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James L. Holly, M.D. |
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| James L. Holly,M.D. |
| October 28, 2005 |
| Your Life Your Health - The Examiner |
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When choices make a difference, we have to live with the consequences of those choices. Frequently, choices only temporarily change our circumstances, but in that time, we can be beleaguered with the reality that things could have been different, but for our choices. Yet, even when the choices were clearly correct, we can still be beset with thoughts of "what if."
This ambiguity is often experienced in end-of-life decisions and/or in choices which result in the end of the life of a loved one. Many years ago, a very dear friend was diagnosed with cancer. There was no thought of not treating this young man aggressively. However, he did not survive the immediate post-surgical period due to no one's fault. For the next six months, I lived with the knowledge that he would have been alive and with his family if we had not operated on him. His quality of life would have deteriorated and his pain would have been severe, but he would have been alive beyond the time of his death.
Because of the promise that we shall all meet death eventually, all of life and all of our interactions with our loved ones should be spent preparing for their loss. That does not mean that life is spent consciously thinking about the loss of our loved ones, but it does mean that we should intentionally prepare for it. Therefore whether we are surprised by the loss of a loved one, or we are relieved by their death because of the agony in which they lived, there are no unresolved issues which haunt us.
Seeking a Good Death
When I was in my second year of medical school, my father-in-law fell ill. I told my Dean, "I must leave school for two weeks." Having just started a three-week course in hematology, he said, "You cannot pass this course if you are gone for 2/3rds of the lectures, but if you must go, you must." As my wife and I drove home, I told her that we were risking failure in an important course for only one reason. Inevitably, her father's illness would result in his death. I told her, "We are going to be with your family so that when the time comes that we lose your Father, we can both know that everything which could have been done, or which should have been done, was done. Some years later, when her father did pass away, we were sad and we grieved, but we had the joy and knowledge that when he had needed us, we were there. Our lives had been spent preparing for what we did not want to happen, but which is inevitable in everyone's life. (By the way, I passed the course.)
American Indians often spoke of "seeking a good death." While they meant a brave and noble death in a worthy cause, this concept could also apply to life being lived in such a way that death is not traumatic due to unresolved conflict, guilt or unspoken affection. Very often, dealing with end-of-life issues are complicated by what we did not do while the person was alive and well, rather than by what we must do in response to their illness and deterioration.
Very often, we try to deal with guilty by blaming ourselves or others. We try to deal with unresolved conflict by bitterness and anger. We try to deal with our failure to say what we should have said by focusing on the failures of others. All of these are dysfunctional and destructive responses to life and to our loved ones.
Foundational Principles:
Recently, my family and I made end-of-life decisions for my father. Without any doubt, if we had chosen differently, my father would be alive today, three weeks after his death on October 7 2005. Yet, I remain confident that we did the right thing. What I would like to discuss here, in the context of my personal experience, is how families can and should make decisions about end-of-life matters.
There are three foundational principles which govern all considerations about the end-of-life decisions:
- Nothing should be done to or for a patient which would directly and intentional cause their death.
- Anything which is done to or for a patient must be legal.
- Just because there is something which can be done does not mean that it should be done.
In my father's case, if we had chosen to put a feeding tube in his stomach and given him artificial hydration and nutrition, he would have continued to function biologically. There is no doubt that he would be alive today. The question which we had to answer was, "Does this give him a quality of life which is valuable to him and is this what he would want?" No doubt, he had established that he did not want artificial life support in the form of a ventilator, but what about hydration and nutrition?
In my judgment, nothing must ever be done which actively results in the termination of life, i.e., no medications or other measures are to be given which results in a person's death. So called "assisted suicide," which is without doubt homicide, should remain prohibited. Yet, this prohibition of actively terminating a person's life does not mean that artificial steps and/or heroic and extraordinary measures must be taken to maintain the biological functions of a person's body.
