Dementia To Test U.S. Health System, Experts Warn

Dementia To Test U.S. Health System, Experts Warn

Posted on Thursday, April 23rd, 2015 at 8:01 am by lifemediamatters

Seriously ill patients suffering from dementia will test the strength and resilience of the American health care system, experts warn.

It is estimated that every 67 seconds, someone in the U.S. becomes diagnosed with dementia. The population is expected to increase dramatically as millions of baby boomers age.

“This is an important population. In 2000, it was 4.5 million, by 2050, it’s estimated 16 million Americans will have dementia. Median survival from diagnosis is three to six years,” said Dr. Joan Teno, associate director of the Center for Gerontology and Health Care Research at Brown University Medical School, who addressed a crowd at the University of Chicago’s MacLean Center for Clinical Medical Ethics this month.

Dr. Joan M. Teno

Dr. Joan M. Teno

“A lot of what dementia involves is custodial care, it’s a taxing thing, we call it the 36-hour day, because of how much caregivers have to do in caring for this population,” Teno said.

Decline occurs rapidly among patients with severe symptoms, because they are often bed-bound, have difficulty swallowing and eating, and suffer other serious complications, like painful ulcers.

It is also common, Teno said, for patients suffering from severe dementia to transition to multiple  care settings in the last years of life and receive unwanted, often costly, medical interventions.

“I think that this pattern of health care, where we are always moving patients in-and-out of the hospital is potentially creating harm,” Teno said. “It leads to higher rates of getting feeding tubes and higher rates of late referral to hospice.”

Hospice care is designed to comfort dying patients in their last months of life.

Exploring costs of dementia

Comparison of a normal aged brain (left) and the brain of a person with Alzheimer's (right). Differential characteristics are pointed out. Courtesy WikiMedia Commons.

Comparison of a normal aged brain (left) and the brain of a person with Alzheimer’s (right). Differential characteristics are pointed out. Courtesy WikiMedia Commons.

One of the most comprehensive studies on the costs of dementia determined that the debilitating and progressive disease is more expensive than heart disease and cancer, costing society and families around $200 billion a year. The costs of dementia-related care and the number of people with it will more than double by 2040, according to a widely circulated 2013 study published in The New England Journal of Medicine.

Researchers, supported by the RAND Corporation, determined that dementia leads to total annual costs of $41,000 to $56,000 per case in the U.S., totaling up to $215 billion in 2010.

More troubling were calculations that estimate that the aging population will lead to an increase of almost 80 percent in total costs by 2040.

The National Institutes of Health (NIH) defines dementia as the loss of cognitive functioning— thinking, remembering and reasoning— and behavioral abilities to such an extent that it interferes with a person’s daily life and activities. Many conditions and diseases cause dementia, but the most common cause in older adults is Alzheimer’s disease.

Most dementia-related costs stem from long-term institutional and home-based care, not medical care, partly because there is no cure. Nursing home, formal and informal care account for up to 80 percent of the costs.

Study Examining For-Profit Hospices Divides Experts

Posted on Wednesday, August 20th, 2014 at 9:18 am by lifemediamatters

A recent study suggesting some newer for-profit hospice programs have accepted patients too early and discharged others when the costs of caring for them rose is receiving mixed reaction from end of life experts.

Nearly 20 percent of U.S. hospice patients are discharged before death, and not-for-profit and government-run hospices have lower rates of discharge than newer for-profit programs, according to findings published in the Journal of Palliative Medicine.

“When you have a live discharge rate that is as high as 30 percent, you have to wonder whether a hospice program is living up to the vision and morality of the founders of hospice,” lead researcher Dr. Joan Teno told The Washington Post. “One part of the reason is some of the new hospice providers may not have the same values — they may be more concerned with profit margins than compassionate care.”

Loretta Downs

Loretta Downs

Patients in nonprofit programs were less likely to be discharged while alive than those in similar for-profit programs: 15 percent to 22 percent. More mature programs (those 21 years and older) had lower rates of discharge than those in operation for 5 years or less: 14 percent to 27 percent.

“There has been a striking increase in the number of hospice providers with the fastest growth coming from for-profit providers,” the researchers write.

Hospice volunteer Loretta Downs, past president of the Chicago End-of-Life Care Coalition, told Life Matters Media she found the findings alarming.

“Death is truly unpredictable, and older hospices seem to have more experience with predicting it,” Downs said. “I think hospice care should be nonprofit. Because of the nature of the care, this should not be a profit-making business.”

Downs, who has volunteered in both nonprofit and for-profit programs, recommends that terminally ill patients enter local, reputable nonprofits.

“I noticed a higher patient load for the staff and a little more marketing in a for-profit,” she offered. “They had an in-patient unit which had double-bed rooms, which is inappropriate.”

Dr. Timothy McCurry, medical director of Illinois-based Rainbow Hospice and Palliative Care, echoed Downs’ concerns.

“As the study mentions, uncertainties in prognoses means that a certain level of live discharge is both expected and appropriate. That said, there is certainly evidence of some companies, especially for-profits, focusing on a bottom line over appropriate criteria for hospice admissions,” McCurry told LMM.

The study, emphasizing the need for more stringent government regulations to help identify companies abusing the Medicare hospice benefit, is a positive step forward, McCurry said. Rainbow is a registered nonprofit organization.

“While it’s reassuring to see that the study shows Illinois averaging lower than what might be considered abusive levels, it does highlight the opposite issue in our state: that often times patients and families don’t find their way to hospice soon enough,” he said.

Dr, Martha Twaddle

Dr, Martha Twaddle

Hospice care is designed to help comfort the seriously ill near the end of life, and it has become increasingly popular in recent years – reaching nearly $14 billion in payments during 2011. The Medicare hospice benefit, established in 1982 to help patients pay for care, is usually provided only to those with a life expectancy of six months or less. All Medicare hospice discharges between January and December 2010 were analyzed.

Dr. Martha Twaddle, senior vice president for Medical Excellence and Innovation at Illinois-based Journeycare, is skeptical of some of the claims gleaned from the study.

“I don’t want to polarize the bigger issue around what a live discharge represents. With older for-profits and nonprofits there wasn’t that same type of disparity. It’s not nonprofit or for-profit, it’s how they’re being managed,” Twaddle told LMM.

Many hospices in poorer, rural areas report higher discharge rates because of their commitment to patients and their communities, Twaddle said. Connecticut had the lowest rate of live discharge (13 percent), and Mississippi had the highest (41 percent).

“What we found in Mississippi, our poorest state, is that their social services are anemic at best,” she added. “Hospices were using the hospice benefit to get care to people who had no other resource for care. That’s why their live discharges were so high. That doesn’t excuse it, but there is a bigger socioeconomic or societal issue that needs to be addressed. It’s not for lack of values.”

Lisa Hunt, executive director of Allegiant Hospice, a new for-profit program headquartered in Mesa, Arizona, said their mission is to help promote quality of life for the seriously ill.

“As for the nonprofit versus for-profit argument, I believe there are some agencies who seek nonprofit status and do it in an effort to avoid taxes. I feel if we earn money, we should be taxed on it,” Hunt told LMM. “There’s a notion out there that nonprofits don’t make any money and for-profits are big, bad businesses making a buck. Neither is true. All of us must be good stewards of the Medicare monies we receive in order to stay in business to serve patients.”

Hospice Remains Last Resort

Posted on Sunday, February 10th, 2013 at 11:08 am by Life Matters Media

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.

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.


“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.