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Real-life experience with end of life care
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Posted by caroline Fri Mar 25, 2005 11:26:00 PST
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0 responses 0 comments Even though I am neither a physician or an attorney, I have some definite feelings based on real-life experience about the Terri Schiavo case and end of life care.

The Terri Schiavo situation caused emotions to erupt in thousands of people who have strong feelings about how they hope their lives will end. Terri was a young woman when she suffered the heart attack that rendered her helpless. Fifteen years ago, her husband said goodbye to her. It appeared they had a good marriage, but only they know that. Not even her parents know what went on behind closed doors.

Unfortunately, Terri and her husband had not prepared a living will, which includes a Durable Power of Attorney for Health Care. Not many young couples do. However, according to her husband and two other witnesses, they had discussions about what they would want to happen if they were ill or injured so severely that their quality of life was destroyed. According to her husband, Terri would not have wanted to live like this. It is totally understandable that her parents would not want her to die. Who wants to bury a child? No one. But who would want a child to live the way Terri has lived for the last 15 years? I hope no books come out of this. I hope the only lessons learned are lessons about living wills and wishes for end of life care.

Unfortunately, not every good doctor is a good doctor when it comes to end of life issues. Doctors are trained to save lives no matter what. That is what their careers are all about and they take it very seriously, as well they should. However, living wills and Durable Power of Attorney for Health Care documents were created for the dying, not the healer, and they should be honored. In the absence of a living will, then the person closest to the sick and dying should be allowed to make the decision about feeding tubes and care if the patient can't. It's very, very important to trust implicitly the person to whom you give the decision-making authority. It is also very, very important to have several conversations with the person drawing up the legal document.

My father died at age 91. He would probably still be alive today in a vegetative state in a nursing home sustained by a feeding tube if I hadn't stood up to a doctor who made me feel like a murderer. My father had pneumonia, broke a hip and suffered from dementia in the last three years of his life. The last visit to the hospital he was totally unresponsive and in a great deal of pain because of a bed sore that the hospital took responsibility for. They simply did not turn him. Even hospitals are not always the best place for a terminally ill person to be. I asked the doctor for hospice care and his reply was, "Your father is not terminal." Common sense said to me that my father was terminal -- imminently terminal. The doctor further said, "I cannot rehabilitate your father if you do not allow me to treat him." I asked him if he could rehabilitate my father so that we could have a conversation, so he could walk, so he could talk and eat and smile. He admitted he might not be able to do those things but he could "keep him breathing." He wanted to insert a feeding tube so that he would have "time to consider options." I refused. The doctor stormed out. I was left in a hospital room with my dying father, not knowing what to do. I was the "agent" on the Durable Power of Attorney for Health Care. My father signed it and he trusted me. I knew that. My father and I had the privilege of several conversations about his desires for end of life care. He clearly stated on several occasions that he did not want to be kept alive by artificial means if there was no chance of a quality of life that would resemble what he had experienced for most of his 90 years. We had conversations during which we laughed and we reviewed life and we reminisced -- several times. I knew exactly what my father wanted. These conversations began when he was about 75. They should have started several years before that but, fortunately, he lived a long life and we were able to have the conversations. My suggestion is that after reading this letter, everyone sit down with a trusted loved one and discuss this, no matter what your age.

I stood in my father's hospital room, by myself, and felt totally helpless, alone and scared. I prayed and then I kissed my father and asked a nurse at the hospital what I should do. She asked the doctor. He said, "Send him to a nursing home to die then." He died after eight hours in a nursing home.

There are lessons to be learned here:

1) Doctors, honor living wills. Consider your profession one of compassion as well as healing. It's not easy to watch a patient die, but when there is no hope, tell your patient's family.
2) People, arrange for a living will with Durable Power of Attorney for Health Care. Pick your agent well. Have discussions with that person when you are lucid.
3) Agents, consider your responsibilities. Talk about them with your loved one. Can you do what is needed? Being an agent on a Durable Power of Attorney for Health Care is not for sissies.
4) Young people, death is not reserved for the old. Prepare your will and your Durable Power of Attorney for Health Care and name a trusted agent.

After consulting your loved one, meeting with an attorney, talking with your doctor and making sure your wishes are clear to everyone who loves you and confirmed on a legal document, live well! Laugh well! Love well!

 

 

 

 

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