Having spent the last nineteen years caring for dying patients I cannot tell you how many families have been blind sighted by the death. A healthy individual has a major stroke or massive heart attack and now lies unresponsive in an intensive care unit. The family is now forced to make decisions about end of life care. Should the patient remain
on a ventilator? Should a feeding tube be placed? These questions are totally overwhelming and devastating to the family. Often times I have been told by the family, “we just never talked about this.” In my years of experience, I have come to believe that often times the discussion does not take place, because loved ones attempt to protect one another. The conversation is avoided because it is just to difficult to initiate and families do not want to upset one another. Yet, we all hear from an early age that there are two things in life that we can be sure of: Death and Taxes!
When we speak of end of life care many of us see vivid images of Terri Schiavo. She was a young woman who suffered a cardiac arrest due to heart failure and subsequently suffered severe brain damage. She required total care and was not able to speak. A feeding tube was placed to supply nutrition. Seven years later her husband asked that the feeding tube be removed and that she be allowed to die a dignified death. He believed that she had no quality to her life and if she could speak she would choose to no longer exist in her vegetative state. He based his belief on a conversation that he and Terri had prior to her tragic collapse. Her parents were horrified at this suggestion and a battle ensued. This battle lasted for eight years and went all the way to the Supreme Court. The decision was finally made to discontinue the feedings and allow her to die in a hospice facility surrounded by her family. Her family endured years of turmoil and suffering. Her death was played out in the media and brought into our homes. A time that should have been private and respectful became publicly dramatized and hostile. This could have been avoided if she had advance directives in writing.
With advancements in the diagnosis and treatments of acute and chronic diseases, patients are spared impending death only to experience subsequent prolonged death. “Technological advancements in aggressive medical management at the end of life have led more Americans to fear how they die rather than death itself ” (Stanley 5). To combat this problem a lot of education needs to be done informing the public about end of life care. This is what Dr. Snyderman was attempting to do when she facilitated the program on public television. The first step is to raise public awareness!
A group called Aging with Dignity has written a document called Five Wishes. This document addresses advance directives in lay man terms and does not use medical jargon. It can be easily understood by the average individual and talks about simple things such as moistening the patient’s lips to provide comfort. This is a wonderful tool to initiate conversation with our families. The group has a web site where the documents can be purchased. I purchased a copy for each of my family members, my parents and siblings. We then sat around as a family and talked about this. Being a nurse I was able to answer some of the medical questions that arose. It is so important to have advanced directives but, equally as important to communicate your wishes to family members. I have seen numerous situations were a patient has taken the time to fill out advance directives and name a healthcare agent but, the healthcare agent is unaware that they have been given this role. The importance of communication is crucial; communication amongst family members and with your healthcare practitioner, as well. After my family members completed Five Wishes we each supplied our physicians with a copy and we spoke to our respective physicians about the document.
“As a society we can strive for a vision in which people are born into the welcoming arms of a loving community and die from the reluctant arms of a loving community.” This was so eloquently stated by Dr. Ira Byock who is known as the guru of end-of-life care. If we think about a birth, a tremendous amount of thought goes into the birth of a child. Such things as choosing a name, selecting a physician and a state of the art maternity center are just a few of the topics considered. Prospective parents take classes on the birthing process and begin to think about parenting techniques. Numerous books are read by the parents to be, in preparation. Many feel that they have one shot at a good birth and they want to do it right. We can also think of death in the same way, we have just one shot at it! Wouldn’t it be best to have a voice in the way your death is played out? Making our wishes known is a gift that we can all give to our families. Getting things in order is a loving gesture and a way to ease the burden of family members. Remember, we have just one shot at this, lets get it right!!
Works Cited
Beckstrand, Rena. “Providing A Good Death: Suggestions for Improving End-of-Life Care.” American Journal of Critical Care January 2006: 38-45
Byock, Ira. “The Ethics of Loving Care.” Health Progress July-August 2004
Stanley,KJ. “End of Life Care: Where are we headed?” Breast Cancer Care 1998: 3-8
