I want to thank DailyKos for all the work they do, every day, esp on the health care issue. Yes, I am a Registered Nurse and I have been active in health policy issues in my state for a number of years. But I don't have the time to write the kind of thorough analysis of options at the high standard I have come to expect from regular contributors to this site. Also, I have been out of the USA for the past three months working at a hospital in a rural area of Nepal, a Low Income Country. ( yes, it was with Christian Missionaries. I suppose you could say I am part of the "Religious Left". for the record I am Catholic.)
I'll tell you more on that later, but I want to take you back to 1992.... or maybe to 1988... or maybe to 1958, the year my younger brother was born.......
He was three years yonger than me, and my mom says she knew he was "different" from about the age of two, because when he played he did not crash around like my older brother and me, preferring to spend time with my older sister instead. Peter was a gentler quieter kid. This was the early sixties, really a continuation of the fifties, and of course, she was worried he would not grow up to be a manly guy. ( there was another word for this, one which onlygot whispered, in that time and place...) She sought advice from her parish priest, who, in a far-sighted wisdom, told her it was going to be okay, God had a plan, she should not worry and why not just let Peter get art lessons perhaps and encourage him to do the things he felt like doing, instead of making him fit some sort of mold. ( in hindsight, that priest gave my mom some Advice for a Lifetime).
Pete went through the usual growing pains and then some, becasue he was bullied by other kids about being queer, and this also had an effect on me, because I got sucked into defending him, playing the protective older brother role, one which I still play in other areas of my life. I learned a lot from Pete including such things as letting your caring side show and not giving a damn about what others thought; these were lessons that helped me choose nursing as a career.
Fast forward to 1988 the day I got the news that he was HIV positive. Over the next few years we had a variety of medical adventures including a fullblown psychotic break while on DDI after which Pete refused to take that drug any more. He did not ever want to experience that again, and at that time we did the papers for me to be his POA in case of inability to make his own decisions.
Pete had Hospice and two AIDS Buddies, who appeared like Angels out of nowhere. He always viewed himself as "living with AIDS" as opposed to "dying from AIDS".
In 1992, at the end of a long road, he perforated his intestine and became febrile and delerious slipping in and out of consciousness. Despite years of planning and discussions, in which I never really expected that it would come down to this, I had the medical conversation nobody wants to ever have. His attending doctor asked whether I thought Peter would want to have his intestine fixed (and still die but never get off the ventilator) or not ( and die but at least do so breathing on his own until that stopped). There would no difference in outcome, except maybe a day or two.
This was not an easy moment. Today, seventeen years later I cry as I write this. There was never any question in my mind what Pete would have wanted, and I carried this out, not authorizing the surgery. He died two days later, surrounded by his family, and we all held hands and said the Lord's Prayer as he drew his last breath.
At the funeral my conservatively-religious sister took me aside and told me that I should have authorized the surgery and asked whether I might have killed him by not doing so. To me it was an astounding question coming from a person who had not discussed this with Peter even once.
I found it very difficult to speak to my sister for eight years. She is an admirable person who dedicated much of her life to raising a handicapped child, but even so, this rubbed salt into wounds that took a while to heal.
I offer this an an example of the way it works in real life. If Peter had not advocated for himself, none of his family would have had the chance to say goodbye to him while he was dying in ICU with an endotracheal tube and sedated.
Having had this experience it is patently obvious to me that few if any of these wingnut protesters have ever had to deal with modern health care in which these ethical decisions have been being made for the past twenty years or more. It truly astounds me that somehow the Hospice and Palliative care movement in the USA, perhaps one of the most morally altruistic mitzvahs ever to come into American Health Care, gets dragged into the vile political debates by such persons as the wingnuts who are ready to besmirch anything in the name of political advantage. This is an outrage.
I worry that other families faced with the stress of dealing with a dying family member will have members with a shaky grasp of the issues involved, and that these people will grasp at the slogans of the wingnuts. This is crazy and the wingnuts need to know the damage they are doing.
I will stop soon becasue I am not sure I am making sense any more. I am a health profesional myself with fifteen years of ICU experience, and I have worked in Low Income Countries where the health system is truly stressed, so I have a little better perspective here. We all need to come to grips with the fact that we will die someday. When the time comes, I want to have the discussion with my doctor, and not be prohibited by some gag rule caused by a backlash against hospice propelled by the wingnuts of the Right.