AUTONOMY AND INTERDEPENDENCE
Autonomy, the right of individuals to make decisions about how they want to live their life, is deeply ingrained in our culture. It is embedded in our laws and is a basic ethical tenet in medical decision making. The rise of ADs is based on the goal of extending patient autonomy (the right to make medical decisions based on personal choice) when the patient has lost capacity to speak for him/herself. It is anticipated that the choices expressed in the AD will be used to make medical decisions in an unknown future. Current ADs tend to focus on specific medical procedures, including cardiopulmonary resuscitation (CPR), mechanical ventilation, feeding tube, antibiotics, and designating a proxy or agent.
It is important to emphasize that the AD is giving instruction to the community that is caring for the patient. The instructions are directing a dynamic group of caregivers (family, friends, and health care professionals) who will be expected to both interpret and act on those instructions. However, this is not a one-way communication. The community will also be deeply affected by the responsibility given in these instructions. Thus, an AD depends heavily on the community that is receiving it.
As previously mentioned, the belief in autonomy—the right of a patient to make medical decisions based on personal choice—is a basic tenet of both general and medical culture in the United States. The problem with the
belief in autonomy is that, while it inspires all of us in living our lives, it just isn't true. By its very nature, serious illness diminishes personal autonomy and increases interdependence within our community. We live in a web of reciprocal relationships. Decisions that a patient makes will have an impact on the entire community, the family, and the medical providers.
Each individual in this web of relationships also possesses autonomy that may or may not agree with the decision made by the patient. If a seriously ill patient wants to go home for further care, do we consider the autonomy of the spouse who is already exhausted from past care giving and is now being asked to do even more? What about the medical team whose extensive clinical experience and wisdom may support a different story? What should clinicians do when they witness patients and families making decisions that they deeply grieve because they are certain that these choices will only add to the combined suffering of the patient and the fam- ily? (Farber, Egnew, & Farber, 2004).
The competing autonomies of the patient and all members of his/her community need to be acknowledged. However, when these multiple points of view are acknowledged, decision making becomes much more complicated and the utility of a fixed AD written before the medical crisis may well be of limited value. Ideally, medical decisions will integrate the viewpoints of the patient, the patient's community, and the medical community, acknowledging interdependence. The patient who has lost the capacity to make decisions is dependent on his or her community, and the community is both dependent on and is a guide to the medical team to make medical decisions that are respectful of the lived history of the patient. This complex process is rarely reduced to a single document that focuses primarily on medical procedures.
VALUES AND GOALS
What makes a life worth living? Isn't this really what we are trying to determine? How does any one person define living? For some it may be the physiological process of continuing to breathe, to stay physically here on this earth for as long as possible. For another, it is something more. If you were no longer able to feed yourself, bathe yourself, or manage any of your personal care needs, would that be intolerable? Or, could you accept that level of living as long as you were still able to recognize and communicate with your loved ones?
When someone clearly states what constitutes quality of life, especially identifying his or her bottom line, it is much more helpful to the community of caregivers (both personal and professional) than any of the boxes about medical treatments checked on the AD form. Values and goals, openly communicated, will give substance and guidance
to a patient's agents should the time come for them to act on a loved one's behalf.
When we facilitate workshops to assist people in the completion of ADs, this is where we begin. Our workshops often use Five Wishes (available online at 5wishes.com) as our working document. There are other good tools including My Directives (found at theconversationproject.org/), a website created by Ellen Goodman and Len Fishman to promote EOL planning and the use of ADs. Before we distribute the document, we begin with a guided experience that helps participants get in touch with what they value most in life. One such exercise, created by Steven Levine in his book One Year to Live, asks a series of questions about what the participants would do if they knew they only had 1 year left to live. The categories of questions include such things as, “What unfinished business would you complete?,” “What things would you want to do with family and friends?,” “Where would you travel?,” “What would you want to say to loved ones?,” and so on. At the end of the exercise most people notice themes that flow through their answers reflecting their values as well as goals. In our action-oriented lives taking time to think about values is often a new experience, even though it is these values that have created meaning in our lives.
Next, the Five Wishes AD document is handed out and participants are requested to turn to the last page. We instruct participants to complete the form backwards. Why do we start this way? Most AD documents place questions about how we want to live the EOL at the end of the document. This assumes that the questions of medical intervention, which are asked first, are primary to the quality of life we would choose to live. However, if we begin by contemplating our values to define a quality of life that is consistent with our lived history, questions about medical procedures become secondary, supporting our goals and values. In other words, the use of various medical procedures should be determined on the basis of their ability to help us achieve our quality-of-life goals. In the same vein, when we talk to our family and community about our ADs, the most important information that we can communicate is not whether or not we want CPR or other aggressive treatments. It is the story that describes when quality of life is present and when it is not. It is a tool to guide the agent in knowing when the patient is no longer living a life with meaning.
We are beings who inherently create meaning in story form. So, thinking of future possibilities in terms of the story of a life, given some unforeseen diminishment, helps to identify both what is worth living for and what would be intolerable. That will be as unique for each person as the life story that he/she has created. One certainty is that values are more stable and constant than the medical facts of an unknown future. Encouraging conversations about values and goals between individuals and their agent is one of the best ways to reduce uncertainty when the unknown future arrives. What we cannot know is what the future has in store. What we can be certain of today is what we value. Values do not tend to shift with changing circumstances.