On June 15, World Elder Abuse Awareness Day, we take time to acknowledge that an estimated 2.1 million older Americans fall victim to elder abuse, neglect and financial exploitation each year. At Compassion & Choices we work diligently to protect older adults by upholding their rights at the end of life, sometimes when they are no longer able to speak for themselves. And this year we became proud members of the Elder Justice Coalition in Washington, D.C.

Elder abuse occurs on a regular basis, affecting some of the most vulnerable members of our society. What’s even worse is that for every reported case of elder abuse, neglect and exploitation, experts believe there are five that go unreported. We must put an end to it.

Our work has exposed a form of elder abuse that is rarely discussed. It occurs when an older adult’s expressed wishes at the end of life are ignored, and as a result they are subjected to unwanted and invasive medical treatment. We believe this unwanted treatment absolutely constitutes elder abuse.

For example, when 92-year-old Marjorie Mangiaruca received full cardiopulmonary resuscitation including a tracheotomy in violation of the clear terms of her Do Not Resuscitate Order and consequently endured a long, slow death in the hospital, that was elder abuse. Right now, Compassion & Choices is helping her daughter bring this case to court in Florida.

When 85-year old William Bergman was dying of mesothelioma and moaned in pain with each breath while his daughter pleaded with doctors to prescribe more effective pain medication – and they did not – that was elder abuse. Compassion & Choices won a court judgment to that effect, the first of its kind, in 2001.

Our client Margaret Furlong went to the hospital at age 82 armed with her advance directive, which explained her personal wishes for treatment. She presented the document to the admitting doctors and relied on it to prevent invasive rescue procedures if she collapsed. Sadly, when she had a cardiac arrest, medical staff began a series of unwanted procedures to restart her heart and lungs, and she later awoke in the intensive care unit. When she pulled on the tubes, they tied her hands. When she squeezed her son’s hand and tried to tell him she wanted the machines turned off, they ignored her pleas. After ten days tethered to machines, Margaret’s condition continued to decline, and doctors finally agreed to disconnect life support. No one should have to endure this type of abuse in their final days.

For World Elder Abuse Day 2013, the United Nations’ Secretary General, Ban Ki-moon’s message states, “We owe it to older persons and societies at large to fight ageism in all its forms, and enhance the dignity and human rights of older persons everywhere.” Compassion & Choices couldn’t agree more.

The time is now to end elder abuse, neglect and exploitation. As a nation we must dedicate the same type of attention and resources toward this national tragedy as we do toward eradicating child abuse and domestic violence. Older Americans deserve to live their golden years free of abuse, and according to their rights and end-of-life wishes

I wrote last week about the poor choices facing patients, most very old and within six months of death, who need nursing home care after a hospitalization.

Medicare will pay for hospice, the acknowledged gold standard for those at the end of life and their families, and it will also pay for skilled nursing (known in this universe as the “sniff” benefit, for Skilled Nursing Facility or S.N.F.). But only rarely will it cover both at the same time, which creates a financial bind.

Rather than pay hundreds of dollars a day out of pocket for room and board in a nursing home, most families opt for S.N.F. coverage. But they pay a price in other ways: they lose the visits by nurses and aides and social workers, the comfort care, the pain relief and the spiritual support that can make hospice such a godsend, whether patients are at home or in nursing homes.

The study I wrote about, by a team mostly based at the University of California, San Francisco, found ongoing repercussions from this forced decision. People were much more likely to die in hospitals or nursing homes when they used the S.N.F. benefit. Though studies repeatedly find that most people would prefer to die at home, only 11 percent did. But those who did not use S.N.F. were far more likely to be enrolled in hospice – and 40 percent of them died at home.

On the other coast, meanwhile, researchers in Providence, R.I., and Boston exploring some of the same issues have documented still other problems when people nearing death use nursing homes.

This study, published recently by The Journal of the American Geriatrics Society, looked specifically at more than 4,300 patients with advanced dementia who died in nursing homes in 2006 and used the S.N.F. benefitwithin 90 days of their deaths. About a quarter also had hospice care, either at the same time (permitted only when someone has both a terminal condition and another diagnosis, as when a dementia patient also breaks a hip) or before or after they used S.N.F.

Why look at patients with severe dementia? “I tried to focus on the most vulnerable part of the nursing home population,” said the study’s lead author, Susan C. Miller, a health services researcher at Brown University. “They’re almost totally dependent.”

The whole purpose of Medicare’s paying for skilled nursing, recall, is to help patients get stronger and return home, or at least to improve their health. But physical therapy, for instance, may serve little purpose for those who are bed-bound, who are totally incontinent, who can’t feed themselves. “These are people who are on a decline,” Dr. Miller said. “They’re not going to get better.”

