I love the story of two old fellers who had grown up together and spent many of their days at the park, playing checkers and talking about things that were important... like baseball and death. Baseball because they loved the game. Death because ...well that's just something old guys think about. They had played ball together in their younger days and watched it as often as they could as grown men. Shortie was a catcher and Joe threw a mean fastball.
One day they made a pact. They promised that whoever died first would come back to tell the other if there was baseball in heaven. Not long after they shook on the deal, Shortie died. And he kept his promise. The night following his departure, he showed up in Joe's bedroom with good news and bad news. “The good news,” he said, “ is that there is indeed baseball in heaven.” “So what's the bad news?” Joe wanted to know. “You are pitching tomorrow night!”
I like that story because it's funny and because these two guys were willing to do something that most of us do not want to do: talk about death. And, although nobody honestly thinks anyone is going to get out of this alive, we don't want to think about it, much less talk about it with those we love. It's almost as if we are afraid that bringing it up with hasten our departure.
But as a pastor, avoiding the subject is not an option. I am blessed with many opportunities to walk through the valley of the shadow with patients and their families. But you know what? Funerals are not the biggest challenge. Nope, the biggest challenge is in the intensive care unit when a family faces the awful decision to discontinue life support on a family member who has failed to or refused to make their wishes known. Over and over again, I have seen unnecessary suffering caused by our unwillingness to prepare for our own deaths.
A recent experience has caused me to begin a crusade to encourage everyone to think about how they want to be treated at the end of their days. A ninety-year-old member of my congregation was in the hospital after having surgery. I visited with her and as a part of our conversation I asked if she had let her daughter know how she wanted to be cared for in the hospital. She insisted that they had talked about everything and her daughter knew exactly what she wanted. I felt relieved until I talked with her daughter who told me that her mother refused to discuss anything about it. “She wants me to decide and I don't want to. I want her to do it!”
Her mom was only out of the hospital a few days before the ambulance picked her up again. The daughter was with her when the nurse began to ask the questions they are now required by law to ask. “If your heart stops or you stop breathing, do you want to be resuscitated?” The patient turned to her daughter and said, “Just go ahead and kill me!” She died a few days later.
So I am begging you. Don't put the people you love the most in the terrible position of having to feel like they are killing you. Please consider all your options, talk to your family and your doctor, and put your preferences in writing. Then, when the moment comes, your family can be completely confident that they are doing exactly what you want them to do. I can assure you, it will be a gift you are giving those you love: A gift for which they will forever be grateful.
Now I know this is not an easy thing to do. And the more I have investigated, the more complicated I have learned it has become. And the complications are a relatively new factor in our lives.
Until antibiotics were invented in 1943, most older folks got sick and died at home of what were called “natural causes.” In fact, pneumonia was called “the old man’s friend” because it spared the infirm elderly a long, painful death. With the discovery of these drugs and a host of other medical procedures, our doctors have new tools for allowing our bodies to heal. But these advances have brought with them many difficult issues for families to face. So much has changed in the medical field during our lifetimes. It blew my mind to learn that it was in 1966 that the National Academy of Science first made the recommendation that the medical community learn a new life saving procedure called Cardiopulmonary Resuscitation (CPR.) In 1999, Texas law began to require hospitals to ask the patient if he or she has completed an “Advance Directive” stating clearly how they want to be treated. But fewer than one third of us have completed this important document.
If our grandparents had suffered an accident on the farm as children, their parents would never have been asked if they wanted to remove life support. None of those procedures existed. But today, if a person is in a car wreck and suffers brain damage that puts them into a “persistent vegetative state,” their bodies can be kept alive with breathing tubes in their lungs and feeding tubes in their stomachs. Their families then are forced to make the awful decision to remove life support or to allow them to “live” what most of us would agree is no life at all.
When the U.S. Supreme Court ruled in the Nancy Cruzan case, a national right to die was established. Nancy Cruzan was 25 years old when her car spun out of control and went into a ditch. The impact stopped her breathing. She was diagnosed as being in a persistent vegetative state and the doctors said she could live another 30 years that way. Her parents didn’t want her to live in that state and wanted her feeding tube removed, but the hospital refused. The family prevailed in the lower court but the Missouri Supreme Court reversed the lower courts ruling, saying that her father could not make that decision. The case went all the way to the U.S. Supreme Cour,t and in 1990 the court upheld the Missouri Supreme Court ruling that not even the family could make legal choices for an incompetent patient. The U.S. Supreme Court said only the person themselves can make this decision. No one else can make the decision for you. Even your guardian cannot make that decision for you. Only you yourself can make decisions regarding your care.
