Kat Clark is the Program Officer at Health for America. She approaches the health system from an arts and communications background. Raised by a pastor and a family doctor, Kat grew up surrounded by conversations about caregiving.
In September, the Fellows and I attended a presentation led by Dr. Deborah Ellen Meyers, the Medical Director of Heart Failure Programs at Texas Heart Institute. She elaborated on the importance of introducing end-of-life conversations early, to enhance patients’ quality of life and make the process less frightening in the long-term.
“Palliative care is a philosophy, not a service,” she said. Working together with clergy, pharmacists, social workers, and psychologists, Dr. Meyers and her team address the spiritual, physical, and emotional concerns that arise during treatment of advanced illness.
Although “palliative care” does not necessarily refer to non-curative treatments, and though it can be made available to patients at any point during a serious disease, the palliative approach often goes hand-in-hand with hospice or end-of-life care. It focuses on a person’s quality of life — for example, prioritizing treatment of painful symptoms in addition to treatment of the disease itself. The goal is to give patients more control over their care, by improving their understanding of the process and empowering them to make their own decisions.
Dr. Meyers stated that, in a study conducted by the Duke University School of Medicine, more than 80 percent of patients said that they would like their doctors to speak with them about end-of-life care if they were seriously ill. In contrast, another study cited by Dr. Meyers found that only 7 percent of seriously ill patients discuss end-of-life with their doctors at all.
“Too many people die in a way they wouldn’t choose,” Dr. Meyers said. “The place to begin the conversation is the kitchen table, not the ICU.”
In closing, she shared a StoryCorps recording featuring Bishop Ricardo Ramirez. There in the large conference hall, we listened to him describe a conversation he had with his grandmother in 1981:
"I said, “You have been having a good time at funerals?”
“Oh, yes. We drink coffee, we tell stories, we meet old friends—it’s wonderful. We have a great time.”
I said, “Grandma, how can you have a good time when somebody dies?”
She looked at me, straight into my eyes. And she was serious, almost scolding me, and she said, “Son, haven’t you learned yet that it is a privilege to die.”
Later in the week, as I reflected on the palliative care options available to patients with “limited life spans,” it occurred to me that every patient — and every person — is born with a limited life span. So why, as Americans, do we insist on a “never say die” attitude that is clearly unrealistic and often counterproductive?
Speaking from a layperson’s perspective, I think death is seen as a failure. When given the option between a comfortable few weeks or a painful few months, many people do not view it as a choice at all — to them, more is always better, and any discussion around leaving this life is viewed as giving up.
Unlike many physicians, patients view "a little more time" as the ultimate goal, not “fewer rehospitalizations” or “consistent quality of life.” This often results in poor quality of life before death — an end to life that is generally inconsistent with the way the patient lived.
So should we change our perception of end-of-life care?
Isn't loss of humanity worse than loss of life?
And after all, if death is a failure, don’t we all lose?
The Institute of Medicine released a new report on end-of-life care shortly after this post was drafted: Dying in America.