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Feeding Tubes: Families Struggle With Decision

11/24/2012

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.

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