Death Before Life: An Analysis of Emerging Adults' Knowledge and Attitudes Regarding End-of-Life Decision Making

This study sought to address the significant paucity in the medical decision making literature regarding the knowledge and attitudes of emerging adults toward advance care planning. Using a mostly qualitative approach, we attempted to document several dimensions of preferences and perspectives within a population well known for risk-taking behaviors, which may result in death, serious injury, and states of decisional incapacitation. Fifty-six undergraduates from two Pittsburgh universities took part in six focus group interviews between February-April 2007. Using a semi-structured focus group guide, participants were led through discussions on hypothetical end-of-life care scenarios, eliciting their views on Living Wills, Health Care Proxies, preferences for surrogates and their behaviors, and for life-sustaining treatment. Content analysis revealed inter-subject variability and intra-subject inconsistency among participants within all domains analyzed. Fifty-six percent of our sample had correct knowledge of advance directives, while only 10% understood that they offer proxy designation. Themes related to age-mediated invincibility, decreased risk perception, and an inexperience with morbidity and mortality relative to their elders emerged from the data. The findings of our study underscore the need for a through, quantitative effort to examine this volatile population's familiarity and attitudes regarding decisional incapacitation and the legal provisions in place to ensure autonomous and/or shared decision making. Additionally, we review the psychosocial literature related to advance care planning and apply it to this population, suggesting that current legal statutes are inappropriate for this age group, given their ongoing individuation and identity development

Exploring the Role of Palliative Care in Heart Failure: Referral Barriers, Care Gaps, and Quality of Care

Heart failure is a chronic, incurable disease that presents significant burdens to patients, caregivers, and the healthcare system. With approximately 5 million Americans currently diagnosed with heart failure, the effective management of heart failure patients is of prime interest to clinicians, policymakers, and payers. Palliative care, which has been shown to improve patient outcomes in cancer, may hold similar promise for heart failure patients. However, despite similar disease experiences and prognosis, heart failure patients are less likely to receive palliative care than cancer patients. This dissertation investigates the current and potential role of specialist palliative care in heart failure. Through the use of mixed qualitative and quantitative methodologies, the three papers in this dissertation provide contributions to the medical literature related to: (1) palliative care referral barriers in heart failure; (2) the unresolved symptoms and treatment gaps of heart failure patients prior to palliative care consultation; and, (3) the link between palliative processes and patient outcomes in a cohort of heart failure patients receiving community-based palliative care. Our findings suggest that the term palliative care is ambiguous to providers and itself may stand as a barrier to referral. Nevertheless, we documented agreement among primary care, cardiology, and palliative care providers regarding the likely potential benefit of palliative services in advanced heart failure. Next, we found that among a group of heart failure and cancer patients receiving palliative care, both groups possessed significant palliative needs. Furthermore, the profiles of burden were not strikingly different between disease groups, thereby suggesting that the need for palliative care is similar for patients living with either illness. Lastly, we present data regarding the impact of palliative care in a cohort of heart failure patients. Of five quality indicators, the completion of a comprehensive assessment was found to be associated with improved patient health. In sum, this dissertation provides a glimpse into the needs of HF patients and how they might be addressed by specialist palliative care. Our work suggests that in heart failure, palliative care is underutilized, that patients have unmet needs, and that specific palliative interventions such as comprehensive assessment should be prioritized.Doctor of Philosoph

Hip and knee arthroplasty waiting list – how accurate and fair?

Background. Resource-intensive procedures require the use of patient waiting lists in an attempt to increase fairness of access to surgery and improve surgical efficiency. Total hip and knee arthroplasty has waiting lists in excess of years. Objectives. To analyse our tertiary state institution’s hip and knee arthroplasty waiting list to assess its accuracy.Methods. At Groote Schuur Hospital, our hospital-maintained database was compared with the surgeons’ personally maintained database. Patients were then telephoned to confirm their contactability, and to discover whether they still wanted the procedure, or if they had already had it. Waiting duration and patient demographics were then calculated.Results. Of the 655 patients on the hospital waiting list, only 454 were contactable. Three hundred and nine patients still wanted the surgery, 93 had already undergone surgery and 52 no longer wanted surgery. The last group was the oldest and had had the longest waiting time. Those still waiting had waited 451 days (minimum - maximum (standard deviation), 90 - 1 593 (228.5)), those that had had surgery 371 days (0 - 1 728 (296)) and those no longer interested 523 days (138 - 1 881 (260.9)). A total of 429 patients were present on the surgeons’ list but not on the hospital list. They had had longer waiting times than those on the hospital list.Conclusion. The arthroplasty waiting list is inaccurate due to the existence of two concurrent lists and poor data management, particularly of current contact details. The unfairness of a wide range of waiting times was identified, with patients only on the surgeons’ personal database disadvantaged. These deficiencies have prompted the introduction of  a scoring-based prioritisation system incorporating clinical, radiographic and societal parameters, in an effort to improve fair and appropriate access to this high-cost care

Knowledge, attitudes, and preferences of healthy young adults regarding advance care planning: A focus group study of university students in Pittsburgh, USA Health behavior, health promotion and society

