A Duty to Die?

by Karla Dial

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Last February, James Blanton had a stroke. It was devastating for the 62-year-old Vietnam War veteran, who was a Navy captain and, according to friends and family, one of the most articulate men they knew: The stroke wiped out his ability to speak and paralyzed his right side.

But the stroke wasn’t as devastating as what’s happening to him now.

Blanton was transferred to a nursing home in his North Carolina hometown when it became apparent he’d need skilled care to help him recover; his paralysis has forced him to rely since last March on a feeding tube placed directly in his stomach. Although Blanton is depressed about his inability to speak and — according to his daughter, Holly Jones — probably not the model patient his nurses wish he was, he’s never lost consciousness or his ability to answer yes-or-no questions.

So imagine Jones’s surprise when she received a call from the facility’s administration last September, five months after her father’s admission.

“They said he could be taken off his feeding tube — that there’s research that indicates it’s an ethical thing to do and it’s not a painful death,” she told Citizen. “I was really surprised they said I could just let him starve like that. I didn’t even realize that was possible — I thought they had an obligation to help people.”

Jones told the administrator that she wanted her father fed — period. In return, she said, she got a lecture: that her father’s prognosis was poor, and his quality of life so bad, that he’d be better off dead.

“She said I needed to educate myself,” Jones said. “I felt like she was talking down to me, that she had all the answers. If I didn’t feel as strongly as I do about defending life, I might have been persuaded because she was so adamant about how ethical and humane this is.

“It’s like, if you can’t contribute to society, we don’t really need you here. That’s the message that’s being sent.”

What Jones has run up against is a utilitarian attitude that’s been quietly creeping through health care for decades. It has led many hospitals to adopt what’s known as “futile care” or “futility” policies — those that determine the circumstances under which patients may be denied costly life-saving or -sustaining treatments.

When someone is deemed to fall into the “futile” category, family members often find hospitals pressuring them for permission to end the patient’s life — and sometimes taking them to court if they refuse. In other cases, said Nancy Valko, president of Missouri Nurses for Life and one of the trend’s most vocal critics, nurses are being ordered to remove feeding tubes or withhold antibiotics because “the patient is going to die anyway, so it might as well be now.”

A growing number of people from all kinds of disciplines — medicine, bioethics, disability rights and consumer advocacy—are concerned about these policies. The problem is, no one knows how many hospitals have adopted them because many have done so in secret. The first time most people encounter one is in the hospital, when a loved one’s life is on the line.

Adding to the problem is new research showing brain-injured patients — whether comatose, deemed to be in “persistent vegetative states,” or “minimally conscious” — may have a good deal more awareness of their surroundings than most doctors realize. And that makes dismissing their care as “futile” a slippery slope that could eventually, and perhaps all too soon, lead to legalized murder.

Theory vs. Practice

The history of medical ethics dates back to ancient Greece, when Hippocrates swore an oath to “first, do no harm.” Through the years, physicians took a paternalistic approach: They made most of their decisions in an effort to save patients, but knew that when medicine had exhausted itself, it was time for the patient to die.

Technological breakthroughs in the last century have changed all that. The patient-autonomy movement began when people understood the heroic measures and life-sustaining technology available to them—and began demanding them, sometimes over their doctors’ objections. Ironically, life-support measures became so commonplace that, in the 1970s, families began arguing for the right to allow loved ones who had no hope of recovery to be taken off life-support machines.

The discipline of bioethics was born at about the same time, and quickly split into two schools of thought. One understood the sanctity of human life; the other valued not humanity, but “personhood” — arguing that humans only become people when they have certain rational or cognitive capabilities.

Bioethics is no mere academic exercise; it has real-life impact. In the early 1980s, a presidential health commission recommended that hospitals rely on ethics committees — usually a group of doctors, clergy, lawyers and laymen—to mediate disputes over patient care that might otherwise go to court. In 1992, the Joint Commission on Accreditation of Healthcare Organizations required them to do so.

The American Medical Association followed up in 1991, urging hospitals to be clear and precise in their policies for withholding treatment from patients. Three years later, the association’s Council on Ethics and Judicial Affairs issued a statement saying “denial of treatment should be justified by reliance on openly stated ethical principles and acceptable standards of care … not on the concept of futility, which cannot be meaningfully defined.”