They did say that if the family can present evidence, clear and convincing evidence, of what the patient would have wanted, then the doctors can follow that patient’s desires. So they sent the case back to the lower court and Nancy Cruzan’s friends and family went on the stand and presented evidence that she had very clearly stated that she never wanted to live in a persistent vegetative state. In the face of that evidence, the lower court ordered her feeding tube removed.
Nine years later the Texas legislature passed The Advance Directives Act, which set forth the legal language which basically gives you and me the right to refuse medical treatment under two circumstances:
- If, in the judgment of my physician, I am suffering with a terminal condition from which I am expected to die within six months, even with available life-sustaining treatment provided in accordance with prevailing standards of medical care; and
- If, in the judgment of my physician, I am suffering with an irreversible condition so that I cannot care for myself or make decisions for myself and am expected to die without life-sustaining treatment provided in accordance with prevailing standards of care.
So we each must answer these questions: What do you want the doctors to do if you are “suffering with an irreversible condition so that you cannot care for yourself or make decisions for yourself and are expected to die without life-sustaining treatment?” Would you want to be kept alive as long as possible? Or would you want to discontinue treatment and only receive comfort care, keeping you as pain free as possible until you died a natural death?
As I was studying these issues, an important book came into my world written by two sisters. Dr. Jeanne Fitzgerald is an emergency room physician and her sister, Eileen, is an attorney. They draw on two lifetimes of experience helping families answer these very difficult questions and have some suggestions that can help us make the best choices at the end of our lives. Their book, A Better Way of Dying: How to Make the Best Choices at the End of Life, introduces a very helpful concept that they call “The Compassion Protocol.” Their “Contract for Compassionate Care” gives us the opportunity to be much more specific about the way we want to be treated at the end of life. In addition to the wording in the Directive to Physicians required by Texas law, they encourage us to state clearly our desires should we have an advanced progressive illness, become permanently unconscious, experience persistent extraordinary pain, and/or suffer from dementia.
Based on their ideas, here is the way I have worded my advance directive:
“If I live to an extremely old age and my body is beyond repair, I do not want to be kept alive. I want to take advantage of the next exit event, whether it be pneumonia, infection, heart attack or cessation of breathing. Do not resuscitate me and do not take me to the hospital or give me any medicine which would keep me here. Please keep me comfortable and conscious with pain reducing medications.
“If for any reason I am unable to tell you what I want, assume that on the inside I am screaming at you, ‘Please let me die!’
“If I suffer from any of the following conditions, please cease all curative care and provide only comfort care:
* I can longer recognize or interact with my family and friends.
* I can no longer respond to commands or requests.
* I am in severe and untreatable pain.
* I can no longer feed myself.
* I have to be on kidney dialysis.
* I must use a breathing machine or feeding tube.
* I cannot take care of myself and need someone to care for me 24/7.
* I can no longer control my bowels.
“If I begin the long, slow decline into dementia due to Alzheimer’s, let me take advantage of any possible exit event and die a natural death, without a trip to the hospital for pneumonia or other curable illness. Do this even fairly early in Alzheimer’s, while I am still able to carry on coherent conversations at times and still recognize family members most of the time. I do not want to live when my mind no longer works. Do not to rob me of an exit event early in dementia that could save me from a year or two (or five or ten) in a nursing home or at home when I would be a burden to my family. If I begin to refuse food and water, naturally as the disease progresses, stop asking me to eat or drink, and stop reminding me to do so. Please place food and water by my bedside three times daily, but without interference and let me decide whether to eat or drink.”
Now let me emphasize that I am not encouraging you to make the same decisions that I have made. What I am encouraging you to do is to do your homework and make these very difficult choices yourself. Consult with your doctor and with those who love you. Do the paperwork required. Choose and designate a Healthcare Decision-maker and give them a medical power of attorney so that they can insure that your desires are followed.
Please don’t force your family to make these decisions for you. Give them the last gift you will ever be able to give them, the gift of knowing what you want. Knowing that you love them so much that you wanted to relieve them of the burden of making those decisions for you.
Eston Williams, Pastor