Palliative care, pediatric end-of-life care and end-of-life doula (EOLD) services are top of mind for hospices that are diversifying their services in 2024.
Fewer than half of 143 respondents to Hospice News’ 2024 Outlook Survey, conducted with Homecare Homebase, reported that their hospice organizations would pursue new care types this year. But the aim of their service diversification efforts may indicate future trends.
Service diversification trends in hospice could ramp up as value-based care models incentivize this path, according to Tony Kudner, chief strategy officer of the home-based care consulting company Transcend Strategy Group. Considerations around sustainable growth are key to address, he said.
“There’s going to be so much change around value-based care coming in some way, shape or form for hospices,” Kudner told Hospice News. “We’re seeing a lot of providers building the foundation now for the changes that are coming. Now is the time to make sure that you’re not over-dependent on one line of service or one referral source. Now’s the time to make sure your entire book of business isn’t tied to one source. If you decide to pursue another opportunity, you may have massive exposure in terms of sustainability.”
About 16% of the survey respondents indicated plans to start palliative care programs this year, a decline from 56% of respondents in 2023.
Roughly 6% of hospices reported plans to diversify with death doula services, with the same amount voicing interest in launching advance care planning services.
About 3% of respondents indicated plans to start offering PACE programs, while 1% are stepping into home-based pediatric hospice services in 2024.
Hospice NewsThe case for pediatric palliative investment
A growing need for pediatric palliative care exists, though reimbursement options can limit expansion, according to Mary Kay Sheehan, CEO of Illinois-based Lightways Hospice and Serious Illness Care.
Fewer than half (42.1%) of counties in the United States have some form of home-based palliative care programs in place, the National Hospice and Palliative Care Organization (NHPCO) reported.
In the United States, about 177,360 children have conditions that warrant palliative care on an annual basis, according to the 2015 report “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life,” published by the National Academies Press.
“Families often want pediatric palliative care, but the reimbursement is nearly nonexistent,” Sheehan told Hospice News. “It’s absolutely necessary as community-based providers to diversify and have other services for patients to access. But it goes both ways. We can’t go crazy and diversify into things we don’t know about and aren’t part of our core competencies in the serious illness and end-of-life care realm.”
Lightways has grown its pediatric palliative care program in recent years, tripling its clinical capacity with expanded geographic service regions, staff and census. The nonprofit’s pediatric program grew its capacity to 120 patients in 2022, a rise from a previous census volume of 40. Additionally, the program’s service area has extended to the City of Chicago and other areas further north and northwest.
Among the significant challenges that hospices face when launching new service lines is ensuring they have the expertise and staffing resources necessary, Sheehan said.
It’s absolutely necessary as community-based providers to diversify and have other services for patients to access … The biggest challenge is having the kind of expertise and staffing, especially with children.
— Mary Kay Sheehan, CEO, Lightways Hospice and Serious Illness Care
Prolific workforce shortages can make finding and keeping palliative and pediatric care professionals an uphill battle, according to Sheehan. Alongside recruitment and retention issues have come reimbursement challenges, she said.
“The biggest challenge is having the kind of expertise and staffing, especially with children,” Sheehan said. “You have to have enough patient volumes so that you can keep staff employed but not overwork them. And that can be difficult when you only have a few clinicians with the experience needed. It’s about making sure we meet the needs of medically fragile children, and that is where the financial risk comes into play more on the palliative care side over hospice.”
Hospices’ sights on PACE
Some hospices have considered PACE (Program of All-Inclusive Care for the Elderly) programming to improve quality outcomes and address unmet social determinants of health needs among patients and their families.
A main reason more hospices are eyeing PACE services centers around an opportunity to diversify revenue streams and reach patients sooner in their disease trajectories, says Samantha Black, executive director of PACE services at TRU Community Care. The Colorado-based hospice provider began offering PACE programming in 2017.
“The PACE model provides a greater opportunity to serve older adults more upstream of the end of life, especially those more at risk of falling through the cracks in the health system,” Black said. “Participants are those who generally have low income, are more medically complex and have a higher risk of having unmet needs or difficulty navigating the system.”
