US Medicare Hospice and Palliative Medicine Physician Workforce and Service Delivery in 2008-2020.

CONTEXT: Despite clinical benefits of early palliative care, little is known about Medicare physician workforce specialized in Hospice and Palliative Medicine (HPM) and their service delivery settings. OBJECTIVES: To examine changes in Medicare HPM physician workforce and their service delivery settings in 2008-2020. METHODS: Using the Medicare Data on Provider Practice and Specialty from 2008 to 2020, we identified 2375 unique Medicare Fee-For-Service (FFS) physicians (15,565 physician-year observations) with self-reported specialty in "Palliative Care and Hospice". We examined changes in the annual number of HPM physicians, average number of Medicare services overall and by care setting, total number of Medicare FFS beneficiaries, and total Medicare allowed charges billed by the physician. RESULTS: The number of Medicare HPM physicians increased 2.32 times from 771 in 2008 to 1790 in 2020. The percent of HPM physicians practicing in metropolitan areas increased from 90% to 96% in 2008-2020. Faster growth was also observed in female physicians (52.4% to 60.1%). Between 2008 and 2020, we observed decreased average annual Medicare FFS beneficiaries (170 to 123), number of FFS services (467 to 335), and Medicare allowed charges billed by the physician ($47,230 to $37,323). The share of palliative care delivered in inpatient settings increased from 47% to 68% in 2008-2020; whereas the share of services delivered in outpatient settings decreased from 37% to 19%. CONCLUSION: Despite growth in Medicare HPM physician workforce, access is disproportionately concentrated in metropolitan and inpatient settings. This may limit receipt of early outpatient specialized palliative care, especially in nonmetropolitan areas.

American Cancer Society's report on the status of cancer disparities in the United States, 2023.

In 2021, the American Cancer Society published its first biennial report on the status of cancer disparities in the United States. In this second report, the authors provide updated data on racial, ethnic, socioeconomic (educational attainment as a marker), and geographic (metropolitan status) disparities in cancer occurrence and outcomes and contributing factors to these disparities in the country. The authors also review programs that have reduced cancer disparities and provide policy recommendations to further mitigate these inequalities. There are substantial variations in risk factors, stage at diagnosis, receipt of care, survival, and mortality for many cancers by race/ethnicity, educational attainment, and metropolitan status. During 2016 through 2020, Black and American Indian/Alaska Native people continued to bear a disproportionately higher burden of cancer deaths, both overall and from major cancers. By educational attainment, overall cancer mortality rates were about 1.6-2.8 times higher in individuals with ≤12 years of education than in those with ≥16 years of education among Black and White men and women. These disparities by educational attainment within each race were considerably larger than the Black-White disparities in overall cancer mortality within each educational attainment, ranging from 1.03 to 1.5 times higher among Black people, suggesting a major role for socioeconomic status disparities in racial disparities in cancer mortality given the disproportionally larger representation of Black people in lower socioeconomic status groups. Of note, the largest Black-White disparities in overall cancer mortality were among those who had ≥16 years of education. By area of residence, mortality from all cancer and from leading causes of cancer death were substantially higher in nonmetropolitan areas than in large metropolitan areas. For colorectal cancer, for example, mortality rates in nonmetropolitan areas versus large metropolitan areas were 23% higher among males and 21% higher among females. By age group, the racial and geographic disparities in cancer mortality were greater among individuals younger than 65 years than among those aged 65 years and older. Many of the observed racial, socioeconomic, and geographic disparities in cancer mortality align with disparities in exposure to risk factors and access to cancer prevention, early detection, and treatment, which are largely rooted in fundamental inequities in social determinants of health. Equitable policies at all levels of government, broad interdisciplinary engagement to address these inequities, and equitable implementation of evidence-based interventions, such as increasing health insurance coverage, are needed to reduce cancer disparities.

Medicaid Expansion Associated With Increase In Palliative Care For People With Advanced-Stage Cancers.

Clinical guidelines have endorsed early palliative care for patients with advanced malignancies, but receipt remains low in the US. This study examined the association between Medicaid expansion under the Affordable Care Act and receipt of palliative care among patients newly diagnosed with advanced-stage cancers. Using the National Cancer Database, we found that the percentage of eligible patients who received palliative care as part of first-course treatment increased from 17.0 percent preexpansion to 18.9 percent postexpansion in Medicaid expansion states and from 15.7 percent to 16.7 percent, respectively, in nonexpansion states, resulting in a net increase of 1.3 percentage points in expansion states in adjusted analyses. Increases in receipt of palliative care associated with Medicaid expansion were largest for patients with advanced pancreatic, colorectal, lung, and oral cavity and pharynx cancers and non-Hodgkin lymphoma. Our findings suggest that increasing Medicaid coverage facilitates access to guideline-based palliative care for advanced cancer, and they provide additional evidence of benefit in cancer care from states' expansion of income eligibility for Medicaid.

