When I was 26, I went home to visit my father before embarking on a summer study program abroad. After years of cardiac problems, he had been diagnosed with prostate cancer that had metastasized to his spine—I knew that this might be our last in-person conversation.
He had lost weight and energy but still walked a bit. We sat in the backyard under a large oak. My father was not an expressive man, but I managed to ask him how he felt about dying. He replied, “I'm not afraid of death. I just don't want to die in a hospital.” I promised my father that I would do everything in my power to make sure that he died at home.
That promise was a difficult one to fulfill. First, we never shared our conversation with the rest of the family. And second, we never talked about what else he wanted in terms of treatment options. Did he want to be resuscitated if his heart stopped, as it had on two occasions prior to the cancer diagnosis? Should pain management be a priority? Did he want aggressive chemotherapy and radiation?
Six weeks later, I received a telegram saying that radiation treatments to his spine had left my father paralyzed below mid-thorax, without bowel and bladder control. My family felt unable to continue to care for him and wanted to place him in a nursing home. I immediately left the study program and returned home to care for him.
It was a challenging month before he died, at home as I'd promised him. And it was particularly difficult because he hadn't explicitly discussed his preferences beyond his wish to die at home.
That was almost 40 years ago, and I'd like to think that we've come a long way in helping people to have conversations about care in the face of a terminal illness. Sources vary, but most put the number of U.S. adults with advance directives or living wills at somewhere between just 29% and 40%, with slightly higher rates among the seriously ill. Although 70% to 80% of Americans say they want to die at home, only 25% actually die there.
A 2011 study in JAMA by Nicholas and colleagues found that advance directives resulted in a lower likelihood of dying in the hospital, a greater likelihood of using hospice services, and reduced costs. Americans may hate to talk about death, but advance care planning is about how we live before we die.
My graduate nursing students increasingly bring up what happens when advance directives are not in place: painful deaths, often in a chaotic environment; family distress and conflict; conflict among staff. The classic SUPPORT study from the 1990s found that relatively few patients had advance directives, while having one didn't guarantee that the patient's wishes would be respected. Physicians rarely discussed advance directives with patients. A decade later, Collins and colleagues reported in the American Journal of Hospice and Palliative Medicine that “advance directives are still rarely available and, even when available, do little to direct medical decision-making.”
My students—all practicing nurses—regularly attest to the pressure put on patients and families to accept unwanted aggressive treatment. These nurses, unsettled by the lack of honest conversations about choices in advanced illness, experience moral distress at their perceived helplessness to change this situation.
April 16 is the sixth annual National Healthcare Decisions Day “to inspire, educate and empower the public and providers about the importance of advance care planning.” I encourage you to go to www.nhdd.org and learn how you can help this movement. For example, you could organize a “health care decision day” in your institution.
But it's not just about filling out a form. It's about the conversations that we have with our families and our health care providers. Do you have an advance directive? When was the last time you had a conversation with your family members about your preferences—and theirs—for advanced illness and end-of-life care? Let's be models of the change we want to see.