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Conversations That Matter

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When 27-year-old Terri Schindler Schiavo collapsed in her home on Feb. 25, 1990, neither she nor her family could have imagined the course of events that would tear her family apart and bring the attention of the world to their doorstep.

Terri’s plight has stirred debate, not only pitting family member against family member, but also finding its way into the Florida courts and legislature. Medical professionals, ethicists and advocates for the disabled have entered the fray as well, not to mention religious people, both liberal and conservative, who have raised serious moral concerns from both sides of the theological fence.

Terri was left severely brain damaged and unable to care for herself. A feeding tube was inserted to provide nourishment. While some medical professionals eventually diagnosed her condition as a “persistent vegetative state,” others determined that she was able to respond to stimuli and that she made some effort to communicate, indicating a higher degree of brain function, although very limited at best.

As months turned into years, relations between Terri’s husband, Michael, and her parents, Bob and Mary Schindler, became strained. Terri had no written Advance Directives indicating what her feelings were concerning life-sustaining treatment.

In 1998, Michael began a legal battle to have Terri’s feeding tube removed on the grounds that he had heard her say, prior to her illness, that she would not want to be kept alive in that way. The Schindlers felt differently and believed that Michael did not have Terri’s best interest at heart. On Oct. 15, 2003, a Florida Circuit Judge upheld Michael’s request for the removal of the tube. Then, in an unprecedented move, the Florida Legislature gave Gov. Jeb Bush the authority to intervene and reinstate the feedings.

As court, legislature and family continue to wrangle about issues of constitutionality and who has the final word, Terri remains on a feeding tube. The Florida Supreme Court has agreed to hear oral arguments on her case on Aug. 31, 2004. Terri turned 40 on Dec. 3.

Whatever the outcome of Terri’s case, one of the results of her unfortunate situation is that it has brought the discussion of life-sustaining treatment and end of life wishes out of the closet and into our living rooms. How many of us, while watching the evening news, have said, “If something like that ever happens to me, I would want….”?

How can congregations enter this dialogue and offer alternatives to families who hope to support one another rather than be torn apart when faced with difficult decisions?

Without taking “sides,” churches can provide a safe place for people to learn about the issues surrounding life-sustaining treatment. What used to be the moment of death when life ended fairly abruptly and quickly has now become, in many cases, the season of death. Ventilators, feeding tubes, artificial hydration, dialysis and even antibiotics can prolong the inevitable, meaning that the dying process may take weeks or months, or as in Terri Schiavo’s case, even years.

Through Sunday school classes, Wednesday night programs and other ongoing educational opportunities, churches can address this reality in an informative way and help prepare people for decisions they may have to make for themselves or for their loved ones. Most hospitals and hospice programs can provide physicians, chaplains and ethicists who are well-equipped to present this type of information.

Congregational groups can also be a setting in which people can be encouraged to talk about and explore their wishes. This has to be more than, “I don’t want to live like a vegetable.” What is it that makes life meaningful? What would I want my family and other decision-makers to know about what is important to me should I be unable to communicate my wishes? Encouraging people to complete Advance Directives (Living Will and Health Care Power of Attorney) is important, but these documents are of little use unless open and reflective conversation has taken place with those who may be faced with making crucial decisions in a time of crisis.

This is not just about “autonomy,” the ethical principle that has guided most of the discussion around these issues in recent years. It is not just about “what I want.” Personal decisions need to embrace the “others” in our lives, recognizing that those involved in carrying out our wishes will also be affected by decisions that are made.

Who will be the one to speak for me when I cannot speak for myself? What does that person need to know about my values and my feelings about life? How can I have conversations now that will pave the way for wholeness and community during times of crisis? Meaningful conversations with loved ones before a crisis occurs can strengthen relationships and create bonds as life values are shared openly and honestly.

Terri Schiavo has certainly taught us that decisions related to life-sustaining care are seldom easy. Approaching these decisions from the realization that we are connected to one another in ways that have the potential to bless or to divide can re-frame the issues for congregations seeking to create meaningful dialogue. Churches can provide the setting and the tools needed for that dialogue to happen.

Linda M. Lewis is project coordinator for Faith in Action End of Life Care Ministries at the Hospice and Palliative Care Center in Winston-Salem, N.C.