"Between Wings of Hope and Fear": Muslim Parents' Experiences with the American Health Care System.

Background and Objectives: Historically marginalized religious and cultural groups are at risk for lower quality of care than majority groups. No study to date specifically queries Muslim experiences with the American health care system (AHCS). We performed a thematic analysis of Muslim parents' interactions with the AHCS and how their background informs their approach to care. Methods: This was a qualitative study of Muslim parents of children with life-limiting conditions in the Research Triangle Area from December 2019 to March 2019. We conducted semistructured interviews with parents to assess their experiences with the AHCS. We probed interview transcripts using descriptive content analysis with NVivo10. Results: We interviewed 10 parents in the Research Triangle Area. All patients were female, most were married, most spoke at least one other language in addition to English, and most were not born in the United States. Several themes emerged highlighting open communication with care teams, willingness to share religious affiliations, and the importance of leaning into faith and accepting God's will. Conclusions: A thematic analysis of Muslim parents' interactions with the AHCS describes value in honest communication, mixed concerns about how providers will react to their religious affiliation, and emphasizes the importance of leaning heavily into faith and accepting God's plan. Future studies evaluating needs of Muslim patients, especially those with different diagnoses, language barriers, and a larger sample size will further delineate needs to minimize inequalities in care.

Clinical Impact of ASCO Choosing Wisely Guidelines on Staging Imaging for Early-Stage Breast Cancers: A Time Series Analysis Using SEER-Medicare Data.

PURPOSE: American Society for Clinical Oncology released the Choosing Wisely list in 2012, highlighting low-value procedures that lack evidence, advising against the use of positron emission tomography, computerized tomography, and radionuclide bone scans for the staging of early-stage breast cancer at low risk for metastasis. The objective of the study was to assess the impact of the American Society of Clinical Oncology Choosing Wisely guidelines on inappropriate staging imaging among early-stage breast cancers. METHODS: The Surveillance, Epidemiology, and End Results Program-Medicare data set was used to identify 50,004 women age 66 years and older with new incident diagnosis of early-stage breast cancer (stage 0 through stage 2a; T < 4, N = 0, and M = 0). The primary outcome was the incidence of patients with inappropriate imaging following an early-stage breast cancer diagnosis. The primary outcome was identified within 6 months of the first diagnosis. An interrupted time series analysis using negative binomial regression was performed for outpatient claims for these diagnostic studies versus the two interruptions of guidelines release and guidelines reinforcement. Mean images per patient, percent change for the study period, and rate of change per year were calculated. RESULTS: Imaging rates fell by a modest 2.32% following guidelines release in April 2012 (point estimate = -2.32%; 95% CI, -6.34% to 1.88%). By contrast, imaging rates fell by a four-fold larger amount (point estimate = -9.36%; 95% CI, -13.20% to -5.35%) following guidelines published reminders in journals (or reinforcement) in October 2013. Mean imaging studies per patient (95% CI) declined from 1.80 (1.76 to 1.84) in January 2012 to 1.50 (1.48 to 1.53) by January 2015, representing a 16% decline in imaging overuse in 2015 compared with 3 years earlier. The rate of change (95% CI) in images per patient was initially small at -0.47% (-4.27% to 3.33%) per year between April 2012 and October 2013, but almost eight times faster at -3.70% (-5.81% to -1.60%) per year after October 2013. CONCLUSION: This analysis demonstrates a substantial decrease in the prevalence of imaging overuse in early-stage breast cancers correlating with the 2013 reinforcement of American Society of Clinical Oncology's 2012 Choosing Wisely guidelines. The creation and dissemination of such resources serves as a powerful tool to improve clinical practice, cost-effectiveness, and patient safety from secondary malignancies, anxiety, and overdiagnosis.

Patient-Reported Quality Measures for Palliative Care: The Time is now.