Yet they received a lot of medical interventions compared to those in hospice care. Those using S.N.F. were significantly more likely to receive feeding tubes, intravenous fluids, injections and medications — none of which can stop or slow dementia, of course, or are likely to increase quality of life.

“I consider these treatments very aggressive for this group of patients,” Dr. Miller said. Hospice care, on the other hand, lowered the odds of dying in a hospital.

“There needs to be some kind of combined benefit, hospice or palliative care while people are receiving skilled nursing,” Dr. Miller concluded. Otherwise, “there are incentives to give them care they really shouldn’t be receiving.”

People in palliative care and hospice have complained about this restriction for years, and they may want to keep complaining. The Affordable Care Act calls for a demonstration project of “concurrent care,” a three-year experiment allowing up to 15 hospice programs around the country to enroll patients who can also continue to receive all the other services that Medicare covers, including skilled nursing.

Afterwards, an independent evaluation is supposed to determine whether people who are old and ill and close to death can benefit from having hospice and other services together and whether that may even save Medicare dollars.

But the statute doesn’t set a target date, so who knows when or whether this experiment will happen? Too bad, because a lot of patients and families would like to know the answer.

A small plastic tube is all that stands between survival and starvation.

The benefits of a feeding tube — helping elders who have forgotten how to eat — seem so obvious that it is used on one-third of demented nursing home residents, contributing to a growing device market worth $1.64 billion annually.

Except it does little to help. And it can hurt.

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.

The tale of the feeding tube, known as percutaneous endoscopic gastrostomy (PEG), is the latest installment of “Cost of Dying,” a series exploring how our technological ability to stave off death creates dilemmas unimaginable decades ago, when we died younger and more quickly.

Food is how we comfort those we love; when all other forms of communication have vanished, feeding remains a final act of devotion. So the easy availability of feeding tubes forces a wrenching choice upon families: Do we say yes, condemning a loved one to dependency on a small plastic tube in their stomach? Or do we say no, consenting to their death?

Tubes are useful as a nutritional tool for patients struggling with a critical illness, such as Lou Gehrig’s disease, or recovering from stroke, cancer or anorexia.

But if no turnaround is in sight — particularly in elders with progressive neurological illness — they can be a dreadful mistake, medical researchers now say.

For families praying for a reversal, or just the gift of a few more days, the decision to insert a tube into the stomach can initially feel like the right choice. The device helped sustain Fran Cole’s beloved mother when Parkinson’s disease took away her ability to swallow.

“I think my mother was enjoying life at the time that her tube was put in,” said Cole, of San Jose. “She smiled and enjoyed our presence. She was not in pain. She just had extreme difficulty with word retrieval, and a very poor short-term memory.”

But four years later, the blessing became a curse. Her mother had declined severely, even though her feeding tube kept her going.

“She was trapped, unable to make the choice to die,” Cole recalled.

The device joins a burgeoning array of sophisticated technologies that, once invented, are hard to resist. Heart valve replacements for frail octogenarians? Dialysis to help aged kidneys? Anti-cancer drugs costing tens of thousands of dollars that extend life for mere months with deeply sickening side effects?

The cost of such end-of-life interventions, coupled with a tidal wave of elderly baby boomers, could result in an unsustainable economic burden that might bankrupt Medicare and weaken the American economy, some experts say. Medicare costs are already expected to reach $830 billion a year by 2017. About one-quarter — or $208 billion — will be spent on people in the final year of their lives.

There’s a personal price, as well, for both the patients and their families.

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

In a remarkable 1979 experiment, Drs. Jeffrey Ponsky and Michael Gauderer conceived of creating a small tunnel above a baby’s belly button, leading directly to the stomach. Complicated and risky surgery wasn’t necessary. And tube placement, guided by a viewing tube called an endoscope, was very accurate.

“It is simple, safe and rapid,” reported Ponsky, now chief surgeon and chairman of the Department of Surgery at Case Western Reserve University School of Medicine in Cleveland.

Almost immediately, the medical community embraced the tool, then applied it to other kinds of patients: victims of stroke, trauma, cancer, Parkinson’s disease, neurodegenerative diseases and advanced dementia.

“With this technique, it became easier — you avoided the (operating room), you could do it in the endoscopic suite, and it was much faster. You didn’t have to do deep anesthesia or face surgical complications,” said Dr. Timothy O. Lipman, chief of the GI-Hepatology-Nutrition Section of the Veterans Affairs Medical Center in Washington, D.C.

The surgery was also lucrative: Medicare pays doctors $225 to $1,047 to place the tube and pays hospitals $591 to $3,361.

