19 June 2013
Have You Been Pressured To Have End-of-Life Talks?
This is a topic I am very conflicted about. I have seen both the good and bad sides of this and therefore much of the conflict. I am not sure that I will be objective in this, but I must try. At my age, I have been lectured to about not having a living will or a do not resuscitate order (DNR) on file. One doctor has been very emphatic of late and yet he will not answer my questions. I do ask very point blank why he wants them on file and you would think he could answer this question.
I also ask the following questions:
#1. What is the advantage of these over a durable medical power of attorney?
#2. When and how would they be used, or under what circumstances would they be used?
#3. Who makes the decision as to when they would be used?
#4. Would the family even be consulted?
Next I ask some rather pointed questions that are not related to the above:
#1. Would medical rationing become part of this?
#2. If our state adopts doctor assisted euthanasia, who would determine when this would happen?
#3. Having seen doctors and nurses ignore a durable medical power of attorney, what would stop you and this hospital from doing this?
The discussion generally stops and normally I receive no answers to any of my questions. I feel as a patient I have a right to have these and more questions answered, but the hospital that this doctor works for will not allow these to be answered.
As a result, I will not vacate my durable medical power of attorney and have made sure that the doctors and hospital know this. The two articles that have me thinking are this article and this article. Please read the second article as this person is very knowledgeable and presents the topic of how the Health Insurance Portability and Accountability Act of 1996 (HIPAA) has been interpreted and misapplied as a barrier to communication with the very people who have a deep and often lifelong relationship with elderly patients and who will be responsible for managing or providing care in the community.
That is right; they have been misapplied by uncaring doctors and nurses to avoid caregivers and often even patient advocates. During a recent hospitalization of mine, I had a person try to pull that on me when I asked a question on my own case. She was supposedly part of administration, but I didn't believe her. When she said she was not at liberty to discuss my case because of HIPAA, I had to laugh out loud. I am not proud of what came out of my mouth next, but it was a litany of words that were anything but polite. I basically told her that she was talking to someone that knew something about HIPAA and she had better start talking or I would be calling my attorney and charging her with a HIPAA violation. She made a comment that she had never heard someone so impolite and to put it where the sun doesn't shine.
Neither of us was aware that the hospital administrator was outside and with her comment he decided to enter. His first statement was that if I needed to call my attorney, she would be the first to lose her job and that she had better return to her duties on her floor, as a nurse, and that she would be disciplined as well as the person that had put her up to what she had done. She started to protest and he said, “You wish to be terminated now,” and she scurried out. As she left he said, “And you will be attending a class on HIPAA which I will be teaching.” Yes, the nurse could not discuss my case because she was not authorized to see my records since she was not assigned to my floor.
Then he turned to me and commented that this was unusual as normally I was in his office with problems. We had a good discussion and he said that the situation would be clarified. He said I had a right to advocate for myself and that he did not appreciate the nursing staff thinking they could bypass the proper procedures. As he left, he said to me that he was glad I knew a few things about HIPAA. I tried to ask him about the living will and DNR and said no one will answer my questions. He invited me to stop by his office in a couple of weeks and he would give me answers. He said that basically everyone else was not to answer these questions.
As he got to the door, he turned and asked about the person that could not read and write. I said that the wife of the person that had accompanied him that day was teaching him to read and write. I said that she was a retired elementary teacher and that he was learning quite rapidly. A lot of words he understood and did not need a definition for which really helped once he learned the word. I told him that I had a call from him and he wanted to tell me how well things were going for him and to thank me again for pushing the envelope for him. By making his neighbor aware of the problem, this got the wife involved in teaching him. The administrator said that was a first for him, but that is was a good lesson and he had added the neighbor's wife to the papers so she could accompany him to his appointments. With that he left.