Suppose you are a mental health professional and you meet with a new client who describes the following symptoms: "I don't sleep well and I don't have much of an appetite. I feel sad most of the time and once a day I find myself crying. Basically it's all I can do every morning to get myself out of bed and start the day."
What would be your "diagnosis" and "treatment plan" for the above? In reality, both would depend in large part on the context in which these symptoms appeared. If the person reporting them told you that a child, spouse or parent had died of cancer a few weeks earlier, chances are you would conclude that this person was experiencing grief. On the other hand, if these symptoms were something that this client had experienced several times before, and for no apparent reason, you might suspect she was suffering from a depressive disorder. In either case, your ideas about the most appropriate "treatment" would almost certainly be very different.
In an op-ed article in the August 15th The New York Times Dr. Allen Francis, a psychiatrist, makes this very point. He points to a pending decision by the American Psychiatric Association to classify the above symptoms as indicative of a "major depressive disorder," which opens the door to "diagnosing" normal grief as a serious depression, and therefore treating it as such.
In defense of this decision some have argued that bereavement and depression have much in common, therefore they should be treated in the same way (including, presumably, using medication). Others argue that some grief-struck individuals find themselves going over the edge into total dysfunction or suicidality. This may be the case, but as Dr. Francis correctly points out these individuals have always been the exceptions, not the rule. Given the way our culture has responded to problems such as anxiety and difficulty sleeping, it is highly likely that we stand poised to try to eradicate grief on a mass level through medication.
In her book, "The Year of Magical Thinking," Joan Didion chronicles the many "symptoms" an individual may experience when they are grieving the loss of a loved one as she records the year following the death of her husband and closest confidant, the writer John Gregory Dunne. To be sure it is a raw, unvarnished and wrenching account. At the same time, it is clearly bereavement that she is describing. We must respect it for what it is and allow individuals the dignity of grief.
My colleague Dr. Barbara Okun and I have coined the phrase "the new grief" to refer to the process that families experience after a loved one has been diagnosed with a terminal illness. By this we do not mean to imply that grief has ceased to exist, or that bereavement has fundamentally changed. On the contrary, as long as we as humans are able to form interpersonal attachments we will grieve those attachments when they are lost. Our attachments enrich our lives, and in a sense they define who we are. When we lose someone we love, we lose a part of ourselves.
What we have noted from the families we have interviewed is that some family members begin to experience some of the symptoms noted above before their loved one dies. This appears to happen in what we call the upheaval stage of family grief. It seems to be the result of the stress that a prolonged terminal illness creates not only on the terminally ill patient, but on his or her family members as well. The protracted process of dying that is the result of modern medicine's ability to arrest terminal illness and stave off death creates unprecedented stresses in families seeking to cope with this protracted crisis. One concern we have is that these "symptoms" may also be erroneously "diagnosed" as a major depression, and therefore treated out of the context in which they occur.
In a study just reported in the New England Journal of Medicine, a group of patients who were diagnosed with an aggressive form of lung cancer were given palliative care in addition to oncological care as soon as the diagnosis was made. In contrast, another group of patients with the identical diagnosis were offered only oncological care. The first group reported feeling less depressed, had less pain and discomfort, and in general led happier lives as measured on scales for pain, nausea, mobility and worry. In addition, this group lived longer. Part of this palliative care was regular counseling: the opportunity to discuss treatment options, vent thoughts and feelings about terminal illness and consider various end-of-life options.
What we would propose, based on the above findings and our interviews with families, is that the definition of palliative care be expanded to include not only pain management and end of life discussions with the terminally ill, but family counseling as well. Joan Didion, as a writer, appears to have found writing about her ordeal helpful. "I found it amazingly easy to write," she said in an interview about the book. "It was like sitting down and crying."
In our opinion the greatest threat to the well-being of both terminally ill patients and the families that love them is the silence that surrounds the entire process. So many grieving individuals have told us not only how stressful the process of coping with terminal illness is, but how the inability to communicate honestly about it and find meaningful sources of support exacerbates that stress. It is only by expanding our definition of palliative care and extending it to include both the patient and the family that we can best understand and treat the symptoms of what we choose to call the new grief.