August 13, 2010

Here's the deal.

Linda's sister Debbie arrived at I U Hospital while they had me outside on the pretext of an assessment by the doctor and nurse on the ethics team who told me they were only trying to find out if they could determine whether Linda is competent and what her wishes are. Ha! As soon as Deb showed up they told me I couldn't come back in, and when I did they had me arrested and sent to jail. I would not even have known Deb was there if I hadn't pushed my way into Linda's room.

I sent Deb an E-mail and called her cell phone but she has not responded. I didn't find out until late last night that she is there in the room with Linda. I saw her on Facebook this morning, so I sent her this message on Facebook:

OK I see you are online on Facebook. You won't answer my calls so I am trying to contact you here. I understand that, unlike me, you are with Linda there in her now secretly located hospital room. Am I misinformed?

Has Linda changed her mind about taking herself off the ventilator, or are you and the doctors keeping her on it against her wishes?

I understand that you and the doctors believe she should keep fighting despite her loss of strength and will to live, as long as the doctors say there is some chance she will eventually get better. I believe Linda has considered all that and does not want to endure the pain, agony and effort involved in keeping up the fight.

 As I have said many times, I do not want Linda to die. However, this battle of wills is not about what I want. It should not be about what you want or what the doctors want, either. It is only about what Linda wants, and she is a grownup who gave a lot of thought to this both before and after she was so badly injured so many times by Indiana University Hospital. If she feels it is time for her to go, who are any of the rest of us to say she is mistaken?

 I love Linda more than I have ever loved anyone else. If she has changed her mind about what she wants, I will be the first to do whatever is necessary to help her keep fighting to get better. The last indication I have about her desires is the fact that she pulled the vent connection off her trach every 10 minutes or so between 8:00 a.m. Tuesday and the time they put me outside and then had me arrested on a pretext so you could take over as power of attorney. What action on her part could speak more eloquently about what her wishes are?

I intend to continue to fight for Linda's right to terminate her treatment if she wishes. I hate being unable to see her or speak to her about her decision. I am out on bond now and I will be contacting attorneys this morning to see what the next steps on my part should be. I expect sometime in the next few days there will be a judge and a court reported in Linda's room with the hospital administration, the doctors, you and me, and Linda, to have a hearing to determine what her desires are.

 I had hoped we could avoid a battle of the wills like this. Linda's will should be what prevails. If she is competent, even though she can't speak out loud because of her trach, the hospital and doctors have an obligation to do as she wishes, despite their own moral, religious and ethical views. If she is not competent, her health care power of attorney only gives you authority to act if I cannot. I was in jail the last couple of days, but I am out now and able to act. I fully intend to act.

 Your failure or refusal to respond to this message by noon today , now that there is evidence you have the ability to see, read and respond to it, will tell me all I need to know. Please, if Linda has changed her mind and said so to you, tell me that and we can avoid putting her through a lot more conflict and emotional turmoil.

 I would like to be with her to hold her hand and kiss her on the forehead and give her all the emotional and spiritual support I can for whatever is coming in the next several days, rather than out here hiring lawyers to do battle with you and I U Hospital. Nevertheless, my obligation to Linda is to keep fighting for what it is she wants to do.

* * *

I want everyone who gets this to understand that I do not want Linda to die.  Nevertheless, this is not about what I want, what Linda's sister Deb wants, or what the doctors and nurses at Indiana University Hospital want. It must always be about, and only about, what Linda wants. Last I heard from her she wants to terminate her treatment. She told me that by lip reading, and also more eloquently by pulling off the vent tube from her trach every ten minutes from 8 a.m. Tuesday until they put me out of her room at 10. They had a student nurse in the room pushing it back together and restraining Linda's hands every time she got the tube off.

 So, here's the moral dilemma:

 Do I follow my heart, take the easy way out and do nothing to oppose the hospital and Deb, and let them force Linda to continue treatment hoping she will recover and I can take her home?

Or, do I do the difficult and much more expensive thing of honoring my legal, moral and ethical  fiduciary obligation to Linda to keep fighting for her right to make this difficult decision for herself: whether to keep fighting, fighting her present condition and all the damage done to her by the doctors and nurses at Indiana University Hospital, or whether to have a peaceful, calm, dignified and comfortable end to her life at age 61, free of tubes for breathing and feeding, and a whole host of medications required to keep her body going so IU Hospital can avoid facing the consequences of its many errors in her case.

Just writing this brings a Niagara Falls of tears to my eyes. I would appreciate it of each of you who has befriended and loved Linda and me over our life together would respond with your thoughts on my dilemma. I'm all alone in this fight right now and completely isolated by the actions Deb and IU Hospital have taken. I need to know what you all think so I can tell if my head is screwed on straight as I talk to lawyers later this morning in the hopes of taking appropriate action.