Feeding Tubes: Families Struggle With Decision

Feeding Tubes: Families Struggle With Decision

Posted on Saturday, November 24th, 2012 at 3:12 pm by Life Matters Media

Brown University, Joan Teno

Many families caring for seniors with advanced neurological disease face this dilemma: prolong their loved one’s life by artificial means via a feeding tube or stop feeding them altogether. Lisa Krieger’s new feature for Mercury News focuses on the billion-dollar feeding tube business and why some families regret their decision to opt for artificial nutrition.

One-third of nursing home residents suffering from dementia receive tube feedings, contributing to the $1.64 billion industry. However, some families and physicians insist the value of feeding tubes is overrated, since they provide little medical benefit and increase pain for those suffering from progressive neurological disease.

Source: mercurynews.com

“The number of nursing home residents with advanced dementia who get feeding tubes each year varies widely across states,” Krieger reports. The only comprehensive study on the matter found the average rate of use nationwide was 54 per 1,000 people.

Racial minorities are also more likely to opt for artificial tubes than whites. Life Matters Media previously reported that blacks are twice as likely than others to choose aggressive end of life treatments.

As medical costs continue to rise and the baby boomer population ages, views on artificial nutrition may be changing. “Decades after the tube achieved widespread use for people with irreversible dementia, some families are beginning to say no to them, as emerging research shows that artificial feeding prolongs, complicates and isolates dying,” Krieger writes.

For example, a 1999 study by Dr. Thomas Finucane of Johns Hopkins Medical Center found no evidence that feeding tubes prolong the lives of demented nursing home patients. They also didn’t prevent pneumonia or improve comfort.

Finucane’s analysis asserts: “We found no data to suggest that tube feeding improves any of these clinically important outcomes and some data to suggest that it does not… risks are substantial. The widespread practice of tube feeding should be carefully reconsidered…”

Most families, however, are accustomed to caring for their sick by feeding them, a reason why the decision to opt for or against artificial nutrition is especially emotional. “Food is how we comfort those we love; when all other forms of communication have vanished, feeding remains a final act of devotion,” Krieger writes.

Sometimes a terminally ill individual may not feel pain when a feeding tube is first inserted in the stomach. As the illness progresses and pain begins to get more intense, removing the tube becomes a moral debate. This quandary often comes as another surprise for families.

“It is amazing how long you can keep someone alive,” said Dr. Leslie Foote, medical director of Windsor Gardens Rehabilitation Center in California. “But we sure aren’t doing them any great favors.”

Despite some change in public opinion, families may not have the choice to reject feeding tubes. The fallout from the controversial 2005 Terri Schiavo case led the Catholic Church to order doctors at its hospitals to ignore patients’ advanced directives- even if they do not want artificial feeding. Catholic hospitals may mandate artificial nourishment.

In 2009, the U.S. Conference of Catholic Bishops issued the directive to more than 1,000 Catholic hospitals and nursing homes, as well as to all Catholic doctors.

“People with end stage dementia still possess human dignity. And that dignity must be respected,” said Vice- President of Corporate Ethics at Catholic Daughters of Charity Health System Gerald Coleman. Krieger insists that tube feeding constitutes ordinary care at Catholic hospitals.


Catholic Hospitals: Doctrine Trumping Patients’ Wishes

Posted on Sunday, October 7th, 2012 at 8:18 pm by Life Matters Media

Catholic hospitals may sidestep advanced care directives for unconscious patients and mandate artificial nourishment, even if a patient has expressed reluctance to prolong life. In 2009, the U.S. Conference of Catholic Bishops issued the directive to more than 1,000 Catholic hospitals and nursing homes, as well as to all Catholic doctors.

The controversial Terri Schiavo case influenced the Catholic Church’s stance on artificial nourishment and end of life care, eventually directing policies in Catholic hospitals.

