factor Framework for the Prediction of Bereavement Outcome which includes various inter- and intrapersonal risk factors in addition to bereavement-related stressors that influence outcomes such as symptoms. Surrogates were recruited and enrolled ~1-month after the death of their loved one and were followed through 6 months. Survey data were collected at ~1-, 2-, 3-, and 6-months. Most surrogates also completed interviews which were conducted at ~1-month and 3-months. Study 2 aimed to explore differences in surrogate decision-making experiences by decisional conflict reported around end-of-life decisions in the ICU. Among the 16 surrogates who completed both surveys and interviews at ~1-month, decisional conflict survey scores were relatively low with more than half reporting no decisional conflict. Three themes emerged from interview data, two related to decision-making experiences and one related to broader experiences during the first month after the loved one’s death. Compared to those who reported no decisional conflict, those who did described lack of clarity around their loved one’s preferences for treatment, less support from other family or clinicians, and a poorer understanding of medical treatments or prognosis. All surrogates described challenges navigating life after the loss. Qualitative data provided insight into limitations of retrospective assessment of decisional conflict, highlighted opportunities for enhanced measurement of the construct among surrogate decision-makers, and identified potential areas of focus for future interventions. Study 3 aimed to assess physical and psychological symptoms during the first 6 months of bereavement and explore relationships between decisional conflict, decision regret, and symptoms. Findings demonstrated that more than a third experienced high grief intensity and/or post-traumatic stress 6 months after medical decision-making. Strong correlations were seen between 1-month and 6-month symptoms (i.e., depression, post-traumatic stress, fatigue, sleep disturbance), suggesting that those with high symptom burden early on are likely to have symptoms that persist. Decisional conflict moderately correlated with decision regret at 6 months which moderately correlated with other psychological symptoms (i.e., anxiety, post-traumatic stress, grief intensity). The exploratory findings suggest that early screening may be helpful in identifying surrogates at highest risk for poor outcomes at 6 months and may help target future interventions towards those who need them most. This dissertation makes valuable contributions to our current understanding of the experiences of surrogate medical decision-making near a loved one’s end-of-life in the ICU after cardiac arrest and of surrogate experiences during bereavement. Chapter 5 summarizes each study, reviews key findings, identifies strengths and limitations, and discusses implications for future research, clinical practice, and health policy. Together, these studies support the need for enhanced care for surrogates bereaved after a loved one’s cardiac arrest/critical illness. Surrogates described the burden of medical decision-making near a loved one’s end-of-life in the ICU and the challenges encountered during bereavement. Findings suggest that end-of-life decision-making experiences may influence symptoms through the first 6 months of bereavement. Novel approaches to supporting surrogates are warranted to improve health outcomes for this important, vulnerable group.