SUNRISE, SUNSET

Learning from Terri Schiavo (Peter A. Singer, National Post, March 21st, 2005)

Schiavo's case is hardly unique: In the United States and Canada, family members are called upon regularly to make decisions regarding the initiation or continuance of life-sustaining treatment to mentally incapacitated patients. But this case has become a cause celebre because it contains two powerful metaphors for caring and community.

First, the fact Schiavo's eyelids are open has caused some to impute human feelings to the random movements of the woman's eyes. Photos of her gazing at the camera -- however blankly -- have emotive power for much the same reason.

Second, the case involves the cessation of tube-feeding. In my experience as a physician, decisions surrounding this life-sustaining treatment are difficult for families because feeding is itself a powerful metaphor for caring.

Schiavo's particular medical condition is severe and relatively uncommon, but tens of thousands of Canadians will end up this year with other conditions, such as stroke or dementia, that leave them afflicted by mental impairment and, like Schiavo, unable to make decisions for themselves.

A patient with severe dementia, for instance, is unable to recognize family and friends or engage in meaningful conversations. Such patients often require a feeding tube for nourishment and are confined to a long-term care facility. Anticipating such a situation, people should ask themselves: Would they want to be resuscitated if their heart stopped? Would they want to be put on a breathing machine if they contracted pneumonia? And, as in Schiavo's case, would they want tube feeding?

Readers should take time to talk about these issues with loved ones. There is no right or wrong answer to the questions listed above. But talking them through, and even writing down one's preferences, make it possible for caregivers to be true to a patient's original wishes. This is especially important for those whose medical conditions put them at risk of developing an infirmity that robs them of their ability to make decisions.

“ Well, children, it is time to talk of my wishes if I ever become incapacitated and can’t make decisions for myself. Here they are:”

“Don’t even think of pulling that tube except in the most extreme and unpredictable circumstances. My life is not yours to give or take away and you aren’t going to get out of it by waving some yellowing piece of paper from years back when I was young, in good health and barely aware of my own mortality. Feeding and tending to the sick and aged are not metaphors for caring. They are caring. This is a family, and if we aren’t going to care for one another in sickness and health, maybe it was all a waste of time.

“What would I wish? Kids, I get flummoxed when your mother asks me what I want for dinner. Every year we spend hours planning new exciting places to visit and we always end up going to the same damn ones. Do you really think I know what I would want years from now in situations I can’t even imagine? I have no idea where I will be, and neither will you or the world’s best doctors.”

“Meaningful conversations? That’s up to you, isn’t it? I doubt it will bother me much. You know, I’ve had thousands of conversations with you over the years. Some were fun and many were a pain, but, no offence, the word meaningful doesn’t jump out as a general memory. But I’ll tell you, the most important, poignant and joyful ones were the ones I had with you in my head when you were sleeping or off somewhere doing your things. They were gifts you gave me unknowingly. Maybe I can do the same for you.”

“Does it frighten me? Are you crazy, of course it does. And no parent can be dependent without feeling guilty. I realize fully I might become a very heavy burden, but it won’t be of my choosing, will it? You may become very overwhelmed and resentful. I understand, but it’s called life so suck it up. Did you think it was all about personal trainers and tropical eco-tours? And speaking of heavy burdens–-oh, never mind.”

“There are limits. Your own children come first. And it may be that I will clearly be in such pain or distress that you will have to make a very difficult choice. The Lord works in mysterious ways and He sure doesn’t make it simple. Pray on it and consult a good lawyer. I trust you. And remember your own children will be watching and learning. Ego te absolvo, but the decision must be yours. God be with you.”

“Just don’t expect me to fall for the smooth-as-the-creamy-curd drivel of some “bioethicist” from the culture of death who, under the guise of personal choice, wants me issue a general licence to kill in murky, far-off circumstances that will absolve all and sundry of the consequences of their actions, whatever their motives. You see, if it were just up to me, I might, in a weak moment of guilt and misplaced honour, be convinced to do it. But it isn’t just up to me. Thank God.”