Self-Sacrificial Love in the Bioethics-SphereOriginal Article
Kiss today goodbye
And point me toward tomorrow.
We did what we had to do.
Won’t forget, can’t regret
What I did for love.
—A Chorus Line
Imagine the pain. Imagine the sleepless nights. One minute you are leading an ordinary life. Then something awful happens to someone you love—a heart attack, an accident, or a disease. Suddenly, not only are you coping with that tragedy, but you find yourself in a dispute with doctors or other family members over your loved one’s care, a literal matter of life and death.
You take a stand. You sue and are sued. Lawyers attack you. Bioethicists accuse you of acting irrationally. In the worst case, you find yourself in the Klieg lights of media-sensationalized controversy. You are mocked. Your motives are impugned. Your personal life is dissected. Your bank account is drained. I call this crucible the “bioethics-sphere.”
I have never been in the bioethics-sphere, but I have worked with—or reported on—many who have. Three cases that made international headlines stand out vividly in my mind, circumstances in which ordinary people acted in extraordinary self-sacrificial love.
Gerald Klooster’s Son
In 1995, when Gerald (Chip) Klooster II learned that his mother Ruth was taking his father Gerald, afflicted with Alzheimer’s disease, to euthanasia activist Jack Kevorkian for an assisted suicide, he knew he had to act. Chip flew to Florida—where his parents were visiting friends—and quickly whisked his father to his own home in Michigan. There he petitioned for guardianship and was granted temporary custody.
A bitter interstate struggle between Chip and his siblings and mother followed, and given Kevorkian’s then-notoriety, the dispute soon became a media circus. (I was a spokesman for Chip.) A California judge soon issued a contrary order, granting custody to Chip’s sister and ordering Chip to bring Gerald home to California—or face jail and a $500-per-day fine. Meanwhile, Chip was ordered by the court in Michigan to keep Gerald there!
The battle ended in federal court, where a mediator helped the family reach a settlement. Gerald was returned to California under the care of his daughter, and Chip’s family agreed in writing that Gerald would not be assisted with suicide.
But the battle was soon renewed. Over Chip’s strenuous objections, the California judge allowed Gerald to live again with his wife, Ruth. A few months later, Gerald lay in a hospital, close to death from an overdose of alcohol and sleeping pills. The police treated the case as an “attempted suicide with suspicious circumstances,” in part because Ruth had attempted to prevent resuscitation by paramedics after she called 911, and also because of the family history. (The police investigation was unable to determine whether there was wrongdoing involved in Gerald’s near-fatal overdose.)
Gerald recovered and eventually was returned to Ruth’s care. He died in 1999 of natural causes. Chip succeeded in preventing his father’s hastened death, but at great cost to himself, as he suffered both financial loss and, worse, permanent estrangement from his family.
Terri Schiavo’s Parents and Siblings
When Terri Schiavo’s heart stopped beating on the evening of February 25, 1990—cause unknown—no one could have predicted that, over a decade later, the legal and public relations fight over her life or death between her family and husband would transfix the world and even attract the concern of a dying Pope John Paul II.
Terri was resuscitated, but her cardiac arrest left her profoundly cognitively impaired. In the following years, Terri’s husband, Michael, fell in love with another woman, eventually fathering two children by her—all while still married to Terri. In 1998, he obtained court permission to remove Terri’s feeding tube, claiming that she would not want to live in such a devastated condition. But Terri’s family—father Bob and mother Mary Schindler, along with siblings Bobby and Suzanne—were determined to thwart his plan. They appealed in court and reached out to the public for support. When they posted a video online of Terri appearing to smile at her mother, the case became one of the highest profile bioethics disputes in history. Terri was ultimately dehydrated to death by court order. She died on March 31, 2005.
As a writer, I was intimately involved in advocating for Terri’s life, and during that intense time I became good friends with the Schindler family. Even now, more than ten years later, I remain awed by their valiant struggle, mounted at great personal cost: drained finances, lost privacy, media scorn, impugned motives, death threats—and eventually Bob’s death, which the family believes was caused by the stress of watching helplessly as his daughter died by court order.
The Schindler family was determined that Terri’s tragic death would not be in vain. They founded the Terri Schiavo Life and Hope Network, which supports and assists other families caught in the bioethics-sphere. (Full disclosure: I was recently named to the Network’s Board of Directors.)
Jahi McMath’s Mother
In 2013, Jahi McMath, then thirteen years old, suffered a cardiac arrest after undergoing throat surgery. She was resuscitated, but doctors declared her brain dead and pushed to have all life-sustaining medical treatment terminated.
Jahi’s mother, Latasha “Nailah” Winkfield, would have none of it. She sued to keep her daughter’s life support maintained. After a court-appointed physician from Stanford University confirmed the diagnosis, Jahi was ruled to be legally deceased and a death certificate was issued. But a legal settlement allowed Nailah to take possession of her daughter, still attached to medical machinery. She moved Jahi to New Jersey—which allows a religious exemption to brain death decrees—where she received further treatment and was eventually released to home care.
When the case first broke in the news, I wrote here that I believed Jahi was dead. Now, I have doubts. Contrary to doctors’ expectations, Jahi’s body has not broken down. Her skin remains smooth. There are no foul odors in her room as would be expected when a brain-dead person’s body deteriorates. I know—I visited Jahi’s family a few months ago at their apartment in New Jersey. Moreover, the respected neurologist Dr. Alan Shewmon, professor emeritus in pediatrics and neurology at UCLA, has testified that Jahi’s condition does not currently satisfy the criteria for brain death. As a result, Nailah has been allowed by a California judge to present evidence that Jahi is alive as part of an ongoing medical malpractice suit, a case that could make bioethical and medical history.
Despite Nailah’s success at reopening the legal question of Jahi’s death, some observers have accused her of exploiting her daughter for the money that could be obtained in the lawsuit. That is a canard. It is clear to me that Nailah absolutely believes that Jahi is alive. Moreover, she is fiercely dedicated to Jahi’s care—an exhausting round-the-clock task.
Over nearly twenty-five years of public advocacy involving sanctity-of-life issues, I have met many people who, like those mentioned above, struggled in the bioethics-sphere. There were the mother and sister of Robert Wendland, a Terri Schiavo-like case before Terri Schiavo. I’ll never forget the wife of an Alzheimer’s patient who fought a daunting but ultimately successful battle to prevent a doctor from removing her husband’s feeding tube. I most vividly recall the Canadian mother who, after hearing me speak, sobbed at the prospect of doctors pushing her catastrophically ill daughter off life support. Ten years later, at another speech, that mother brought her daughter—then a healthy teenager—to shake my hand. It was one of the most moving moments in my many years as an activist.
These self-sacrificing people humble me. Their courage inspires me. And to a person, whether they succeeded or failed, regardless of the difficulties they experienced or the personal consequences they faced, not one I ever met regretted what they “did for love.”