Autonomy and the Birth of Bioethics As a Field in the 1970S
Autonomy
IBC42, Georgetown University
June 7, 2016
Maggie Little
1. Introduction
Autonomy and the birth of bioethics as a field in the 1970s:
Patient’s rights movement protesting unfettered medical paternalism. “Beneficence” sanctioned doctors, nurses, and health professionals to uniilaterally make the decision of what is best; decide what information to share based on whether think it is instrumentally helpful; and perform surgeries and medical treatments without the patient’s consent.
News of government-sponsored clinical research scandels: Tuskegee (1932-1972); Guatamala (1946-1948).
Critical appreciation of the importance of Respect for Autonomy. It is not the most important concept or principle; but its critical addition to the ranks of beneficence and justice has been an important advance in bioethics.
Today’s session: to pull apart the different threads of respect for autonomy to give us a “basic anatomy” on which to anchor discussions throughout this week.
2. Autonomy
Auto = self; nomous = governing
Autonomy as a Capacity: the ability to govern oneself; the ability to make choices about one’s life in light of one’s goals, values and reasons.
Autonomy as a Status: the right to govern oneself; the right to make choices about one’s life in light of one’s goals, values and reasons. Analogy to autonomy of a nation. Sovereignty -- the right to govern itself, and to author decisions based on its own priorities; Dominion -- the right against intrusion across borders.
The relationship between capacity and status: how much capacity one has is a matter of degree (and can change across situations and time); how well one exercises that capacity in a given instance can range from better to worse. At some point, the functioning is sufficently low that one no longer has Status as capacitated (for a given decision). The threshold for losing status is very high.
Respect for autonomy involves distinct duties and values; we are going to talk about three clusters:
One is about dominion over our bodies, and the idea that you cannot do something to my body without my consent -- and consent that understands what you propose doing and the risks and burdens it carries.
Another is respecting the diversity of values that reasonable people may bring to a choice situation, and when it is appropriate to be prescriptive or directive in medical (nursing, pastoral, etc) advice.
A third is helpful to scaffold patient/research subjects’ agency, to help support them in reaching a decision in the often complicated landscape of health care.
3. Informed consent & wrongful interference
Autonomy as status: bodily jurisdiction or dominion. No one has a right to intrude upon, access, or use an autonomous person’s body without their consent or permission. Analogies: your house; your bank account; sexual intimacy.
Medical context: beneficent motives do not substitute for consent. Surgery without patient’s consent is battery (Schloendorff v. Society of New York Hospital, 1914)
What does meaningful consent require?
It is not just agreement; it is a provision of moral permission.
It must be voluntary. It cannot be secured by threat or undue infuence.
It must be based on an understanding of what one is giving consent to. This includes what the experience is and what risks and burdens it carries.
The obligation to inform. When the party seeking permission has salient information the other predictably will lack -- as with medical care and clinical research -- they have a positive obligation to provide the relevant information.
Consent must be ongoing. One retains the right to withdraw treatment or participation in research. Consent (permission) for intrusion on the body must be contemporaneous.
Dominion includes the right to decline for foolish reasons.
Caveat: at some point, “foolish” = profoundly irrational = signal to question capacity for decision-making. High standard; must involve experts; and should be decision-specific.
4. Directive & non-directive counseling
Allied medical and research professionals have a specific, role-specific responsibility to provide not just information, but recommendations.
Guidelines are institutionalized recommendations that often serve as gatekeepers to resources.
This raises its own questions about how to be respectful of another person, and the potential for their differing values and priorities, when offering recommendations or ensconcing them in guidelines.
Recommendations are inherently based on both value and scientific judgments. To never make value decisions would abnegate the duty to be a source of advice; to always use one’s own values would be disrespectful.
Non-directive vs directive counseling: a continuum
Example: a broken leg vs the decision of when to enter hospice
4 key questions:
How widely shared are the relevant values over trade-offs? This includes how infused is the choice with issues of meaning rather than discrete medical outcomes: birth, death.
How clear is the evidence (safety and efficacy)?
How high are the stakes?
How emergent is the situation/limited the resources?
5. Scaffolding agency
The capacity for autonomy is comprised of many skills: the ability to process information; to issue spot; to project imaginatively what one might expect; to connect and integrate probabilities with one’s own values and priorities.
Many things can affect how well we are able to exercise these skills in a given situation:
Innate abilities, but also:
How familiar the situation is
How high the stakes
How time pressured the choice
How traumatic the context
Much about interpersonal and institutional setting can affect how well patients or research subjects are able to make decisions that are good for them.
Scaffolding agency: depending on resources, time, and control. Evidence-based; communication skills; environmental factors.