Huge acquisitions, the labor shortage and regulation dominated the news this year, but other important trends emerged that warrant attention.
Below are 10 of this year’s “hidden gem” stories that didn’t quite make our top 10 most read. These cover the innovative partnerships, new technologies, pediatric care, health equity and other key developments in the hospice space.
More hospices have begun to pursue collaborations or develop partnerships with death doulas to add another layer of support for patients and families.
Death doulas have seen rising demand and heightened awareness of their services throughout the COVID-19 outbreak, and their numbers also have grown.
Case in point, the National End-of-Life Doula Alliance (NEDA) currently has roughly 1,300 members across 49 states, the District of Columbia and 12 additional countries. In 2019, the organization had just 200 members.
Death doulas can help facilitate conversations regarding the dying process, discussing advance care planning, hospice election and advocate for the patient’s wishes in their final days. Working with death doulas has helped some hospices improve awareness and understanding of their services, as well as assist families with issues they face at the end of a loved one’s life, according to some providers.
A number of entrepreneurs have emerged with tech solutions that offer grief and logistical support to bereaved families.
Startups such as Empathy, Betterleave Bereavement Care, Grief Refuge and Help Texts (formerly Grief Coach) have launched platforms designed to help families cope and assist with tasks such as funeral planning, account cancellations, legalities and financial arrangements.
Hospice organizations have increasingly sought partnerships with companies like these, including Compassus, Hospice of the Western Reserve and the National Hospice and Palliative Care Organization (NHPCO), among others.
“There is always the grief and loss that people experience, but also the hard realities that many families aren’t prepared for,” Jim Deal, chairman of Compassus, told Hospice News when the organization’s partnership with Empathy was announced. “We hope that this Empathy program is an opportunity to be additive to the things we already do.”
In this editorial, Hospice News explains the business case for hospices to invest in health equity, and the connections between diversity and reimbursement, compliance, operations, patient access and the workforce.
Vast disparities in hospice utilization exist among some groups and demographics.
Combined, Asians, African Americans and Hispanics in 2018 represented only 20% of Medicare hospice patients, while the remaining 80% were Caucasian, according NHPCO. Bias and stereotyping also have contributed to mistrust in the health care system among LGBTQ+ communities, homeless populations, individuals with disabilities and those with serious mental illnesses.
Generally speaking, hospices have achieved varying results in their health equity initiatives. Some see little improvement, while others are finding success through revamped community engagement strategies.
But research shows that providers that focus on health equity outperformed others in profitability by 36% during Q4 2019, according to a global study by McKinsey & Company. The research included more than 1,000 large companies in 15 countries.
The U.S. Centers for Medicare & Medicaid Services (CMS) has developed some avenues to reimbursement for palliative care services through value-based payment programs and demonstrations.
The most visible attempt began in 2020 when CMS began allowing Medicare Advantage (MA) plans to cover palliative care as a supplemental benefit. CMS has also included palliative care in aspects of the hospice component of the value-based insurance design (VIBD) model demonstration.
Palliative care providers have also entered into payment arrangements with Accountable Care Organizations (ACOs).
However, providers have reported “gaps” existing within some of these models that limit patient access as well as operators’ growth potential.
Calls have grown louder among hospice providers and stakeholders for payers to solidify a dedicated community-based palliative care benefit that would standardize the definition and delivery of these services.
“We certainly need a lot more than what’s currently available. There’s a lot of patients and families out there with serious illnesses who would benefit from home-based palliative care or clinic-based palliative care,” J. Brian Cassel, palliative care research director for the Virginia Commonwealth School of Medicine, told Hospice News. “That’s a robust, multidisciplinary form of palliative care that will be distinct from hospice. We’re overdue for payers and providers to work together to come to an agreement on how to make that happen.”
The staffing shortage was the hospice community’s strongest headwind during 2022, driving up labor costs while adversely impacting clinical capacity, length of stay and a host of other factors.
Hospices have lost workers at record-high rates during the COVID-19 outbreak, among both clinical and nonclinical staff. Meanwhile, the demand for their services is outstripping the supply.
Providers and stakeholders have been calling on legislators to approve the Palliative Care and Hospice Education Training Act (PCHETA), which was reintroduced this past summer. The bill still has not passed, but even if it were, it would not represent a definitive solution to the shortage.
“PCHETA really focuses us on the fact that in order to have really high-quality palliative care, we need a huge catapult to our skilled interprofessional workforce,” Dr. Tara Friedman, vice president and national medical director of the Anthem (NYSE: ANTM) subsidiary Aspire Health, told Hospice News. “We have a really significant workforce shortfall right now. It’s probably even going to get a little worse before it gets better.”
Seriously ill children are among the populations most underserved in hospice and palliative care, a problem that is not unique to the United States. A 2022 study from the Imperial College London’s Institute of Global Health Innovation (IGHI) found that the majority (90%) of the children worldwide in need of palliative care never receive it.
