This is a concept that I presented at the 2011 Aging and Society Conference at UC Berkeley.
This is an unpublished manuscript with the hopes of further developing the idea in the future.
Whose (Quality of) Life is it anyway?
Battle-Fisher, M. , 2011-11-8. Whose Quality of Life is it anyway: the collective health experience and quality of life. Paper presented to the 2011 Aging and Society: An Interdisciplinary Conference, University of California, Berkeley, CA (Original Research).
Posted to Orgcomplexity – January 10, 2013
It may be a foredawn conclusion that the person’s quality of life (QOL) stays just that—inherent to ego-linked experience with disease. Moreover, QOL is often analogous to Length of Life and prognosis. What if the patient believes that life is fine as it has been dealt, imperfect clinically but personally acceptable (or tolerated)? What happens when the self-care decisions of a patient run counter to the evidence based prescriptivism of medical care? Who is the ultimate wielder of power in QOL? I argue that there is a blurring of the penumbras of the public and private spheres in our understanding of QOL. As the patient is embedded into a support network, I additionally posit that there is a “shared” collective QOL by which caring others are affected by the life state of the patient. It is an interesting question to explore the final victor in QOL: the psychometrically measured QOL which is constructed by the “other” (medical researchers) or a patient’s and the network’s subjective understandings of a sick existence. In light of generational issues of longevity with decreased physical and mental functionalities of patients, what must not be ignored is the network of support. Lastly, I present the argument that there is a “pass back” of influence on the network’s QOL that affects the collective experience. This may question whether autonomy truly applies in such cases.
What is the primary driver of QOL for the patient? Who is right? Or wrong? As Dr. Gurland noted during a discussion we had while I was at residence at the Hastings Center, we do not have a solution to altering a person’s QOL and what is happening in someone’s head. We measure it with Cronbach’s alpha statistics. But there may be a way…We can have access to the social networks, if we but acknowledge that they harness a major key to success in understanding all QOL. Pervasive poor QOL could be marked as a measure of the state of the public’s overall health. From the heated debates in blog-spheres and to the patriotic public squares, the issue of taking care of the masses of health becomes a common refrain with heated debate. There are social and economic implications to acting as a paternalistic ward of the nation’s health. I am not arguing this point. I would only be preaching to the choir. What I present in this essay is an issue of “collective autonomy” toward quality of life. Yes the concepts at first blush appear to be incongruent at best. Healthy patients demand less care, vis a vis, a “better” QOL. Is the Quality of Life of a patient ever just their own to negotiate? Or do the masses of concerned others also have some “say” in what QOL should and must be for the patient? The fact that the society has become so vocalized at midterm elections bodes the concern of where the line between personal autonomy and social responsibility come together. Is there a duty (as an appendage of “autonomy”) that asks for duty not to merely act in one’s own interest but also that of the collective?
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 effects of this “collective autonomy” (with intact social network as the unit of analysis not the lone patient) may be indirectly experienced by the patient but powerful nonetheless. Take the case of a family that has been stricken with ESRD in droves. 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 for proper self-care? 
Patients have social networks of confidantes of differing volumes and compositions, but each member by association has the ability to persuade and dissuade as they wish. Often this network is an 800-pound gorilla in the examining room. The ethics of the network may or not be left at the door. Clinicians must deal with these unknown influencers that make act contrary to supporting better medical outcomes for the patient. Best interest becomes the best interest of the collective. This would be advantageous if there was an inherent guarantee that only healthful behaviors would be supported that assisted the overall wellness of a population. But when 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 necessary and germane to the realities in which patients navigate. How much influence is wielded by the network in reinforcing the norms of self-care? It remains disadvantageous to assume that primary influencing linkage is enjoyed by the health care provider. This reality must be examined in order the crack the working influencing of networks on QOL, both personal and shared.
Often illness and disability calls for support from members of a social network of concerned actors. A daughter might ask can Mother perform the requirements of herself care for “probable” better QOL with or without accepting my help. This position of caregiver brings with it “a say”, a power to act as an influential force in the patients’ life. This obligate then may accept and regard shared responsibility for actions towards ensuring QOL of her mother. While Mother may not hold the same ideals in QOL as the care giving daughter (e.g. Mother may hold a differing definition of QOL than the daughter), the position of needing the benefit of help brings a collective view of QOL for the whole network not just the patient. An ill patient with concerned others can never be an island—QOL will affect others in the network.
I present the model of a “Pass back benefit” to the patient through social networks as a visualization of how this “collective autonomy” may work. This particular network is connected through disease state. As such, a question to be raised would be what, if any, benefit in QOL resides in this arrangement. Should the network only seek personal QOL benefit for the patient or does the embeddedness in a network naturally allow a “collective” QOL as well? Does collective QOL go back to the patient as benefit of having the tie? The nominalization of benefit should not be assumed to be “positive” in all cases. This model leads to many questions:
1. Must the network be responsible in any way for the patient’s QOL? What mechanisms may be at play: e.g. guilt, power, self-imposed responsibility?
2. What about the “difficult patient”? How does this change the dynamic of “pass back benefit”?
3. Is there a ripple effect on fatalistic beliefs in networks (homophily)? So far the literature ignores network-determined responsibility in QOL.
4. How might utility as conceived by the surrogates (networks) work, if this exists?
5. How imminent is end of life patients (chronicity)? Must there be shared goals of QOL of members of the network? 
I honestly wished that I had more conclusions than questions. I would hope that this model would not exclusively be framed in terms of fatalism (that self care will not work) but also the opportunity costs levied on the network deem are or are not worth the effort. If the social network does or does not find that there is enough benefit to override cost of caring for the patient, they may deem that there is a duty to the collective “not to treat” or “treat for the sake of the network (against patient’s wishes). An example could be a mother makes a collective QOL decision- refusal to give a living donation because daughter will not take care of it. That member of the network sees benefit in lower collective QOL for the patient above the sacrifice that has to be made by the network to care for the patient. Mind you, the patient may have a different understanding of life without a chance of a kidney (the personal QOL). I must ask is there a tipping point where it becomes a collective QOL for the network giving each member of the network a right to influence medical decision making? Is care giving ever a moniker for assumed right to exhibit influence on the autonomy vested with the patient? I call grappling with the 800 lb. gorilla. It is there, whispering sweet nothings into the patient’s psyche.
 Personal communication, Dr. Barry Gurland, August 2010
2 Miles, S. (Winter 1992). Medical Futility: who decides?. Law Med Health Care. 20(4), 310-5.
3 Mohindra, R. (February 2007). Medical Futility: a conceptual model. J Med Ethics. 33(2), 71-5.