An elderly woman taken last year to St. John Medical Center in Tulsa, Okla., had suffered a massive stroke and could no longer speak, eat or drink. Although she had an advance directive specifying no artificial hydration or nutrition if she weren't going to recover, local health officials said, her nephew insisted the local bishop's directive on use of feeding tubes required the Catholic hospital to install one.
Her doctors and St. John officials debated how to proceed, struggling with ethically charged issues that hundreds of Catholic hospitals and nursing homes could face under new doctrine. In November, the U.S. Conference of Catholic Bishops approved a revised ethical and religious directive similar to the Tulsa bishop's. It states in part that Catholic health facilities have "an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally."
"This obligation," the bishops said, "extends to patients in chronic and presumably irreversible conditions," such as persistent vegetative state, who might live for many years if given such care. A feeding tube is not required, however, if it wouldn't prolong life, would be "excessively burdensome for the patient," or would "cause significant physical discomfort."
The directive raises fresh questions about the ability of patients to have their end-of-life treatment wishes honored — and whether and how a health care provider should comply with lawful requests not consistent with the provider's religious views. Hospitals and nursing homes do not have to comply with requests that are "contrary to Catholic moral teaching," according to longstanding policy that, as in the case of the revised directive, applies to non-Catholic patients as well.
If a patient or family didn't want a feeding tube "and the reason they don't want it is they basically want to die, then the Catholic institution would explain to them they can't cooperate with that and they would have to go to another institution," said the Rev. Thomas G. Weinandy, executive director for doctrine at the bishops' conference, who helped draft the policy.
Experts say no other large health systems in the U.S. have nutrition and hydration policies like those governing Catholic facilities.
Catholic officials have said the directive is consistent with previous doctrine. But the revised language eliminates what many Catholic ethicists viewed as flexibility in its application to patients in a persistent vegetative state. The previous policy said "there should be a presumption in favor of" use of feeding tubes, rather than an "obligation."
Moreover, according to Catholic officials and outside experts, the directive may well apply to a wider range of patients, those that it describes as having "chronic and presumably irreversible conditions," though the organization representing Catholic health facilities downplays the impact. Experts say this affected group could include those with massive strokes, advanced Alzheimer's disease, traumatic brain injury and Lou Gehrig's Disease.
"If someone had a stroke and the doctor says he won't die though he may be very sick, then they should give him nutrition and hydration," Weinandy said. "You can’t just starve him to death. It's hard to know whether someone can regain consciousness or not."
Dr. Lachlan Forrow, a Harvard University medical ethicist and palliative care specialist, expressed strong concern about the new policy, stressing its potentially broad scope. "That gets to be a very, very large number of people," said Forrow, who heads a panel developing recommendations for the state of Massachusetts on end-of-life care.
Forrow also said Catholic health facilities haven't met a key ethical test — adequately informing the public of their policy. If they don't do so, "patients and their families will arrive at the hospital in crisis and find that the care they want and need and have a right to as Americans is being refused."
Weinandy said "obviously the public should know what the directives say," and patients and relatives "can easily download the directives or get a copy."
The revised directive arises from statements made by Pope John Paul II in 2004 during the legal battle surrounding Terry Schiavo, the Florida woman kept alive on a feeding tube for nearly 15 years, and from clarifying statements by Vatican officials in 2007.
Sister Carol Keehan, executive director of the Catholic Health Association representing hospitals and other facilities, said the bishops' point is "you don’t have the right to just stop feeding them because their life is a burden." But the new policy, in her view, would come into play infrequently, mainly in cases involving a persistent vegetative state. For that reason, said the CHA senior director for ethics, Ron Hamel, "There probably was not much publicizing" of the revised directive by Catholic facilities.
There are more than 600 Catholic hospitals and hundreds of nursing homes and other facilities; the hospitals alone admit nearly six million patients a year. Keehan doesn't see much potential for conflict between patients' and families' end-of-life wishes and the new directive. "Advance directives are held in great respect in Catholic hospitals," she said in a recent interview. "Some might like to say there's a terrible problem, but there isn't."