Background: To date, research and promotion regarding advance care planning (ACP) has targeted those with serious illness or the elderly, thereby ignoring healthy young adults. The purpose of this study was to explore young adults' knowledge, attitudes, and preferences regarding advance care planning (ACP) and medical decision-making. Further, we aimed to understand the potential role of public health to encourage population-based promotion of ACP. Methods: Between February 2007 and April 2007, we conducted six focus groups comprising 56 young adults ages 18-30. Topics explored included (1) baseline knowledge regarding ACP, (2) preferences for ACP, (3) characteristics of preferred surrogates, and (4) barriers and facilitators to completing ACP specific to age and individuation. We used a qualitative thematic approach to analyze transcripts. Results: All participants desired more information regarding ACP. In addition, participants expressed (1) heterogeneous attitudes regarding triggers to perform ACP, (2) the opinion that ACP is a marker of individuation, (3) the belief that prior exposure to illness plays a role in prompting ACP, and (4) an appreciation that ACP is flexible to changes in preferences and circumstances throughout the life-course. Conclusion: Young adults perceive ACP as a worthwhile health behavior and view a lack of information as a major barrier to discussion and adoption. Our data emphasize the need for strategies to increase ACP knowledge, while encouraging population-level, patient-centered, healthcare decision-making

Palliative Care in Heart Failure: Rationale, Evidence, and Future Priorities

Patients with heart failure (HF) and their families experience stress and suffering from a variety of sources over the course of the HF experience. Palliative care is an interdisciplinary service and an overall approach to care that improves quality of life and alleviates suffering for those living with serious illness, regardless of prognosis. In this review, we synthesize the evidence from randomized clinical trials of palliative care interventions in HF. While the evidence base for palliative care in HF is promising, it is still in its infancy and requires additional high-quality, methodologically sound studies to clearly elucidate the role of palliative care for patients and families living with the burdens of HF. Yet, an increase in attention to primary palliative care (e.g., basic physical and emotional symptom management, advance care planning), provided by primary care and cardiology clinicians, may be a vehicle to address unmet palliative needs earlier and throughout the illness course

Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis

The use of palliative care programs and the number of trials assessing their effectiveness have increased

Comparing Unmet Needs between Community-Based Palliative Care Patients with Heart Failure and Patients with Cancer

Background: As the role of palliative care (PC) has yet to be clearly defined in patients with heart failure (HF), such patients may face barriers regarding PC referral. In order to maximally meet the needs of HF patients, it is necessary to understand how they compare to the classic PC population: patients with cancer

Future Care Planning for patients approaching end-of-life with advanced heart disease:an interview study with patients, carers and healthcare professionals exploring the content, rationale and design of a randomised clinical trial

Objective To explore the optimal content and design of a clinical trial of an end-of-life intervention for advanced heart disease with patients, carers and healthcare professionals.<p></p> Design Qualitative interview and focus group study.<p></p> Setting Community and hospital-based focus groups and interviews.<p></p> Participants Stable community-dwelling patients, informal carers (PC, n=15) and primary and secondary care based healthcare professionals (HCP, n=11).<p></p> Results PC highlighted fragmentation of services and difficulty in accessing specialist care as key barriers to good care. They felt that time for discussion with HCP was inadequate within current National Health Service (NHS) healthcare systems. HCP highlighted uncertainty of prognosis, explaining mortality risk to patients and switching from curative to palliative approaches as key challenges. Patient selection, nature of the intervention and relevance of trial outcomes were identified by HCP as key challenges in the design of a clinical trial.<p></p> Conclusions PC and HCP expressed a number of concerns relevant to the nature and content of an end-of-life intervention for patients with advanced heart disease. The findings of this study are being used to support a phase II randomised clinical trial of Future Care Planning in advanced heart disease. <p></p&gt

Access to palliative care for patients with advanced cancer: A longitudinal population analysis

Background The UK National Health Service is striving to improve access to palliative care for patients with advanced cancer however limited information exists on the level of palliative care support currently provided in the UK. We aimed to establish the duration and intensity of palliative care received by patients with advanced cancer and identify which cancer patients are missing out. Methods Retrospective cancer registry, primary care and secondary care data were obtained and linked for 2474 patients who died of cancer between 2010 and 2012 within a large metropolitan UK city. Associations between the type, duration, and amount of palliative care by demographic characteristics, cancer type, and therapies received were assessed using Chi-squared, Mann-Whitney or Kruskal-Wallis tests. Multinomial multivariate logistic regression was used to assess the odds of receiving community and/or hospital palliative care compared to no palliative care by demographic characteristics, cancer type, and therapies received. Results Overall 64.6% of patients received palliative care. The average palliative care input was two contacts over six weeks. Community palliative care was associated with more palliative care events (p<0.001) for a longer duration (p<0.001). Patients were less likely to receive palliative care if they were: male (p = 0.002), aged 80 years or over (p<0.05), diagnosed with lung cancer (p<0.05), had not received an opioid prescription (p<0.001), or had not received chemotherapy (p<0.001). Patients given radiotherapy were more likely to receive community only palliative care compared to no palliative care (Odds Ratio = 1.49, 95% Confidence Interval = 1.16–1.90). Conclusion Timely supportive care for cancer patients is advocated but these results suggest that older patients and those who do not receive anti-cancer treatment or opioid analgesics miss out. These patients should be targeted for assessment to identify unmet needs which could benefit from palliative care input