September 10, 2000
The PBS miniseries on choices people face about the end of life is starting tonight. I'm not watching it. I believe in people having the right to make choices about end-of-life care, but this is not something I need to see several days in a row, nor do I need to see dying people right now. Frankly, I don't think I could handle it.
I have some real problems with conversations about end-of-life care. No one who wants to discuss it ever seems to want to discuss not discontinuing whatever life support measure. The right not to die, to continue treatment, is left out of the discussion.When my mother had her third stroke, there were a lot of decisions to be made. I was the only one entrusted with the responsibility, not only as her next-of-kin, but also as holder of her Power of Attorney.
At most steps along the way after the path took that particular turn, I felt that I was being pushed into ending her life. I felt that the doctors, who were strangers to her, to her situation, and to me, were bullying me into decisions. And I don't take kindly to bullying.
They saw my mother as someone over age eighty, whose life was probably over anyway, and they kept trying to turn my thinking in that direction. It was as though they were trying to get me to agree to put out the garbage. And four years later, I am still so angry about it I can't promise to be coherent.
I knew how my mother felt about such things. I knew first and foremost that if I let any life-saving measures be discontinued before an accurate diagnosis was made, I would be dishonoring her. I would be doing less for her than she had done for her dog a few years earlier (she insisted on a diagnosis for the dog, rather than agreeing to euthanize him---good thing; he was having an allergic reaction and as soon as the allergen was removed, he recovered and thrived). I wasn't being unrealistic: I didn't expect her to get well a few days after being admitted to the hospital. I knew she was gravely ill. But I thought it would be a sin to do other than what I did.
My mother never walked away from a fight in her life, not even World War II. Who the hell would I have been to tell her she was going to walk away from the fight of her life? She had always said that in the case of brain death, she didn't want to be kept alive only by machines. But this was utterly not that situation.
And I could tell she wanted to fight. One of the first-year residents on her case made the grave error of assuming my not-completely conscious mother couldn't hear her when she asked me if I wanted to discontinue life support. I made her walk out in the hallway with me, where I told her that no, we were going to have a diagnosis. When I walked back into Mother's room and told her my decision to find out what was wrong and how to treat it, I could see the relief cross her face. That was all the reassurance I needed that I had made the right decision.
After the diagnosis was made, there was no clear choice about her treatment. I was presented with unpleasant options all around. And I was so overwhelmed with the whole process that I asked a friend to go with me to a hastily-called meeting with one of the doctors, who wanted to know my answers that day. My friend brought a notepad, and took notes on the conversation, so I would have a record of the answers to any questions I asked. I was and am grateful for that. When the convening doctor started talking about Mother's care in terms of long-term convenience for me (as in, if I decided down the road that it was inconvenient for her to be alive I could easily do something about it), my friend wondered whether I was going to jump across the table and start choking the doctor. I managed to contain myself, but the anger that moment provoked made the notes even more important...the anger being the thing that I most recalled.
Well, the decisions were made (yes to surgeries for a tracheostomy and a feeding tube, in case you're curious). At the point at which they were made, Mother's condition could have gone either way---no one said she couldn't ever breathe on her own again, nor that she could never eat solid food. And the surgeries happened. And mother was improving, in all estimations.
Plans were made to transfer her to another hospital, which had association with a nursing home where she could be cared for. After the transfer, she was doing fairly well in the new hospital, until she came down with a fungal pneumonia. The doctors called me into a conference room, and explained the nature of this new complication, and said that the treatment for it was almost certain to send her into kidney failure. My choice at that point was between letting nature take its course---as in she would probably die from the pneumonia---or start the treatment---which meant she would probably die from kidney failure.
My choice that time was easier to make. I decided to let nature take its course. I told the doctors not to ask me to discontinue feeding, because I thought that was immoral. They said they had not planned to ask that, nor for permission to disconnect the ventilator. They just wanted to know what should be done regarding starting the new treatment.
What was the difference with these doctors? Well, they weren't treating my mother's life as though it were a burden to them, or to me. Even though they were also strangers to her and to me, they were aware of the sacredness of any human's life, and the solemnity with which such discussions needed to be held.
The hardest thing I have ever done in all my life was go into her hospital room and tell her what they had told me. Though she couldn't speak, she could and did let me know she was at peace with the decision. She knew I was not asking her to quit fighting; that I was merely telling her which opponent she faced. I also told her that if she disagreed, she should give me a sign. None came.
Eight days later, she died. With dignity, with respect, and with full knowledge that she had fought the good fight.
I am at peace with the decisions I made. If I had them to make again, I would not change a thing I decided.
And if anyone ever tries to bully me again about such things, I will be more prepared for the fight.