Are hospices serious about depression?
Depression is not merely sadness
Elisabeth Kubler-Ross may have done dying patients an inadvertent disservice back in 1969 when she labeled one of the five stages of dying as depression.1 "By talking about depression as a stage of dying, she made it normative for dying patients. Therefore, people don’t necessarily define it in the terminally ill as a problem," observes Elliott Rosen, EdD, psychologist consultant to Phelps Memorial Hospice in North Tarrytown, NY.
Is depression the norm?
Certainly patients and families confronting an imminent death might be expected to feel powerful emotions such as sadness, angst, or spiritual pain. But depression is a clinical condition which can be assessed and treated. By neglecting to do so, some hospices may fail to take advantage of one of biggest opportunities to impact positively on their patients’ comfort and quality of life.
"Depressing is an adjective used by the general public to describe sadness. When psychiatrists talk about a major depressive episode, they refer to a clinical syndrome with a whole range of manifestations, including sleep and appetite disturbance, pain, decreased energy, and difficulty in concentrating," explains William Breitbart, MD, chief of the psychiatry service at Memorial Sloan-Kettering Cancer Center in New York City and a Project on Death in America (PDIA) faculty scholar. Unfortunately, these often are also symptoms of advanced disease, thus complicating the assessment of depression, Breitbart observes. (See related story, p. 105.)
It is well documented that primary care physicians frequently fail to recognize depression in their patients. Estimated incidence of depression in the terminally ill may run from 25% to 75%. Research also shows that patients who are depressed are often the same ones who voice a sustained, intense desire for physician-assisted suicide.
Harvey Max Chochinov, MD, FRCPC, a researcher at the University of Manitoba in Winnipeg, Canada, has demonstrated that the commonly used depression screening measures are less effective screens with dying patients than simply asking them "Are you depressed?"
"Unfortunately, major depression often goes unnoticed in the dying. Our reluctance to talk about death has given rise to the notion that anyone who is dying is bound to be depressed," says Kathleen Foley, MD, co-chief of pain and palliative care at Memorial Sloan-Kettering and director of PDIA.
"Another misconception is that treating depression in this stage isn’t worthwhile," Breitbart adds. "In fact, treatment can have effects on such symptoms as feelings of hopelessness, worthlessness, guilt, and suicidal ideation."
Breitbart distinguishes hopelessness from a realistic understanding of one’s dire prospects. "Hopelessness is more pervasive, affecting the conditions of patients’ lives such that they cannot imagine experiencing anything pleasant or comforting whatsoever," he says. "[Patients] could have a clinical syndrome of depression, and it could interfere with the existential confrontation, communicating with family, or any work they might want to do at the end of life. I make the case that treating depression does not impede or negate dealing with the existential struggles."
"In my experience as a psychiatric consultant to Boston hospices, there is a major gap in hospice knowledge and practice about depression. It may be the most prevalent untreated or undertreated symptom in hospice," says Susan Block, MD, director of the PDIA faculty scholar program and assistant professor of medicine and psychiatry at Harvard Medical School in Boston. Rates of antidepressant medication prescribing in hospice are very low, she says. "Treating depression is probably only secondary to treating pain in terms of the difference it can make in quality of life very quickly with simple interventions," she says.
"The hospice community has been fairly nihilistic when it comes to treating depression," viewing it as a normal manifestation of dying, feeling helpless to remedy it, attaching a stigma to psychiatry, and failing to routinely assess psychiatric symptoms. "Like pain, depression can be a total experience and just as overwhelming. The other important message is that we have wonderful treatments, even for those who are terminally ill," Block says.
While traditional tricyclic antidepressants sometimes take several weeks to have much effect, outside the available time frame of many hospice patients, psycho-stimulants like ritalin can work overnight, with relatively few side effects. "These drugs have benefits in three areas: their antidepressant effects, potentiation of narcotic pain medications, and countering narcotic-induced sedation," she adds.
What can hospices do?
"The first issue is education," for hospices to better inform themselves about depression and its treatment, Block says. "Optimally, every hospice would have a psychiatric consultant, whose main job is to educate staff, as well as seeing patients who need to be seen and consulting with the medical director and social workers on difficult cases," she says.
Unfortunately, few psychiatrists have expertise in treating patients with serious illness, so it may be difficult to find an appropriate candidate. "You can’t just use a general psychiatrist, but in situations where psychiatric consultation is available, it brings a major contribution to hospice," she adds.
"I think medical directors have to become involved and see this as a part of their responsibility," Block says. "Good social workers are often very good at diagnosing certain kinds of depression, and nurses need good training, too, at least in identifying the issues that raise red flags."
"Unfortunately, there are not a lot of people who do the kind of thing I do with terminally ill patients [as a consultant to a hospice team]. But there is literature out there. Find some of that literature, and give it to your medical director," Rosen concludes.
Reference
1. Kubler-Ross E. On Death and Dying. New York City: Macmillan; 1969.
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