Hospices’ Unanswered Questions: Filling the Research Gaps

Research around hospice care has come a long way. But data gaps exist when it comes to expanding understanding of some aspects of end-of-life care delivery.

A range of researchers has amassed a growing base of data on hospice, with some common themes tied to quality outcomes, costs, length of stay and general inpatient care.

Some of the blindspots in the current sphere of hospice research hover around staffing trends and patient needs. Having more information around successful care delivery models and training processes could impact the ability for hospices to foster growth and improve sustainable clinical capacity.


Developing effective education strategies

Hospices are in tremendous need of data that helps them better understand the keys to sustainability amid widespread workforce shortages and rising demand, according to Dr. Andy Esch, palliative care specialist and senior education advisor at the Center to Advance Palliative Care (CAPC).

More research around effective hospice education approaches could help build stronger interdisciplinary training models that attract and retain quality staff, Esch said at the Coalition to Transform Advanced Care (C-TAC)-CAPC Leadership Summit in Washington D.C.

“We need research to back up that high-quality training matters and be able to show that value to stakeholders to really push to make change happen,” Esch told Hospice News at the Leadership Summit. “The hospice and palliative model works and it should be available to people when they’re seriously ill.”


On the patient side, hospices lack the depth of insight needed around the diverse range of serious and terminal illnesses trajectories of today’s aging population, Hospice of Acadiana CEO Keith Everett. Much opportunity exists for research to dig into the different diagnosis and experiences among patients in hospice, he stated.

Armed with wider data, hospices could better anticipate the unmet needs of various underserved patient populations and the ways they could shape community education and referral outreach to improve access, he stated.

“There are significant opportunities for hospices with their rich dataset to really start getting into some research studies around the overall care that we’re providing related to very specific diagnosis,” Everett told Hospice News. “But then it’s also this education piece. We can continue to educate our communities and those that are not using our services to pay more attention to why hospice and palliative care are so important.”

Unanswered questions in pediatric care, caregiver experience

The growth and development of future hospice programs is being affected by a lack of information around patient and family needs, particularly when it comes to children and young adults with serious illness, according to Jonathan Cottor, CEO and founder of the National Center for Pediatric Palliative Care Homes.

More hospices have delved into community-based palliative care, but not enough have geared these services towards pediatric populations, Cottor said.

Among the reasons hindering growth are insufficient data around the unique needs of dying children and their families beyond just the medical aspects of their health care, he stated. Much of the research in pediatric illness focuses on the disease and potential treatments and cures rather than the experiences and impacts of palliative and hospice care, he said.

““A real challenge in the industry is getting research and documentation around the more anecdotal stories of parents of children in hospice and palliative care,” Cottor told Hospice News. “It’s really difficult to focus research on this because you can’t simply pull that information through the claims data. Most of the cutting edge research that is being done focuses on the cure and where the new treatments are happening. That’s incredibly important, but so are the families on these journeys right now. They have medically fragile kids with insanely expensive health care.”

More of these data could make the case to legislators for stronger reimbursement and policies that allow hospices to expand community-based pediatric palliative care in their communities, Cottor added.

“Those kinds of evidence-based and more robust research helps the community understand this area better,” Cottor said. “Let’s get more published research to catch up with the pace that we’re running at now. Because that’s how we’ll be bumping into policymakers at regulation levels of what needs to be amended. It’s having the ability to show how these services have developed in the last five to 10 years.”

Greater data on caregiver experiences is also needed to understand the impact of hospice services, according to Dianne Munevar, vice president of health care strategy at NORC at the University of Chicago.

NORC was among the trio of organizations that published a report that showed how longer hospice stays can reduce health care spending toward the end of life, along with the National Hospice and Palliative Care Organization (NHPCO) and the National Association for Home Care & Hospice (NAHC).

The joint report published in March found that hospice care — regardless of length of stay — saves Medicare approximately $3.5 billion for patients in their last year of life, a 3.1% reduction. But those with stays of six months or more yielded the highest percentage of savings.

The findings are crucial to the value proposition of hospice and resolving scrutiny over the duration of stay, according to Munevar.

A missing piece in the data was the value of different types of hospice services such as respite for caregivers, and what these services mean for overall health care expenses at the end of life, Munevar said at Congressional Briefing earlier this year.

“There’s so much controversy over long stays, and so I think going into this research maybe we would have assumed that the longer stays were going to end up costing Medicare much more money,” Munevar said. “What we found was actually the opposite. When you add the fact that for the Medicare beneficiary and caregiver it’s just more of a positive experience overall, it almost feels like a no brainer.”

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