The culture of death lives on

In 1990 Terri Schiavo suffered a heart attack that left her severely brain damaged. Two years later, her husband—after suing a doctor for malpractice—sat in a Clearwater, Fla., courtroom and asked a jury to grant him a settlement he would use “in a heartbeat” for his wife’s rehabilitation: “She’s my life and I wouldn’t trade her for the world.”

The court awarded him almost $2 million in damages, but he never spent any of it on rehabilitation for Terri, who was warehoused for 14 years without any attempt to improve her condition. Although Michael Schiavo later admitted to two extramarital affairs during and after the trial, a judge ruled neither his love life nor his financial motivations were relevant.

Following a lengthy legal battle, a Florida court ordered Terri Schiavo’s feeding tube removed on March 18, 2005. She died 13 days later.

“Many across our state and around the world are deeply grieved by the way Terri died,” said then-Florida Gov. Jeb Bush, who used executive and legislative means to extend the woman’s life. “I feel that grief sharply as well. I remain convinced, however, that Terri’s death is a window through which we can see the many issues left unresolved in our families and in our society. For that, we can be thankful for all that the life of Terri Schiavo has taught us.”

This week marked the 10th anniversary of Schiavo’s death, but many in the pro-life community question whether American society has learned anything. Critics argue a culture of death has metastasized over the last decade into a full-blown system of death—infecting politics, medicine, and law. The right-to-die movement has convinced a spate of state legislatures to consider bills that would legalize physician-assisted suicide, legal groups report they regularly battle hospitals and ethics committees that want to discontinue care for seriously ill patients, and families often choose to withdraw food and water from loved ones diagnosed as being in a persistent vegetative state.

“Sadly, the legal deck is now stacked in favor of declaring death,” said attorney Catherine Glenn Foster, an end-of-life expert at Alliance Defending Freedom (ADF).

Bobby Schindler—Terri Schiavo’s brother, who now runs the Terri Schiavo Life and Hope Network located outside Philadelphia—said most Americans don’t have any idea that what happened to his sister happens every day. He lays much of the blame on what he believes is agenda-driven media reporting, as in Terri’s case: “You have an estranged husband who is living with another woman being praised for deliberately starving and dehydrating his wife.”

Today’s cultural climate—coupled with the aging Baby Boomer generation—has led some to predict end-of-life issues could overtake abortion as the primary battleground of the pro-life movement.

Brain death

In 1968, a Harvard University ad hoc committee published a report that defined brain death, and it subsequently became the prerequisite for allowing organ donation. The criteria included five elements: unreceptivity and unresponsiveness, no movement or breathing, no brainstem reflexes, and a flat EEG (the test measuring the brain’s electrical activity). All tests had to be repeated at least 24 hours later and show no changes.

Today’s diagnostic criteria are based on that foundation and enjoy widespread acceptance among physicians. But debate continues over the ethics and application of brain death. According to the Mayo Clinic’s Dr. Eelco F. Wijdicks, worldwide guidelines bear “stunning” variation, ranging from the tests required to the number of doctors necessary to declare brain death. Some of those differences extend to jurisdictions in the United States.

In late 2013, the case of Jahi McMath generated national headlines after complications from nose and throat surgery led doctors to declare the 13-year-old brain-dead. The hospital sought to remove her from life support, but the teen’s family objected. They eventually succeeded in moving her to an undisclosed location in New Jersey. There they have a right to reject a doctor’s diagnosis—unlike California, which issued a death certificate for McMath without her parents’ consent.

“You can be dead in one state and not in another,” said Dr. Paul Byrne, a former Catholic Medical Association president who traveled to California to help the family move McMath to New Jersey. Byrne is an outspoken critic of brain death, calling it the “enemy of life” that wasn’t born out of evidence-based science. He said the fact that McMath’s body continues to push out the air her ventilator pumps in proves she’s not a cadaver.

Byrne’s views are outside the mainstream, including in parts of the pro-life community (the Christian Medical and Dental Associations affirm the validity of brain death). But even though he’s now 82 years old, desperate families still reach out to him for assistance.

Dr. Robert Truog, director of the Center for Bioethics at Harvard Medical School, told me McMath is an example of what experts already knew: “Integrated functioning of the organism” may continue after a diagnosis of brain death. He said incorrect diagnoses do rarely occur (typically because a physician overlooks a potentially reversible condition, such as hypothermia or a drug overdose), but accurate assessments leave little doubt that a patient will never regain any form of consciousness.

Truog’s research work has focused on answering the central ethical question: Why should we think someone who meets brain death criteria is actually dead? He acknowledged the issue remains open for discussion: “The conceptual foundation of brain death remains a work in progress.”

Disorders of consciousness

A distinct medical difference exists between brain damage and brain death. Many people (and media reports) mistakenly described Terri Schiavo as brain-dead, but that was incorrect—no one denied her brain functioned at a low level.

Schiavo had what’s known as a disorder of consciousness, a brain injury spectrum including three main forms that are often confused. The earliest stage is a coma, marked by closed eyes, a lack of awareness, and no meaningful interaction with the environment. Coma patients who don’t die or regain full consciousness revert to either a vegetative state (similar to a coma but with some arousal, such as the open eyes Schiavo exhibited) or a minimally conscious state (definite but inconsistent signs of consciousness—which Schiavo’s family and their doctors insisted she had).

In all 50 states it is legal to withhold food and water from a person doctors believe is in a vegetative state, but not if the person is minimally conscious. That line is often blurry: Two studies conducted 15 years apart found some 40 percent of patients diagnosed as vegetative were actually minimally conscious.

