Is There a Role for Palliative Care of Severe and Chronic Mental Disorders?

Punko acknowledged that palliative psychiatry—as distinct from palliative medical care for psychiatric patients with severe and life-threatening medical illness (see “Palliative Care for Patients With SMI and Life-Threatening Medical Illness Inadequate,” p. 10)—is a concept in search of a clinical model. Its utility and ethical grounding are still debated.

In a 2016 article in Lancet Psychiatry, Manuel Trachsel, M.D., of the University of Zurich, and colleagues, building on the 2014 World Health Organization (WHO) definition of palliative medical care, wrote that “palliative care focuses on harm reduction and on avoidance of burdensome psychiatric interventions with questionable impact.”

During the ACLP symposium, Punko was careful to emphasize what palliative care is not. It is not abandonment of the patient or of his or her care, or a justification for discontinuing medical care or encouraging or hastening the onset of death. Nor should it be conflated with medical assistance in dying, she said.

How, then, does palliative care differ from routine good clinical care? “There is a lot of overlap,” Punko said. “An argument could be made that basically everything we do in psychiatry is palliative in nature in that we are not getting to the underlying disease process and changing things on a biological and physiological level, but we are managing symptoms. Symptom management, patient-centered care, and quality of life should be just good care in general.”

In comments to Psychiatric News after the meeting, past APA President Paul Appelbaum, M.D., noting that the original WHO definition places palliation in the context of terminal conditions, questioned the value of using the term in psychiatry. “Much of what psychiatrists do could be construed as palliative care,” he said. “When we work with patients with chronic illnesses that are unlikely to go away permanently or even to fully remit, such as chronic schizophrenia, we aim at reducing their symptoms and improving their quality of life.

“But as a field, we have always considered this to be ‘treatment,’ not ‘palliative care,’” Appelbaum said. “And given the association of palliative care with end-of-life situations, I see no value at all in adopting that term in psychiatry.”

The question of whether there is a role for palliation in psychiatric care is sharpened in the case of severe and persistent anorexia nervosa—as highlighted in a January 2024 article in The New York Times that profiled a 43-year-old woman receiving palliative treatment after decades of standard treatment for anorexia. Nearly 15 years ago, one of her doctors, Joel Yager, M.D., co-authored a 2010 article in the International Journal of Eating Disorders that said: “For poor prognosis patients who are unresponsive to competent treatment, continue to decline physiologically and psychologically, and appear to face an inexorably terminal course, palliative care and hospice may be a humane alternative.”

Jennifer Guadiana, M.D., first proposed the term “terminal anorexia” in a 2022 article. It was widely disavowed, and Guadiana herself has retracted use of the term. She and her co-author later also retracted a defense of the term in 2023 with a note: “The authors have retracted this article following discussions with multiple stakeholders. The authors offer their deepest apologies for the distress and the unintended negative impact of this piece.”

“Treatment of patients with severe disorders can be difficult and, given the current state of our knowledge, will not always be successful,” Appelbaum said. “But we can always try to improve their lives and provide reasons for hope. Suggesting to patients that there is no hope and to psychiatrists that abandoning some patients is justified, which are the inevitable consequences of attaching a ‘terminal’ label to them, represents an abnegation of the psychiatrist’s role.”

But, speaking at ACLP, Punko pointed to “palliative models of care for later stages of mental disorder” outlined in a 2012 paper by Michael Berk, M.D., and colleagues. She noted that these models involved strategies that could be applied to patients with chronic, treatment-resistant anorexia, including setting attainable goals, reducing side effects, limited symptom control, targeting identified psychological and social problems, and attempting to gain the best quality of life for patients and their families.

Punko said in the case of chronic anorexia, palliative care might include symptom relief rather than weight restoration—reducing anxiety, body dysmorphia, and emotional distress—improving quality of life, and addressing comorbidities such as depression, anxiety, and social isolation. “The integration of palliative psychiatry into the treatment of chronic anorexia requires nuanced ethical consideration but holds potential to alleviate long-term suffering and improve patient dignity,” she said.

Still, Punko acknowledged the concern that palliative psychiatry could be inappropriately used to justify non-treatment or abandonment of difficult but vulnerable patients. “It is not uncommon to encounter patients who are very challenging to treat,” she said. “Given a palliative approach, clinicians might give up too early.”

Moreover, she noted that there exist no professional guidelines for palliative psychiatric care and no staging protocols. For example, when would a patient quality for palliative care? Nor is there current research on palliative care in the context of psychiatric illness.

Most important, clinicians need to hear from patients. “There is an urgent need to elicit input directly from patients, so that their perspectives are represented in this discussion,” Punko said. ■