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The Hope for a Good Life (And a Good Death) April 24, 2004 The Reverends Roger Fritts and Leslie Westbrook Cedar Lane Unitarian Universalist Church Bethesda, Maryland Leslie: Roger, come on, let’s fill out these forms now. Roger: Look, I just said I would get to it later. Leslie: That’s what you said last week. Roger: Well, I am very busy. I have a lot of important responsibilities. Leslie: Like reading the newspaper? Roger: This is part of my work. I need to scan the paper each morning to see if any members of the congregation are mentioned. Leslie: So what are you reading right now? Roger: An article about the Michael Jackson Trial. Leslie: You will not find any church members mentioned in it. Roger: Look, I will get to the forms on Monday, that’s my day off. Leslie: You said that last week. Then when Monday came you talked me into going to lunch at the French bistro and then going to a movie. Roger: And admit it: The kids were in school, the food was good, we had ice cream for desert, the movie was funny, and I was charming. We had a wonderful day. We are living the good life! Leslie: It was nice. But we have to face the fact that someday we will die. Roger: Boy are you a bunch of fun! I know we are going to die, but right now I want to focus on living the good life. It is like the joke Woody Allan told. Two elderly women are at a Catskills mountain resort, and one of them says, “Boy the food at this place is really terrible.” The other one says, “Yeah, I know, and such small portions.” That’s essentially how I feel about life. Full of loneliness and misery and suffering and unhappiness, and it’s all over much too quickly. Leslie: Did Woody Allan say that before or after he married his step-daughter? Be an adult. We have responsibilities. We’ve got the kids. Put down the newspaper and fill these forms out. It will only take a few minutes. Roger: All right. Ok. Let me look at this. . . . Why do they call it an Advance Directive? Is there an un advance directive? Are you sure this will only take a few minutes? Leslie: It depends on how much you argue. Just go to Section 1. Roger: I, Thomas Roger Fritts, residing at 3709 Farragut Ave., Kensington, MD appoint the following individual as my agent to make health care decisions for me. Full Name, Address, and Telephone number of Agent . . . Do you know Congressman Tom Delay’s address? Leslie: I will put your name down and you can put mine down. Roger: If this agent is unavailable or is unable or unwilling to act as my agent, then I appoint the following person to act in this capacity. Lets see, which of our three children should we saddle with this responsibility? Leslie: Put all three down in order of age. Roger: You’re going to trust Rachel to make health care decisions for you, after the way you yelled at her last night to do her homework? Leslie: Better her than Tom Delay. Besides, if this goes into effect it will be years from now . . . and by then she will be thanking me. Roger: Don’t count on it. You seem to remember all MY faults. Leslie: Including your tendency to procrastinate. The authority of my agent is subject to the following provision and limitations . . . just write none. Now move to Section 5, and initial the first option.
Roger: Ok. And the rest is straight forward. We can get some folks at church to witness this. But don’t we need to get it notarized? Leslie: The instructions say we don’t need it notarized. Roger: So we are done. Did you notice in the Kids Section of the Friday newspaper? Fred Bowen predicts that the Wizards will beat the Bulls in the play offs. Leslie: We are not done. Look at page three. Do you want them to administer nutrition and hydration artificially? Roger: Would the nutrition include chocolate ice cream? Leslie: I believe most hospitals and extended care facilities use nutritional drinks like “Ensure” or “Boost.” But you don’t taste it. It goes directly into your stomach. Roger: This feeding tube stuff is new, right? Leslie: Well, I read in the newspaper that the ancient Egyptians used reeds and animal bladders to supply patients with a mix of wine, chicken broth and raw eggs. And in 1793 a healer pushed a hollow whale bone covered with eel skin down the throat of a man. The healer fed the patient jelly, eggs, milk, sugar and wine. However, the ability to significantly extend life through feeding tubes for a large number of people is only about 25 years old. Prior to the invention of plastic, antibiotics, and effective antiseptics, it would have been very difficult for technology like this to be used to extend the lives of large numbers of people. Today one estimate is that over 300,000 people in the United States use feeding tubes each year. Still the doctors who created the technique used to insert feeding tubes into patients said the procedure has gone far beyond its original purpose of helping infants and children who could not swallow. They never intended the tubes to be used on patients with no hope for recovery. But it is used. One third of nursing home patients with dementia are on feeding tubes. Some must be restrained and sedated to keep them from removing the tube. So initial the first statement and lets move on.
Roger: “If I am in a persistent vegetative state . . .” Why do they say “persistent vegetative state”? Leslie: This is to insure that I will not take your popcorn away when you’re watching television . . . Actually an international committee of medical professionals recommended that the terms ‘persistent’ and ‘permanent’ be dropped from the diagnosis of ‘Vegetative State’ since these words confuse prognosis with diagnosis.
