Palliative approaches to psychiatric care may be happening informally nationwide and beyond, despite not being an officially recognized specialty.
Palliative care prioritizes alleviating suffering rather than improving a psychiatric condition. Familiarizing behavioral health clinicians with the concept of “palliative psychiatry” and its focus on improving the quality of life for those with severe, treatment-resistant conditions could enhance care. Still, the lack of access to behavioral health care may be a prerequisite.
Some of the resistance to the term may be due to confusing palliative psychiatry with end-of-life care, according to Dr. Anand Kumar, professor and head of the department of psychiatry at the University of Illinois.
“The definition has to be reconceptualized,” Kumar told Behavioral Health Business. “It is more getting the patient to live. They accept the fact that established treatments are not working. And, … once they accept that reality, which is not easy, to talk about focusing on positive aspects, their strengths and how to live with the condition they have.”
American behavioral health clinicians do not explicitly practice palliative psychiatry in part because of widespread misconceptions. Health care professionals across the continuum often conflate palliative services with hospice or end-of-life care. Palliative care services address pain and symptom management in patients with serious illnesses and can be offered concurrently with curative care.
Common challenges among psychiatric patients
Between 20% and 60% of people with psychiatric disorders, including schizophrenia, major depressive disorder (MDD), bipolar affective disorder and obsessive-compulsive disorder (OCD), are thought to have treatment-resistant conditions.
The amount of research on treatment-resistant conditions has significantly increased year-over-year since 2000, but few pharmaceutical interventions have been approved for these psychiatric cases.
Despite the increased focus on treatment resistance in behavioral health conditions, there is no universally accepted definition for services that can help these patients along their health trajectories.
Some definitions are general, simply stating that illnesses that do not respond to an adequate course of medical services are treatment-resistant.
By one definition, depression, anxiety disorders and schizophrenia are considered treatment-resistant when a patient has an inadequate response to at least two different methods of treatment, at the appropriate dose and lasting for at least six weeks.
Alternative treatments, like electroconvulsive therapy or the medication clozapine, may be considered for patients who have tried multiple medications and failed to improve. Some patients’ conditions still show little to no improvement after these interventions.
“Those patients where conventional, evidence-based treatments have not been successful … is where I think the concept of palliative psychiatry should kick in,” Kumar said.
Palliative psychiatry strategies already at work
American medicine acknowledges the intersection of palliative care and psychiatry. Many palliative care patients are diagnosed with anxiety, depression and other behavioral health conditions. Furthermore, a growing base of seriously ill patients also have more severe mental illnesses (SMIs), such as bipolar disorder and schizophrenia, among other conditions.
But the role of palliative care in psychiatry is rarely endorsed. Despite this, behavioral health providers do employ palliative techniques in care.
Hybrid mental health startup Author Health sometimes encounters patients who do not wish to continue a course of treatment or seek to improve their condition.
“Allowing the patient and their caregivers to lead care is a central tenet of behavioral health care,” Dr. Katherine Hobbs, psychiatrist and CEO of Author Health, told BHB. “But that is probably practiced with variation.”
Boston-based Author Health provides virtual and in-person mental health services to seniors with Medicare Advantage plans, focusing on those with SMIs and substance use disorders (SUDs). The provider raised $115 million in seed funding in June 2023.
The behavioral health system lacks flexibility to accommodate patients who choose to cease treatment, Hobbs said. Patients who are ambivalent, unwilling or can’t continue their course of treatment may be unable to stay engaged in care.
Patients sometimes change their minds about how they want to receive care, and the behavioral health industry can struggle to maintain a relationship with these patients. People may, therefore, be disengaged from the system if they decide to continue treatment.
“If we were able to engage people more in that period of ambivalence, we could meet people better where they are but also help more people to get to a place where they are ready for care,” Hobbs said.
Other patients may be unable to continue treatment because of physical side effects that can arise from psychiatric medications. Research shows that people with SMIs, including bipolar disorder, schizophrenia and severe depression, have nearly twice the risk of developing cardiovascular diseases, metabolic syndromes and chronic kidney disease compared to others.
Benefits of a palliative psychiatry framework
Renegotiating the connotations of the term “palliative psychiatry” and integrating the framework into the U.S. health system could offer patients with treatment-resistant and treatment-adverse behavioral health conditions more comprehensive treatment options.
The primary benefit of integrating palliative and behavioral care is providing improved goal-concordant care, according to Dr. Priya Krishnasamy, associate professor in the department of geriatrics, palliative medicine and psychiatry at the Icahn School of Medicine at Mount Sinai Health System
“It gives us a better chance of aligning medical care with what a patient would want or what would benefit their quality of life,” Krishnasamy told BHB.
