National Hospice & Palliative Care Organization Issues Public Comment on OMB Notice

WASHINGTON, July 10 -- Edo Banach, president and CEO of the National Hospice and Palliative Care Organization, Alexandria, Virginia, has issued a public comment on the Office of Management and Budget notice entitled "Methods and Leading Practices for Advancing Equity and Support for Underserved Communities through Government". The comment was written and posted on July 6, 2021:

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The National Hospice and Palliative Care Organization (NHPCO) is thankful for this Administration's continued leadership in addressing health and social inequities exacerbated by the COVID-19 pandemic and appreciates the opportunity to provide comment to the Office of Management and Budget (OMB) on Methods and Leading Practices for Advancing Equity and Support for Underserved Communities Through Government.

NHPCO is the largest membership organization representing the entire spectrum of not-for-profit and for-profit hospice and palliative care programs and professionals in the United States. Comprised of almost 4,000 hospice locations with more than 57,000 hospice staff and volunteers, as well as 48 state organizations, NHPCO members serve most of the Medicare beneficiaries who elect hospice. NHPCO is committed to improving end-of-life care and expanding access to hospice care with the goal of creating an environment in which individuals and families facing serious illness, death, and grief will experience the best that humankind can offer.

We recognize the urgent need to make hospice and palliative care more equitable for all patients with serious and life-limiting illness, and we are committed to support our community as they do all they can to provide high quality, comprehensive and holistic care.

Based on feedback from hospice providers, NHPCO is pleased to offer comments on the following three sections of the RFI: Equity Assessments and Strategies, Barrier and Burden Reduction, and Stakeholder and Community Engagement.

I. Equity Assessments and Strategies. NHPCO appreciates OMB's commitment to advancing equity via the use of data and supports new efforts to collect information on equity assessments and strategies. We offer the following recommendations for OMB and the Centers for Medicare and Medicaid Services (CMS) for enhancing equity assessments and strategies in the healthcare sector, specifically for the hospice and palliative care community.

A. Determine barriers to hospice & palliative care for underserved communities We propose that OMB and CMS identify and examine all factors that limit or prevent people from receiving needed hospice and palliative care, including language barriers, lack of transportation, lack of financial resources, and limited availability of culturally appropriate information. NHPCO recognizes the serious racial and ethnic disparities in palliative care and hospice access that exist today. Of all Medicare decedents in 2018, 50.7% received one or more days of hospice care. While 82.0% of decedents receiving hospice care were White, only 8.2% of patients were Black or African American and 6.7% were Hispanic./1

We recognize the urgent need to make hospice and palliative care more equitable for all patients with serious illness and we are committed to advancing policies that enable the identification of barriers to high quality interdisciplinary care.

B. Understand Social and Environmental Factors - A first step towards increasing health equity is to better understand how various social and environmental factors are associated with and contribute to differential health outcomes. As such, we would support efforts to allow providers to collect additional data on relevant patient characteristics of Medicare beneficiaries during enrollment and/or changes in care. Expanding provider education and incentives for improved social determinants of health (SDOH) assessment and data collection - including data for race, ethnicity, preferred language, interpreter services, transportation, and social isolation - would help to ensure that hospices and other providers are capturing necessary information to document where and how disparities exist. We also note that better data collection on factors such as availability of caregiving, housing scarcity, food scarcity, marital status, and socioeconomic status would further help to improve our collective understanding of the factors that support or impair achievement of positive health outcomes.

C. Acknowledge multiple domains - NHPCO recommends considering the following domains of data when collecting information on hospice beneficiaries:

* Inclusion of language other than English data collection i.e., bilingual services, language competency, diversity of staff and language capabilities, music therapy in other languages, preferred language, type of interpreter services available (phone, video, or in-person).

* Inclusion of data collection on whether culture was respected (this could be added to the CAHPS(R) Hospice Survey)

* Inclusion of sexual orientation and gender identity; and

* Expansion of demographic categories to capture more detailed information (e.g., Asian Americans broken down by region of national origin (East, Southeast, South, and other Asians) and Pacific Islanders broken down to four groups (Melanesians, Micronesians, Polynesians, and other Pacific Islanders).

D. Fund additional training and education - Proper training and education for all workers in the hospice and palliative care field is critical to addressing existing inequities in the delivery of healthcare. NHPCO recommends funding for training and education on race, gender identity and expression, sexual orientation, and religion that should be accessible by all healthcare workers, including those who serve patients with serious and life-limiting illness.

