Dr. Teresa Whitehurst
March 23, 2005
Ms. Schiavo and The Costly Ill: While Democrats Grumble and Republicans Play Florence Nightingale, the Real Culprits Get Away with Murder
“Jeb Bush said the judge's decision "breaks my heart" and noted that it often takes two decades for a Death Row inmate's appeals to go through the system. "There's this rush to starve her to death,” Bush said…” Ruling May End 15-Year Feud Between Schiavo’s Husband, Family, 3/18/05
“As Republican leaders in Congress move to trim billions of dollars from the Medicaid health program, they are simultaneously intervening to save the life of possibly the highest-profile Medicaid patient: Terri Schiavo…The Schiavo case may put a human face on the problem of rising medical costs, both at the state and federal levels. In Florida, where Gov. Jeb Bush (R) is pushing a dramatic restructuring of the Medicaid program, the cost of Schiavo's care has become political fodder. In Washington, where a fight over Medicaid spending threatens to scuttle the 2006 budget plan, the role of the program in preserving Schiavo's life is beginning to receive attention.” Schiavo Case Puts Face on Rising Medical Costs: GOP Leaders Try to Cut Spending as They Fight to Save One of Program's Patients, 3/23/05 (emphasis added, irony noted)
Are the Bushes Really Pro-Life? Not on Your Life
Tough times lie ahead for all those conservatives who have, until now, tried to believe that their president is “pro-life”, despite the uncomfortable paradoxes of his unending war casualties and his zeal for executions: The president’s true colors, like his brother’s, are at last becoming visible, falling across the sad face of Ms.Theresa Schiavo.
Now that her husband has spent down to the last $50,000 of his malpractice-suit award, Theresa’s care is becoming a burden to him, and Medicaid is picking up the tab—for now. Bush supporters who think they’re rooting for this woman’s life don’t realize that their “pro-life” leaders are aiming to cut Medicaid, the last refuge for people like Theresa Schiavo: severely disabled but not terminally ill…America’s unwanted “costly ill”.
For a nation constantly advertised as “Christian”, one has to wonder where all that morality is when you need it. The life of Terri Schiavo is in the hands of politicians and judges, who have the power to go along with her husband to “let her die” or with her parents to “let her live.” Amid all the game-playing on Capitol Hill and in the White House, however, the most central issue—who decides whether you live or die, and under what conditions?—receives very little airtime, hence very little public discussion.
“[Ms. Schiavo’s] brother, Bobby Schindler, said his family was crushed by Tuesday's ruling. "To have to see my parents go through this is absolutely barbaric," he told ABC's Good Morning America. But Howard Simon, director of the American Civil Liberties Union of Florida, praised the ruling. "What this judge did is protect the freedom of people to make their own end-of-life decisions without the intrusion of politicians," he said…” US Judge Denies Feed-Tube Request, 3/22/05
As a progressive Christian, I usually support the ACLU’s positions because (1) I’m a “freedom-lover”, to use George Bush’s favorite term, and (2) I understand that there’s no better way to turn people against Christianity than to force it on them through things like government pledges, slogans on dollar bills, and federal monuments.
But in this case I have personal experience that conflicts with Mr. Simon’s rosy view of “the freedom of people to make their own end-of-life decisions”. While people on the Left and the Right bicker about the politics behind this awful drama, the real culprits—profit-hungry insurance companies and the politicians who collude with them—are getting away with murder, and laughing all the way to the bank. This unseen crime is perpetrated on the helpless and the poor: conservative compassion in action.
Though some excellent doctors, nurses and chaplains have helped and given hope to my mother, others have written her off because she can’t recover quickly or completely (from the asbestosis that Mr. Bush considers a “frivolous” reason to sue the shipyard that sickened her and my father), and because she’s “at that age” (over 70) when you’re supposed to politely die, giving up all claims to the costly medical treatment you thought you were paying for when you wrote that check to your insurance company every month. I’ve had to fight tooth and nail to prevent her from being warehoused and denied the same level of medical care that a younger, healthier patient would receive.
What’s Futile to Them May Not be Futile to You
Writing ill people off in the name of medical pragmatism or conservative compassion or “This is what they’d want” when money is the real issue happens even when a patient, like my mother, has excellent health insurance: That’s because insurers tire of shelling out money for somebody whose care seems—to those who don’t love the person—“futile”. And if you think “futile” is an objective term, think again. Medical intervention that’s futile to your insurance company may not be futile to you and/or your loved ones.
When a bullying hospital worker told my mother she had to “decide”—though she could barely breathe and was crying—to go along with the hospital’s plan to dump her into a horrid nursing home (owned by the same corporation as the hospital, of course), I knew she’d been labeled a “long-term care” patient, rather than a medical-care patient.
Once you’re labeled “long-term”, whatever your age, you can bet that your insurance company is backing out of its end of the bargain because you are no longer a profitable patient. And in America, profit is what health care is all about. So we’re now told to buy long-term insurance as well as health insurance since the latter is allowed to cop out the minute you don’t respond well to treatment, but of course most people can’t afford all that...
"In 1999, then Gov. Bush signed a law that 'allows hospitals [to] discontinue life-sustaining care, even if patient family members disagree.' Just days ago the law permitted Texas Children's Hospital to remove the breathing tube from a 6-month-old boy named Sun Hudson," according to a report by the Center for American Progress. "The law may soon be used to remove life support from Spiro Nikolouzos, a 68-year-old man. Bush has not commented on either case."” Will Bush Face a Backlash in the Schiavo Case?, 3/21/05
Plenty of people are talking about Bush’s hypocrisy in making politically expedient, action-movie Easter-time redemption moves for the benefit of Ms. Schaivo, while the law he signed in 1999 has paved the way for removal of life support measures for poor patients, and the Medicaid cuts that he’s agitating for will facilitate more money-based euthanasia. What I haven’t heard anyone mention is the fact that Bush’s futility law could have sentenced Ms. Schiavo to death, had she suffered her brain injury in Texas after that law went into effect. Thanks to Bush’s law, doctors could have labeled medical treatment for Ms. Schiavo “futile” and withdrawn the tube right away over her family’s wishes — if they, like baby Sun’s mother, didn’t have tons of political money pouring in.