The Terri Schiavo effect

After a seven-year, high profile legal battle, 41-year-old Terri Schiavo’s feeding tube was removed in 2005. Doctors determined she had been in a persistent vegetative state for fifteen years, after cardiac arrest led to debilitating brain damage. Her husband, Michael Schiavo, petitioned for her feeding tube to be removed. However, her parents contested she was conscious and should be allowed time to recover. Michael Schiavo asserted he was honoring his wife’s wishes not to be kept alive artificially.

The case eventually made it to the Florida Supreme Court. “Terri’s Law,” which had given Florida Governor Jeb Bush the authority to intervene and reinsert the tube, was found to be unconstitutional.

The tendentious decision to pull the feeding tube from Schiavo would inspire the Church to reevaluate its doctrine and policies regarding end of life care.

Two years after Terri Schiavo died, The New York Times’ Patrick J. Lyons wrote about the fallout from the case. “The ethical and moral dilemmas surrounding the end of life can be some of the most difficult,” Lyons writes. “Ms. Schiavo’s long coma and the struggle over who should decide what to do about it attracted huge attention and sent off political and social shock waves that still reverberate.”

Even the Vatican was urged to issue a statement affirming a position on end of life and artificial nutrients in 2007. Lyons writes, “The Vatican had to deliberate for two years over how to answer a request for guidance on cases like Ms. Schiavo’s that was posed by American bishops after she died in 2005.”

Advanced directives may not matter

The Congregation for the Doctrine of the Faith, which oversees Catholic doctrine and investigates crimes against the Church, determined that a patient in a “permanent vegetative state” must receive the administration of water and food, even if through artificial means.

As a result of the Congregation’s order, Catholic hospitals may now invalidate advanced directives declining artificial nutrition. Even so, Catholic hospitals still continue to receive billions in federal Medicare and Medicaid reimbursements.

Sally Quinn, religion writer for The Washington Post, describes how her ailing 89-year-old mother does not wish to be kept alive through artificial means if she has little hope of recovery. “She drew up a living will decades ago, and it specifies that no extraordinary measures, including artificial hydration and nutrition, be taken to prolong her life if there is no reasonable hope of recovery.”

“I would not dream of countermanding my mother’s decisions about end-of-life care, but, if she were unlucky enough to be taken to a Roman Catholic hospital in an emergency, the church of her girlhood would,” Quinn writes. “The relatives of unconscious patients who have specified their opposition to artificial nutrition will have a fight on their hands-and may have to transfer their loved ones to another hospital-to carry out the patient’s wishes.”

According to the Conference, “The free and informed judgment made by a competent adult patient concerning the use or withdrawal of life-saving procedures, should always be respected and normally complied with unless it is contrary to Catholic moral teaching.”

Catholic hospitals number close to 600 in the U.S, and they provide about 12 percent of the nation’s health care. Quinn asserts that Catholic hospitals once adhered to patient wishes at the end of life. “That changed with the Terri Schiavo case, in which Pope John Paul took the side of those who insisted that forced nutrition and hydration was a ‘natural’ means of preserving life and must always be used.”

Barbara Coombs Lee is the president of Compassion and Choices, a non-profit dedicated to enhancing end of life choices. She writes in an article for The Huffington Post: “A little known but far reaching aspect of the Church’s organizational structure requires every hospital, nursing home, assisted living center, etc., with a Catholic charter to abide by a set of rules called ‘Ethical and Religious Directives for Catholic Health Care Services.’ “

These 72 directives, Coombs Lee explains, itemize how the services patients receive conform to Catholic doctrine.

According to directive 58: “In principle, there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally. This obligation extends to patients in chronic and presumably irreversible conditions (e.g., the ‘persistent vegetative state’) who can reasonably be expected to live indefinitely if given such care.”

According to Sister Carol Keehan, executive director of the Catholic Health Association, “Advance directives are held in great respect in Catholic hospitals. Some might like to say there’s a terrible problem, but there isn’t.”

Learn more about Catholic hospitals at Kaiser Health News and NPR News