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Letter to Editor: Health Care Proxy Issues Can Be Sticky

Reader warns lack of detail in health care proxy instructions may create problems when loved ones disagree.

Dear Editor

My name is Elizabeth Gillman and I am an RN with a BS degree, I an writing about Susan Yubas' blog entry "Having The Conversation." I have lectured on health care advocacy and had an experience in California where I was the health care proxy for my brother for a short time.

When I arrived home to Hartsdale NY and phoned his daughter who became the alternate health care proxy, I was not permitted to gather any information about my brother's illness, or what transpired with him when I left and thought that he was going to be alright.

At Hoag Hospital, the nurse in the CCU unit said in answer to my question that my brother David was received in semi-conscious condition. I guessed that he was at Hoag. She hesitated for a moment and said that she would put me on hold (obviously to call the daughter). When the nurse resumed her conversation with me she said that no further information could be given to me.

At one point I called again and the daughter was in my brother's room. The nurse in CCU spoke with her, and told me that the daughter instructed her to tell me that if I called again she would make sure that I wouldn't even know if David was in Hoag Hospital.

I wrote letters to the ethics committee at Hoag and got no replies. I called the Office For The Aging who were of no help and didn't see this situation as elder abuse. The daughter kept David's friends from seeing or talking to him on the phone. After a few months, his financial advisor called me to say that he had died.

The point to be learned here that revolves around the choice of the health care proxy and the proxy document is this: the individual who chooses the proxy must also write in the document who must be given the right to visit, talk to her/him.

Often, as in my case, the proxy may have issues with a close family member or friend of the patient and because of HIPAA (Health Insurance Portability and Accountibility Act of 1996) is able to control– although illegally– who has access to the patient's physical body.

I wrote a letter to the Journal News about this subject and they published it. I contacted California attorneys who told me that my only recourse was to take the daughter to court and ask for guardianship. My brother had his third brain tumor surgery and was sedated when all this occurred, so he couldn't change the circumstances [of the proxy]. I think that this is a very important issue. I tried to tell the ethics committee that no where in my brother's proxy document did he state that he didn't want to see his sister or that she be involved in knowing about his care. 

I think that all people who appoint a health care proxy should also write down the points that I have illustrated. 

Elizabeth Gillman, BSN

Susan Yubas January 10, 2012 at 02:48 PM
Dear Ms. Gillman, I am so sorry for your loss and extend my deepest sympathies. You are correct that choosing your health care proxy/agent is not something that should be done lightly. Each State has it's own requirements with regard to Advance Directives and appointment of health care proxies. I will discuss this in more detail in a future blog post, but one of the forms accepted in New York State (and California) is Five Wishes, which incorporates both in one document. In specific response to the issue you faced, there is a section entitled "How I Want People to Treat Me," which includes an area on visitation. You can find more information on this at www.agingwithdignity.org. While having the conversation can prevent or at least minimize these types of conflicts from occurring, it is unfortunate that family dynamics sometimes prevent a person's wishes from being honored. Each individual situation is unique - some people wish to give their agent a wide range of discretion and others wish to be extremely detailed and specific as to what decisions the agent can or cannot make under what circumstances. Regardless, we should talk about our wishes with our family and make sure the proxy we choose agrees to respect and follow those wishes. I wish you well... Susan Yubas

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