Many of you know that eight months ago I was diagnosed with Stage IV inflammatory breast cancer, which has spread to my spine. My incurable diagnosis means that I live with a chronic disease, just like millions of older adults. Life continues to be fairly routine with work, play, friends, and family. One of my routines occurs on the first Monday of each month, when I visit the Maimonides Cancer Center for an infusion of drugs designed to slow the cancer’s impact on my bones. The center is cheerful. The staff greets me by name and hands me a buzzer that vibrates when I am next, the same buzzer you get at your local Olive Garden. Each month I see many of the same people receiving their treatments. I have already figured out who likes Dr. Phil, the local news channel, or a good book as they dutifully absorb their chemotherapy regimen.
One woman in particular caught my eye, perhaps because she is elderly and frail—just the kind of person that the Hartford Foundation is dedicated to helping. She appears to be in her eighties. Standing less than five feet tall, she walks in slowly and carefully, a pink crocheted cap on her head, accompanied each time by her son. Over the course of her infusion, her color fades. She leaves more frail than she came in. Each visit, she is visibly worse.
Of course I know that chemotherapy almost always causes short-term debilitation. But looking at this older woman, I can’t help but wonder. Did her clinicians talk to her and her son about her prognosis and the relative benefit of the chemotherapy? Did they understand the risks and benefits of aggressive versus palliative treatment? Maybe they do understand, and the chemotherapy will cure the cancer after months of misery, making it all worthwhile. But maybe not.
I speculate about this woman because I know that too many health providers are uncomfortable talking to patients about death and dying. Of course it is human nature for physicians to want to avoid telling patients that the end is near. Unfortunately, they are no longer trained to use the word “terminal.” Instead, they use veiled language like “advanced illness.” Would you know that meant you had a life limiting, incurable disease? I am glad my oncologist was willing to be clear and honest with me. But even at Maimonides, I encountered health professionals who were uncomfortable with conversations that acknowledged mortality.
For example, one day I went to see a social worker at Maimonides to ask for help with my will. (Maimonides provides access to volunteer legal advice for its cancer center patients.) I told her I was seeking help in getting my affairs in order for my children, since I had terminal disease. She blanched.
“You shouldn’t speak that way,” she said. “There’s always hope.”
“I have stage 4 metastasized inflammatory breast cancer,” I said, puzzled. “Of course I am ever hopeful there might be a cure. But the reality is, I am terminally ill. I need to get my affairs in order.”
She became visibly upset. She was concerned that I was depressed, misinformed, and focusing on the negative. Later, she even spoke to my oncologist and suggested I needed to join a support group.
Maybe a support group would be helpful, but the social worker was missing the point. I am not misinformed. I am very well informed (which my oncologist told her, thankfully). There is a fine line between acceptance and giving up hope, and I believe I am on the right side of it. Perhaps the social worker was trained to interpret words like “terminal” and “dying” as red flags ripe for her intervention. Open and honest communication about a prognosis should not be a cause for alarm.
The social worker was trying to be helpful and did give me the information I sought. But I see this kind of response as a barrier. If health care professionals are uncomfortable talking about death and dying, or hearing their patients openly confront their illness, how can patients with serious health issues ever hope to get realistic information about their prognosis?
Many people interested in health care reform advocate for patient-centered care, the concept that patients should make decisions about their own treatment and care. But how can patients and their families make useful decisions without good information? (See this great blog from Jesse Gruman on this conundrum.) How can patients guide a team of health professionals if they aren’t well-informed?
When patients are not well-informed by the health care team about their illness they are unable to fully participate in patient-centered care. It is akin to asking a blind person to lead a team of seeing people through a minefield. Why do we keep patients blindfolded? Providers must be willing to address issues of death and dying. To physicians, nurses, social workers, and other members of the health care team, I call upon you to help your patients face mortality with eyes wide open. Only then can they can help you understand their goals and the kind of care they want to receive.
Amy Berman, BS, RN, is Program Officer of the John A. Hartford Foundation. She writes at healthAGEnda, where this post first appeared.