Chronic Illness, Caregiving and the 800-pound Gorilla Network Michele Battle-Fisher Science & Medicine, Society & Culture Private medical issues rarely remain concealed from the public. A “private” medical issue becomes everyone else’s business for a good reason. Health must be modeled as realistically as possible, as a murky overlap of public versus private. While a visiting scholar at the Hastings Center, 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 (QOL) housed at Columbia. With knocking knees, I began discussing with my desire to explore health and organizational behavior dynamically using the tenets of systems theory. I said that we reach an understanding of the state of QOL through quantifying intermediary changing in medication compliance, health literacy, and social support. This initial musing laid the foundation of my Concentric Model for Health Bound Networks in my book. I do not recall an ICD code for attendance to family barbeques or activating one’s social network for the sake of caregiving. Caregiving is just assumed to be there. You as the patient will find a way to get what you need. You will find a way to get by. Health care is not directly reimbursing for patients’ visits to Disneyland or late night trips by a helpful neighbor to the pharmacy. ICD does not directly measure our “living” but rather our quantifiable “existence” inexplicably linked to the health of our support 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.” According to Dr. Gurland, health care frames QOL as something a patient “should have,” not as a changing entity with heteronomy of our support networks. 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. 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? While autonomy is often presented as a hallmark of medical ethics, perhaps it should be viewed as a nebulous benchmark with degrees of variation. It cannot be ignored that there can be social influence from others on patients. Socially constructed autonomy differs from the vanilla version as there is an assumed outside influence on the QOL of a patient. The effect of collective autonomy is shown as the rights afforded within a self-governing network. Take the case of a family that has been stricken with ESRD (End Stage Renal Disease). There may be apathy to the perceived benefit of proper self-care and the quest for the elusive QOL that the clinicians expound as the Holy Grail. Other family members have languished on dialysis and complied at varying degrees toward “better QOL” and still died. This emotive back story could have grave consequences on compliance within the patient’s network. So what is the use of complying with physician’s directives when the network expressing discontent with the patient’s health choices? (Battle-Fisher, 2015). Patients have social networks of confidantes (nodes) of differing influence. The networks have people that come and go. This support network is an 800-pound gorilla in the examining room. This gorilla is a relative that has diabetes and complains of diabetic neuropathy while carefully sectioning the pecan pie with a surgeon’s precision. The sorority sister is a helpful node that caresses your hand as you await medical results. Patients and clinicians alike must deal with and acknowledge the bounty and dearth of social support. Best interest is the best interest of the collective. This population becomes a self-selected cohort of convenience such as a social network. By looking at socially constructed hybrid of autonomy now navigated in the public sphere, autonomous decision making becomes blurred. But I believe that this ethical discussion is necessary to understand the difficult social realities in which patients exist. “The most complex system is the one which the public has the most to lose” (Battle-Fisher, 2015). Read more in Michele Battle-Fisher, Application of Systems Thinking to Health Policy & Public Health Ethics- Public Health and Private Illness (Springer, 2015). An earlier version can be found on the Orgcomplexity Blog.