E. Develop a universal and interoperable database - NHPCO supports the development of a universal database that will be accessible across government and will enable programs to accurately assess the extent of the disparities and barriers that exist today and to measure progress made by the government in promoting health equity over time. This database should be informed by stakeholder feedback to ensure the identification of the right key metrics, encourage data standardization, and incentivize investment in data collection and submission, e.g., investment by electronic medical record (EMR) and electronic health record (EHR) vendors to require interoperability when collecting these important data points. This would also require substantial investment in home and community-based providers' access to the technology necessary to assure interoperability./2

II. Barrier and Burden Reduction. NHPCO appreciates OMB's commitment to advancing equity via recommended approaches and methods for assessing and remedying barriers, burden, and inequities in public service delivery and access. We offer the following recommendations for reducing barriers in the healthcare sector, specifically related to barriers that hinder access to hospice and palliative care services.

A. Create a Community-Based Palliative Care Benefit - NHPCO recommends testing a new health care payment and delivery model that would improve access to community-based palliative care for patients facing serious illness. Specifically, we request that CMS implement a community-based palliative care demonstration (CBPC) model that builds on the success of an existing model (Medicare Care Choices Model) and identifies and cares for seriously ill patients who can be cared for in their homes in the community under CMS Innovation Center (CMMI) authority.

Beneficial at any stage of a serious illness, community-based palliative care is an interdisciplinary model of care designed to anticipate, prevent, and manage physical, psychological, social, and spiritual suffering to optimize quality of life for patients, their families, and caregivers. Care is delivered by hospice and palliative care providers and other experienced providers through an interdisciplinary team in the patient's home, allowing those already suffering from serious illness to remain safe from communicable disease, comfortable, and surrounded by loved ones while alleviating the burden on our nation's hospitals.

Most importantly, testing a pre-hospice community-based palliative care benefit will better examine the drivers of the lower rates of uptake of hospice and other end-of-life services among people of color help and address current racial and ethnic disparities that plague the delivery of this critical care today. Black and brown Americans access hospice services at much lower rates, making up approximately 15% of all Medicare beneficiaries receiving hospice in 2018./3

By testing a model that removes key barriers to care for seriously ill individuals living in communities of color, the CMS Innovation Center could better understand the alarming disparity in utilization of this type of care and make an immediate impact on access to needed services for underserved populations.

B. Remove the six-month prognosis requirement for hospice. The Medicare Hospice Benefit currently requires that the hospice physician and the patient's attending physician (if there is one) must certify that they expect the patient to die within six months if the disease follows its normal course for a patient to receive hospice care. The hospice is assessing eligibility throughout the stay in hospice, with the six-month prognosis requirement in mind. This is an outdated policy that poses a significant barrier to hospice care and does not account for the many diagnoses that hospice is utilized for, but are much harder to prognosticate (e.g., neurological disorders, Chronic Obstructive Pulmonary Disease (COPD), congestive heart failure (CHF) etc.).

Findings of the Medicare Care Choices Model (MCCM) support reasons why NHPCO firmly believes that the six-month prognosis barrier should be reformed to tie hospice eligibility to need, not an arbitrary time limit. Hospice under the six-month eligibility model requires that both the patient and the family acknowledge impending death, "which is a concept conflicting with the spiritual beliefs of many African Americans because acceptance often is equated with giving up."/4

Removing this timeframe would expand access to hospice and palliative care utilization across all settings for patients and families by developing a model of care which allows patients and families to benefit from the care coordination, care management, and supportive services offered by the Interdisciplinary Team (IDT) earlier in the patient's disease trajectory.

C. Remove the ban on concurrent care in hospice. Similarly, hospice demands that patients and families to make a choice: choose person-centered, interdisciplinary care at the end of life (hospice)--which is often equated with "giving up"--or keep "fighting." This is a binary choice that was informed by earlier OMB decisions, at a time when there was justifiable concern about whether hospice costs would outweigh benefits. Numerous studies,/5 including the Medicare Care Choice Model Evaluations,/6 continue to show that hospice itself saves the Medicare program money--by assuring that patient preferences are honored, and unnecessary care is not provided--and concurrent care also saves money and enhances quality of care because people who experience the broad range of hospice care want more of it, earlier. This is especially important for traditionally underserved communities: having been excluded from--or sometimes subjected to/7--the health care system, certain groups are simply reluctant to give anything up. Concurrent care makes good fiscal and moral sense for the United States.

