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End-of-life decisions tough on families
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| By: John M. Hardin |
April 16, 2008 |
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My family made a difficult decision a couple of weeks ago. We allowed my wife, Nancy, to die. She died 45 days short of 20 years living with a progressive dementia, like Alzheimer's.
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When Nancy entered the nursing home 11 years ago at age 45, the nursing home asked if Nancy was under a Do Not Resuscitate order. We said, "Yes." We'd made that decision a couple of years earlier, when her dementia became worse and the quality of her life began to decline. But no one at the nursing home ever asked us about her medications. In her case, it was only medications that kept her alive. But there are also other medications to consider.
Another consideration was Nancy herself. She had made it clear when her brain still worked that she never wanted to be kept alive in a state of dementia. But that was back before people ever talked about living wills or power of attorney for health care. Also, Nancy's behavior after the dementia started was periodically violent and unmanageable. She was often sad or full of anxiety. From the beginning, she had a poor quality of life half of the time and it only got worse with time.
My family finally started talking about the use of antibiotics last summer when we thought Nancy was going to die. She had refused to eat, drink or take her meds. The doctor said he thought she was giving a clear message that she was done living. The nursing home reported the doctor's comments and we said we agreed with him. We decided to do nothing. We had lots of support in our difficult decision. The staff at the nursing home was practically overjoyed. They were hoping we would make this decision because they felt it was the humane one. At that point, the issue of antibiotics was finally raised. We decided that they would not ever be used again. I have since learned that some families have decided to withhold water pills in similar circumstances.
Then, one day Nancy awoke and started eating and drinking. Now, we would eventually be confronted with the difficult decision that we had made.
The real question is, "Why don't we let people with dementia die when they should?" Or, perhaps better, "Why do we keep people with dementia artificially alive with drugs and machines?" There seem to be three answers to this question.
The first answer is another question. When or how do you reach the point of being ready to let go of your loved one? Everyone has a different letting-go point. A few people can never let go, and they are not considered in this argument. Those who do reach that point, do so for many reasons. They might be worn out from caregiving. They might have gotten on with their lives, while their loved ones' lives have gone backward toward being a baby again. They can't cope with the guilt they feel for not visiting their loved one more often. It just makes sense to let their loved one experience the logical conclusion of life. There are probably more reasons, but there is a simple point in time that works for most people: our loved one no longer knows who we are or where they are or what year it is. This is the logical point at which making this decision most people feel comfortable. There are other points, but I will not go into them at this time.
The next answer is precedent. We don't know anyone who has ever made this choice. My family knew that we had the right to make this decision, but how do you deliberately let your loved one die? What would the people at the nursing home think? Why doesn't anyone ever talk about it? Finally, how did we get into this predicament?
We need to move back in time 65 years. Death used to be the simple solution to old age and cruel diseases like Alzheimer's. It is only since 1943, when penicillin became available, that families have begun confronting these end-of-life decisions. Since then, many other drugs have been invented to interfere with the natural course of things. The time has come for us to talk about what is the natural course of things. The time has come for us to say it is not only okay, but it is natural to choose not to use artificial methods to extend the lives of people who no longer know who or where they are.
The third answer is that it takes a lot of strength and courage to make the decision to let your loved one leave this world. It is difficult to step back and let God or nature take control. We are so used to doctors making decisions and providing solutions, that we have lost touch with the realities of life. And the biggest reality of life is death.
Death is foreign to us because we have pushed it out of the home and into the hospital or nursing home. It is time to gain an understanding of it again, especially as it relates to dementia. One of the most important things to understand surrounding the decision to allow God to decide the fate of your loved one is palliative care.
Palliative care is care that makes sure your loved one doesn't suffer. Terminal cancer patients, for instance, get all the morphine they need to control the pain of cancer. When Nancy's oxygen levels declined as a result of her pneumonia, oxygen was provided so she didn't struggle for air. We were about to add morphine to make sure she wasn't uncomfortable, but she died first. She was finally at peace.
I would like to propose a new approach to nursing home admittances, especially when there are no living wills or power of attorney for health care. In addition to asking if the loved one is DNR, they should also be asked if they are DNM (do not medicate with new drugs) or PCO (Palliative Care Only). Then, and only then, will we return to the normal course of things that existed before 1943. Then and only then will we finally address the issues surrounding dementia with a more realistic, kinder approach.
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©The Chetek Alert 2009
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Karen Jacobson |
Apr, 17 2008 |
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Thankyou, Mr. Hardin and may I offer our deepest sympathy. Our family is in this journey now. You have given us a very good point to start our decision process. My motherinlaw suffers from Alzheimers. This winter she quit knowing us. There really is no decision to make other than to not do any more life extending cares. Our decision is complicated by the fact I am a critical care nurse and I do know all that could be done to extend her nearly 90 years of a good life. My husband does not have siblings. The decision is his. You have helped him more than I can ever tell you. Our country needs dialog now, in our churches and in our medical schools, and on our streets.Maybe we need to relearn what it means to give it to God. Thankyou.
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