Friday, November 7, 2014

Killing Nancy - Assisted Suicide and Media Discourse

The physician assisted suicide debate is taking place right now, thanks to Brittany Maynard's decision to go public with her death plans, on multiple levels.

1. The abstract ethics of the practice (in abstract, I'm for it).

2. The ways in which it's applied (in practice, the innate ableism of our society encourages certain kinds of people to kill themselves, and not others)

3. The media discourse.

This blog post is on #3.

In the UK, the mother of a 12-year-old girl was given permission to have her daughter's feeding tube withdrawn, ending her life. The girl could not communicate in words and was, due to a post-surgical infection, in constant agony. I am willing to entertain the notion that, in the abstract, this was ethical - constant agony, no hope of remediation, no ability to communicate.

Here's the (a) problem with the coverage (quoting Ari Ne'eman, founder and president of the Autistic Self-Advocacy Network, my emphasis):
What Ne’eman worries most is that Nancy died not to relieve her pain, but because she was disabled. “The media coverage implies that those who need a feeding tube would be better off dead. Nancy’s killing puts into action longstanding statements that it would be better to be dead than disabled,” he said. “People have trouble imagining that people who require assistance with eating, breathing, getting dressed have lives worth living.”
The tabloid press coverage so far, which has been very sympathetic to Ms. Fitzmaurice, does seem to be blurring the line between whether hydration was withdrawn because Nancy was in pain or because Nancy didn’t have a good quality of life. For example, The Mirror says that Nancy “could not walk, talk, eat, or drink. Her quality of life was so poor she needed 24-hour hospital care and was fed, watered, and medicated by tube.” Which may indeed sound like a wretched quality of life to those unfamiliar with disability, and the phrase “watered” is further dehumanizing.
It is one thing to have a conversation about ending pain that cannot be mitigated. That's a very complicated issue.

It's another to link the ending of life to disability. How we talk about these things, especially in the media, shapes our understanding of what disability is, what a good life is, what a meaningful life is, and more.

4 comments:

Queen Magnolia Blossom said...

I am on the same page as Ne'eman.
"What Ne’eman worries most is that Nancy died not to relieve her pain, but because she was disabled." That was my instinct when I read the article. Can't feeding tubes be run into the stomach? It seems I have heard of this. I wonder if all measures were discussed, for instance, an IV for hydration and pain. That might have maintained the child long enough to treat the infection. I am not a medical person, I speak here as a mother, grandmother and ordinary person.

watermelonpunchcom said...

People need to talk about "end of life" stuff more.

And surely it's very individual, but how can anyone respect someone else's decision, without having considered openly, and with all information available, the matters at stake?

For example, it's the taboo that keeps people from discussing, and therefore from understanding, that there is usually a distinct and important difference between:

1) a person with disabilities, even very extensive disabilities

and

2) a person in an acute state of an irreversible terminal condition

When someone directly into #2, as it appears was the case with Mrs. Maynard, there may be objections & differences of opinion, but there's not so much room to blur the framing. You might be debating with differences in preferences & beliefs, but at least on the same page.

It is far too easy to confuse, and blur the framing, when someone, such as appears might be the case with Miss Fitzmaurice, moves from #1 to #2.
Then you have people debating 2 different issues that sadly, one have have nothing to do with the real life person's likely situation.

watermelonpunchcom said...

And sorry I didn't proofread those sentences before hitting post. :/

John Kelly said...

the laws don't grant assisted suicide to people "in an acute state of and irreversible terminal condition." It's for people who, doctors reasonably expect, will probably die in the next six months. Problem is, many many people don't die within six months. we don't know the specifics of Brittany Maynard's situation, but in Massachusetts, Sen. Ted Kennedy was given 2-4 months to live, but lived 15 more gloriously meaningful months. And if you look at the Oregon reports, as generally uninformative as they are, prescribing doctors fill out a standardized form listing the "end-of-life concerns." It turns out that these concerns deal almost exclusively in disability –dependence on others, needing personal care assistance, feeling like a burden, etc. 200,000 Americans are discharged from six-month hospice programs every year. A "terminal diagnosis" gives people the illusion that doctors can predict death. They can't.