The Society of Critical Care Medicine’s ethics committee concurred.

“Futility should not apply to several types of treatment often mislabeled as futile: those that are extremely unlikely to be beneficial, those that have beneficial effects but are extremely costly and those that are of uncertain or controversial benefit,” the committee wrote in the journal Critical Care in Medicine in 1997. “These treatments may be inadvisable, costly, or a poor use of health care dollars, but they are not medically futile.”

But that’s not always the standard hospitals follow, said Wesley J. Smith, a senior fellow at the Discovery Institute and consultant for the International Task Force on Euthanasia and Assisted Suicide.

Ethics boards are approving policies that will allow treatment to be denied for any number of reasons—usually based on their own subjective notions of patients’ quality of life. When families sue, a hospital usually needs only to show that it hasn’t violated its own policies in order to win the case.

“The idea is to make it so hospitals can win lawsuits when they occur because then they can go to the judges and say, ‘This is standard medical practice,’ ” Smith told Citizen.

“When a [committee] makes an announcement from on high, it may be based on a value system most Americans don’t share.”

No Discussion

Many doctors don’t share those values, either. Dr. Michael Franzblau, who retired from the University of California-San Francisco Medical School in 1998, has quit two ethics committees in recent years because he said they were becoming something they were never meant to be.

“I took opposition to [the committee determining] the level of care given to patients [and] superceding the rights of the family and attending physician,” he told Citizen about one of the hospital administrations for which he used to work.

“I expressed my dismay over the fact that they would like to codify futile care to the extent that the ethics committee will put pressure on the family to stop all treatment. They’re not interested in a discussion of this; they just want to ram it through.”

Medical literature proves Franzblau’s point:

• A poll of 26 California hospitals taken by Cambridge Quarterly of Healthcare Ethics in 2000 showed that all but two already had adopted futility policies; of those, 19 gave the final decision-making power over a person’s life or death to someone other than the patient or a family member.
  

• In November 2002, the Hospital of the University of Pennsylvania announced that intensive care will no longer be given to patients in persistent vegetative or minimally conscious states; only patients who explicitly request intensive care before receiving a catastrophic brain injury will receive it.
  
• In January 2003, the Cedar Falls Courier chronicled how hospitals in Des Moines, Iowa, had put rules in place to allow “medical staff to withdraw treatment over a family’s objection.”

Franzblau believes the medial futility movement is closely tied to the euthanasia movement: As a delegate to the California Medical Association, he saw the issue of futile care being brought up every year from about 1990 until he retired—and always by the same people who pushed for assisted suicide.

A ‘Cure’ for What Ails You

The specter of euthanasia has people like Diane Coleman worried — and speaking out. Coleman is president of Not Dead Yet, a secular national disability-rights group that opposes legalization of assisted suicide and euthanasia because of injustices it sees toward older and disabled people in the health care system and society overall.

“There’s physiologic futility, and then quality-of-life futility, where health care providers are wanting to say, ‘Your quality of life isn’t good enough to justify us spending all these resources on you,’ ” said Coleman, whose spinal muscular atrophy has forced her to use a wheelchair since age 11 and a nighttime breathing machine since early 2002.

“This makes people with disabilities very nervous. I haven’t been able to get all the physical therapy that would have been beneficial to me because it won’t cure me. And if it doesn’t cure you, insurance companies often say you can’t have it.

“In futile care, they’re taking that a step further, but the message is very familiar to people with disabilities. It’s not news to us that health professionals judge our quality of life to be far less than how we judge it ourselves. The view that our lives are futile is frightening, no matter who holds it.”

That view tends to be strongest toward people who have suffered brain injuries — particularly those who’ve lost awareness for long periods of time, or their ability to communicate. So some pro-life ethicists were encouraged when research was published in the June 2002 issue of the journal Brain: A team of neurologists led by Nicholas D. Schiff, a consciousness-disorders expert at Cornell University’s Weill Medical College, studied five patients in persistent vegetative states. They took both PET scans and MRIs of the patients’ brains while playing tapes of family members’ voices — and found that certain areas of their brains showed nearly as much activity as an uninjured brain might under similar circumstances.