Patients with serious treatment-resistant behavioral health conditions require close, longitudinal follow-up and integration between medical and psychiatric care teams, according to Krishnasamy.
Palliative psychiatry could also provide an avenue for more objective language for clinicians to use during patient and family interactions. While new treatments and medications may be developed, using the term palliative can prevent “false hope” among psychiatric patients with treatment-resistant conditions, according to Kumar.
“[Our system needs to be built around] the needs and the desires of the patient and their family,” Hobbs said. “If we were able to do that, then we could embrace this concept as well.”
Access as a barrier to adoption
Prior to the widespread adoption of a palliative psychiatric approach in the United States, addressing the issue of limited access to behavioral health services may be a necessary priority.
“My concern is that most treatment-resistant behavioral health conditions in our country are really due to the person didn’t get the right treatment at the right time,” Hobbs said.
Problems plaguing the behavioral health industry at large, like workforce shortages, can keep patients from receiving routine care. For those who have tried previous courses of treatment, lack of specialty care, such as electroconvulsive therapy, may not be available in their area.
“Very rarely, if ever, have I met patients in a regular community setting where they have tried every single treatment that we have and have failed,” Hobbs said.
Treatment-resistant and treatment-adverse patients are more likely to be found in specialized academic settings rather than regular community settings, Hobbs said
There are more frequent cases in which patients choose to discontinue treatment despite other options being available. Stopping treatment is always an option for these patients, Hobbs said.
In these cases, clinicians are required to complete due diligence and ensure that the decision to discontinue care is not made as a result of the behavioral health condition itself.
“Imagine a person with severe depression who has hopelessness and low energy. They may feel like it’s useless to continue to try treatment,” Hobbs said. “You would want to make sure that the person wasn’t just reacting from a place of the mental health condition itself.”
Palliative services, like advance care planning, can be helpful for these types of patients. Palliative providers can guide conversations with patients and other decision-makers to assess their goals of care as their illnesses progress. Patients can outline their wishes in advance directives that can determine their course of care when they can no longer advocate for themselves.
For instance, a patient with schizophrenia can establish an advanced care plan while their condition is stable and they are not in a state of active psychosis to document their wishes for future treatments.
Advance care plans can include patients’ wishes to forgo medication, facility-based care or hospitalization, facilitating a more community-based palliative approach that aligns with their goals of care.
“Part of that is just really understanding what an acceptable quality of life is,” Krishnasamy said. “Patients with serious mental illness can absolutely have no quality of life.”
The future of palliative psychiatry
While some palliative approaches are already used in behavioral health care, clinicians often do not receive exposure to palliative medicine during their training. While most patients do respond to treatment, the subgroup of patients who do not should be acknowledged, according to Kumar.
“You don’t need to use the word [with] patients if you think that’ll make them uncomfortable,” Kumar said. “But [we should] teach doctors to be more comfortable with the concept. ‘You have not responded to treatments. Let’s now talk about helping you cope long term.’”
Integrating palliative psychiatry into American behavioral health care would not be a new approach, Kumar said, but rather a mindset shift regarding how clinicians conceptualize treatment failures.
If palliative psychiatry services were to take hold in the United States, it would require open-minded clinicians who are focused on meeting the goals of the patient and their support system, Hobbs indicated.
In the future, palliative psychiatry may look like an interdisciplinary team of clinicians who could collaborate on a range of patients with varying mental health conditions, according to Dr. Vance Brown, chief medical officer of Androscoggin Home Healthcare + Hospice.
The Lewiston, Maine-based nonprofit organization offers home health, hospice, palliative care and behavioral health services.
“[There’s] a strong need for folks with behavioral health expertise, but [also] from a clinical perspective we desperately need folks who sit right at that interface,” Brown said. “We have so many folks who have serious and persistent mental illnesses with far shorter lifespans [and] usually disproportionate burdens of chronic illness, which leads to palliative and hospice trajectories and challenges associated with their care through this whole trajectory.”
In actuality, discomfort and lack of familiarity around palliative care may be a barrier to wider, explicit adoption. Even if misconceptions remain unaddressed, clinicians should focus on becoming comfortable with the clinical framework of palliative psychiatry and acknowledging the subgroup of patients who do not respond to evidence-based treatments, Kumar said.
The best model for coordinating palliative and behavioral health care involves integrating a palliative care clinician into a behavioral health clinic, according to Krishnasamy.
“[For] so many patients with a mental illness, their clinicians within the mental health clinics might know them best,” she said.
Holly Vossel, reporter at Behavioral Health Business sister publication Palliative Care News, contributed to this reporting. Click here to read Palliative Care News stories and subscribe.
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