By Michele Battle-Fisher
While a visiting scholar at the Hastings Center in 2010, I was fortunate to speak at length with Dr. Michael Gusmano, research scholar at the Hastings Center and Dr. Barry Gurland, the Director of the Morris W. Straub III Center for the Study of Quality of Life housed at Columbia. With knocking knees, I began discussing with my desire to explore health management and ethics dynamically using the tenets of systems theory. Both scholars said that I may on to something. Great, now what? We “reach” an understanding of the state of QOL through quantifying intermediary steps such as medication compliance, health literacy, and social support. I do not recall an ICD code for attendance to family barbeques or activating one’s “social network” for care giving. Care giving is just assumed to be necessary to get by. Health care is not directly reimbursed for patients’ visits to Disneyland and the strength of the support ties that is available may serve as proxies of how well we are doing as a health care system.
Healthy patients demand less utilization of an already expensive health care system. The domains of QOL may include daily activities and restrictions on daily life activities. But must we forget hopes, dreams, intentionality and restrictions on emotional awareness of the patient when we are explore QOL? What may be more important to improved patient outcomes may be the things that we cannot see and what we least control outside of the clinical visit, the dynamics of social support. When illness comes, the complications of this worsened health status may have devastating effects on the patient’s quality of life (QOL) and the collective lives of those around them, their “network”. Health care, by nature, frames QOL as something a patient “should have”, not as a changing entity with varying degrees of outside influence (Thanks to Dr. Gurland for this). There must be a “truth” by a lived narrative of patients embedded in families and communities that live the experience as well. Happy patients make compliant patients. But healthy QOL is often described in terms of the patient’s Length of Life and prognosis. The goal of all involved in patient centered care is to have the patient experience a long (if lucky) and fruitful life. But who has the right to define what a good “life” should be for the patient and loved ones? The patient’s “life” is experienced chronicled as life event posts on Facebook.
OK, doc, how bad is this and will I be able to see my kids grow up?
How can I possibly satisfy my bucket list and see the Eiffel Tower if I must go to dialysis three days a week that restricts making the most mundane trips across town?
In the treatment of complicated chronic diseases such as cancer and End Stage Renal Disease, it is customary to have the patient complete ongoing QOL assessments to tracking what else is going on in the patient’s life. What if the patient believes that life is fine as it has been dealt, an imperfect but personally accepted “poor QOL” that adversely affects patient outcomes much to the chagrin of physicians, insurers and accreditation bodies? What happens when the self-care decisions of a patient run counter to evidence based prescriptivism? Who is the ultimate wielder of power in QOL? I argue that there is a blurring of the public and private in QOL. Perhaps this is most elemental level that health care is linked (whether we like it or not) to life satisfaction as patients navigate the world. And this should not be lost to those of us who serve to heal the bodies and souls of patients in need. Now how do we deal with this? Or can we? We must call upon and respect social networks as a solution to improving QOL and not merely a novelty with pretty, intricate pictures.