Donna Patane found herself faced with this kind of murky prognosis in 1970 after her 2-year-old daughter Tara was mysteriously injured while in the care of a babysitter. The girl fell into a coma that lasted weeks, during which she stopped breathing at least seven times. Patane said if doctors had pressured her and her husband to withdraw care, they probably would have, but no one ever asked them to do it.

In the following months, Tara regained minimal consciousness and said her first word: “Mama.” Today she is 47 years old and lives in an assisted-living facility in Southern California. She remains a quadriplegic, but functions verbally and mentally on an adult level.

“I enjoy my life,” Tara told me in a phone interview. She said she likes going on outings, receiving visitors, and watching movies. She’s currently reading Little Women on her iPad.

“I lost my daughter Tara, but I got another daughter Tara,” Patane told me. “She is not the same, but I learned to love her and appreciate her for the gifts she has. She’s a very special person.”

According to activists and legal professionals, Tara’s odds of survival could very well be worse today, because many physicians are under pressure to make hasty prognosis decisions. Those decisions have been reinforced by a series of legal precedents, despite the many stories of recoveries following early misdiagnoses (see “Stories of hope” at the end of this article).

ADF’s Foster told me her organization used to receive a couple of calls a month from families fighting to continue care for a loved one, but now it’s one or two a week. Some families have reported medical staff placing “DNR” (do not resuscitate) orders on patients’ charts without the family’s knowledge or consent. Foster said she has seen cases in which “a family wins in court, but the patient dies because doctors determined not to treat based on a futility statute—and never informed the family.”

Specialists are making progress in treating disorders of consciousness, but convincing insurance companies to pay for care remains a challenge. Those harsh financial realities often lead directly to conflicts between hospitals and families.

“Having a serious disability shouldn’t be a death sentence,” Foster said. “And judging someone’s worth by their ‘quality of life,’ no matter what it looks like, is subjective and dangerous for the entire community of individuals with disabilities.”

Physician-assisted suicide

The growing public perception that many who are seriously ill want to die fuels the fire. The mainstream media have heaped sympathetic coverage on individuals such as National Public Radio host Diane Rehm, whose husband John starved himself last year to escape the ravages of Parkinson’s disease. Rehm said a doctor should have been allowed to help him die, but assisted suicide is illegal in Maryland, where they lived.

Media reports last year also documented 29-year-old Brittany Maynard’s decision to move to Oregon—where physician-assisted suicide was legalized in 1997—to find a doctor who could help her end her life. Maynard, who had terminal cancer, has become the face of the “death with dignity” movement.

Another terminally ill woman, Kara Tippetts, offered the alternative perspective. Tippetts, who died last month at age 38, wrote publicly about her path to death and in a letter last October urged Maynard to reconsider her decision. Many point to Tippetts’ example as true death with dignity.

The assisted suicide debate has played out around the world, where several countries have already legalized it. That experience has led some proponents to reverse course. “Some slopes truly are slippery,” said Utrecht University professor Theo Boer, formerly an outspoken proponent of euthanasia in the Netherlands who has opposed legalization efforts in Great Britain, where it remains illegal. He said the practice went from being a last resort to a normal occurrence: “I was wrong—terribly wrong, in fact.”

In February the Supreme Court of Canada unanimously struck down that country’s ban on assisted suicide, giving lawmakers a year to craft a law regulating the practice. At least 18 U.S. states and the District of Columbia are considering following suit, prompting various groups to mobilize for and against the measures.

Last week, The Heritage Foundation released its first-ever position paper on the issue. “Doctors should help their patients to die a dignified death of natural causes, not assist in killing,” wrote Heritage fellow Ryan T. Anderson, who argued the proposed measures would endanger the vulnerable, corrupt the practice of medicine, and betray human dignity.

Chris Reilly, the American Life League’s director of external relations, agrees. He told me acceptance of euthanasia would only increase the existing level of apathy regarding every individual’s right to life. Reilly said end-of-life issues are becoming the front line of the pro-life battle, and “in many ways the pro-life movement needs to catch up to that.”

Stories of hope

The following is a sampling of people who have beaten the odds of a bleak medical prognosis.

Jesse Ramirez, a 36-year-old veteran, suffered a severe brain injury in 2007, from which doctors said he wouldn’t recover. His family went to court to get food, water, and antibiotics restored after doctors withheld them for five days. Ramirez awoke two weeks later and eventually walked out of the hospital under his own power.

Kate Adamson was diagnosed as vegetative after a near-fatal stroke in 1995. The hospital removed her feeding tube, and it was only reinserted after eight days when her lawyer-husband threatened to sue. Adamson now walks with a cane and is a motivational speaker.

Devon Rivers was diagnosed as vegetative after collapsing from a seizure in 2004. After being unconscious for 22 months, he began breathing on his own and responding to his environment.

Sam Goddard, a 23-year-old Australian, had eight strokes that landed him in a coma for 45 days in 2010. Doctors urged the family to deposit Goddard in a home, but his then-fiancée learned Ambien could possibly help. The drug worked for short periods of time, allowing Goddard to learn to walk and talk again.

Teri Roberts was diagnosed with a bacterial infection in 2014. She went into a coma from which doctors said she wouldn’t recover, but she “magically woke up” four hours before her life support would have been cut off on Dec. 22. Roberts, 56, had her hands and feet amputated in January, but she plans to re-learn how to walk and drive with prosthetic limbs.

Joey Cronin, a 12-year-old from Texas, slipped into a coma after a severe asthma attack in January. Hospital staff refused to insert a feeding tube, and Cronin’s parents barely persuaded them not to pull life support. A few days later, the boy started breathing on his own. Last month, the family moved to New Jersey, where more lenient state laws allow families to have more say in medical decisions. —J.C.D., with additional reporting from Kristin Chapman