CONTEXT: While progress has been made in the ability to measure the quality of hospice and specialty palliative care, there are notable gaps. A recent analysis conducted by Center for Medicare and Medicaid Services (CMS) revealed a paucity of patient-reported measures, particularly in palliative care domains such as symptom management and communication. OBJECTIVES: The research team, consisting of quality measure and survey developers, psychometricians, and palliative care clinicians, used established state-of-the art methods for developing and testing patient-reported measures. METHODS: We applied a patient-centered, patient-engaged approach throughout the development and testing process. This sequential process included 1) an information gathering phase; 2) a pre-testing phase; 3) a testing phase; and 4) an endorsement phase. RESULTS: To fill quality measure gaps identified during the information gathering phase, we selected two draft measures ("Feeling Heard and Understood" and "Receiving Desired Help for Pain") for testing with patients receiving palliative care in clinic-based settings. In the pre-testing phase, we used an iterative process of cognitive interviews to refine draft items and corresponding response options for the proposed measures. The alpha pilot test supported establishment of protocols for the national beta field test. Measures met conventional criteria for reliability, had strong face and construct validity, and there was diversity in program level scores. The measures received National Quality Forum (NQF) endorsement. CONCLUSION: These measures highlight the key role of patient voices in palliative care and fill a much-needed gap for patient-reported experience measures in our field.

Clinician Perspectives Guiding Approach to Comprehensiveness of Palliative Care Assessment.

Background: National Consensus Project for quality palliative care guidelines emphasizes the importance of a comprehensive assessment of all care domains, including physical, psychosocial, and spiritual aspects of care, for seriously ill patients. However, less is known about how real-world practice compares with this guideline. Objective: To describe clinicians' assessment practices and factors influencing their approach. Design: This is a two-part web-based survey of palliative care clinicians from five academic groups in the United States. Results: Nineteen out of 25 invited clinicians (physicians, nurse practitioners, and physician assistants) completed the survey. A majority (62%) reported that, although some elements of assessment were mandatory, their usual practice was to tailor the focus of the consultation. Time limitations and workload received the highest mean scores as reasons for tailored assessment (6.1 on a 0-9 importance scale), followed by beliefs that comprehensive assessment is unnecessary (4.8) and absence of the full interdisciplinary team (4.4). All participants cited symptom acuity, and 91% cited reason for consult as factors influencing a tailored approach. Among domains "always" assessed, physical symptoms were reported most commonly (81%) and spiritual and cultural factors least commonly (24% and 19%, respectively). Although a majority of clinicians reported usually tailoring their consultations, mean importance scores for almost all assessment elements were high (range 3.9-8.8, mean 7.1); however, there was some variation based on reason for consult. Spiritual elements received lower importance scores relative to other elements (5.0 vs. 7.4 mean score for all others). Conclusion: Although clinicians placed high importance on most elements included in comprehensive palliative care, in practice they often tailored their consultations, and the perceived relative importance of domains shifted depending upon the type of consultation.

Differences between patients with cardiovascular disease and cancer referred for palliative care.

Our analysis from a national registry shows that compared to cancer, cardiovascular disease patients referred to palliative care are a decade older, have worse functional status and clinician-estimated prognosis. Both groups have very high symptom burden, with cardiovascular disease patients experiencing more dyspnea while pain, nausea, and fatigue are more common in cancer.

Policy Changes Key To Promoting Sustainability And Growth Of The Specialty Palliative Care Workforce.

Specialized palliative care teams improve outcomes for the steadily growing population of people living with serious illness. However, few studies have examined whether the specialty palliative care workforce can meet the growing demand for its services. We used 2018 clinician survey data to model risk factors associated with palliative care clinicians leaving the field early, and we then projected physician numbers from 2019 to 2059 under four scenarios. Our modeling revealed an impending "workforce valley," with declining physician numbers that will not recover to the current level until 2045, absent policy change. However, sustained growth in the number of fellowship positions over ten years could reverse the worsening workforce shortage. There is an immediate need for policies that support high-value, team-based palliative care through expansion in all segments of the specialty palliative care workforce, combined with payment reform to encourage the deployment of sustainable teams.

Identifying Palliative Care Champions to Promote High-Quality Care to Those with Serious Illness.

Leading medical authorities advocate for routine integration of palliative care for all major causes of death in the United States. With rapid growth and acceptance, the field of palliative care is tasked with addressing a compelling question of its time: "Who will deliver timely, evidence-based palliative care to all who should benefit?" The current number of palliative care specialists will not suffice to meet the needs of persons with serious illness. In 2010, initial estimates quantified the shortage at 6000 to 18 000 additional palliative care physicians needed to fully staff existing programs. Unfortunately, the predicted number of specialty physicians in 2030 will likely not be larger than the workforce in existence today. These findings result in a physician-to-serious-illness-person ratio of about 1:28 000 in 2030.1 To address the workforce shortage, stronger alignment is needed between intensity of patient needs and provision of palliative care services. Such an alignment better harnesses the talents of those in a position to deliver core palliative care services (such as discussing goals of care with patients or managing their symptoms) while engaging palliative care specialists to address more complex issues. We introduce the concept of "Palliative Care Champions," who sit at the nexus between specialty palliative care and the larger clinical workforce. Acknowledging that the needs of most patients can be met by clinicians who have received basic palliative care training, and that specialty palliative care is not always available for those with more complex needs, there exists an important opportunity for those with additional interest to scale training and quality improvement to fill this void. J Am Geriatr Soc 67:S461-S467, 2019.

