Community Coalition for End of Life Care

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What have we learned from Terry Schiavo?

For many of us who participate in the care of the terminally ill, watching the media circus around the Terry Schiavo case was excruciatingly painful. The focus of the media seemed to be purely on other people’s opinions about whether or not to pull out her feeding tube. Should she be starved to death or should we feed her? Should she be artificially given nutrition or should nature be allowed to take its course? It all depends on how you look at it. Universally, there is no right answer to the question of whether a feeding tube should be used to give nutrition to a person or not. It all depends on the individual involved.

The only important question about Terry Schiavo was simple: "What would she have wanted?" This was a tremendously personal decision and the disagreement between her husband and her parents about what she would have wanted was also personal. The involvement of the media, the state and national governments, and society at large in this issue was shocking. There are few decisions made in one’s lifetime that are more personal than how one wishes to die. Certainly governments, media and the population at large had no personal or intimate knowledge of the personal life of Terry Schiavo; and therefore they had no business participating in the subjective decision about what should have happened to her.

At some point we will all die. There are few facts so certain. Most deaths, these days, do not occur abruptly and unpredictably, but slowly as a result of chronic disease. We have an opportunity to plan for this time and it can happen in many ways. It can happen with family, friends, and skilled caregivers supporting and acknowledging the process; or it can happen hooked to machines trying every last effort to stay alive. It can happen with pain; or relatively free of pain. It can happen with knowledge and acceptance giving opportunity to reflect, to thank, to forgive and to love; or it can happen fighting and denying to the last second.

Don’t get us wrong. We are not suggesting that a certain was is right or wrong. But what we are suggesting is that the only way you can direct what is to happen to you is to take charge. TALK: to those you love and respect about your wishes. PLAN: write out a living will and durable power of attorney for health care. Talk to someone you know and trust who can help: a nurse, social worker, doctor, pastor or lawyer. This is the way to make sure your personal wishes will be respected. Maybe the media exposure and Terry’s death can at least teach us this.

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