Swetz, Keith M.

As the US population continues to age, new cases of end-stage renal disease (ESRD) in individuals, aged 85 years or older (the oldest old), are increasing. Many patients who begin hemodialysis despite questionable benefit may struggle with high symptom burden and rapid functional decline. This article reviews the history regarding the funding and development of the Medicare ESRD program, reviews current approaches to the oldest old with ESRD, and considers strategies to improve the management approach of this vulnerable population.

Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neurologic disorder with predictable challenges regarding disease progression and end-of-life care. These include need for respiratory and nutritional support. Little is known about how such choices impact end-of-life health service utilization for these patients. Using OptumLabs Data Warehouse, a large administrative claims database with more than 150 million privately insured, geographically diverse enrollees, we sought to explore outcomes associated with the use of enteral nutrition (EN). Patients were of age ≥18 years, with first ALS diagnosis during calendar years 2006-2012, and 6 months of continuous health plan coverage before first diagnosis. EN use was identified using procedure codes. Data were summarized descriptively. Among 1974 patients with ALS, mean age was 60.0 ± 12.5 years, 41.8% were women, and 9.7% demonstrated use of EN. Median time from ALS diagnosis to evidence of EN was 211 days (interquartile range [IQR]: 70-426). Those receiving EN had greater aggregate comorbidity (47% with Charlson-Deyo Comorbidity Index ≥ 3 vs only 27% in non-EN subset). In total, 38.1% of patients had at least 1 hospitalization, with median time to hospitalization of 162 days. Unfortunately, the EN group ended coverage a median of 155 days after EN started (IQR: 63.5-388), thereby limiting ability to capture outcomes. Although many ALS patients were identified, EN use was lower than expected, due to being earlier in disease trajectory and lost to follow-up with transition from private insurance. As such, databases exclusively including privately insured patients may be suboptimal for detecting late complications of protracted illnesses.

91 Background: Formal mechanisms to share data on quality remain immature in specialty palliative care. As the field grows, infrastructure that promotes collaboration among academic and community-based practice will be required to foster comparisons and benchmarking of data to inform areas for quality improvement. Further, such relationships will create a palliative care “quality improvement laboratory”, where proposed guidelines and best practices can be developed, implemented, and tested. Methods: We set out to bring together specialty palliative care practices with a shared vision for collaborative quality improvement. We modeled our approach after the Institute for Healthcare Improvement Breakthrough Series alongside our Rapid Learning Quality Improvement paradigm. We use a set of common data collection procedures, across an electronic point-of-care platform called Quality Data Collection Tool (QDACT), alongside a centralized data registry. Further, we meet and discuss challenges and issues, compare best practices, and brainstorm new projects through biweekly conference calls. Results: We have created a multi-institutional collaboration for quality assessment and improvement in specialty palliative care. Termed the Global Palliative Care Quality Alliance, we have brought together 11 academic and community organizations, both general and oncology-specific, across six states to study various areas of quality practice. Short-term, we will conduct rapid-cycling quality improvement projects addressing National Quality Forum domains for quality palliative care, including documentation of spiritual assessment and timely advance care planning. Long-term, we aim to study the link between quality measure adherence and outcomes and further align our initiatives with those of other large consortia, like the Palliative Care Research Cooperative and Palliative Care Quality Network. Conclusions: Collaborative quality improvement is needed in specialty palliative care across a national platform. Developing the infrastructure to perform standardized quality improvement is achievable across multiple palliative care settings.

90 Background: Increasingly, oncology teams and specialty palliative care (PC) clinicians are collaborating in the care of patients with serious or advanced cancer. Because of such partnerships, PC services have grown tremendously, with teams now available in most US cancer centers. Despite increased penetrance of services, little is known about the workforce that delivers this care, including their demographics, training, and future plans. Methods: Members of the American Academy of Hospice and Palliative Medicine (e.g. advanced practice provider (APP), registered nurses, chaplains) completed a workforce characteristics survey through electronic invitation in the second half of 2013; respondents were recruited via e-mail, blog and Facebook posts, and Twitter tweets. Descriptive statistics were calculated. Results: 1,241 clinicians responded, representing approximately a third of those who received the survey; 68% were physicians and 14% were APPs. Most (56%) were older than 50 years of age; 65% were female. Of physicians, 58% were board-certified through the experiential track, while 22% had completed fellowship training. Of clinical responsibilities, about half (48%) split time between consultative PC and hospice; 30% performed PC consultations only. Regarding organization size, 35% work with 1-3 other colleagues; 8% work alone. Regarding tenure, 34% have worked in PC for <5 years; 22% for >10 years. 82% reported they would become a PC clinician again, if asked to revisit their career choice. Of motivations for joining clinical PC, leading reasons were “opportunity for personal growth” and “influential experience during practicing another specialty”. About half (47%) intend to leave the field within 10 years. Of reasons to leave, 49% will retire; 24% may leave due to burnout; and 20% reported dissatisfaction with practice. Conclusions: The specialty PC workforce is diverse and faces sustainability challenges due to advancing physician age, impending retirements, evolving burnout, and dissatisfaction with the profession. If patients are going to have adequate access to services, research and approaches are needed to develop solutions that sustain and grow specialty PC.

