Key Research Trends: State CON Laws, Dementia Patient Trajectories Reshaping Hospice

Data are reshaping the health care space, and hospice is no exception.

Data has played a large role in the ability to gauge the impact of end-of life care. Hospice providers have needed a window into access and utilization, as well as how lawmakers are shaping policies around health care.

This article is the second of a series that details key findings from recent research on hospice care, featuring numbers that could influence the ways hospices approach strategic growth, as well as managing end-of-life care for complex illnesses such as dementia and Alzheimer’s.


CON laws and hospice access, growth impacts

Debates have heated up around the impacts of certificate of need (CON) laws and their ties to quality as regulators try to curb bad actors from entering the hospice industry. Data on CON laws has taken on new significance as regulators zero in on the hospice space.

Though CON regulations are not necessarily an indicator of quality, size or ownership status, they can give lawmakers a window into the relationship between quality and oversight, as well as other variables that impact end-of-life experiences, according to John Cagle, associate professor at the University of Maryland’s School of Social Work.

“We know that addressing issues related to quality of hospice care is timely and critical to state (and also federal) lawmakers,” Cagle told Hospice News in an email.


Cagle was one of the contributing researchers of the recently unveiled data from the American Journal of Hospice and Palliative Medicine. The data revealed a tie between state certificate of need (CON) laws and hospice quality outcomes.

Only 14% of all hospice nationwide provide services in states with CON provisions in place, researchers found. These hospices had a higher unadjusted mean of Hospice Item Set (HIS) quality scores for all measures than the remaining roughly 86% of those that did not — all of which are located in states without/that do not have CON regulations.

The findings suggest that CON laws may have a correlation with higher quality outcomes, though the tie may not be causational in nature, according to Gaines and fellow researcher Arlen Gaines, a doctoral candidate in palliative care at the University of Maryland.

“When just looking at the straight, raw comparisons of the mean HIS outcomes between the CON and non-CON states, it was always slightly higher in the CON states,” Gaines told Hospice News in an email. “We found that the states that do have CON for hospice seem to be associated with a higher level of quality, even when controlling for ownership and size.”

Having data around CON regulations and their impacts can help inform lawmakers as they develop policies to guard against fraud, waste and abuse, according to recent researchers.

On one hand, some states without CON regulations have experienced heightened instances of hospice fraud, waste and abuse such as Arizona, California, Texas and Nevada, among others. A rise of fraudulent allegations has given way to increasing concerns on how CON laws impact quality end-of-life care outcomes.

On the other hand, these regulations can have direct impacts on how providers grow and sustain their services, Melinda Gaboury, co-founder and CEO of Healthcare Provider Services Inc., stated at the National Association for Home Care & Hospice (NAHC) Financial Management Conference in New Orleans.

“[With the] many things that our industry is currently going through, you’re going to hear about there being proposed to basically slaughter the rights we currently have in hospice and the additional scrutiny that [regulators] are beginning to implement for newly certified hospices in five different states,” Gaboury said.

More research around CON laws and their impacts on quality outcomes could provide clarity in determining how lawmakers guide future decisions around these and other hospice regulations, according to Cagle.

In addition to HIS quality scores, variables taken into account in the CON research included examining ownership type of for-profit private entity and nonprofit status, along with geographic scale and organization size. Examining all these factors together (CON status, ownership and size), can help policymakers “predict a certain outcome” around existing quality measures, Cagle stated.

Larger hospices in states with some form of CON law in place reflected higher quality HIS scores than smaller providers in states that did not, researchers found.

Additional deep data dives into policies beyond CON laws and other requirements related to hospice regulations, including clinical education requirements and associations between different terminal prognosis and levels, length of care such as dementia, Cagle indicated.

“It could be possible that other variables or factors are impacting the outcomes, so more research would be helpful,” he said. “For instance, does the training or experience of the clinicians who are completing the assessments impact the outcomes? Do certain characteristics of hospice agencies impact the outcomes, i.e. hospices that have higher percentages of patients with dementia or those who don’t have other levels of care?”

Data on Alzheimer’s, dementia points to changes needed in hospice

Data has increasingly illustrated a conflicting connection between reimbursement, length of stay and cost of hospice for patients, particularly those with Alzheimer’s and other types of dementia.

Case in point, the average annual per-patient total cost of care for hospice beneficiaries 65 and older with some kind of dementia was nearly 17x higher in 2022 than for those without these conditions, according to research from the Alzheimer’s Association.

Providers received an average annual reimbursement rate of $2,328 for each Alzheimer’s hospice patient that year, compared to $136 for those without dementia.

Patients with dementia often have longer hospice stays and require more intensive and expensive levels of care compared to others, drawing the attention around a potential call to change around how the Medicare Hospice Benefit is structured from providers, industry stakeholders and policymakers alike.

Determining when a patient with Alzheimer’s and dementia is eligible for hospice care can be challenging in the face of the six-month terminal prognosis, given the unpredictable nature of these diseases, according to Keisha Mason, director of nursing at Heart’n Soul Hospice.

“When you’re looking at these patients, you might think they have to be on hospice, but then six months later you’re looking at it wondering why or how this person is still here,” Mason told Hospice News. “You’re still seeing declines and still seeing that dementia state impact them. Can they walk? Do they understand the pain they’re having anymore? Or they don’t recognize that they need to eat. They might still be functioning, but it is not ‘good functioning.’”

About 1 in 9 seniors will have a dementia-related condition by 2050, representing roughly three-quarters (73%) of the nation’s overall aging population, according to another report from the Alzheimer’s Association.

A projected 12.7 million Americans 65 and older will have Alzheimer’s or other dementias by then, nearly double the current estimated 6.7 million seniors with these conditions, according to the report.

“With this proliferation comes an increased need for competent, high-quality hospice and palliative health care for patients with Alzheimer’s and other degenerative brain diseases,” Alzheimer’s Association researchers wrote in the report.

Having data around how access to end-of-life care impacts outcomes can be key to improving quality for dementia patients.

These patients can often require longer stays as their diseases progress along different stages of dementia. Pain and symptom management can complicate hospices’ ability to deliver quality services, and having research that digs into these patients’ full scope of interdisciplinary needs can help drive future policies around end-of-life care.

For instance, individuals with Alzheimer’s and other dementias may require more assistance with activities of daily living, medication management and experience other related health conditions as their diseases progress, according to recent research from the National Partnership for Healthcare and Hospice Innovation (NPHI).

NPHI in concert with Aliviado Health and the Center to Advance Palliative Care (CAPC) recently developed a new resource guide around quality dementia care criteria for hospice and palliative providers

The guide is aimed at helping providers support and understand the end-of-life care needs for people with dementia, as well as provide information on medical and psychosocial assistance and resources for caregivers and family members, according to researcher Ab Brody, associate director and founder of the Hartford Institute for Geriatric Nursing at Aliviado Health. Brody is also a registered nurse in end-of-life care.

“Our mission is to build expert teams who can then provide expert care and an extra layer of support to persons living with dementia and their care partners,” researcher Ab Brody, associate director and founder of the Hartford Institute for Geriatric Nursing at Aliviado Health. “As a registered nurses and geriatric and palliative nurse practitioner who has both provided care for over 20 years, and cared for multiple family members living with dementia, I know the toll this set of illness can take on individuals and their families. I have also seen how the right intervention, tailored specifically for a person living with dementia and their care partner, can radically improve the experience of caregiving and quality of life.”

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