"Systems thinking is not big words or dynamic images but rather fearlessness amidst uncertainty."
"We live in a universe, one that is elegant, ordered & sophisticated, while unabashedly, simultaneously wicked."
"We are not cells; we are composed of them. Our bodies are acted upon...operating as social agents with oblique intentions."
"The perfect state of being would require the absolute absence of naturally occurring or socially imputed error. Fallibility comes from internal and external systems, both open social systems and closed physical systems. Human fallibility would thereby require living (not merely existing) under imperfect physical, political and organizational states."
WHY IS BEING HEALTHY SO COMPLEX?
The world is run by systems that overlap conflict and adapt to social needs over time. In dealing with the uncertainty and risk of the human condition, people seek to “control” that uncertainty (though systems can only be adapted to and not controlled).
There is nothing more uncertain for people than why they are not well. In the physical world, the perfect state would be absolute absence of error and total resilience to uncertainty. While we cling to what a perfect conception of our health can be, the margin of error between the conception and achievement of that health is tied in part to risk and uncertainty. If the uncertainty of health is framed as something that is inherent to social systems that should not be feared but harnessed, I contend that the public can confidently uncover the resilient patterns of health that make us infalliably, wholly human.
There is a difference between discredited and discreditable health realities, the seen versus the unseen. It is a part of the human experience that we are uncomfortable in the world. Some elements that marginalize and impress our lives must be worked over to figure what might be likely to happen. When uncertainty charges forth at odds with the life that we want, we neither had nor will ever enjoy pure certainty. In addition to all the unseen factors bearing down out health, there are also social, ethical and behavioral expectations that people must navigate successfully.
Health is so personal. If it is not our health that we are worried about, we worry as caregivers and concerned others. Uncertainty be damned, we want to leave this earth on our own terms, having lived a life that aligned with our providence of a “good, fulfilling life.” We want to control how we navigate and vacate this earth. Mind the gap between intentionality and what actually transpires. Comfort may be harder to conjure up if the discreditable and wicked cracks to the mandible land squarely.
PUBLIC OR PRIVATE? WHO OWNS OUR BODIES AND LIVES OUR LIVES?
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, Application of Systems Thinking, 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, Application of Systems Thinking, 2015).
NOTE: This narrative is taken from 2 of my HIPPO READS articles:
"What Scientific Gobbledygook! Systems, Uncertainty and “Known Unknowns”- http://hipporeads.com/what-scientific-gobbledygook-systems-uncertainty-and-known-unknowns/
"Chronic Illness, Caregiving and the 800-lb Gorilla Network"- http://hipporeads.com/chronic-illness-caregiving-and-the-800-pound-gorilla-network/