A Graveside Promise to Improve Care for the Dying
Christopher, Myra J., Aging Today
Ihave spent most of my adult life working to improve care for the seriously ill and dying. My reason for doing so is personal; it's about a promise I made at my mother's graveside nearly 35 years ago.
After a two-year battle with cancer, my mother died in our home at age 53. Like most Americans, when Mom's doctor said, "There's nothing more we can do," my mom replied, "Then I want to go home."
At that time, hospice was just emerging in the United States, and didn't exist in Kansas City. We were on our own. But our last months together were some of the most meaningful in my family's history. Mom told stories and made a quilt that has become part of family lore. Our daughters, then 6 and 10, engaged in her care. My husband learned to cook, and he dried my tears as I struggled with anticipatory grief.
That graveside promise I made was to spend my life making it easier for families to have the opportunity we had. I never imagined that I would become an early, persistent advocate for advance care planning, hospice, palliative care and better pain management.
A Dearth of Patient-Centered Care
Today we have a constitutionally affirmed right to make advance directives (because of the 1990 Cruzan v. Missouri case affirming the right of all adults to choose and refuse any medical or surgical treatment, to make advance directives and to name a surrogate to act on our behalf in the event of incapacity). There are now nearly 3,500 hospices in the United States, most large hospitals have palliative care consultation teams and the Institute of Medicine just published a report on relieving chronic pain (Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research; www.iom.edu).
Still, most Americans do not get quality care at the end of life that is consistent with their goals and values. Often, patients spend their last days isolated in intensive care units, hooked up to machines, in pain and receiving care they don't want that will not benefit them. Why is this?
The answers are many: Doctors have been trained to "do everything!" We are a death-denying culture: we want everything. Our payment systems encourage this behavior. Yet there is a growing body of data that says more care is not always better care. Some of our most innovative healthcare providers are proving that palliative care prolongs life and reduces suffering, and new models of care are emerging for those with advanced illness.
But clinicians and researchers can't make the necessary changes alone. Patients and families must become better informed and better prepared to partner with healthcare professionals. They must make their goals and values known, ask questions about prognosis and treatment options (including palliative care and hospice) and use ethics committees when there is disagreement about doing the "right thing."
The Right Way to Plan
An important component of improving care is advance care planning. When people hear this term, most think "living will." Living wills, developed in the late 1960s, state, "in the event I am terminally ill, I do not want life-sustaining treatment. …