"She's dying. Who wouldn't be depressed?" Reactions such as this are common when depression is encountered in the terminally ill. Depression at the end of life is estimated to occur in between 25% to 75% of cases; not rare, but also not inevitable. Even so, it is underrecognized by clinicians who may think that depression is part of normal dying. It is important to diagnosis depression when it exists because depression is usually treatable.2
Diagnosing depression in dying patients can be tricky. The signs and symptoms clinicians have learned to associate with depression are unreliable in the dying. Vegetative signs and symptoms, such as anorexia, anhedonia, social withdrawal, and weight loss, may represent depression but may also occur in patients with pain, in grieving patients, and even in the "normally dying." Frequently, depression, grief, pain, and "normal dying" overlap.3 The problem facing the clinician is not so much differential diagnosis in the traditional sense as it is to understand the relative contribution of various factors, such as depression, grief, and pain, to the patient's distress.
Standard instruments used to diagnose depression, such as the Geriatric Depression Scale (GDS), may be unreliable in dying patients because these instruments have not been rigorously tested in this population. The GDS was developed for geriatric patients in recognition of the fact that the functional measures of standard scales were found to be unhelpful in geriatric patients, who frequently have functional impairments that result from medical illness.4 However, the GDS was not developed with dying in mind. GDS items such as, "I have crying spells" or "I feel hopeful about the future" may be interpreted very differently by dying patients. Some dying patients who score as depressed on the GDS may not actually be depressed. Tears may represent normal, healthy grief as well as depression. Concern about the future is fairly common among dying patients. We will one day have a valid instrument for discerning depression in dying patients. Until then, some suggested questions for evaluating depression at the end of life are:
My impression is that if patients say they are depressed in response to any of these or similar questions, they probably are depressed, as Chochinov and colleagues found in one study.5 That is, these questions probably have good specificity, although they may lack sensitivity. I have certainly encountered a number of patients who seem unable to identify depression in themselves: "I don't know doctor, I just feel terrible all over ..." My guess is that for these patients, a more structured instrument may be helpful in identifying clinical depression.
I will not try to pretend that I understand why people become depressed at the end of life or to what extent depression represents a biochemical imbalance. Certain risk factors for depression are known: a prior history of depression, poorly controlled pain, multiple losses, and certain disease processes such as hypothyroidism, pancreatic cancer, and stroke, among others.6 Even though a prior history of depression is a rather obvious risk factor for depression, it is unclear to me that this necessarily means that the severity of depression will be worse for such patients at the end of life. I have met a number of patients with prior histories of depression who have learned to monitor their symptoms and to cope with depression when it occurs. Such patients may do quite well. In contrast, patients with no prior history of depression may be overwhelmed by new-onset depression, lack the coping skills for it, and experience more severe symptomatology. This would be an interesting research topic.
Whatever the cause, it is important not to view depression at the end of life simply as an unfortunate and random event, external to the person, to be solved simply with medication. Depression is usually heavily invested with meaning. In dying, unresolved issues commonly resurface. Coping strategies that might have served well in the past may not serve so well when confronted with dying. Fear may pervade depression. Often such fears go unspoken. "I may have accepted that I'm dying, but I'm terrified of what will happen. Nobody has spoken to me about that...." The dying may also have fears for loved ones who will be left behind. "I just don't know how she is going to get by without me...." Identifying these concerns and addressing them (in addition to treating other unrelieved symptoms such as pain) can go far in resolving depression.
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Palliative Care Perspectives
James L. Hallenbeck, M.D.
Copyright © 2003 by Oxford University Press, Inc.
The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.