Quality of Life...A Huntington's Disease Story

     

     In general, quality of life (QoL or QOL) is the perceived quality of an individuals daily life, that is, an assessment of their well-being or lack thereof. This includes all emotional, social, and physical aspects of the individuals life. In health care, health-related quality of life (HRQoL) is an assessment of how the individuals well-being may be affected over time by a disease, disability, or disorder.
     The reason that I am writing about this is due to the fact that my wife is now approaching end of life.  It is something she is well aware of and is a subject she expresses apprehension, anxiety and dread of.
     Huntington's Disease is something she is not a stranger to.  She watched her mother waste away from this dreaded disease as well as her aunt and uncle and it has also been a part of her life for the last 18 years or so.
     When her mother passed from HD there was a DNR placed on her which from what I gather was something she had previously agreed upon.  It was her decision, but was something my wife was not happy with.  When she passed, my wife came to me very upset and angry and told me point blank that if I ever did that to her she would hate me to her grave and this was repeated many times over the next few years.
     So now she fights for her life, but it has come at odds with health care providers who are concerned about her "quality of life". In the definition above there is one word that stands out to me and that is the word "perceived".  This word is used objectively meaning that the perception is coming from an outside source, in this case, the health care provider.  It does not take into account the wishes of the patient.
     So this brings up the question of ethics. The quality of life ethic refers to an ethical principle that uses assessments of the quality of life that a person could potentially experience as a foundation for making decisions about the continuation or termination of life. It is often used in contrast to or in opposition to the sanctity of life ethic.
     My wife believes in the sanctity of life. She believes that even though there are limitations placed on her, that she can find joy in things that are truly important to her and that her life is her decision. She also knew that she had to trust someone to carry out her wishes. She trusted that I would do it and not worry about what anyone thought of me, that I would put her interest ahead of my own. In this case we were both in agreement.
     This past Thursday night I was called by the hospital around 9 pm and told that her oxygen level was falling and that I should come in.  Anyone who has received a call like that knows the feeling that hits you. It weakens you and strikes you like a blow to the stomach.  I felt my body age a few years for the second time this year. My son and I immediately went in and she was definitely in distress. It was worse than the last time. She labored to breathe and she was unaware of us being there. I asked the doctor, as I was sure she was about to pass, how long, in his opinion, did he think she had?  He replied that by the looks of things she would pass within the hour. I immediately called my daughters and they arrived shortly after that to witness the same thing. An hour came and went and then two hours and so on. We talked to her throughout the night and held her hand. We kissed her repeatedly.  Her feeding tube had been removed as well as the IV for fluid. Only oxygen remained and it had fallen below 50.
     At about 4 AM I reached in under the sheets to rub her belly and when I did she woke up and looked at me.  I could tell she knew me and I exclaimed, "Well, look who's here!  Guess what happened to me today!"  She said "What?"  And so I told her that I had been attacked by a dog in my yard and continued with any news of a personal nature I could think of while the kids looked on and who also began to talk to her. I didn't know how long this would last so I backed away and let the kids take a turn while I went to get the nurse. Her oxygen level was rising and she was becoming alert again. She had rallied again. That was Thursday night.
     On Sunday, a different doctor was in and she came in to speak to me. I asked why they hadn't hooked her up to an IV again as she was so dry and she was also hungry. It had been three days and even though I had spoken of her wishes nothing had been done. She told me that to give her liquids via IV would prolong her life so they hadn't done that. I couldn't believe that they had taken that upon themselves to decide but they had. So I asked Sheila if she wanted the IV for fluid and she said "Yes". The doctor would not agree to placing the feeding tube but ordered the IV. I took what I could get for the moment but I have got to say that when someone you care deeply about is asking you for food, it is a hard thing to not be able to give it. She has lost her ability to swallow and if anyone were to give her food in her mouth it could kill her. She would choke to death.
     Monday came and after a night of anxiety which I was feeling as though were not my feelings but hers. I was on edge.  I spoke to the doctor about the feeding tube and he seemed to give me the feeling that he was not against doing just that...but when I checked, no order had been given. It had now been four days without food.
     Now I'm going to go back in time a bit. My wife was always in denial of her having HD.  It was not to be discussed, mentioned....never spoken of, and for the most part we went along with it. She was never tested for HD so there has never been a diagnosis of HD for her. We all knew that it was in the family and she had the classic symptoms and since there was no treatment or cure there really wasn't a good reason for her to have the test. She said, "I don't want Huntington's to be on my death certificate." That was quite plain and to the point.  However, I did ask the doctor what would he put on her death certificate and he stated "probable Huntington's". I told him her wishes but he insisted that this was what had to be on the record.
     Jump back to Monday evening and the fact that no order had been given for her to be fed. I was enraged and I spoke for about a half hour. I won't go into all the details of what I said but it was impassioned, it was angry and I could no longer control my emotions. I was overwhelmed. But one thing that I said seemed to hit.  I said, "Well, I guess Sheila will get her way with one thing. She won't have to have HD on her death certificate. Instead you can put starvation on it because that is what you are doing. You are murdering her just as sure as if you stood there with a gun and shot her but if you don't feed her, I will. I will take her out of here and I will do the best I can."
     My wife was in he room during my explosion and she heard all of it.  She cried while I talked. She watched to see if the nurse would react. They gave her a drug that relaxes her and she went to sleep and I went home. 
     Once I was home for about an hour the phone rang again and it was the hospital and each time that happens my heart races.  They had called the doctor after my departure and relayed to him what had transpired. An order for the tube was given and she will have it on Wednesday.  It will have been six days since she last ate. 
     Dying with dignity. Hmmph! That is not dignity. There is no dignity in death. They still deem my wife competent and yet they won't listen to her pleas for food or to quench her thirst. Every facet of society has failed her. From medical professionals to law enforcement to social services. You name it. It has failed her.
     Andy why? I think it has to do with someone else's idea of what quality of life is to them.

I am blogging these final true life accounts as I feel they are important to the Huntington's community. For too long they have hidden in the shadows and it has been to our detriment. The opinions expressed in this blog are our own and are not necessarily a reflection of the community as a whole as HD is not a one size fits all disease, each case has its similarities but varies in degrees of suffering. I am documenting it with permission from my wife who seems to realize that I need an outlet for my anger, our sense of being cheated and also to help with my own grief as well as that of our children. If you find it too depressing then please simply don't read it. For many, it keeps them abreast of a situation that they are hurting with and I sincerely hope they find something in it that helps.