Feeding Tubes and Other “Futile” Care: If It Ain’t Broke, Why Fix It?
Some say that Ms. Schiavo can’t understand that her quality of life is awful, and that her brain is irreversibly damaged. Must we be in our right minds—or in a working mind—to be given life-sustaining care, particularly when that care (1) is relatively easy and does not constitute “heroic measures” and (2) is working? If Ms. Schiavo must die because her care is “futile” and future improvement is just wishful thinking, what will this mean for all of the severely brain-injured patients in hospitals and nursing homes?
What will the starving death of Ms. Schiavo mean for patients with Alzheimers and their families? What will it mean for people like my mother whose lungs have been poisoned by shipyard asbestos that can never be reversed—but who enjoys meals and waking up each day? What, we should all be asking, will this mean for us and for those we love?
Others have argued that a life like Terri’s is a life not worth living. That’s fine—so long as they’re speaking for themselves. How can we know what someone else’s life is worth? Decades ago, a professor told us about a “vegetative” woman she had evaluated in a nursing home, a woman younger and far less brain-damaged than Terri, who eventually came out of her coma-like state. My professor’s words always stuck with me:
“Never assume that a comatose patient cannot hear you. This young woman couldn’t move, open her eyes, or respond in any way, yet day after day she heard doctors and nurses discussing whether or not they should “let her die” because her condition looked so hopeless. When this patient was able to speak months later, she said, “It was so terrifying, hearing people say these things and having no way to respond. But most of all, I wanted to cry out, “Please keep taking care of me, because there is something that I enjoy—when the aides clean my bed, I can smell the freshness of washed linen, and feel the coolness of newly-pressed sheets. It doesn’t sound like much, but it was the world to me.”
It’s clear that Theresa Schiavo is extremely brain damaged, but I do wonder—does she smell the fresh sheets? Does she feel their coolness on her skin? We cannot say yes, but in all honesty, neither can we say no. And this goes for her husband, who claims something so ridiculous that I can scarcely believe anyone takes it seriously: that a young twenty-something with her life ahead of her (1) would bother to think about or be able to fathom this kind of situation, and (2) could clearly and accurately articulate her wish to die from starvation and dehydration, should she one day become severely brain-damaged.
Even more ridiculous than the thought of 24 year olds spending a lot of time thinking about or even understanding end-of-life issues is the notion that what you “want” at 24 is the same thing you’d want decades later in life. People change as they age, for goodness’ sake—who’s to say that Theresa Schiavo wouldn’t have changed her mind, as well, assuming her husband’s claims are correct, had she not been so seriously brain damaged? And by the way, that’s quite an assumption, particularly in light of allegations that her heart attack may have been caused by him.
I’ve known many older people who, in younger years, swore they’d kill themselves the minute they developed dementia or became irreversibly sick in old age—but later changed their minds and decided that living still had its rewards, however small. Let’s face it: Terri Schiavo is no more making this “end-of-life decision” than I am. Furthermore, she’s in the same boat with all those old folks in nursing homes across the US who, like Terri, can live only if someone feeds and cares for them.
If Progressives are to Lead, We Must Think for Ourselves and Speak From Our Hearts
In light of all the imponderables in this case, I urge liberal compassion for Terri Schiavo and her family, by which I mean the reinsertion of her feeding tube (yes, I trust a parent’s or sibling’s love more I trust a husband’s, especially when his wife has nothing to offer him and he’s otherwise engaged). I am also, however, urging equally liberal compassion for other sick and disabled Americans, by which I mean standing firm against corporation-friendly futility laws like the one that George Bush signed, and the GOP’s vicious attacks on medical coverage, Social Security, and other basic rights for our ill and our elders.
The Schiavo story may be “a great political issue” for politicians, but for most of us it’s a scary reminder of things we’d rather not think about, like what will happen if we’re poor, sick, and don’t respond to care? Will we be starved to death to boost profit margins for our insurance companies or medical facilities? Will weary doctors, taking Bush’s futility law as their cue, gladly rid themselves of us when we require life-support or other long-term care—even if we still savor the smell of fresh linen, or the feel of smooth sheets?
The progressives I know are far more compassionate towards the sick and vulnerable including those without money than are conservatives, yet these voices, closest to Christ’s teachings on caring for the poor even when we don’t know how they’ll respond and even when it costs us, become halting and awkward when life-and-death issues are raised. This must change. We must take the time to think for ourselves, refusing to force our thoughts into either/or, black-or-white categories, as, oddly enough, both our friends and our opponents want them to be. While we may disagree on the particulars of this case, it is my hope that Americans of conscience will start focusing on the real culprits behind the unnecessary pain, suffering and death that occurs daily in the world’s most wealthy nation.
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Dr. Teresa Whitehurst is a clinical psychologist, author of Jesus on Parenting: 10 Essential Principles That Will Transform Your Family (2004) and coauthor of The Nonviolent Christian Parent (2004). She offers parenting workshops, holds discussion groups on Nonviolent Christianity, and writes the column, "Democracy, Faith and Values: Because You Shouldn’t Have to Choose Just One" as seen on her website.