A Conversation with Gabe Kaimowitz about Autonomy, Liberty and Informed Consent when Medical Treatment or Research is Proposed

In this keynote we will speak with Gabe Kaimowitz about the genesis of meaningful legal intrusion in mental health issues during President Lyndon Johnson’s War on Poverty, 1965-74, which sought to establish the rights of individuals confined in state psychiatric facilities. We will discuss the landmark Kaimowitz case, which effectively ended psychosurgery in the United States and the Bell case which established due process and informed consent rights for patients confined in public hospitals. As part of this discussion we will explore what is necessary to have true informed consent, including the danger of institutional, professional, familial or other custodial coercion, the application of the Nuremberg Code to Nazi medical professionals and its dilution subsequently in the United States.

Learning Goals:

  1. To understand the evolution of the movement for those subjected to psychiatric labels (using the Bell and Kaimowitz cases as examples), we will explore:

    • the context of its development
    • early cases by legal services attorneys
    • the importance of the press
  2. To understand the necessary prerequisites to informed consent, we will explore:

a. The right of individuals to be protected from unwanted intrusion by the State, medical professionals, and even their own families, or other custodians, when necessary;
b. Institutional coercion, e.g.:
~ offers of rewards in exchange for consent to treatment. or medical research;
~ the implications of the Kaimowitz and Bell decisions for any proposed medical treatment or research, including electroshock and psychotropic medications;
c. Institutional motivations:
~ cure, social control, staff convenience, financial gain or savings, political gain, professional prestige;
d. The three principles of legal consent — informed, knowing, and voluntary:
~ is each of us given enough information to make a decision about the proposed action?
~ does each have the capability of making such a decision?
~ does the individual have real freedom to make that decision?
~ what lawfully can happen if one or more of those requisites is absent?

  1. When informed consent is lacking, the need for decision by a judge or hearing officer to receive clear and convincing evidence of benefits to the individual before any treatment is given, aided by legal counsel, experts, factual witnesses and documents:
    a. The fallacy of proxy consent;
    b. Legal presumptions regarding an individual’s ability to consent, e.g., legal presumptions about children or adults deemed to be in need of protection in a federal action
  2. Accountability of institutions and professionals who proceed without such informed consent, when that failure is the proximate cause of any harm suffered by the affected individuals.

    Kaimowitz v. Michigan Department of Mental Health (full decision), 1 Mental DIsability Law Reporter 147 (1976-77).