Moreover, Dr. Joseph Giacino, associate director of neuropsychology at the Center for Head Injuries in Edison, N.J., has been known to successfully, if momentarily, rouse some minimally conscious patients to full awareness by digging his fingers deep into their muscles to stimulate nerve endings. As reported in the Sept. 28, 2003 edition of The New York Times Magazine, some patients have told him their names before slipping back into unawareness — and others have told him to leave them alone.

These are patients who are several years past their initial brain injuries — patients whom many doctors would write off as having no hope of a “meaningful recovery.”

To Valko, who started her nursing career when Nixon was in the White House, that’s hardly surprising.

“We nurses all knew that [comatose patients retain awareness] years ago,” she told Citizen. “When someone comes out of a 20-year coma, everyone says, ‘It’s a miracle!’ It’s not. We saw these kinds of miracles all the time when we gave people a chance to recover.”

What’s a Christian to Do?

Futile-care policies aren’t just being promulgated at secular hospitals. Valko is horrified that the idea is taking root in Catholic hospitals as well. In the July-August 2000 issue of Health Progress — the Catholic Health Association’s magazine — lawyer Catherine Mikus and the Rev. Peter Clark, an ethicist, argued for a new definition of futility: They said Catholic hospitals should have the power to overrule patients’ and families’ wishes, and win the court battles that follow.

The growing threat of futility policies demands that people who believe life is sacred convince doctors and others that policies are administered in a way that respects human life.

According to Wesley J. Smith, it’s imperative that pro-life doctors — and, wherever possible, clergy and laypeople — serve on ethics committees (see below, “What to Ask”). But that’s no easy task.

“A pro-lifer who got on one would have to be a stealth pro-lifer,” he told Citizen. “Let’s say you had a nurse at a hospital who doesn’t go along with some of these agendas. She might be able to get on one, but as soon as she started participating and objecting, there would be a lot of hostility aimed at her. You have to have a very thick skin.”

David Fletcher of the Center for Bioethics and Human Dignity, who teaches at Wheaton College, agreed.

“If people have done some preparation, they’ll be pretty valuable to a committee,” he said. “A physician who has some experience in this issue would be valuable, or if you have a master’s in bioethics, that would be good. But if you are known for having a particular stance, you might have some trouble.”

Sometimes, there are repercussions for challenging the establishment. When Valko refused to follow a doctor’s order to increase a patient’s intravenous morphine drip “until he stops breathing” because he survived after having a ventilator removed, hospital administrators threatened to fire her. Three California nurses were suspended for reporting a doctor who later admitted he gave a lethal injection to a child. And an insurance company executive addressing an ethics-committee conference recommended that attendees steer clear of “family values” members.

But being ridiculed pales in comparison to the consequences a lot of flesh-and-blood people will face if those who are in a position to do something do nothing.

“These meetings [often] are held in secret,” Smith said. “The members are anonymous. There is no written record of what is said. Unless the media starts doing a better job of reporting and starts looking at the consequences to weak and vulnerable people, all of this stuff may be in place before people realize it’s happening.

“Then it’ll be too late.”

What to Ask

Want to find out what the end-of-life policies are at your hospital — and how you might influence them?

• Call the hospital administration and ask about medical futility policies. Be prepared to meet with some resistance, particularly if your hospital is private. In that case, Carrie Gordon Earll, a bioethics analyst at Focus on the Family, suggests finding out from your family physician whether he has privileges there or knows of someone who does. Ask that person how the hospital handles ethical issues.
  

• Hospitals will differ in the criteria used for ethics-committee membership. Some restrict it to doctors; others accept respected community members. Call the committee chairman at your hospital to find out whom the hospital will allow, and under what conditions. Do they need a certain kind of degree? If laypeople aren’t welcome, how about clergy?
  

• Ask pro-life doctors and clergymen with an interest to submit their names to be part of the committee. “Expect to take your lumps,” warns Dave Davis, a medical-research writer at Focus on the Family. “They’ll pull in scientists from local colleges and universities and every other person they know who will further their agenda. You may be the only person on your side, so be well read in the scientific, medical and ethical literature so you’ll know how to defend your statements. You have to be articulate in explaining why a particular practice or approach is at odds with a philosophy that embraces the value of life.”

Copyright © 2004 Focus on the Family. All rights reserved. International copyright secured.

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