Narrative medicine offers a path to offer more treatment choices that include palliative care, hospice and alternative therapies in addition to aggressive technological solutions.
Annette Prince, director of the Oklahoma Palliative Care Resource Center and clinical assistant professor at the Oklahoma University Health Sciences Center, brings advance care directives to holiday dinners instead of mashed potatoes. Friends and family may laugh, but she's serious when it comes to helping people think about, evaluate and make medical choices in advance of a time when they may not be able to communicate their wishes.
Ms. Prince, a Licensed Clinical Social Worker with a Juris Doctorate degree, recently organized a bioethics conference on the topic of narrative ethics and invited me to speak. I'm not a physician, nurse or social worker, although they made up much of the conference's audience and webcast subscription. I'm a writer whose latest novel is about a family coming to terms with the end of a woman's life. Although one of my characters turned out to be a great subject for the conference, I didn't know what "narrative ethics" were until I got the call.
Ms. Prince told me:
Narrative medicine is about incorporating patients' life stories, including their unique underlying value system, into medical treatment options that fit each individual. Narrative ethics refers to how a doctor listens for, and hears, more than a report of disease symptoms. This encourages shared, ethical decision-making regarding the patient's care, particularly at the end of life. It balances treatment options between the belief systems and life of the patient, and the technological possibilities the doctor advocates. Ideally, end of life treatment goals should be in harmony with the way the patient has lived their life through the beginning and middle.
That is exactly what one of my fictional characters fought for, but I knew from personal experience and by my research that even a lot of doctors don't know about this emerging field of practice.
What keeps us singularly focused on technology as the only way to treat an illness? I think it's due to lack of conversation, and that conversation has got to start with a receptive physician.
Some health care providers, doctors especially, are learning to ask the right questions and to really hear the human side of the patient's disease or condition. But there are a lot of reasons why doctors can't or don't do this already, and some of them might surprise you.
Cynics would say that doctor time is money, and doctors only spend enough time with patients to figure out the best possible profit margin through testing and prolonged treatment. While I don't personally believe that many physicians are motivated by capitalism, I'm sure that money plays some role in the quality of treatment. Insurance and pharmaceutical companies both have their hands in the profit equation, and in order to make a decent living at reimbursed rates, physicians have to keep people moving through the system. The time spent listening to how Mr. Gonzalez emigrated from Ecuador isn't quantifiable.
Another reason that doctors don't spend more time getting to know their patients is because emotional attachment can hurt. I'd never considered my doctors' feelings much until I spoke to an oncologist about narrative medicine.
"I always get to know my patients before treating them," she said, "but that makes it hard to tell more than one person a day that they're dying. It takes a great emotional toll." Distance can help doctors avoid feeling guilty if a young mother dies too soon, and it protects their hearts from breaking when bad things happen to good people. They're only human, after all. Doctors have families just like ours and getting too involved can compromise their objectivity.
Another reason doctors don't tease out a patient's story is because they're not trained to. Conversation is an art. It takes practice and skill, and it isn't learned poring over textbooks and case studies. People who are drawn to finding innovative treatments for very sick people probably aren't, as a whole, the touchy-feely type. Many are more comfortable studying concepts, technology and the science behind their advanced degrees than they are sitting and talking about how a stranger feels about their mind/body connection. People who are comfortable doing that generally go into social work or more patient-centered care such as nursing or psychology.
Rita Charon, MD, Ph.D, is considered the godmother of the narrative medicine practice. In her masterpiece book, Narrative Medicine: Honoring the Stories of Illness (Oxford University Press, 2006), she notes that, "[P]ractictioners, be they health care professionals to begin with or not, must be prepared to offer the self as a therapeutic instrument."
Offering the self can be really difficult for many overworked, underpaid and underskilled physicians unless they acquire additional training.
Narrative medicine students, like the ones in Columbia University's new Program in Narrative Medicine, read and discuss literature as a way of understanding the role and perspectives of doctors and patients. The program, named #1 of the "New Master's of the Universe" by The New York Times, teaches physicians to be more comfortable asking such questions as: How do you feel about your illness? What are your religious beliefs? How has the pain changed your life? Doctors with the skill to listen to the answers, theoretically, will provide a higher quality of care, and that alone will go a long way in healing our ailing health care system.
What a concept: Storytelling as a way to focus health care on the actual patient instead of stretching and tugging at an institutionalized, one-size-fits-all approach. Narrative medicine, and the resulting application of its principles to medical ethics, seems to me a bright new star in the universe of medical possibilities.
Janice M. Van Dyck is an award-winning novelist and freelance writer. Her latest novel, Finding Frances, tells the story of how a mother's beliefs shaped her end-of-life choices.
Annette Prince, LCSW, JD, suggests the following links:
Dr. Jerry Vanetta, a well-known advocate for narrative medicine
Stories Matter: The Role of Narrative in Medical Ethics (Routledge, 2002), edited by Rita Charon and Martha Montello
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