87 Background: The increasing demand for specialist palliative care (PC) in cancer care requires an available and responsive clinical workforce. But as the volume of work expands, PC providers face an increased risk of burnout, characterized by depersonalization and work-related emotional exhaustion. The prevalence and predictors of burnout among PC providers is poorly understood. Methods: Members of the American Academy of Hospice and Palliative Medicine (e.g. advanced practice provider, registered nurses, chaplains) completed the Maslach Burnout Inventory (MBI) via electronic survey in the second half of 2013; respondents were recruited via e-mail, blog and Facebook posts, and Twitter tweets. The MBI determine burnout severity across two domains, Emotional Exhaustion (EE) and Depersonalization (DP). Severity is reported as “low”, “moderate”, or “high”; “high” is consistent with burnout. Demographic and work-related variables associated with burnout in other studies were determined via stepwise logistic regression. Results: We received surveys from 1,241 clinicians. We estimated a response rate of 30%. 68% of respondents were physicians. Most respondents were over age 50 (57%), female (65%), were married or partnered (82%) and had worked in the field for less than 10 years (67%). 42% took overnight call regularly, 30% reported working 50 hours per week or more, and 57% had at least 4 colleagues. Regarding burnout, 24% reported high DP, 59% reported high EE, and 62% of reported high burnout symptoms on either EE or DP scales. In logistic regression, younger physicians, those working more than 50 hours per work, and those with fewer colleagues within their practice were at greatest risk of burnout (p<0.02). Conclusions: PC clinicians report a burnout rate of 62%. Even with the limitations of our methods and potentially biased sampling, this prevalence is remarkable and higher than data reported in medical oncology (45%). Burnout severity is associated with working in isolation and working longer hours. Further studies on how burnout affects sustainability of the PC workforce are needed, especially since this workforce is so critical to the provision of high quality cancer care.

Summary: Pulmonary hypertension (PH) can be associated with a high level of symptom burden from the disease as well as its treatment. Involvement of palliative care (PC) services may help facilitate discussion regarding goals of care, prognostic planning, and treatment options focused on improving quality of life (QOL). Background: PC is active total care of a patient whose disease is not fully responsive to curative therapies, with symptom control as the top priority. After a life-limiting diagnosis is made, health care teams and patients determine prognosis, whether cure is attainable or reasonable, what treatment options are available, risks and benefits of associated treatments, and how treatment or nontreatment will impact QOL and survival. QOL is often the focus of palliative interventions, with the goal to minimize symptoms and empower patients with accurate information to help affirm life and meet objectives of care. Implications for clinicians: PC can begin at the onset of symptoms in a disease that cannot be cured. Early PC may help facilitate discussion regarding goals of care when patient expectations are discordant with prognosis. While PC is a responsibility of all clinicians, subspecialist assistance can be helpful when a clinical decline occurs, in the setting of uncertainty, when patients are removed from the transplant list, or when long-term QOL issues are present. Conclusion: Communication with patients who have PH can be delicate and requires an understanding of the disease's process, trajectory, and prognosis. PC teams possess communication skills that may benefit patients and providers with QOL optimization, delivery of difficult news, advanced care planning, and shared decision-making.

Background— Despite the ability of left ventricular assist device as destination therapy (DT-LVAD) to prolong survival for many patients with advanced heart failure, little is known about the eventual end-of-life care that patients with DT-LVAD receive. Methods and Results— All patients undergoing DT-LVAD at the Mayo Clinic in Rochester, Minnesota, from January 1, 2007, to September 30, 2014, who subsequently died before July 1, 2015, were included. Information about end-of-life care was obtained from documentation in the electronic medical record. Of 89 patients who died with a DT-LVAD, the median (25th–75th percentile) time from left ventricular assist device implantation to death was 14 (4–31) months. The most common causes of death were multiorgan failure (26%), hemorrhagic stroke (24%), and progressive heart failure (21%). Nearly half (46%) of the patients saw palliative care within 1 month before death; however, only 13 (15%) patients enrolled in hospice a median 11 (range 1–315) days before death. Most patients (78%) died in the hospital, of which 88% died in the intensive care unit. In total, 49 patients had their left ventricular assist device deactivated before death, with all but 3 undergoing deactivation in the hospital. Most patients died within an hour of left ventricular assist device deactivation and all within 26 hours. Conclusions— In contrast to the general heart failure population, most patients with DT-LVAD die in the hospital and few use hospice. Further work is needed to understand these differences and to determine whether patients with DT-LVAD are receiving optimal end-of-life care.