Lessons from the Schiavo Case

In response to the recent interest in the Terri Schiavo case, in which Ms. Schiavo's medical condition was described as a persistent vegetative state, and her feeding tube was removed according to her wishes as relayed by her husband following a long court battle, we have assembled the following reflections from our Calvin experts on the subject. The text for the following articles was taken from a panel discussion held for students to debate the issues surrounding the case.


Shedding Light on the American Health Care System
Cheryl Brandsen

American health care has arguably become the most inefficient, inequitable and costly health care system in the Western world. About 3,000 people lose their health insurance each day, 43 million Americans have no health insurance, and our health care costs continue to rise. I find myself drawn to the economic issues in Ms. Schiavo's case.

As far as I can determine, most of the Schiavo's malpractice settlement money (just over $1 million) went to pay for Ms. Schiavo's care. Medicaid funds were also used. We can be glad for the Schiavos that they had these resources. Early on, the family took Ms. Schiavo home with an intent to care for her. After just three weeks, she was returned to a nursing facility because her care needs overwhelmed them.

Let's imagine what might have happened if the Schiavos or Schindlers didn't have these resources, as is the case for many families with a severely disabled family member. Keeping in mind that they tried to provide care for her at home, what other options might they have?

Pay for care in a skilled nursing facility out of pocket? Perhaps, but at $60,000 to $80,000 a year for this kind of care, most families would not be able to afford this over the long haul. Maybe other charitable organizations or the church could assist? Perhaps, but again, this is a high level of financial need. Many church benevolent funds work hard to cover basic needs that families face, and few could take on such catastrophic costs year after year.

Public assistance? If the family wanted to put Ms. Schiavo in a nursing facility, they would have to privately pay until their resources ran out. Then they could apply for Medicaid, a health care insurance program for the poor. It is difficult, however, to get a "Medicaid bed" many times in nursing facilities because the per diem rate is often lower than private pay or Medicare.

This case encourages all of us to look carefully at how we organize and finance health care in this country. One thing we lack is a well-tuned system of being able to provide for people's need for care. We have health insurance for some - those with employer-provided private insurance and older adults, who receive Medicare. But even here, we have some paradoxes. Medicare, for example, theoretically will cover the cost of an organ transplant for a frail 85 year old, but does not provide low-tech basic care for such a person who needs help with bathing, getting dressed, and safety monitoring. Our system will cover expensive and high-tech medical costs, but the need for basic care, which often overwhelms families, seems invisible to policymakers. We need to be having difficult conversations with each other about the benefits and limitations of medical technology, and about how and when we make moral and economic decisions about allocating scarce health care dollars. Such conversations would be a good outcome of this case.

This case is also interesting because of issues of power and access - something to which sociologists often pay attention. Who gets access to the courts and under what conditions? Who gets to bend the ear of Congress? What groups of people rally to the Schindlers' defense? Who gets front-page press coverage?

At the same time the Schiavo case was occurring, another case was unfolding. The case involved a young African-American child in Texas named Sun Hudson. He was born to Wanda Hudson, who received no prenatal care. He was born with a rare genetic disease that prevented his lungs from growing. For the six short months of his life he required a ventilator. He died on March 15, 2005, after the hospital, under the Texas Futile Care Law, disconnected his ventilator against his mother's wishes. His death appears to mark the first time a hospital has been allowed by a U.S. judge to discontinue an infant's life-sustaining care against a parent's wishes, according to bioethics experts.

To compare the Hudson case with the Schiavo case is somewhat unfair, admittedly. Hudson was dying, and the measures used to keep him alive were prolonging the dying process. Ms. Schiavo, arguably, was not dying until the removal of the hydration and nutrition tube. Hudson was conscious; Schiavo was not. Mrs. Hudson was described as "eccentric"; the mental health of the Schiavos or Schindlers was not at question. These are notable distinctions, but not my point here. The Texas Futile Care Law, written by a bipartisan group of experts with competing interests, is also not the issue I'm primarily concerned with here. Rather, what seems to be a landmark case - a child is withdrawn from life support against the will of a parent - slips below the radar. The Schiavo case, where the law has been remarkably stable since Karen Quinlan, is getting its day in court and in the media. Why?

A charitable read is that Sun Hudson did not come to nationwide public attention because the hospital did exactly what it should have done for Sun Hudson. But here are some other things to think about:

. If the Schiavos and Schindlers were poor with no insurance money, would we know their names?

. What if Wanda Hudson had economic resources to protest the removal from life support?

. What if Wanda Hudson had had access to prenatal care? Might the outcome for her child been different?

. How do we ensure that all U.S. citizens have access to a thick package of health care resources?

. How do we extend our concern for adequate health care to people all over the world?

An excellent outcome of the Schiavo case would be that our collective passions and commitments for furthering a "culture of life" be extended to creating and implementing comprehensive national and international policies that feed the hungry, care for the vulnerable, promote peace and sustain the environment.

— Cheryl Brandsen, Calvin professor of sociology and social work, specializes in aging, dying and end of life care. As a social worker, she is interested in care of the dying, particularly in nursing home settings. As a sociologist, she is interested in the sociology of health care, particularly how health care is organized and delivered in the U.S. and how these systems of care shape the experience of dying. She recently finished a three-year Robert Wood Johnson-funded project with the Michigan Partnership for the Advancement of End-of-Life Care. She currently works with the Hartford-funded Geriatric Social Work initiative in this area.

The Four-Part Series:
Positive Outcomes of the Terri Schiavo Case — Hessel Bouma III
Shedding Light on the American Health Care System — Cheryl Brandsen
The Law of the End of Life — Jeffery Tatum
Resources for Advance Care Planning — Karen VanderLaan