Most states require honoring a patient's advance directive or the designated proxy's decisions in end-of-life situations — or else transferring the patient to a facility that will honor those wishes. It is against the law in every state to place a feeding tube or provide other medical treatments against the expressed wishes of the patient.
St. John Medical Center considered transferring the stroke victim, who was in her 90s. According to local health officials familiar with the case who did not want to be named and would not name the patient, the woman's physicians believed she had at most a few months to live but would die sooner unless a percutaneous endoscopic gastrostomy ( PEG ) tube was surgically inserted. The doctors, however, balked at doing that because the woman's advance directive requested no artificial nutrition or hydration. Many Americans put that in their advance directives, experts say.
But the patient's nephew, her designated proxy, demanded that a tube be inserted, citing a September 2008 letter written by Tulsa Bishop Edward J. Slattery, who ordered Catholic health facilities in his diocese to provide artificial nutrition and hydration in such situations. Slattery relied on a 2007 statement by the Vatican's Congregation for the Doctrine of the Faith asserting a moral obligation to do so.
Yet Oklahoma law requires honoring a patient's advance directive or else transferring the patient to a provider that will honor it. Initially, the attending doctors and St. John officials sought to transfer the woman to a nursing home where her request to forgo a PEG tube would be honored. But her nephew vetoed that. Given that the nephew's position was in line with the bishop's, the hospital then tried to transfer the patient to a nursing home where a feeding tube would be installed.
In the midst of the conflict, the patient died. Through a spokeswoman, Joy McGill, St. John declined to talk about the case. Dr. G. Kevin Donovan, director of the Oklahoma Bioethics Center at the University of Oklahoma-Tulsa, which later discussed the case in one of a series of private ethics forums held with staffs of area hospitals and clergy, confirmed its existence. But he wouldn't discuss details other than to say the nephew, not the hospital, demanded the PEG tube.
Some experts predict interpretation and enforcement of the bishops' new policy will vary by institution and diocese around the country. "Some may be more inclined to stretch exceptions, while other institutions are run by people who are more conservative and right-to-life, and they're going to interpret the exceptions narrowly," said Alan Meisel, a professor of law and bioethics at the University of Pittsburgh.
The issue came up recently in the Denver area. When the Sisters of Charity of Leavenworth Health System recently took over the non-Catholic Good Samaritan Medical Center and Lutheran Medical Center, the medical staffs and hospitals boards fought the move because they didn't want to be governed by Catholic religious directives on feeding tubes and other treatments.
Dr. Porter Storey, a palliative care specialist for Kaiser Permanente who sees patients at Good Samaritan, said many Kaiser members and doctors, including himself, were alarmed. So he read the bishops' revised directive carefully. Now he's convinced it won't stop him from providing appropriate end-of-life treatment. (KHN is part of the Kaiser Family Foundation. Neither is associated with Kaiser Permanente.)
"We'll continue to use tube feeding when it seems helpful and appropriate, consistent with what the patient's family wants," said Storey, who heads the American Academy of Hospice and Palliative Care Medicine. "If it's not helpful and appropriate, we'll discontinue it."
Christine Woolsey, a spokeswoman for the Sisters of Charity, said, "We often get asked, 'Will my living will be honored?' The answer unequivocally is yes."
Whether the policy is strictly enforced or not, some critics fear it will impose greater stress on families. "If family members believe they know what mom or dad wants but get the message from hospital or nursing home staff that it's sinful and wrong, that's a pretty hard thing for a grieving family to deal with," said Barbara Coombs Lee, president of Compassion & Choices, a national organization that counsels people in end-of-life situations and has been sharply critical of the bishops' policy. "It feels like someone is trying to guilt and shame them."
This story was produced through collaboration between NPR and Kaiser Health News (KHN), an editorially independent program of the Henry J. Kaiser Family Foundation, a nonpartisan health-care policy research organization. The Kaiser Family Foundation is not affiliated with Kaiser Permanente.