The Canadian surgeon and urologist Balfour Mount is considered the father of palliative care in North America. He was inspired and mentored by Cicely Saunders, a British nurse and social worker. Before she became a physician, Saunders developed the first modern hospice, St Christopher’s in London in 1967. Mount adapted and transplanted approaches to the care of the terminally ill he had learned at St Christopher’s to the Royal Victoria Hospital in Montreal.
Palliative care is based on Saunders’ concept of “total pain,” which says that while suffering may be based on the underlying disease, the pain associated with it can have psychosocial, existential, and spiritual dimensions. The main objective of palliative care is to maximize the patient’s comfort and quality of life by effectively controlling symptoms, especially pain, while providing psychological and spiritual support. Palliative care is gaining traction in the United States and is used in the care of patients with cancer, stroke, kidney failure, and other terminal medical conditions.
While it is increasingly accepted when it comes to physical illness, determining where it fits in clinical psychiatry is far more complicated. Now that Canada plans to implement a program of medical aid in dying for certain people with mental illness (though it has been delayed repeatedly), discussing palliative psychiatry is all the more critical.
Psychiatry deals primarily with behavioral states including depression, bipolar disorder, disorders of the psychosis/schizophrenia spectrum, eating disorders, and addiction. Unlike, say, oncology, the mental health field rests on an underlying assumption that substantial symptom remission, if not cure, is possible with most serious mental disorders — it is only a matter of finding the right combination of medications and the appropriate psychotherapist.
But that assumption is erroneous and does not apply to all patients with serious mental illness. Some will not find a cure or long-term remission. For them, the right thing to do is offer an honest discussion of their clinical situation and a therapeutic approach that helps them live with their condition and lead productive lives. Making that happen requires frank conversations, including using the term palliative psychiatry.
There are, of course, important differences between physical and mental disorders. Nevertheless, as a psychiatrist, I have to acknowledge that there are principles and concepts from palliative general medicine that are relevant and applicable in the sphere of mental disorders. Many mental disorders are chronic, long-standing, and characterized by remissions and relapses — periods when patients do well and function with few symptoms interspersed with periods when the disease appears to return to its original, full-blown form.
Neuropsychopharmacology — medication treatment for mental illness — has been transformational in the lives of millions of individuals afflicted with major mental disorders. Most patients receive substantial relief and symptom remission from evidence-based treatments. But others fail to respond to multiple trials with evidence-based interventions. These patients are characterized as having serious and persistent mental illness. Most notably, this includes treatment-resistant depression, cases of schizophrenia that do not respond to antipsychotic treatment including Clozaril (the medication that is frequently considered the “last hope” in the treatment of psychosis), post-traumatic stress disorder, and anorexia nervosa.
In these targeted situations, a palliative approach, similar to the one utilized in the case of medical disorders, can improve a person’s quality of life, reducing emotional pain and helping the patient adjust to life given the limitations imposed by mental illness. In the case of chronic/long-term psychosis, for example, programs that provide rehabilitation for the chronically mentally ill like Assertive Community Training (ACT) implement palliative care-based approaches while avoiding the term. This includes teaching patients to live with their symptoms and improve the quality of their lives while reducing the emphasis on symptom control with medications.
Palliative psychiatry involves an interdisciplinary team working collaboratively with patients to accept the incurable nature of their illness given currently available treatments; acknowledge its distressing symptoms; and offer a support system that will help patients and families cope with the consequences of the illness and live active, productive lives. More broadly, it requires taking mental illness outside the domain of intense and sometimes aggressive medical and psychological interventions into a more realistic, quality of life space.
“The futility of treatment” is a concept that licensed clinical social worker Amy Lopez and colleagues introduced into the psychiatric lexicon in the context of anorexia nervosa, a debilitating psychiatric disorder. The term is not easily embraced in the mental health world, where hope and optimism are often embedded into the clinical experience, sometimes because of therapeutic confidence, bordering on hubris, that complicates the clinical picture. Clinicians can be reluctant to acknowledge to patients and their families that there is nothing more they can offer in terms of evidence-based treatments. It is a threshold that most clinicians are reluctant to cross even when the clinical state demands a more realistic discussion of the overall picture. The optimism-realism divide is difficult to navigate in psychiatry.
Palliative psychiatry is more precisely defined by its major goals and objectives and not exclusively by treatment resistance. As a geriatric psychiatrist, I’m more familiar and comfortable with both the concept and its application than colleagues involved in the care of younger adults with mental disorders. The term frequently conjures up images of end-of-life situations that appear hopeless. That may be why, for instance, many programs embrace the concept without the term. But mainstreaming the term could be helpful both for practitioners and for patients. Making it acceptable to talk about a realistic life, one that does not involve hoping for a remission that may never occur, is both respectful of patients and achievable.
Despite the unease, palliative psychiatry is a realistic, compassionate approach for a small subgroup of patients who have not responded to multiple trials of evidence-based treatment. It does not preclude the concurrent use of new evidence-based treatments. It does, however, acknowledge the limits of evidence-based pharmacological and psychotherapeutic treatments and shifts the emphasis to a more broad-based approach to illness, treatment, and quality of life.
Canada is on the threshold of passing a law that would enable patients with mental illness to receive medication assistance in death – MAiD – presumably from a physician or qualified clinician. Palliative psychiatry offers a compassionate and appropriate approach for people who may feel hopeless. Validating them and helping them find a way to live is far better than offering medical assistance in death, as Canada plans to do.
Anand Kumar, M.D., MHA, is a professor and head of the department of psychiatry at the University of Illinois in Chicago; past president, American Association for Geriatric Psychiatry; and director of the University of Illinois Center on Depression and Resilience.