Roger: Isn’t this insulting to vegetables? After all, a growing carrot is interacting with its environment. Leslie: The term “vegetative,” is disliked by families and many doctors. Still the same international committee decided that vegetative is so ingrained in medical and legal terminology that it would be difficult to introduce new terminology at this stage . . . Lets get back to the forms. Initial the first choice. Section Three “If I have an end-stage condition etc, etc, for which, to a reasonable degree of medical certainty, treatment of the irreversible condition would be medically ineffective . . . Roger: Wait a moment. Isn’t this the heart of the issue? How can you be sure that my vegetative state is irreversible? Leslie: It is a grey area. Medical science has a clear definition of what it means to be brain dead. It means no spontaneous breathing, no brain stem reflexes, and flat brain waves. But there is no clear definition of “vegetative state.” The international committee of medical experts wrote in 1996 that there are no tests which can confirm whether the patient has any “inner awareness.” Therefore, assessments are best based on a series of behavioral patterns. The diagnosis of the cognitive status needs to be made over a period of weeks and should not be made in a short single assessment. This was the debate in the Terri Schiavo case. Because there is no clear definition of “vegetative state,” her parents believed that she was still alive. Roger, if this ever happens to you, you are going to have to trust that I find good doctors to evaluate your situation. If after several weeks you are still in a vegetative state and the best neurologists we can find say that you will not recover, don’t you want to be allowed to die? Roger: Yes. And I am comfortable saying that because I suspect that each of us has a soul that survives the death of the physical body. Years ago I was a student chaplain at Presbyterian Hospital in San Francisco, observing open heart surgery. When they stopped the patient’s heart and started pumping blood through the heart-lung machine, a nurse who was also observing the operation turned and asked me, a student minister, “When the heart is stopped, and the blood is pumped by a machine, where does the soul go?” Leslie: So what did you say? Roger: Well neither my class in New Testament theology nor my class in New England Transcendentalism had covered this topic. I said I did not know where the soul went. Then I said perhaps the soul is located in the brain, not the heart. Leslie: Do you have any evidence of this? Roger: Well, no, but there is an empty space in the center of our brain. This seems to me to be the logical place to locate the soul, which I would define as a non material life force. Leslie: Do you have any proof of this? Roger: None. Leslie: And what do you think happens to this soul when we die? Roger: My theory is that our soul enters another dimension. According to string theory, there are between 10 and 26 different dimensions. My theory is that one of those dimensions is where our souls go when our body dies. Another dimension is reserved for the socks you lose in the wash. Leslie: If you washed your own socks, maybe they would stay in this dimension. Roger: My point is that I have been thinking about the location of the soul in the human body ever since that nurse asked me about it when we were watching open heart surgery. So I came up with this theory. Twenty-five percent of the people who have near death experiences also describe out-of-body experiences. Remember that three hundred years ago the French Universalist George De Benneville nearly died and wrote that he was separated from his body and saw people occupied in watching his body. These out-of-body experiences suggest that we do have a soul and that it leaves the body when we die. Leslie: So you are willing to let me say no to a feeding tube for you and turn off your respirator, because you believe your soul will live on after you die. Roger: That is my best guess. I think God or the Spirit of Life has created human beings for the purpose of gaining knowledge about the nature of life and the universe. Each of us should try to advance that knowledge, and try to pass human knowledge onto the next generation. Future generations may prove the existence of the soul. They may discover proof that the soul survives after death. Meanwhile, each of us must make our best guess. Leslie: Was she attractive? Roger: Who are you talking about? Leslie: The nurse with whom you were watching the open heart surgery. Roger: Yes, I thing she had blond hair. Leslie: Did you ask her out? Roger: Of course not. I was saving myself for you. Leslie: And you were painfully shy. Roger: That too. Leslie: Alright, lets finish this, number 4, page 4. I direct that, no matter what my condition, medication to relieve pain and suffering not be given to me if the medication would shorten my remaining life. Roger: Not me. I have a low tolerance for pain. I want to be given all available pain killers.
Leslie: Well, although this form comes from the State of Maryland Office of the Attorney General, sentence 4 on page 4, they do not give you a place to say that you want pain killers. You could cross out the word not in sentence 4, initial next to the cross out and then initial the line next to 4. Roger: Yes, and I am going to write “I want pain killers” so there will not be any doubt. Leslie: “Five. I direct that, no matter what my condition, I be given all available medical treatment in accordance with accepted health care standards.” This is so open ended it could result in your being kept on a feeding tube or a ventilator for years. I suggest that we each cross it out. What are you writing on page 3, Section 6? Roger: If I am pregnant, . . . I instruct my family to sell my story to the National Inquirer. Leslie: Right. Section 7 page 4 . . . do you have any other instructions? Roger: After I die, I would like my sermons published in a book entitled Sundays with Roger. You know, advance directives don’t always work. Leslie: What do you mean? Roger: Doctors, hospital administrators and nursing home staff are afraid of getting sued for malpractice by family members. When my sister died last summer I was not with her. When I got to the nursing home, I asked to speak to the staff that were with her when she died. I asked them to describe in detail what had happened. They got very nervous, and finally one of them said, to me “She had signed a ‘Do not resuscitate.’ order.” I realized that they were afraid I was going to accuse them of doing something wrong. “Yes,” I said. “That’s right. You did the right thing. She did not want to be resuscitated.” They relaxed and started to tell me the details of what had happened. However, if medical staff feel that there is disagreement, within a family, they may continue medical interventions. For example, if a sick sister signs a “Do not resuscitate order” but her brother disagrees, they may follow the brother’s wishes, trying to avoid a law suit. Advance Directives may not work, if the surviving family members disagree. An Advance Directive cannot prevent a court challenge by a determined family member. Leslie: But, if everyone in the family agrees, then these Advance Directives do work. Roger: As long as the other family members know the Advance Directive exists and they can find the papers. We need to create a file at home called: “In the event of our illness or death” and put this in the file, along with copies of our wills. After we create this file we need to show it to the kids. Leslie: That’s a great idea. You should do that right now. Roger: I will get to it on Monday. Leslie: On Monday I am sending your socks to another dimension. Roger: Ok. Here’s the deal. On Monday I will create the death file, you will do the laundry, and when we are finished we will have lunch at a nice restaurant, and go down to the National Gallery. I want to see the Toulouse-Lautrec exhibit. Leslie: That sounds wonderful. |
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