In case you’re wondering about the origin of this post, it is the title of a continuing legal education panel I participated in last week which was sponsored by the Boulder County Bar Association. Other participants were elder law attorneys of diverse backgrounds including Ayo Labode, Jodi Martin and Lorenzo Trujillo and the panel was moderated by Martha Ridgway. A focus of our conversation was about the challenges in meeting our clients where they are now, and recognizing from where they have come. Listening carefully is an important skill in this regard. Each of us was asked to contribute a useful document for the materials. I chose an old favorite of mine from the University of New Mexico – the Values History: A form to assist you in making health care choices in accordance with your values. This important document is available online in pdf format for free download here. There are other resources from the ABA that are also helpful to start the difficult conversation about end of life choices.
For today’s post, I will focus on the health care questions in the context of the cultural and socioeconomic factors that affect each of us – whether it is from our family of origin, our family of creation or our family of choice. I’ll start with the history of informed consent. Informed consent has simple and more nuanced definitions that are situation dependent. I will quote from a good overview I found from the University of Washington School of Medicine, written by bioethicist Jessica de Bord:
What are the elements of full informed consent?
The most important goal of informed consent is that the patient has an opportunity to be an informed participant in her health care decisions. It is generally accepted that informed consent includes a discussion of the following elements:
- The nature of the decision/procedure
- Reasonable alternatives to the proposed intervention
- The relevant risks, benefits, and uncertainties related to each alternative
- Assessment of patient understanding
- The acceptance of the intervention by the patient
I have previously blogged about the tragic history of “informed consent” in the context of World War II, the Nazi doctors and the Nuremberg trials. In this country we have the recent and shameful legacy of the Tuskegee Study, which is a legacy of the disenfranchised that informs many African-Americans’ experience of our health care system and the allocation of its resources. I thank my friend and colleague Ayo Labode for including reference to this study in her comments at the CLE.
The Tuskegee Study took place in Macon County, Alabama, where 600 poor and illiterate African-American men were enrolled in the study. The men were offered many things for their participation, including medical exams, meals on exam days and burial stipends. The study was commissioned by the U.S. Public Health Service and it was called the “Tuskegee Study of Untreated Syphilis in the Negro Male.” What the participants (and their families) didn’t know is that the study, begun in 1932 and concluded in 1972, was non-therapeutic. This nontherapeutic study continued even after the introduction of penicillin as treatment for syphilis by 1947, but none of the participants were offered or given the treatment. In 1972, an Associated Press journalist broke the story of the 40 year long nontherapeutic study. In 1997, President Clinton gave an apology for the study. Here is an excerpt from the President’s remarks that is particularly relevant to the topic of this post:
The legacy of the study at Tuskegee has reached far and deep, in ways that hurt our progress and divide our nation. We cannot be one America when a whole segment of our nation has no trust in America. An apology is the first step, and we take it with a commitment to rebuild that broken trust. We can begin by making sure there is never again another episode like this one. We need to do more to ensure that medical research practices are sound and ethical, and that researchers work more closely with communities.
So in order for each of us, as people and as elder law attorneys working in a field with so much psycho-social and emotional content, to be able to respect each others’ differences – we first must recognize them. Each of us, as adults, needs to confront the difficult questions of who we will choose to be our surrogate decision-maker (agent under a medical POA) in the event we are unable to decide, and we need to talk about what we want in end of life care. If we are to honor our self-determination and autonomy in our dealings with the medical-industrial complex, we must take the necessary steps now. This will be my final installment on the May is Elder Law Month theme for this year.
©Barbara Cashman 2014 www.DenverElderLaw.org