Advocates have increasingly called for expanded resources to address mental health issues and substance use problems (SUPs) among hospice patients to improve delivery and quality of their care. However, limited research is available for hospice providers looking to integrate psychiatric or mental health services.
An estimated 5 to 8 million older adults in the United States have one or more mental health conditions, according to research from a 2018 supplement to the Journal of the American Geriatrics Society (JAGS), with projections that this number will triple over the next three decades. As these aging populations reach the end of life, hospices will need to focus on improving access and services aimed at addressing their specific needs.
“Behavioral mental health has been a bedrock of hospice and palliative care. It’s not an obscure topic, it’s right front and center every single day with patients and families as a core component of care,” said Cameron Muir, M.D., chief innovation officer for the National Partnership for Healthcare and Hospice Innovation (NPHI). “In the advanced illness provider space, it’s perhaps a desire for more of a focus, intention and support from a research perspective.”
Muir also serves as chief innovation officer for Capital Caring Health headquartered in Virginia and chief medical officer for Hospice of the Piedmont. As Muir shared with Hospice News, behavioral and mental health in hospice and palliative care is one of the top current focuses for NPHI’s Innovation Lab. A lack of regulatory, reimbursement and funding support were among the barriers Muir cited as roadblocks of wider probing into psychiatric and substance use issues among hospice and serious ill patient populations.
“We have regulatory requirements in the hospice benefit to support social work and chaplains explicitly, and also a regulation for a year of bereavement support for loved ones after a Medicare beneficiary dies. You have a challenging recognition that it is really important to provide behavioral mental health for hospice family members in addition to the patient, but a complete disregard for how that’s supposed to be sustained economically with a regulation that’s effectively unfunded,” said Muir. “The research funding is a complete disconnect from the everyday experience of hospice and palliative care providers. This is such a big issue. It is so grossly underfunded both on the research side and on the reimbursement side.”
According to Muir, much of the exploration into substance use, behavioral and mental health issues among hospice and palliative care patients is academically based, predominantly stemming from studies by universities and educational institutions with federal funding such as grants.
A data analysis from the University of Maryland’s School of Social Work found that depression and alcohol abuse were prevalent among older adults as they approached the end of life. The research examined survey data collected from 2014 to 2016 in a U.S. Health and Retirement Study (HRS). The bi-annual HRS is a national study in collaboration with the National Institute on Aging (NIA) and the Institute for Social Research at the University of Michigan. Researchers analyzed the HRS data of more than 20,000 older Americans surveyed about chronic illnesses, depression and other health-related behaviors such as substance use.
“Our study looked at depression, anxiety disorder, bipolar disorder, schizophrenia, post-traumatic stress disorder, and problems with alcohol and other drugs among older adults,” said University of Maryland research assistant and doctoral student Todd Becker. “We took the HRS survey respondent data and split it between two groups: those who had died and those who had not over the course of the two years. There was not a statistically significant association for any of the areas except for depression and problems with alcohol. These were separately examined and not a correlation between the two areas, but this information alone is helpful in showing where more focus, time and attention is needed. This exploratory study let us see what issues we don’t have a firm grasp on yet in these aging populations as they reach the end of life, and where future research and future highlights for clinical practice might need to be afforded.”
Becker, also a pre-dissertation fellow in the Association for Gerontology Education in Social Work (AGESW) program, previously coordinated discharge planning into hospice as a former hospital social worker. His experiences with patients suffering from mental health challenges as they approached the end of life drove research efforts to better understand the prevalence of psychiatric and substance use issues in aging and dying adults.
“We need to really focus on the ways to respond to these mental health issues in a timely way and that means more research into them,” Becker told Hospice News. “By not researching it more and addressing it deeper, we’re just letting these mental health challenges persist when there are areas for improvement.The benefit of research like this for a hospice clinician is in the sense of having these mental health and substance use problems on your radar as something you engage with patients and their families to ensure you’re providing the best possible quality care. The next step is how we can utilize this knowledge and sort of build it into a clinically responsive way to be able to address these mental health and substance abuse needs.”
Many patients who experience mental illness are reluctant to seek hospice care due to fears that their behavioral health needs will not be addressed. This represents an unmet community need, as well as an untapped market for providers. Despite the dearth of federal resources, some in the field believe that need is starting to move as providers become more aware of mental health and substance abuse concerns among their patients.
“I disagree that there’s limited research. More recently in the past decade, providers have become very sensitive to substance control issues and the prevalence of mental illness in aging, seriously ill and dying populations is complicated and considerable,” said Claudia Fine, chief professional adviser or eFamilyCare, a digital platform company that supports family caregivers of aging populations, including hospice and seriously ill patients. “It’s so critical and important to integrate the mental and physical health as two parts of the same person needing care. Everything is all integrated. Hospice providers really need to be sensitive to the history that their patients bring to the table and be challenged to look at these patients holistically, look at their family members who are not only dealing with loss of their family member, but also perhaps lifelong anger, confusion and stress of dealing with someone who has severe mental illness or substance abuse problems.”
While many hospice providers work to address mental health issues through programming, therapies and services, there is room to grow to develop best practices aimed at supporting patients and families. Research such as the JAGS study has indicated significant disparities in the end-of-life experience for patients with serious persistent mental illnesses with inadequate collaboration among clinicians and lack of psychiatric-specific care among the contributing factors.
“When facing a terminal illness, addressing underlying mental health needs is crucial,” said Rebecca Bauer, M.D., assistant professor at the Medical College of Wisconsin and director of the inpatient psychiatry consult service for the Froedtert Hospital, in The American Journal of Psychiatry. “There is a lack of research on end-of-life care in those with serious and pervasive psychiatric disorders. There is a lack of literature on how to address unique palliative care needs that can present in those with chronic psychiatric disorders and also how to increase utilization of these services sooner in psychiatric patients facing end of life. Thus far, collaborative care has proven to be most effective.”
Collaborating with consulting psychiatric and behavioral health providers is one strategy toward improving programming. With information key to building up services and programming, expanding staff training and focusing on best billing practices will be additionally important for hospices to improve support for patients suffering with mental health and SUPs.
“Sustainable business models to support the workforce that is specifically doing behavioral and mental health and advanced illness is the first step,” said Muir. “NPHI is looking at billing and coding to support the build out of that workforce. Secondly is what you do with that workforce, and that is in the workflow. You integrate standard screening and outcome measures related to things like depression, anxiety, delirium, insomnia, well-being and, ultimately, quality of life. Thirdly, you systematically measure these behavioral and mental health parameters to start looking at outcomes and interventions that actually improve depression, improve anxiety, improve insomnia and improve quality of life to get to the outcome space.”
Companies featured in this article:
Association for Gerontology Education in Social Work, Capital Caring Health, eFamilyCare, Froedtert Hospital, Hospice of the Piedmont, Institute for Social Research at the University of Michigan, Journal of the American Geriatrics Society, Medical College of Wisconsin, National Institute on Aging, National Partnership for Hospice Innovation, The American Journal of Psychiatry, University of Maryland