Going for Broke: A Longitudinal Study of Patient-Reported Financial Sacrifice in Cancer Care.

PURPOSE: Patients with cancer are at risk for substantial treatment-related costs; however, little is known about patients' willingness to sacrifice to receive cancer care and how their attitudes and burden may change with time. PATIENTS AND METHODS: We conducted a longitudinal survey of insured patients with solid tumor cancers receiving chemotherapy or hormonal therapy. Patients were surveyed at two time points about their willingness to make financial sacrifices and their actual sacrifices, including out-of-pocket costs. Patient attitudes and sacrifices were compared over time. RESULTS: Of 349 patients approached, 300 completed the baseline survey (86% response) and 245 completed the follow-up survey 3 months later (82% retention). Median patient-reported cancer-related out-of-pocket costs for patients who completed both surveys were $393 per month (range, $0 to $26,586 per month) at baseline and $328 per month (range, $0 to $8,210 per month) at follow-up. At baseline, 49% were willing to declare personal bankruptcy, 38% were willing to sell their homes, and ≥ 65% were willing to make other sacrifices, including borrowing money to afford their cancer care. Upon follow-up, there were minor decreases in willingness; the maximum net change was a 7% decline in patients willing to declare bankruptcy. Actual sacrifice increased over time; the greatest increase was in patients who used their savings (increased from 41% to 54%). CONCLUSION: A large proportion of insured patients with cancer were willing to make considerable personal and financial sacrifices to receive care; these attitudes did not change greatly over time. Shared decision making is important to ensure patients fully understand the goals, risks, and benefits of therapy before they make such personal sacrifices.

Expanding Palliative Medicine across Care Settings: One Health System Experience.

BACKGROUND: The success of our hospital-based Palliative Care program stimulated requests to duplicate the program across the health system continuum of care. OBJECTIVE: To develop a model of care focused on a high-need, high-cost population that could be implemented across all care settings, including hospitals and patients' homes. METHODS: To fiscally support program expansion from hospital to home, we conducted a retrospective cost analysis for home-based Palliative Care (HBPC)-enrolled patients with continuous claims months before program enrollment through date of death. The HBPC enrollees were evaluated against a cohort group of CMS (Centers for Medicare & Medicaid Service) and Medicare Advantage patients who did not participate in the HBPC program (n = 3135). Twenty-one months of claims leading up to the date of death were evaluated for both populations. The analysis was designed to test whether Palliative Care patients demonstrated less overall claims expense and service utilization in the same periods as patients without Palliative Care. Claim months were grouped into three-month clusters for evaluation and statistical testing of per member per month utilization and cost. RESULTS: Overall, HBPC patients demonstrated significantly less service utilization and cost in the months leading up to death. Cost differences were primarily driven by clear cost divergence in the last three months of life [$9,843 (PC) vs. $27,530 (C)]. Our program grew from a hospital-based program to include the establishment of a home-based program. CONCLUSION: Palliative Care programs can successfully expand outside hospital walls to serve a high need/high-cost patient population.

A Person-Centered, Registry-Based Learning Health System for Palliative Care: A Path to Coproducing Better Outcomes, Experience, Value, and Science.

BACKGROUND: Palliative care offers an approach to the care of people with serious illness that focuses on quality of life and aligning care with individual and family goals, and values in the context of what is medically achievable. OBJECTIVE: Measurement of the impact of palliative care is critical for determining what works for which patients in what settings, to learn, improve care, and ensure access to high value care for people with serious illness. METHODS: A learning health system that includes patients and families partnering with clinicians and care teams, is directly linked to a registry to support networks for improvement and research, and offers an ideal framework for measuring what matters to a range of stakeholders interested in improving care for this population. MEASUREMENTS: Measurement focuses on the individual patient and family experience as the fundamental outcome of interest around which all care delivery is organized. RESULTS: We describe an approach to codesigning and implementing a palliative care registry that functions as a learning health system, by combining patient and family inputs and clinical data to support person-centered care, quality improvement, accountability, transparency, and scientific research. DISCUSSION: The potential for a palliative care learning health system that, by design, brings together enriched information environments to support coproduction of healthcare and facilitated peer networks to support patients and families, collaborative clinician networks to support palliative care program improvement, and collaboratories to support research and the application of research to benefit individual patients is immense.