Access and quality of hospice care for patients with serious mental illness are rising concerns among providers. Hospices are increasingly recognizing the need to better understand the unique challenges these patients face as they reach the end of life, with cries for further research growing louder. Education and awareness around mental health will be key for hospices to bridge gaps to patients with serious mental illness and their families, along with expanding their interdisciplinary care teams to include psychiatric care professionals.
Research indicates significant disparities in end-of-life care exist for those living with severe and persistent mental illnesses (SPMI). Roughly 6% of the U.S. population have an SPMI that is chronic or recurrent, significantly impairs functioning or requires ongoing intensive psychiatric treatment, according to research from the journal General Hospital Psychiatry.
The unique and sometimes complex needs of patients with serious mental illness can stretch beyond the scope of traditional hospice care. Hospice and palliative care providers are working to improve access and quality of care for these patients.
“There’s a perpetual balancing around mental health, but hospices need to do more,” Brian Mistler, chief of people, culture, and clinical operations officer at Vynca, told Hospice News. “We know that facing the issues around grief and advance care planning can be challenging for families — adding components of mental illness multiplies these challenges. It can also exacerbate the complexity of grief, as individuals may have struggled for a long time to care for or cope with the impacts of their loved one’s mental illness.”
According to Mistler, the health care system is failing those with mental illness, and hospices are among those that need to improve support systems for these patients. Mistler was president and chief operations officer for the palliative care provider ResolutionCare, which advanced care planning tech company Vynca acquired earlier this month.
One in 20, or 5.2%, of adults nationwide, had a serious mental illness (SMI) in 2019, according to a report from the Substance Abuse and Mental Health Services Administration (SAMHSA). Nearly 2.8% or 7 million adults in the United States suffer from bipolar disorder each year, reported the National Alliance on Mental Illness, while people with schizophrenia and borderline personality disorder number 1.5 million and 3.5 million, respectively.
Individuals with SPMI are known to experience more inequities in care on average than those without, according to research from the Journal of the American Psychiatric Nurses Association, which reported that currently little is known about hospice use among individuals with SPMI, including what factors contribute to the use of hospice services.
Individuals with SMI are disproportionately affected by chronic diseases and die younger than the general population, according to the researcher, Diana Hanan, a family nurse practitioner for Massachusetts-based MedOptions, a national provider of behavioral health services in skilled nursing and assisted living facilities.
“More education and training on working with individuals with SMI could really benefit hospice providers,” Hanan told Hospice News. “Hospice providers should know that many people with serious mental illnesses are able to manage their symptoms with medications, and do not exhibit bizarre behavior or violence. There’s some fear on the part of providers — this expectation that individuals with SMI are dangerous or unpredictable, and because of this some providers are reluctant to work with this population. Hospice providers should let these individuals know that they are there to support whatever needs they have and not to prescribe a specific treatment.”
Individuals with serious mental illnesses may have difficulty trusting medical providers due to negative past experiences, which might have included involuntary hospitalizations or medication, according to Hanan. Building up trust and understanding is critical for hospices to be able to provide good care to individuals with serious mental illness, she said.
Psychiatric conditions evolve as patients age, posing challenges for hospices working to better understand the parameters of their needs and goals of care. Delving deeper into a patient’s electronic health records can help hospices to gain a fuller picture, Hanan told Hospice News.
“One note on incomplete data in EHRs: psychiatric diagnoses can change over time, and sometimes initial diagnoses do not accurately reflect the particular emotional and cognitive struggles that an individual with a serious mental illness has,” Hanan said. “Unfortunately, psychiatric diagnoses can ‘follow’ an individual for a long time. To most effectively treat an individual with SMI, a provider needs to assess current symptoms and gather more information if necessary.”
To provide high-quality care for mentally ill patients, hospices should work with the patient’s entire medical care team and consult a psychiatrist, reported the Disability Services & Legal Center.
Focused training for hospice staff around the specific needs of patients with SMIs or SPMIs can go a long way to improving connection and comprehension, according to Mistler, along with networking with other agencies and providers specializing in psychiatric care.
“It’s nearly impossible for any agency to do this alone,” said Mistler. “A little bit of focused training can go a long way. Invite trainers to talk about those differences and help staff prepare — from the first phone call to recommendations around non-compliance. Just making people aware that mental health deserves attention as its own set of concerns, and that those concerns impact all the others.”