Coping with Terminal Illness: Getting An Honest Prognosis
Is your doctor painting an overly rosy picture? Many do.
Posted February 17, 2012
After we admitted my father to the hospital for the last time, and after we were told that there was nothing that could be done to stop the buildup of fluid in his lungs, the doctor told me that he had four to six weeks to live. I'd been the primary caretaker for my father for the past year, and when I looked at him lying there in that bed I said to the doctor, "Four to six weeks? I don't think he has four to six days." The doctor then stepped up to me and took my hand. "Thank you for making my job easier," he said.
The above encounter was related to me by a colleague shortly after her father passed away, barely a day after this interaction. It may simply reflect a human foible that is shared by the physicians who care for us. "It's a human impulse to not want to be the bearer of bad news," says Arthur Caplan, a bioethicist at the University of Pennsylvania.
This tendency for physicians to soft-pedal bad news appears to be common. According to a survey published in the journal Health Affairs 45 percent of the 1,900 doctors surveyed stated that they had given patients rosier prognoses than were warranted by reality in the past year. On the one hand, we may be able to sympathize with these doctors' reluctance to be the bearers of bad news, including the reality of imminent death. On the other hand, there may be some real negative consequences that result from their reticence. Consider the following:
End of Life Discussions
A survey of 2,155 patients with stage IV (end-stage) lung cancer published in the journal Annals of Internal Medicine asked about doctor-patient end-of-life discussions. Such discussions should cover issues such as designating medical proxies, recommending that wills, trusts, and so on be executed, discussion of the use of heroic measures at end of life, the patient's preference for being in a hospital, at home or in hospice, and so on.
End-of-life discussions are vital. They allow terminally ill patients and their loved ones to think through issues like the above and make decisions. In a sense they give patients and families a measure of control in an otherwise out-of-control situation. The guidelines cited in this study state that these discussions should take place immediately with any patients whose life expectancy is one year or less. Yet in this extensive survey, 959 patients -- or 44 percent -- had end-of-life discussions within about one month of their death. Better late than never? Perhaps. But having more, not less, time to think through these issues and make important decisions would seem desirable. Moreover, cancer patients in their final months or weeks of life are often quite debilitated as a result of their illness, side effects of treatment and also of any medications that may be ordered as part of palliative care.
Establishing Expectations for Doctor-Patient and Doctor-Family Communication
As desirable as it might be, it is probably not reasonable to expect physicians to overcome their reticence any time soon. My colleague, Dr. Barbara Okun, discussed this issue with a group of medical residents. Here is what they had to say:
I talked about it with my medical residents and we decided the problem is the "system" focus on content, not process and little discussion much less training for understanding the emotional aspects of disease, the interpersonal skills to talk about end of life issues as well as the culturally supported avoidance.
Perhaps these medical residents have a point. Maybe having a policy that end-of-life discussions should take place is not enough. Maybe medical schools need to incorporate some actual training in how to do so, as Dr. Okun does with her Harvard residents.
In the meantime, here are some suggestions for terminally ill patients and their families:
- Ask for an honest prognosis. Tell your doctor that you are ready and willing to hear the unvarnished truth. Include one or more family members in that discussion if possible.
- Ask for a second opinion regarding your prognosis. Don't worry about hurting your doctor's feelings. It's your struggle and you are entitled to have the best information available so that you can make decisions about the future.
- Initiate a family discussion about end-of-life planning sooner rather than later. Waiting until the end is near may mean having to make important decisions with a much-weakened body and a less than lucid mind.
For more information visit www.newgrief.com
Copyright 2012 by Joe Nowinski, Ph.D.