Originally written on March 3, 2004
I never thought of myself as a right-to-die activist.
Let me give this to you in a nutshell: because of an administrative screw-up, the nursing home that my mom was in sent her to the wrong hospital nine days ago. She ended up in St. Vincent’s on Staten Island, part of the larger St. Vincent’s NY organization. This network is sponsored by the Roman Catholic Diocese of NY and the Sisters of Catholic Charity, and they make decisions based on, shall we say, what they perceive to be a higher authority.
Thus: I can’t get Mom transferred back to Staten Island University Hospital (the hospital she came from, which is a caring, loving environment) because the doctors at St. Vincent’s won’t authorize it (too dangerous.) I can’t transfer her of my own volition because, I’ve been told, they’ll make it clear to whatever transport company that I hire that she’s being moved against medical advice, and if she dies in the ambulance, the transport company will be liable. So, I’ve been told, no one will touch her. Lastly, St. Vincent’s won’t remove her from the ventilator while there is any brain activity. (The fact that her heart, lungs and kidneys aren’t worth a plugged nickel all together doesn’t matter.) St. Vincent’s regards me as something of a brash killer; I want to take this lady off a vent because that was her wish. I wasn’t clever enough, you see, to think of putting that in writing and sending it to St. Vincent’s, on the off chance that an ambulance would bring her there instead of SIUH. What I should have done, apparently, was blanket every Catholic hospital in the greater New York area with Advance Directives on the off chance that Anna May Ryan ever ended up at any one of them. Silly me.
And who pays? Not Sister Mary Ventilator, she of the Ethics Committee at St. Vincent’s. She’s fine. And she is sure of her ethics; she guards them well. Anna May pays, that’s who. Anna May can’t communicate, in any way, the fact that she may not be happy about being hooked up to a vent, on IV’s, with a feeding tube that squirts beige matter into her stomach at regular intervals. Did I mention that St. Vincent’s didn’t move her once in nine days? Flat on her back, head to her right side. I say to Sister Mary Ventilator, shall we go have a look? Can you say bedsores the size of the Blessed Sacrament? I walked in tonight and bingo, she’d been moved. Hell (damn: did I say hell?) at SIUH, they moved her every four hours or so, and moved her head every two hours or so, just so her neck wouldn't get sore!
So I may be reduced to getting a lawyer, bribing an out-of-borough ambulance company, and taking her over to SIUH myself. Yes, there is a good solid chance that she won’t make it to SIUH. If she dies enroute, does Sister Mary Ventilator shoot an email upstairs to the Man, recommending an eternity in Purgatory for headstrong Liz Savery?
A couple of years ago, my Aunt’s dog had to be put down, and she stayed with the dog until she died. How amazingly brave, I thought, and was secretly so relieved that my own dog had died of a heart attack when I wasn’t around. Because I wouldn’t have had the guts to stay with my dog while he died. (It’s a good thing Clancy doesn’t have my email password, or every shoe I own would be confetti by dawn.) And I am now hollering at the top of my lungs that I have the right to decide how my Mom dies, and to be with her when she dies – me??? – I couldn’t stay with the dog!
I resent the fact that the Ethics Committee at St. Vincent’s believes that I’m not acting in my Mom’s best interests. And, I know this is true, they believe they are. And I believe I am. And, um, if my encounter with Sister Mary V. was any indication, she’s very strong-willed. I believe I am very strong-willed as well. The next couple of days will be an epic battle of Good vs. Evil.
The thing is, both sides think we’re fighting for Good. Who’s Evil? I’m a daughter trying to carry out the wishes of her mother; they are a hospital trying to keep a 69-year-old woman alive. We both believe we’re doing the right thing. I just have a little more at stake.
I was talking to a friend tonight who said, you may come out of this whole thing appearing to be a good deal more liberal than you actually are. How funny, and how true. I never thought of myself as a right-to-die activist. But I guess I have been all along; I just needed the right button pushed.
Bring it on.
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