End of life care is intensive, expensive, and highly dependent on where one lives. This poses quality, economic, and equity concerns. Intensive care near the end of life (EOL) is a quality concern because most patients do not want intensive interventions at the EOL. It is an economic problem because 25 percent of health care spending is on the six percent of patients who die each year, yet intensive care at the EOL is not associated with better outcomes or greater satisfaction with care. Finally, it is an equity concern because the regional variation is substantial, and not driven by patient preferences.
EOL care for patients with Alzheimer’s disease and related dementias (ADRD) is particularly complex. Three things have to happen for less intense EOL care to be delivered, all of which pose higher hurdles for patients with ADRD. (1) Plan: individuals must state their preferences for care. This is especially important for patients with ADRD, who may lose the ability to consent near the EOL. (2) Communicate: providers must know those preferences in a timely manner. Again, this need is more acute when patients themselves reach a stage when they must rely on systems and caregivers to make their wishes known. (3) Facilitate: regulations and resources must allow those preferences to be honored.
The US health care system has been rapidly changing its financial incentives and system integration in order to improve care delivery for all patients, but to date, the role these system changes has on EOL care has been thus far under studied. Using a mix of claims, surveys, and a newly created database of health care system changes that focus on financial and system integration, this study will estimate the effectiveness of the last 20 years of innovation on the quality of EOL care. In addition to identifying the overall impact, we also will examine the effectiveness of these interventions for individuals with ADRD, because of the complex nature of the systems, the disease, and its predicted increasing prevalence. Finally, we will drill down and identify how EOL care is changing in response to these policy changes, planning vs. communication vs. facilitation, in order to identify where further interventions should be focused.
This project will help explain the geographic variation in EOL care, identify which of our policies have the most influence over patients and providers, and uncover important variation by disease. The impact of this work will be identifying where future efforts for behavior change should focus in order to match patients’ preferences to the care they receive at the EOL.
Our key outcomes include documenting several differences in EOL care between Medicare Advantage and traditional Medicare, difference by race, and differences by disease.
In Park, Figueroa, Fishman, and Coe (2020), we examined access and costs of primary care in MA plans compared to traditional Medicare. Compared to TM beneficiaries, MA beneficiaries had significantly higher rates of primary care visits and lower costs for these services, but the differences were not substantial. Furthermore, MA beneficiaries were more likely to receive essential preventive services compared to TM beneficiaries. Our findings suggest that MA beneficiaries not only have more primary care but also receive primary care at lower prices. The prices are relatively low, and thus this may offset the difference in primary care utilization.
Park, Teno, White, and Coe (2022) examined differences in EOL care between MA and traditional Medicare. We find evidence that MA plans may improve end-of-life care by reducing hospital death while also improving access to hospice, especially among recently hospitalized persons. Further, there are some important differences in health care utilization near the end of life. We did not find evidence that MA enrollment led to a change in hospital admissions in the last 30 days of life, but MA enrollment decreased hospital as the site of death and increased hospice use at the time of death.
In a series of papers we examined racial differences in care between MA and traditional Medicare. Park, Fishman and Coe (2021) find that evidence of racial disparities in access to high-quality primary care, especially in MA. While White beneficiaries in TM and MA had similar rates of hospitalizations due to ambulatory care sensitive conditions (ACSC), Black beneficiaries in MA had higher rates of ACSC hospitalizations than Black beneficiaries in TM, and that the racial differences were greater in MA than TM. Importantly, this is wide-spread; racial differences in ACSC hospitalizations in MA were prevalent in over 95% hospital referral regions, compared to just over half of hospital referral regions in TM.
But not all MA plans are the same. Building on the racial differences work above, Park, Werner, and Coe (2022) examine racial differences in ACSC hospitalizations based on the 5-star quality rating system within MA. We found that the adjusted rates of ACSC hospitalizations were significantly higher among Black enrollees than White enrollees overall, but no significant disparities were found among Hispanic and Asian/Pacific Islander enrollees. Substantial disparities in ACSC hospitalizations exist between White and Black enrollees in MA plans, especially for lower-rated plans. Policies aimed at reducing racial disparities in ACSC hospitalizations could include improving access to high-rated plans. In Park, Langellier, and Meyers (2023), we explored the difference between integrated and non-integrated MA plans. Our findings suggest that integrated MA plans may achieve higher efficiency and quality, but these benefits may not be experienced by all beneficiaries due to disparities in enrollment. As these models continue to spread, it is critical to develop policies to ensure that MA enrollees have equal access to integrated plans.
Building on the aforementioned work on end-of-life care differences between MA and traditional Medicare, Park, Teno, White, and Coe (2023) examine differences in end-of-life care within MA Star rating system. Our findings suggest that MA quality ratings exhibit limited association with the quality of end-of-life care. Particularly, highly rated MA contracts were not associated with improved access to hospice. As the current quality rating system does not factor in measures for end-of-life care, this generates little incentive for MA contracts to improve the quality of care at the end of life. Once hospitalized, however, highly rated MA contracts provide less intensive end-of-life care. As highly rated MA contracts establish networks with highly rated providers, this suggests that provider networks are a pathway used by MA contracts to improve outcomes.
Finally, by disease, in Aamodt, Sun, Dahodwala, Elser, Schneider, Farrar, Coe, and Willis (2024) examine health care utilization and costs during the end-of-life based on diseases. We find that people with neurodegenerative disease (Alzheimer Disease, Parkinson Disease, or amyotrophic lateral sclerosis (ALS)) are more likely to visit the ED and less likely to use inpatient and hospice services at EOL compared to individuals with brain or pancreatic cancer. These differences may stem from prognostic uncertainty and reflect inadequate EOL care practices, requiring further investigation to ensure more timely palliative care and hospice referrals.