I was reading Eula Biss’ collection of essays before the Disney Land measles outbreak. I appreciate the way she rotates subjects around as if they are a critical element in an interior decorating project: holding the subjects up close, then further away, squinting one eye, setting it aside a few objects, and then a few others, adjusting, tweaking and inverting as she proceeds.
I switched over to her book, On Immunity: An Inoculation to see how she turned this topic around in her palm. I have not been disappointed.
Her voice is protective, curious, and authoritative. She reviews the history of vaccination in the context of various present-day arguments both for and against the practice. There are many moments in her discourse that are intriguing, but one that is central to our shifting health care ecosystem: paternalism.
Biss writes, “Autonomy is usually imagined as the alternative to paternalism. But in what is sometimes called the ‘restaurant model’ of medicine, the paternalism of doctors has been replaced by consumerism of patients. We order tests and treatments from a menu based on our consumer research. And the doctor, who was a father in the paternalistic model, is now a waiter. The idea that the customer is always right, imported to medicine, is a dangerous dictum.”
She continues by quoting bioethicist Arthur Caplan who says: “If you keep telling people that it’s just a marketplace and that they’re just clients and that the autonomy of the patient is what must be served to make them happy customers, then you have a collapse of professionalism in the face of consumer demand.”
Recent headlines sparking interest in digital health around telemedicine, wearables, online scheduling platforms, crowd-sourced databases, and Obamacare often shout soundbites like “New Consumer-driven industry” and just as often suggest health care should take cues from other consumer-facing retail experiences. Not incorrectly, either. There is definitely a need to look at other industries’ successes when it comes to website user experience, or communication and design. Health care has shifted away from the paternalistic notions of care. However, as Biss says, non-paternalistic care does not mean consumer-driven care.
Jimmy Kimmel released a series of statements collected by doctors dedicated to anti-vaccinators in this video. In his introduction, he jokes that parents and caregivers claiming to know more than what doctors know (and decide not to vaccinate) should be declined emergency room visits since, after all, their expertise outweighs those people who have had decades of training.
Atul Gawande recently wrote an article suggesting that it wasn’t so much technology advancing health care but doctors. They are the ones carrying the innovation forward through repetitive application and recommendation. Doctors are still the ones ultimately looked to for professional counsel in achieving and sustaining health, and are also the ones ultimately looked to as the source of patient error, discomfort or death.
In her book, Eula Biss rightly notes philosopher Mark Sagoff: “Where there is trust, paternalism is unnecessary. Where there is no trust, it is unconscionable.” Paternalism means one-directional linearity. It means there is no questioning that authority.
There is more at play when a patient questions the authority of an individual doctor. The patient is also questioning the pervasive authority of the medical and science institutions.
Foucault says power is everywhere and comes from everywhere. He calls power “metapower” or a “regime of truth” that is ubiquitous throughout society, and that is constantly in negotiation. Within these miniature battles of power is a reworking of accepted forms of knowledge and understanding. He also says that negotiations of power can be good, and not just illustrations of censorship or oppression. The reason is because it produces opportunities, surface areas for new thought and understanding of the world around you.
I see this, like many others, as opportunities for education, for collaborations, and for co-operations in medicine. Thinking about paternalism and its affects both positive and negative on the caregiver and care receiver, Biss discusses educator Barbara Peterson’s suggestion that care taking does not need to threaten liberty (liberty, as noted, being the contender to paternalism). Instead, Biss quotes Peterson: “From a feminist caring framework, liberty is not defined as complete separation and independence from the parent.” There is an ongoing relationship based in trust, care and respect. I’m not sure I entirely agree that maternalism is a perfect alternative for helping us re-imagine the traditional paternalistic doctor-patient relationship as Biss offers, but I do think she is on to something when she aligns continuous familial care with the shifting “regime of truth” of today’s medical institution.