Although it seems more Americans are choosing to die in hospice instead of spending their last days in intensive care units, new findings published in the Journal of the American Medical Association show hospice is often a last resort, only after aggressive treatments fail.
Researchers studied more than 800,000 fee-for-service Medicare beneficiaries who died in 2000, 2005 and 2009. They were at least 66-years-old and died of cancer, dementia or chronic obstructive pulmonary disease. Findings show more seniors are dying in hospice, but the rate of ICU use in the last month of life is also higher. In 2009, some 30 percent of the decedents experienced the ICU in the last months of life. Some 12 percent had three or more hospitalizations in their last 90 days of life.
Although hospice use did increase from 22 percent in 2000 to 42 percent in 2009, about 30 percent used a hospice for three days or less.
“We are not getting the right care to the right people,” study author Joan Teno told Politico. “And if we want to improve care, we’ve got to change the incentives — and publicly report the quality of care.” Teno is a health policy expert at Brown University and a practicing physician at Home and Hospice Care of Rhode Island.
Patients are moving from their hospital bed to the ICU for aggressive treatments, and they then move to a hospice to die. Nearly one-half transitioned to hospice in the last two weeks of life. Teno connects these short-term stays to the growing pattern of greater use of intensive services at the end of life. Hospice becomes an “add on” that does not reduce hospital resources.
Moving across care settings can increase stress on the patient and disrupt pain medications. “This is extremely burdensome to family members watching their dying loved ones,” Teno said.
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’snew 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.
“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 Mediapreviously 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.