“If I ever get like that, I don’t want to be kept alive. I want you to pull the plug.”
My mother has told me that on more than one occasion, and by “like that” she was referring to the vegetative state much like that which Terri Schiavo–the brain-damaged Florida woman at the center of a legal brawl over whether she should be allowed to die, as her husband says she would have wanted, or whether she should be kept alive as her parents desire–currently suffers.
Actually, my mother was being a bit more expansive than that. The last few months she has been taking care of an old friend, Charlie, who is suffering from what seems to be an advanced state of Alzheimer’s. When she came to his aid he was badly malnourished, unable to take care of himself, and living in a decrepit house brimming with trash and old newspapers. Now he totters about in a nursing home, diapered, happy but unaware of much, and certainly not able to remember what happened yesterday or even fifteen minutes ago. “Like that” includes Charlie’s condition.
My mother, who is as active now as a senior as she has ever been, does not want to live as an invalid, helpless or brain-dead. She wants to die with her dignity, with people remembering her as she has been her whole life–vibrant, adventuresome, witty and brilliant–rather than as an empty shell that lies in bed or stares vacantly at television static.
“Okay, Mom,” I replied to her, but I knew that assuring her that her wish will be followed is a much different thing from actually following through. This is the last responsibility I’d want to have, because I know that if this terrible event ever came to pass, I’d flinch. I’d look at her in the hospice bed, dead but for the machines that keep her going, or I’d look into her eyes that don’t even remember that I am her son, and I’d think, “She could get better. There’s always a chance. A year from now she could be healthy as a mule, back to being herself. It can happen. We just have to wait.”
Can you blame me? In my eyes she’ll always be Mom, even when there’s nothing left of her. She could be dead to the world yet I would still hold her hand, read to her, talk to her, and feel like she’s listening. Somehow, she’ll hear me, she’ll know I’m there. Somehow, she’ll get better. I’ll believe this. I’ll believe this because I won’t want to let her go.
This is why I can’t get mad at Terri Schiavo’s parents for fighting to keep her alive. They believe about Terri what I’d believe about my Mom. But the issue isn’t about what we believe. It’s about what Terri and my Mom want. Not wanting to let a loved one go is perfectly natural and logical, but it assumes a choice that is not ours to make.
I’m not sure if my Mom has a living will to establish her wishes, but Terri certainly didn’t. And it’s that lack of a living will that has caused all the trouble. The medical prognosis has been clear from the outset, or at least as clear as modern medicine will allow. Nobody is arguing that it would be wrong for Terri to be allowed to die if her living will asked for it in this circumstance.
If my Mom tomorrow ended up in Terri’s state, I may only have my word that she wished to be allowed to die, just like Terri’s husband claims she told him the same thing. And I can only imagine how heart-wrenching it would be to know what my Mom wanted but to have people fighting to deny her that one last wish. That is why I ultimately find myself siding with Terri’s husband. If Terri really did not want to live on life support, as my mother has chosen, then the husband has done the right thing in fighting for her wishes. Florida law does not make it easy to pull the plug on someone absent a living will–nor should it–but Terri’s husband has satisfied all of the courts that this case has been dumped into. He has made her case.
And indeed, nobody is challenging the laws that govern this situation. People still generally agree that the spouse should be the guardian with the primary authority to make these decisions, and that the other requirements that Terri’s husband met are sound. Even Congress’ recent act to try and move Terri’s case to federal court (for what has always been a state issue) is intended to be a one-time thing. So why has it come to this?
Because we don’t want to let go. I won’t want to let go, either, but I’ll have to. It’s what my Mom wants.
James N. Markels is an attorney and a regular columnist for Brainwash.