Background: Palliative care-related postdoctoral training opportunities are critical to increase the quantity and quality of palliative care research.
Objective: To describe the history, activities, challenges, and future goals of the National Postdoctoral Palliative Care Research Training Collaborative.
Design: National web-based survey of participating program leaders.
Measurements: Information about participating programs, trainees, challenges faced, and future goals.
Results: Nine participating programs at academic institutions across the United States focus on diverse aspects of palliative care research. The majority of 73 current and former fellows are female (75%) and white (84%). In total, 38% of fellows (n = 28) have MD backgrounds, of whom less than half (n = 12) completed hospice and palliative medicine fellowships. An additional 38% of fellows (n = 28) have nursing PhD backgrounds and 23% (n = 17) have other diverse types of PhD backgrounds. Key challenges relate to recruiting diverse trainees, fostering a shared identity, effectively advocating for trainees, and securing funding. Future goals include expanding efforts to engage clinician and nonclinician scientists, fostering the pipeline of palliative care researchers through expanded mentorship of predoctoral and clinical trainees, increasing the number of postdoctoral palliative care training programs, and expanding funding support for career development grants.
Conclusion: The National Postdoctoral Palliative Care Research Training Collaborative fills an important role in creating a community for palliative care research trainees and developing strategies to address shared challenges.
Background: Advance care planning (ACP) among frail, older adults receiving in-home care is low. Leveraging case managers to introduce ACP may increase engagement.
Objective: Pilot an ACP-Toolkit for case managers and their clients.
Design: Feasibility pilot of an ACP-Toolkit for case managers to introduce ACP and the PREPAREforYourCare.org website and advance directives.
Setting/Subjects: Case managers from four local aging service organizations who referred English-speaking clients =55 years old.
Measurements: Using validated surveys (five-point Likert scales), we assessed changes in case managers' attitudes, confidence, and readiness to facilitate ACP and clients' readiness to engage in ACP from baseline to follow-up (one-week) using Wilcoxon signed-rank tests.
Results: We enrolled 9 case managers and 12 clients (median age 69 [standard deviation 8], 75% minority race/ethnicity). At follow-up, case managers' confidence increased (3.2 [0.7] to 4.2 [0.7]; p = 0.02), and clients' readiness increased (2.8 [1.5] to 3.4 [1.4]; p = 0.06). All case managers agreed the Toolkit was easy to use, helped start ACP conversations, and would recommend it to others. All clients found the Toolkit easy to understand and were comfortable with case managers using it. Nearly all clients (92%) would recommend it to others. Suggestions for improvement included offering the Toolkit in other languages and disseminating it in clinical and community settings.
Conclusions: The ACP-Toolkit resulted in higher case manager confidence in facilitating ACP and client readiness to engage in ACP, and usability was high. A brief ACP-Toolkit may be a feasible solution to increase ACP engagement among frail, older adults receiving in-home care.
BACKGROUND: Nearly 70% of nursing home residents are eligible for palliative care, yet few receive formal palliative care outside of hospice. Little is known about nursing home staff attitudes, knowledge, skills, and behaviors related to palliative care.
METHODS: We administered a modified survey measuring attitudes toward death to 146 nursing home staff members, including both clinical and nonclinical staff, from 14 nursing homes.
RESULTS: Nursing home staff generally reported feeling comfortable caring for the dying, but half believed the end of life is a time of great suffering. Pain control (63%), loneliness (52%), and depression (48%) were the most important issues identified with regard to these patients, and there was ambivalence about the use of strong pain medications and the utility of feeding tubes at the end of life. Top priorities identified for improving palliative care included greater family involvement (43%), education and training in pain control (50%) and in management of other symptoms (37%), and use of a palliative care team (35%) at their facility.
CONCLUSIONS: Findings show there is a need for more palliative care training and education, which should be built on current staff knowledge, skills, and attitudes toward palliative care.
Background: Measurement and monitoring of palliative care quality metrics for patients with advanced cancer promote early integration of palliative care within the oncology clinic. Accurately identifying the subset of advanced cancer patients within a population of cancer patients who would most benefit from palliative care is critical to the development of palliative care-relevant quality improvement activities.
Methods: We evaluated two automated approaches to identifying patients with solid tumors sufficiently advanced to warrant discussions of palliative care and advanced care planning. These approaches included (1) pattern matching of words indicating an advanced cancer in oncology notes, radiology imaging, and active problem lists and (2) International Classification of Diseases (ICD-10) codes. We randomly selected 586 charts of patients with active cancer who are patients in our health system to establish a gold standard for advanced cancer through expert chart review. We evaluated the sensitivity and specificity of these automated approaches to identify advanced cancer patients compared with the gold standard.
