"Governments implicitly place a dollar value on a human life when they decide how much is to be spent on health care programs and how much on other public goods that are not directed toward saving lives. The task of health care bureaucrats is then to get the best value for the resources they have been allocated. . . . As a first take, we might say that the good achieved by health care is the number of lives saved. But that is too crude. The death of a teenager is a greater tragedy than the death of an 85-year-old, and this should be reflected in our priorities."And it's reminded me of things I've been reading here, and here. I read with Stellan on my mind, and Elijah, and Makily, and S, and D, and M, and all the other "special needs" kids we know. I think of my friend R, waiting for a heart transplant, whose whole life has been bounded by hospitalizations, surgeries, and medications, and my brother-in-law, who is blind, and my Uncle Ronnie, whose Downs Syndrome did not end his life in his teens, as the doctors had predicted, but who lived well into his fifties, who lived to see and rejoice over his great-nephews.
Health care does more than save lives: it also reduces pain and suffering. How can we compare saving a person’s life with, say, making it possible for someone who was confined to bed to return to an active life? We can elicit people’s values on that too. One common method is to describe medical conditions to people — let’s say being a quadriplegic — and tell them that they can choose between 10 years in that condition or some smaller number of years without it. If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life. (These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.) If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar. . . .Who in the community of the disabled does not desperately want to see a cure for disabilities? Which of us parents of children with special medical needs has not agonized over the sufferings of our children, and wished that it was within our power to stop those sufferings? No one would argue, I think, that life is more comfortable or easier, that "quality" of life is better for the disabled than for the able-bodied.
Some will object that this discriminates against people with disabilities. If we return to the hypothetical assumption that a year with quadriplegia is valued at only half as much as a year without it, then a treatment that extends the lives of people without disabilities will be seen as providing twice the value of one that extends, for a similar period, the lives of quadriplegics. That clashes with the idea that all human lives are of equal value. The problem, however, does not lie with the concept of the quality-adjusted life-year, but with the judgment that, if faced with 10 years as a quadriplegic, one would prefer a shorter lifespan without a disability. Disability advocates might argue that such judgments, made by people without disabilities, merely reflect the ignorance and prejudice of people without disabilities when they think about people with disabilities. We should, they will very reasonably say, ask quadriplegics themselves to evaluate life with quadriplegia. If we do that, and we find that quadriplegics would not give up even one year of life as a quadriplegic in order to have their disability cured, then the QALY method does not justify giving preference to procedures that extend the lives of people without disabilities over procedures that extend the lives of people with disabilities.
Elijah has taken, lately, to making himself a mustache out of a bit of the paper-tape we use to keep his split gauze around his g-tube. He looks like a miniature Charlie Chaplin, and, especially since he frequently tapes his mouth shut, is quite comical. Both of his grandfathers wear a mustache, but Elijah's interest seems to have stemmed from my old china mustache cup, which has lately seen its turn in rotation as I try to make use of my tea-cup collection. He is fascinated by the mustache guard, asking me over and over again what it is, and why it’s there, perhaps amazed at the thought of a mustache so luxuriant it could require such a contraption.
The collection numbers an even twenty, now, my first a gift from my parents when I was twelve or thirteen, the most recent a present to myself, a souvenir from my sister’s college graduation trip. If it weren't for Dan, I think my cups would sit undisturbed on the walnut shelf my father made to house them; I would always be saving them for high, holy days or bonfire nights, and as most of those are attended by a whole passel of friends and relations, they require red plastic cups, not bone china. But Dan just uses them, making a special occasion out of Saturday mornings by setting the breakfast table with cups from my collection instead of the workaday mugs we use during the week. His favorite is the red toille, once part of my great-grandmother's every-day china. Mine is a thick, heavy cup with a thin sage stripe round the rim, which was once part of the china at the hospital where the same great-grandmother took her nurse’s training.
One cup came from a trip with my 4-H club in high-school, one is a perfect mate to a cup in my childhood-best-friend’s collection, and a set of three came from my high-school graduation trip. One was a wedding gift from my mother-in-law, and another she bought me before Dan and I were even engaged. The mustache cup came down, we think, from my great-grandfather's family; though he was himself clean-shaven, his Dunkard ancestors wore full beards.
I think my love of tea cups stems from a love of the tea ritual itself, which I’ve had since my mother bribed the five-year-old me into acquiring table manners by promising me high tea at the Empress Hotel if I could learn to acquit myself honorably thereat. The enchantment of that ceremony has stayed with me, deepened by a lifetime of “having tea.” On cold, wet winter afternoons, sitting around the fire, hands wrapped around our steaming mugs for warmth, arguing politics and philosophy with my parents, my sister, and my brothers; during lazy summer evenings, rocking in the porch swing and listening to the frog chorus; late at night, pouring out my worries and sorrows to my mother at the kitchen table—sharing a cup of tea. On our honeymoon, Dan took me to tea at the Empress again; at a mother’s day tea, I told my mother and sister that I was a mother.
I find the ceremony of having tea soothing—the shared understanding of proper behavior which simple etiquette brings—but beyond the ritual, I love the pause, the respite, the affirmation that small things, and beauty, and people matter. Every piece of my tea service has a story, a memory behind it. This pot was from my grandmother, this from my mother. Those spoons were from my sister. The tea cozy Dan bought me on our honeymoon, the tea trays were hand painted for my grandparents by a good friend, the little cream pitcher and sugar bowl were left me by my great-aunt and –uncle when they died. The things are pretty in themselves, but they’re all the more beautiful to me because of the memories they evoke—of the people who gave them to me, of the people I’ve used them with.
I had my mother over for tea today, a ploughman's lunch with homemade muffins and orange slices, and black tea. We talked, and ate, and just spent time together, without anything else on the agenda. It was very good.
She thought: Americans won't obey any king on earth. Americans are free. That means they have to obey their own conscience. No king bosses Pa; he has to boss himself. Why (she thought), when I am a little older, Pa and Ma will stop telling me what to do, and there isn't anyone else who has a right to give me orders. I will have to make myself be good.
Her whole mind seemed to be lighted up by that thought. This is what it means to be free. It means, you have to be good. "Our fathers' God, author of liberty--" The laws of Nature and of Nature's God endow you with a right to life and liberty. Then you have to keep the laws of God, for God's law is the only thing that gives you a right to be free.
--Laura Ingalls Wilder, Little Town on the Prairie
Posts
All Comments
