blog.bioethics.net

Dying for Food

Theresa Schiavo spent more than a decade fighting an eating disorder. As millions recoil in horror at the fact that she died from the removal of a feeding tube, the irony that a woman who was plagued by food should die in that way has been lost. Ms. Schiavo entered her persistent vegetative state, in all likelihood, as a result of a heart attack brought on by her struggle with weight.

But when beautiful people, dressed in clothes too tiny to fit most Americans, host one program after another in which Terri Schiavo is fashioned as a vulnerable symbol of death by starvation, it is all too easy to miss the fact that Terri Schiavo did her 'starving' twenty years ago.

Ms. Schiavo made no secret of the fact that she wanted to weigh 85 pounds. Ironically, the photos of her as a svelte, tanned young woman, paraded as pictures of 'Terri as a healthy woman' - or as 'Terri as she might be again' - were taken in the throes of her battle with food and with bulimia. The pictures and the association with dying "from lack of food" should be familiar to anyone who is familiar with eating disorders. At least seven million Americans suffer from eating disorders like anorexia and bulimia, and 61% of cases last a decade or more.

If you are wondering whether or not the Terry Schiavo who had a heart attack would have said that she would want to forego nutrition and hydration, you don't know bulimia. She had already undergone a decade of refusing food at a basic, fundamental level, in the most resolute way imaginable.

At the time that Terri Schiavo went into persistent vegetative state, she had undergone some treatment for her eating disorder, but not much. Today, treatment for bulimia is even more expensive, and the images that torture young women about weight are more obvious and ubiquitous. Terri Schiavo's heart attack was, ultimately, a result of the lack of resources for the treatment of several of the known side effects of eating disorders. There was a lack of support, a lack of comprehensive health care, and a lack of awareness. What society was ready to offer her is food, and images of 'thin'. And indeed, that is all anyone outside her hospice offered her at the end of her life: food, pictures of vitality, and an entreaty to endure.

It would have cost society a fortune to do more for the young Ms. Schiavo - and millions like her - than to offer up the paradoxes of American weight consciousness. Treating eating disorders costs a fortune - tens of thousands of dollars a month on average for intensive treatment. Many, many women in particular receive no treatment, and many more are treated too little or for too short a time. Terri Schiavo was not alone in her struggle - but her struggle was not the one embraced by those who venerated life at all costs.

There are dozens of issues about Schiavo that will linger in bioethics for decades, and most of them are much more important, I suppose, than the role of eating disorders in medical and end of life decisions. It is incredibly troubling that patients linger in a vegetative state for decades while we try to figure out how to work together to match the goals of medicine to the importance of compassion. Ultimately, we all seem to know now that it is going to be hard to find a way for even like-minded communities to agree on how to balance life and liberty under circumstances like those of Terri Schiavo.

But it ought to be possible to get the hundreds of millions of Americans who have been watching the battle over Terry Schiavo and food to agree on one thing: people should not be allowed to linger for years in a fully-conscious, suffering-riddled persistent state of self-starvation. More than half the nation struggles with weight, and we are fatter than at any time in our history. And simultaneously, Americans worship beauty in unforgiving ways that provoke as much masochism about weight gain and weight loss as one could imagine.

It is no surprise that Terri Schiavo died when her nutrition and hydration were discontinued. But it should come as a shock that those who fight over nutrition at the end of life are so tolerant of a paternalism about weight and food - an attitude that killed Terri in the first place. - Glenn McGee