The PACE model provides a greater opportunity to serve older adults more upstream of the end of life, especially those more at risk of falling through the cracks in the health system.
— Samantha Black, executive director of PACE services, TRU Community Care
Individuals eligible for PACE services include seniors 55 and older who live in a service catchment area defined by zip codes. Participants are typically those certified by a state to require nursing level of care (which can be home-based), and need assistance with certain activities of daily life (ADLs).
Most PACE participants are reimbursed through the long-term care programs within Medicare and Medicaid, according to Black.
PACE services can give hospices greater access to a wider range of patients in need of support within their geographic regions, she said. These services can also bring opportunities to reduce expensive health care utilization among seniors, particularly those with serious and terminal illnesses, Black indicated.
“PACE is a solution to that in terms of having a full, comprehensive model of care that wraps around services to adults in advance of end-of-life care in a way that optimizes quality and keeps patients out of emergency rooms,” Black said. “It’s a win for the payers and providers in cost savings.”
Investing in PACE programming can be a heavy lift on the front end, Black stated. It can take 18 to 24 months before these services are generating sustainable revenue, she said, with hospices often seeking grants, loans and fundraising to get these programs in more self-supporting places.
End-of-life doulas on the rise in hospice
End-of-life doulas are a growing area of interest among hospices in recent years.
Case in point, Virginia-based Goodwin Hospice formed a collaboration with end-of-life doula provider Present for You LLC roughly three years ago. The nonprofit hospice is part of senior living and health care organization Goodwin Living.
Since then, the hospice has seen improved quality outcomes, according to Beth Klint, executive director at Goodwin Hospice.
Hospices layering in EOLDs into their workforce could see a return on these investments in various forms – including quality outcomes, retention and care continuity, she said.
“We were trying to identify ways that we could further support our patients and also our staff to meet their needs,” Klint said. “We started looking at doulas as a creative way to meet patient needs. It’s making sure that both the people we provide care to and our staff providing the care feel supported, and that they have resources and options to be able to help them. That was the whole reason why we entered this whole partnership with end-of-life doulas.”
We started looking at doulas as a creative way to meet patient needs. It’s making sure that both the people we provide care to and our staff providing the care feel supported … That was the whole reason why we entered this whole partnership with end-of-life doulas.
— Beth Klint, executive director, Goodwin Hospice
When it comes to delving into EOLD services, a key reason hospices may be increasingly interested is in part the additional bedside time with patients and families, said Klint. End-of-life doulas can provide an augmented level of supportive care, a main reason why some hospices’ interests in these services are peaking, she stated.
“[Doulas] are able to meet a patient where they are and be able to spend whatever time it is that they need to be able to work through whatever is going on,” Klint told Hospice News. “That nonmedical presence is a big piece, it’s a resource that is available to support the patient and their family. The biggest thing that keeps me up at night is having more people that need care than staff to provide it. It’s important that all interdisciplinary staff are aware of what an end-of-life doula can do to use this supportive resource.”
EOLDs can provide emotional, spiritual and practical support to hospice patients and their families, according to Joan Bretthauer, director at the National End-of-Life Doula Alliance (NEDA). She also serves as president emeritus of the Gateway End-of-Life Coalition and founder of ACE End-of-Life Doula Services.
“A large pro is the team collaboration and how doulas collaborate with clinicians, chaplains and social workers in that interdisciplinary approach,” Bretthauer said. “It’s the consistency of comprehensive care as a huge reason for bringing an end-of-life doula to the table.”
Among the most common challenges faced by hospices diversifying with EOLD services is working out the kinks of compensation, Bretthauer explained.
Doula services are often supported through philanthropic donations and offered to patients and families as a complimentary service. Some of the upfront costs associated with bringing on EOLDs involve those around fine-tuning the referral structure and how these professionals work with care managers.
Some hospices have volunteer EOLDs that provide services, but challenges include timely access and balancing demand with resource availability, Bretthauer indicated.
“Hospices may be recognizing their value, but a challenging part of hiring end-of-life doulas is paying them and finding that funding source to have enough money to compensate them,” she told Hospice News. “Some have volunteer end-of-life doulas, but the pitfalls can involve accessibility, as volunteers are not as easily available.”
