We are saddened by the death of Terri Schiavo—sad for her and her loved ones, that they have been parted; sad for this nation, that we did not provide Terri with the latest diagnostic tests, and sad that there was no guardian free from major conflicts of interest to represent her best interests.

By now, Terri’s saga is well known—a 1990 collapse, years of deliberation in the court system, a very public family feud, and serious doubts about Terri's true condition and wishes. Much discussion has been focused on advance directives, the "right to die," "quality of life," and civility in civic discourse. Doubtless Terri Schiavo will join the ranks of Karen Ann Quinlan and Nancy Cruzan, whose cases are still being debated throughout the world today. In the end, what have we learned about life and ethics from these sad events?

The Schiavo experience underscores the importance of everyone having an advance directive. Most important is appointing a person to make decisions for you if you become incapacitated. Writing down some basic guidelines or values to direct your decision-maker can be helpful as well, as long as it is clearly stated that the guidelines are advisory only (so that your decision-maker is free to make sure that any general statements you make are applied correctly in a particular situation). A document is fine, but for it to be truly useful you need to discuss it—and your views, values, and beliefs related to it—with the person you appoint as your decision-maker.

In sum, we urge you to appoint someone in writing to make decisions on your behalf and discuss with that person your views and values relevant to the types of decisions they may be called upon to make. To complete such a document requires careful thought about how to word your wishes. With that in mind, CBHD has developed a simple advance directive kit to assist you.

In addition, the case of Terri Schiavo is a reminder of the importance of speaking out at every opportunity to foster an ethical approach to end-of-life decision-making. It is critical that treatment decisions be based on the best-available medical information and on an unbiased assessment of the patient's wishes. Neither of these standards was met in the Schiavo case.

If a patient's wishes are unknown, we must resist the temptation to engage in quality of life judgments regarding a patient. Disability rights groups help remind us how to respect medically-disabled living human beings who are not "imminently dying despite all that medicine has to offer." Such people do not need a "right to die" but rather the "support to live." Let us not devalue and fail to protect people whose quality of life appears to be very low. We are all at risk when any one of us is left unprotected in such circumstances.

Additional Resources

‍