D. Broaden the availability of Grief and Bereavement Care. Grief and bereavement care is generally available after hospice care. Disparities within hospice are therefore mirrored within the grief and bereavement system. COVID-19 has disproportionately hurt racial and ethnic minority groups, and if ever there were a time that required additional support for the latent grief that will be felt across the nation, this would be the time. We urge the administration to expand the availability of grief and bereavement support for many reasons, but high among those reasons would be to allow for more equitable distribution of these services.

III. Stakeholder and Community Engagement. To sustain a lasting model for the development of equity-based programs and initiatives, NHPCO believes that disseminating information in a manner that can reach a wide audience and nurturing initiatives from within a community via activists and grassroots mobilization efforts will help to drive stakeholder engagement.

A. Examine needs assessments - NHPCO recommends the use of needs assessments to help determine who may be underserved in specific communities. Every three years, hospitals that are publicly funded/tax exempt need to create a community needs assessment in collaboration with community agencies (health dept, other health systems, etc.), per ACA requirements./8

Harnessing these data and making it more widely accessible would allow agencies to target populations in need.

B. Acknowledge and overcome obstructions to sharing information - Many resources go underutilized simply due lack of awareness. Targeting people through social media is now a frequent method for reaching audiences, but it is critical to consider populations for whom social media use is not a possibility due to socioeconomic status, digital literacy and access, personal preference, or other considerations. We recommend the provision of community billboards in central locations including public transportation hubs, grocery stores, clinics, and libraries. We also recommend disseminating resources through trusted community leaders, such as faith leaders, barbers, and hairdressers, as well as culturally specific newspapers and dedicated community liaisons. We support funding to support the necessary infrastructure to overcome any obstructions to information sharing.

NHPCO commends OMB for their efforts in identifying effective methods for assessing whether agency policies and actions equitably serve all eligible individuals and communities, particularly those that are currently and historically underserved. We share in your goal to promote health equity and stand ready to share our tools and educational resources developed by the NHPCO Diversity Advisory Council for the broader hospice and palliative care community and to continue this important work with CMS and other agencies across government.

Thank you for your consideration of NHPCO's comments on this request for information. We welcome continued engagement with you and your staff and the opportunity to meet to discuss our recommendations. If you have questions or to schedule a meeting, your staff should feel free to contact Annie Acs, Senior Director, Health Policy & Innovation at [email protected].

Sincerely,

Edo Banach, JD

President and CEO

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Footnotes:

1/ https://www.nhpco.org/wp-content/uploads/NHPCO-Facts-Figures-2020-edition.pdf

2/ Studies have recognized that lack of investment in EHR for home and community-based providers--who serve the most vulnerable members of society--may exacerbate disparities. See, e.g. https://aspe.hhs.gov/basic-report/ehr-payment-incentives-providers-ineligible-payment-incentivesand-other-funding-study.

3/ https://www.nhpco.org/wp-content/uploads/NHPCO-Facts-Figures-2020-edition.pdf

4/ Drisdom S. Barriers to using palliative care: insight into African American culture. Clin J Oncol Nurs. 2013 Aug 1;17(4):376-80. doi: 10.1188/13.CJON.376-380. PMID: 23899976.

5/ 4 Powers et al. Cost Savings Associated with Expanded Hospice Use in Medicare. J Palliative Med. 2015 May 1; 18(5):400- 401

6/ Abt Associates, Second Annual MCCM Evaluation, at https://downloads.cms.gov/files/mccm-secannrpt.pdf

7/ https://www.cdc.gov/tuskegee/index.html

8/ Internal Revenue Service. Community Health Needs Assessment for Charitable Hospital Organizations - Section 501(r)(3).

CC:

Chiquita Brooks-LaSure, Administrator, Centers for Medicare & Medicaid Services, Department of Health and Human Services

Attention: CMS-1714-P

P.O. Box 8010

Baltimore, MD 21244-1850

Marcella Nunez-Smith MD, Chair, COVID-19 Health Equity Task Force

The White House

1600 Pennsylvania Avenue, NW

Washington, D.C. 20500

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The notice can be viewed at: https://www.regulations.gov/document/OMB-2021-0005-0001

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