The Rev. Martha R. Jacobs on the importance of Advance Directives

The Importance of Advance Directives

Terry Schiavo has been in a coma (some say a persistent vegetative state) in a Florida nursing home, brain damaged and supported by a feeding tube, since 1990. Her case has created a level of awareness in the U.S. not seen since the celebrated cases of Karen Ann Quinlin and Nancy Cruzan first raised the consciousness of the need for advance directives. As the United States Supreme Court ruled in 1990, individuals have a right to self-determination, but they need to tell someone what their wishes are before they become incapacitated. Most states responded by allowing the creation of Living Wills, documents in which individuals can stipulate what medical treatment they want or do not want to receive.

My experience is that in most cases, unfortunately, the provisions of a Living Will do not cover every contingency. They have sometimes been overruled by ethics boards when the patient did not clearly state his or her wishes in a particular situation, such as when not to resuscitate. Or, families and/or medical care givers resist carrying out the patient’s wishes as stated in a Living Will. In New York and Missouri, the standard is higher than a Living Will in that you must actually name someone to make your healthcare decisions for you. This “Health Care Proxy,” only takes effect if the person cannot make decisions for him/herself. Even if not required by law, I believe more patients should name a Health Care Proxy, and take the time to discuss with that person their wishes regarding resuscitation, artificial hydration and nutrition, respirators, and other life-prolonging treatment. This removes the ambiguity surrounding a Living Will and gives one person—who knows the patient’s wishes—complete legal authority in medical decision making.

The problem with all of these directives is that most people do not want to talk about the possibility that they might die. Some people think that when they sign a Living Will or a proxy that they are “jinxing” themselves and that they surely will die soon. Not to make light of this thinking, but each of us is going to die at some point in our life. Further, death is rarely spoken about, even from the pulpit. This shows a lack of clarity even for clergy on this issue. Imagine how our congregants must feel about this when we, who are supposed to have a “closer” relationship with G-d, can’t even talk about death, other than on Good Friday (if then).

As a chaplain I am often puzzled by the desire of people to stay alive for as long as possible. Is it the fear of death? Is it the fear of not knowing whether or not they will go to heaven? The paradox for me is that some people say that when it is their time, “G-d will take them.” Being hooked up to machinery that prolongs ones life, in my opinion, is not letting “G-d take them.” People want to hold out for miracles. Miracles happen with and without respirators. If we believe in G-d and, for some religions, some sort of life after death, then why are we afraid to die? Our bodies, which I believe were created by G-d, were not created to live forever; our bodies deteriorate and so do our minds. We were clearly not created to outlive our physical bodies.

It is a real quandary for me as a chaplain. I have been trained to put my own views aside when families are looking for guidance. I often watch families struggle with trying to make decisions for their loved one who is clearly dying, having never had a conversation about what their loved one wanted. It makes me wonder if we are really helping humanity with all of the mechanical means we have for keeping people alive, sometimes well beyond even what is humane.

I know that there is no easy solution to this dilemma. As long as people feel the need to live longer and longer and are fearful of death, this will continue. Our role as spiritual care givers should be to help individuals accept, if not embrace, the idea that eventually they will die. Naturally, as chaplains we need to have accepted that for ourselves as well. We need to speak out in our hospitals, nursing homes, pulpits, and our personal lives to ensure that people complete advance directives so that their wishes can be honored at the end of life. Families deserve to savor any remaining time with their loved one and not spend that precious time fighting over whether or not to prolong life by artificial means.

The Rev. Martha R. Jacobs, BCC, is the Managing Editor of PlainViews. She is an APC Board Certified Chaplain and is currently pursuing her doctorate of ministry, focusing on the attitudes of clergy around death and dying.