I grew up in Baton Rouge, Louisiana in the 1960s. My neighbors on all sides were my age, Catholic (as was I), and attended the same church/school/parish activities. My mother’s brother lived down the street with his large Catholic family. If someone missed Mass, we all knew before the final hymn who missed, why they missed, and whether it was contagious. I was reminded of this because of the family activities that the holidays bring as well as the Christmas present that I was given by my family. The present was a copy of American Catholic: The Saints and Sinners who Built America’s Most Powerful Church, a book about the rise of the Church from the mid-1800s to today. Much of the book is focused on the mid-20th century, and it brought home just how unusual our home/parish/neighborhood was. In other parts of America by 1960 the suburban exodus enforced mingling of people from varied backgrounds and religious beliefs (albeit overwhelmingly Caucasian) making the church less relevant for Catholics. But for us, growing up was a Catholic, Cajun experience where Father Funke was involved in our daily lives.
As a member of the ethics committee for the hospital and one of the faculty members who offers ethics instruction to medical students, the importance of autonomy has been drilled into me. If the patient has expressed a wish on how they would want things to go given a specific set of circumstances, that is what should happen. Visiting with my family, I think of how unusual it is for the exact circumstance to have been thought of, discussed, and decided prior to it happening. As a physician who tries to get families to understand this, I know how often the system is found to be lacking. As the designated surrogate, this worries me as well. I often think that there must be a different way to make such decisions. I think back to my upbringing and wonder if the concept of utilizing complex relationship to assist in such decision making might help. The Catholic bishops have issued a set of directives regarding medical ethics for Catholic health care providers and institutions. In it, they identify the individual’s obligation (use ordinary or proportionate means of preserving his or her life) and when the individual may opt out (a person may forgo extraordinary or disproportionate means of preserving life). Knowing someone is Catholic, then, could in theory help me as physician to direct therapy.
Or not. Let’s take artificial nutrition as an example. The use of artificial nutrition would seem fairly straightforward. The bishops state that “There should be a presumption in favor of providing nutrition and hydration to all patients, including patients who require medically assisted nutrition and hydration, as long as this is of sufficient benefit to outweigh the burdens involved to the patient.” Unfortunately, the benefits often aren’t that clear. We do know it prolongs life in persistent vegetative state and short gut syndrome. We don’t think it prolongs life in people with advanced cancer or Alzheimer’s disease (but don’t know for sure). We think that people who elect not to have such intervention and subsequently die of their disease do not seem to suffer any more than if they had elected to receive such therapy.
So when does the benefit outweigh the burden? Is it only when death is imminent, as some bishops state? Is it when after a massive stroke the patient is unable to function and will be a burden to caregivers? Is it after a period of time, when it becomes apparent that the burden has become intolerable?
How we die of our terminal illness almost always reflects more than just biological destiny. When I have a patient who is a Jehovah’s Witness in the hospital, it is not unusual for the church to send a representative to sit at the bedside. While I hope they are present to provide comfort and solace, it is common knowledge that they are also there to prevent accidental administration of blood products as well as to prevent a decision on the part of the patient to accept blood products should they be offered. However, Father at the bedside is not how most of my patients (Catholic or otherwise) have their values enforced in my experience. In practice, I find that we tend to have an internalized set of values that we draw on in times of stress. Often, things are not black or white. Proportionalism is one descriptive theory for how we deal with actions that in themselves are neither right nor wrong but could lead to an wrong outcome (such as a premature death).
What does this mean for me as a physician? It means that there is no easy answer. I have to give the patient (and his or her surrogate) as much information as possible in such situations to allow them to weigh it against their internal (or external) value system and make the best decision. As a patient, it means I need to choose a surrogate who shares my “moral compass.” As a potential surrogate, I have to admit that I will use my knowledge of the person for whom I am asked to make decisions rather than parrot back what I thought I heard from their lips.