About 65% of countries do not have children’s palliative care services in place, according to the IGHI report. Generally, programs among the nations that have them tend to be understaffed and poorly funded.
“About one in eight children globally are living with some sort of life-limiting conditions and need a specialist to support them,” Laura Dale-Harris, co-author of the IGHI study, and founder and director of the London-based Global Treehouse Foundation, told Hospice News. “Children with medically complex conditions and multiple health needs can be difficult to manage. Different health systems often fail to serve these families because they don’t have the right resources or because it’s very difficult to manage care.”
Without family or friends who can care for them in their homes, many patients would not be able to receive hospice care, but this often imposes a huge financial, logistical and emotional burden.
Close to 53 million people in the United States are currently helping loved ones to maintain their health, quality of life, and independence due to aging, disability, or a chronic health condition, according to the U.S. Department of Health and Human Services (HHS). Replacing their work with paid services would cost an estimated $470 billion each year, the agency indicated.
HHS this year released a National Strategy to Support Family Caregivers to assist those who care for seriously ill loved ones, spearheaded by its sub-agency the Administration for Community Living (ACL)
The strategy contains close to 350 actions that the federal government plans to take to support caregivers in the company year, as well as 150 recommendations that could be adopted at the state or local levels or in the private sector.
“We have an opportunity through some of the data, research, and actions that are in the strategy to get closer to understanding the real dollar value of caregiving, and also what a relatively small investment in supporting caregivers could ultimately save the health care system,” according to Greg Link, director of the Office for Supportive and Caregiver Services at ACL.
A growing number of hospice, home health and palliative care have pursued joint ventures with hospitals and health systems in 2022, including some of the largest providers nationwide.
These JVs have allowed hospitals to expand their services in the home setting without the need to develop a new, whole cloth program. Home-based care providers are able to leverage their experience with community-based care and reach a larger patient population, with palliative care appearing as a key feature of many of these partnerships.
Among the drivers of the JV trend is a growing recognition for more system integration and care coordination across the continuum, according to Aaron Stein, COO of Contessa Health, a subsidiary of Amedisys (NASDAQ: AMED).
“There’s a lot of patients that fall through the cracks because there’s not that longitudinal model of care that’s really in place,” Stein said at the Hospice News Palliative Care Conference in Chicago. “Care integration can be really hard when you have a bunch of disparate providers. We’ve got this incredible opportunity to be able to bring all of this [care] together for patients.”
Bringing goal-concordant care to populations in need will likely require a reexamination of societal views about death, including the “over-medicalization” of end-of-life care.
This Hospice News editorial followed the work of a commission convened by the medical journal The Lancet that outlined principles to guide this process, including ways to address what they call “the social determinants of death.”
The identified principles are designed to foster more conversation about death and end-of-life care, as well as expand education about hospice and palliative care for the public and clinicians in other fields.
“Conversations about death and dying can be difficult,” the commission wrote. “Doctors, patients or family members may find it easier to avoid them altogether and continue treatment, leading to inappropriate treatment at the end of life.”
Policies designed to curb abuse of the Medicare Hospice Benefit may have the unintended consequence of interfering with access to care for dementia patients, a study published in the Journal of the American Medical Association found.
The two policies are the audit system created by Improving Medicare Post-Acute Care Transformation (IMPACT) Act of 2014, and the two-tiered reimbursement for routine home care that reduced payment amounts after 60 days.
Patients with dementia are among the fast-growing populations in terms of hospice utilization. But the unpredictability of those conditions are leading to longer lengths of stay, which regulators often see as a red flag.
The 2019 average length of stay for dementia patients was 126 days, compared to 92.6 days for all hospice enrollees, according to NHPCO. For comparison, the average among cancer patients was 45 days.
For the study, researchers from George Washington University and the University of Chicago examined data from more than 11 million unique hospice care episodes that occurred between 2008 and 2019.
“We found evidence to suggest that recent Medicare policy changes targeting patients with long stays in hospice care were associated with lasting reductions in the share of patients receiving hospice care admitted with an [Alzheimer disease and related dementias (ADRD)] code compared with expectations based on pre-implementation trends,” the study authors wrote.
Hospice News Editor Jim Parker contributed to this report.
Companies featured in this article:
Amedisys, Anthem, Aspire Health, Betterleave, Compassus, Empathy, George Washington University, Global Treehouse Foundation, Grief Coach, Grief Refuge, Help Texts, Hospice of the Western Reserve, Imperial College London, Institute of Global Health Innovation (IGHI), Journal of the American Medical Association, McKinsey & Company, National End-of-Life Doula Alliance, National Hospice and Palliative Care Organization, The Lancet, University of Chicago, Virginia Commonwealth School of Medicine