Improving Hospice Access for Patients with Serious Mental Illness

Greater communication and deeper integration of psychiatric-palliative care are avenues for hospice providers seeking to remove barriers to access and improve quality of care for patients with mental illness. Research indicates significant disparities in the end-of-life experience for patients with serious persistent mental illnesses (SPMI), with inadequate collaboration among clinicians and lack of psychiatric-specific care among the contributing factors.

An estimated 5 to 8 million older adults in the United States have one or more mental health conditions, according to research from 2018 supplement to the Journal of the American Geriatrics Society (JAGS), with projections that this number will triple over the next three decades.

These patients’ conditions compromise their ability to age in place, making it more likely that they will rely on acute care rather than hospice. Older patients with undiagnosed and untreated mental health disorders were found more likely to be at increased risk for emergency department visits, placement in nursing home placements, and to develop various other additional health issues, the JAGS study found. 


“Approximately 6% of the population suffers from SPMI that is chronic or recurrent, requires ongoing intensive psychiatric treatment, and significantly impairs functioning,” stated authors in research from the General Hospital Psychiatry journal. “Despite common misassumptions that most individuals with SPMI die prematurely from violence and suicide, the majority of excess mortality is due to chronic diseases such as cancer, heart disease, chronic obstructive pulmonary disease, and dementia. Existing data suggests significant disparities in end-of-life care for those living with severe mental illness. Many of the factors leading to this disparity stem from inadequate interaction and inadequate collaboration between psychiatric and palliative care providers and from current care delivery systems that impede interdisciplinary care.”

Spanning a large cohort study of patients in the last six months of life, General Hospital Psychiatry study’s authors found that disparities in care among patients with SPMI were often directly attributable to their mental illnesses. Increasing collaboration with physicians further upstream in a patient’s care and including dedicated psychiatrists on hospice and palliative care teams are potential ways to break down barriers of access, the authors found. The unique needs of patients with serious mental illness can add layers of complexity to their care trajectories that are beyond the scope of traditional hospice care.

“Establishing community-based connections for mental health needs adds an extra layer of expertise that maybe your typical hospice team might not have,” said John Cagle, associate professor at the school of social work at the University of Maryland. “If providers have access to mental health further upstream before someone gets to hospice, if many of the psychiatric services are established and in place ahead of time, then the need becomes less critical and crisis-driven for the patient and their families.”


Reaching patients further upstream with psychiatric-palliative care programming could help drive down health care costs, giving hospice providers a leg up on competitors in anticipation of the approaching value-based insurance design model demonstration project, coming in 2021. Commonly called the Medicare Advantage hospice carve-in, reducing costs and facilitating better coordination of care are among the intended outcomes of the plan from the U.S. Centers for Medicare & Medicaid Services (CMS). Demonstrating their value proposition in terms of reducing acute care utilization will be essential to negotiating with payers in a value-based payment environment.

Collaboration with primary care physicians will be crucial for hospice providers under the value-based care models, with early communication a key factor in ensuring a timely and appropriate transition into end-of-life care. Developing relationships with referring partners across different health settings will be a critical step towards reaching patients and their families sooner. Collaborative care communication among clinicians across settings can play an especially vital role in the care of patients with serious mental health needs.

“As hospices are receiving a person into care with a serious mental illness, they need to provide as much care in gathering the mental health history and talking with the ongoing providers of that person as they do to the medical illness,” said Katherine Supiano, associate professor in the College of Nursing at the University of Utah. “Referring psychiatric care providers need to have this very careful dialogue to say why the patient needs to be on their medications and clearly state that without this medication they’re going to tailspin into something like depression or have a psychotic episode.”

Supiano practices clinical social work and psychotherapy care for older adults and recently spoke with Hospice News on needs of hospice and palliative care patients with serious mental illness.

“Being in dialogue over the course of the dying process is also important because psychiatric medications are metabolized differently in the body, within the liver and the kidneys that may already not be working right at that point,” Supiano told Hospice News. “Your brain is also going to become more sensitive to those medications over time. This back-and-forth dialogue needs to happen because unless you’re a hospice with experienced psychiatric professionals, you may not have the knowledge base to adequately treat those with serious mental illness. We can educate each other as providers, and more of that shared knowledge needs to happen.”

A strategy hospice providers can employ to better meet the unique needs of those with serious mental illnesses is fostering a better understanding of mental illness among staff, including social workers who often refer patients and families to these services. Expanding training, education, and engaging with community resources and supportive psychotherapy care are among the additional ways hospices are seeking improvement.

Expanding interdisciplinary education has also been a priority for hospice and palliative care providers contending with staff shortages, in part due to limited opportunities in speciality training. Offering specialized training and education in psychiatric end-of-life care could lead to a new pool of applicants for hospices to boost their workforce.

“Developing care for a person with [serious mental illness (SMI)] who is at the end of life requires skill, patience and time,” said Betty Morgan, emeritus associate professor in the School of Nursing at the College of Health and Health Sciences, University of Massachusetts-Lowell. “There is still stigma and bias out there for people dealing with serious mental illness, and it really requires overcoming that bias and getting a tremendous amount of support. There needs to be an understanding of the behavior that these patients are exhibiting for staff not to be frightened by it or sort of just backing away from it, but trying to work with the patient is what’s key.”

Hospice News recently caught up with Morgan regarding a study she co-authored on hospice and palliative care nurses’ attitudes towards people with serious mental illness. The study found stigmas persist among staff surrounding mental illness. The effects of SMI symptoms on trust and communication between clinicians and patients suggested that a greater need exists for improved education and collaboration among psychiatric and palliative care nurses, as well as need for ongoing psychiatric support.

Advocates have been calling for further research into the palliative and hospice needs of those with serious mental illness.

“Training opportunities at the intersection of palliative care and psychiatry, innovative integrated care delivery systems, and further research into the palliative care needs of those with severe mental illness are all integral to improving access to and provision of comprehensive palliative care for individuals living with SPMI,” stated authors in research from the General Hospital Psychiatry.

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