Results: We found that the highest performing pattern matching method had a specificity of 76% and a sensitivity of 81%. Using our final ICD-10 algorithm, we achieved a specificity of 92% and a sensitivity of 68%. We improved our sensitivity to 76% while maintaining our specificity at 91% when we excluded patients assigned to oncologists who predominantly see hematological malignancies.
Conclusions: We achieved high specificity and reasonable sensitivity for an advanced cancer quality metric denominator using an ICD-10 algorithm within an academic oncology practice. This concrete definition will help inform quality improvement efforts locally and beyond.
Introduction: Varying intensity of advance care planning (ACP) interventions at the population level has not been compared among seriously ill patients in primary care. This project will implement, test, and disseminate real-world scalable ACP interventions among primary care clinics across three University of California Health systems. The three ACP interventions are (1) distribution of an advance directive (AD) with targeted ACP messaging, (2) the AD, messaging, plus prompting patients to engage with the Prepare For Your Care website (PREPARE), and (3) the AD, messaging, PREPARE, plus Care Coordinator engagement with patients and clinicians.
Methods: We will identify a population cohort of seriously ill primary care patients and implement the ACP interventions using electronic health record (EHR) patient portals and postal mailings. Forty-five clinics across the three health systems will be cluster randomized to one of the three ACP interventions. The primary outcome for the population cohort is AD or Physician Orders for Life-Sustaining Treatment documentation in the EHR. A subset of the population cohort will be surveyed to assess patient-centered outcomes, including care consistent with goals at baseline, 12 months, and 24 months. Caregivers will be interviewed if patients are unable to be surveyed or die. ACP documentation, goal concordant care, and among decedents, health care utilization will be compared among intervention arms.
Study Implementation: Challenges and Contributions: The project is guided by a Study Advisory Group and Community Advisory Groups at each site to ensure rigorous patient-centered methods and consistency of implementation. Intervention fidelity will be evaluated using the Reach, Efficacy, Adoption, Implementation, and Maintenance (RE-AIM) framework. Challenges to implementation of this three-site health system trial and to intervention fidelity stem from site/clinic/system cultures, increasing attention to end-of-life care from payers and regulators, and growing pressures by health systems to implement ACP interventions. Stakeholder engagement is required to ensure consistent interventions across sites.
BACKGROUND/OBJECTIVES: With the growing public demand for access to critical health data across care settings, it is essential that advance care planning (ACP) information be included in the electronic health record (EHR) so that multiple clinicians can access it and understand individuals' preferences for end-of-life care. Community-based palliative care programs often incorporate ACP services. This study examined whether a community-based palliative care program is associated with digitally extractable ACP documentation in the EHR.
DESIGN: Observational study using propensity score-weighted generalized estimation equations to examine patterns of digitally extractable ACP documentation.
SETTING: Palo Alto Medical Foundation (PAMF), a multispecialty ambulatory healthcare system in northern California.
PARTICIPANTS: Individuals aged 65 and older with serious illnesses between January 1, 2013, and December 31, 2014 (N = 3,444).
INTERVENTION: Community-based palliative care program in PAMF.
MEASUREMENTS: Digitally extractable ACP in EHR.
RESULTS: We found that only 14% (n = 483) of individuals with serious illnesses had digitally extractable ACP in electronic health records. Of the 6% of individuals receiving palliative care, 65% had ACP, versus 11% of those not receiving palliative care. Study results showed a strong positive association between palliative care and ACP.
CONCLUSION: Only a small percentage of individuals with serious illnesses had ACP documentation in the EHR. Individuals with serious illnesses infrequently used palliative care delivered by board-certified palliative care specialists. Palliative care service use was associated with higher rates of ACP after controlling for organizational and individual characteristics using a propensity score weighting method. Scalable interventions targeted at non-palliative care clinicians for universal access to ACP are needed.
CONTEXT: The American medical system is programmed to a default setting of aggressive care for the terminally ill. Institutional norms of decision-making have been shown to promote high intensity care, regardless of consistency with patient preferences. There are myriad factors at a system, clinician, surrogate, and patient level that drive the culture of overly aggressive treatments in American hospitals.
OBJECTIVE: To understand physician perspective of the ways systems-level factors influence patient, physician, and surrogate perceptions and consequent behavior.
METHODS: Semi-structured in-depth qualitative interviews with 42 internal medicine physicians across three American academic medical centers. This qualitative study was exploratory in nature, intended to enhance conceptual understanding of underlying phenomena that drive physician attitudes and behavior.
RESULTS: The interviews revealed many factors that contributed to overly aggressive treatments at the end of life. Systemic factors, which describe underlying cultures (including institutional, professional, or community-based cultures), typical practices of care, or systemic defaults which drive patterns of care, manifested its influence both directly as well as through its impact on patient, surrogate, and physician behaviors and attitudes.
CONCLUSION: Institutional cultures, social norms, and systemic defaults influence both normative beliefs regarding standards of care and treatments plans that may not benefit seriously ill patients.