When The Quality of Life is Over
I remember the moment when I realized that my father's life, as he knew and enjoyed it, was over. There was nothing I could do about that and it was no one's fault. It was a reality. For the eighteen months following that realization, my family and I walked a careful line between support of my father and not wishing to prolong his ordeal for our benefit.
This addresses the most critical aspect of end-of-life decisions. They must be made solely and exclusively for the benefit of the person dying and not for the family. Often, in the emotional trauma of the potential loss of a loved one, decisions are made which are the result of the above mention emotions and experiences: guilt, unfinished issues, unresolved conflicts, sometimes financial reasons and a myriad of other concerns. None of these are valid foundations for good decision making about end-of-life measures.
Cultural biases can complicate end-of-life decisions. Some cultures prepare people poorly for the death of anyone, particularly a loved one. As a result, irrational decisions are made based on maintaining the biological function of the human body no matter what the cost is to the one who is being treated. Those making the decisions about such matters must recognize that one of the mercies of life is death does not approach the elderly as a terror but as a release. As our body deteriorates, the fear of death loses its intensity and eventually the acceptance of one's mortality allows the embracing of death to be a positive experience, particularly when surrounded by loving, supportive family and friends. To mechanically and/or heroically preserve life in the face of the inevitable is neither loving nor kind, but it can be selfish and self-centered.
Guilt very often contributes to the complex end-of-life decisions we make for our loved ones. Whatever the basis of guilt, it is not absolved by interminably prolonging the bodily function of a loved one. Guilt is healed by forgiveness, either of others or of self. Rather than asking forgiveness or giving forgiveness, we destructively try to deal with guilt by bitterness or blame. This never works but only escalates into an emotional crisis which is self-destructive and destructive of any hope of resolution of the conflict which caused the guilt. End-of-life decisions made in the presence of guilt only perpetuate the problem.
Unresolved conflicts can also result in making end-of-life decisions in which we try to meet our own needs rather than the needs of the one who is dying. Some how, it is often imagined that if we just keep someone alive a little longer; if we make demands upon science and medicine, that this substitutes for our having not protected and nurtured our relationship with the person who is dying. Love is sometimes interpreted as the one who shouts the loudest, or gets the angriest at those who are doing their best for our loved ones, but this never works for long.
When my father first fell ill, I sat by his bedside and wrote about him. I thought he was going to die. I had said all that I needed to say. There were no unresolved conflicts; there was no unhealed guilt. Yet, I sat and wrote and wrote and wrote about my feelings about this wonderful man. Then I thought - and this was in a humorous moment - "Ah, my father's illness must be someone's fault. But whose?" First, I thought, it must be his but when he became addicted to cigarettes in his youth, no one really knew of the destructiveness of tobacco. At least no one had told the public. Second, I thought, it must be my mother's fault, but the reality is that no one could have taken better care of my father than she did all 64 years of their marriage. Third, I thought certainly my father's terminal illness must be the doctor's fault! Alas, my father never went to the doctor, but surely then it must have been that the doctor refused to see my father. Unfortunately, I could not blame the doctor because my father never tried to see him.
In those quiet hours, I peacefully enjoyed the presence of my father realizing that he had lived a long, productive, honorable life. His illness was no one's fault really. It was the natural summary of a life well spent with some mistakes, but nothing needed to rob me of the joy of having had this man as my father. My father had not consciously sought a "good death," but he had found one because of the honorable, honest, hard-working, manner in which he lived his life.
We must all face end-of-life decisions. In reality, every day we live marches us to that moment. A man I greatly admired once said, "Make sure that when it comes time to die, all you have to do is die." That is a good death. All issues resolved; all relationships healed; all the words spoken. Idealistic? Yes! Possible? Absolutely.
As you deal with end-of-life decisions for a loved one, do it for them, not for yourself. Remember, it is your life and it is your health.
For more on end-of-life decision making, see the four-part series on a Living Will listed below.
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