For nursing homes, it eased the workload of hand feeding.

As the market expanded, so did innovations in device design, materials, pumps and placement techniques. Each improvement boosted PEG popularity.

Initially, no companies were interested in manufacturing the tube, predicting little demand. Ponsky finally persuaded a company, American Endoscopy, to produce it. Now a dozen large corporations, such as Abbott and Nestle, dominate the market.

Some manufacturers lease the feeding apparatus at low cost to hospitals and nursing homes in exchange for a commitment to use only the manufacturers’ food and supplies.

Major marketing budgets boost business. “PEG Kits are even more convenient to use than before,” boasts manufacturer Kimberly-Clark.

For people who can still make their own decisions, feeding tubes buy precious time.

Writer and cancer patient Christopher Hitchens kept writing at his legendary pace, typing past midnight on a laptop on his bedside table to finish articles for Vanity Fair and other major publications. Prize-winning film critic Roger Ebert, a cancer patient who attends major film festivals around the world, has blogged about his tube.

“My body may be ready for the Texas Chainsaw Museum,” Ebert wrote, “but I’m here, and it’s a beautiful day.”

The surge in use is mostly in the over-65 group. Within seven years of the tube’s introduction, annual insertion rates in Medicare patients doubled, from 61,000 to 123,000 by 1995.

A 2011 forecast saw the aging population generating 5.9 percent annual revenue growth in the feeding tube industry through 2018. The global feeding device market was estimated at $1.6 billion in 2011 — and will reach $2.4 billion in 2018, according to a report by analysts at Transparency Market Research.

“I never even thought about dementia,” 40 years ago, inventor Ponsky said recently.

“It was just a simple way to make a procedure — that was already done — much easier to do.”

The logic behind the use of feeding tubes seems inescapable. Our loved ones fed us; we feed them. We imagine our own hunger pangs or conjure up images of famine. We honor our elders; at their bedside, we may be reminded of the Biblical plea in Psalms: “Do not cast me off in old age. When my strength fails, do not forsake me.”

Tube feeding constitutes ordinary care at Catholic hospitals. “People with end stage dementia still possess human dignity. And that dignity must be respected,” said Gerald Coleman, vice president of corporate ethics at Catholic Daughters of Charity Health System, which manages San Jose’s O’Conner Hospital and Gilroy’s St. Louise Hospital and others.

The Orthodox Jewish viewpoint also asserts that food and fluids must be offered to all patients, regardless of the statistical chance of recovering, according to Rabbi Dr. Yizhak Kupfer of Brooklyn’s National Institute of Judaism and Medicine.

Indeed, few of us are ready to say goodbye. And we’re not sure our elders are, either.

Doctors recommended a tube for Cole’s mother, and the family agreed. “Our choice was to put in the tube and allow her to continue living — or … give no food or hydration while she died,” Cole recalled. When they asked her mother if she wanted the tube, “while not giving a resounding yes, she did not say, ‘No.’ ”

But the disease progressed, and her mother became unresponsive. Pillows and a seat belt held her up in her wheelchair, but her head drooped.

The family withdrew the tube after a “no artificial nutrition” clause was found in the will that her mother had signed years earlier. Although Cole strongly believes they did the right thing, regrets remain.

Siblings were deeply divided; a brother insisted that withdrawing food was, in effect, murder.

“I am still haunted by having had a hand in her death,” Cole said. “I sat by her bedside for 13 days while she starved to death wondering ‘What are you thinking, Mother? Are you happy that you will finally be freed from this horrible entrapment in a miserable and meaningless life?’ Or are you wondering, ‘Why is my daughter doing this to me?’ ”

Paul Barrett of Moraga, a retired pilot, sees no benefit to artificially prolonging his ailing wife’s life, a view she shared in her advance health care directive.

Diana, a 65-year-old former flight attendant who loved to make lasagna and caprese salad, suffers from Alzheimer’s disease. Paul often helps cut her food, steady her soup spoon, and guide a drink to her lips. The day will come, he knows, when it is time to move to pureed foods and hand-feeding.

But no tube.

“This is a fatal disease — and to try to keep her alive, knowing I can’t save her anyway, doesn’t seem to make sense to me,” he said. “It is emotionally tough, of course. But the logical part of me knows it is absurd to try to keep her alive artificially.

“If the day comes when she can no longer swallow, just keep her comfortable in hospice,” he said. “Let her go.”

Attitudes are changing, said Bill Fisher, head of the Northern California chapter of the Alzheimer’s Association.

When Fisher’s grandmother had Alzheimer’s four decades ago, it was determined she would be fed artificially. “It was an automatic thing, nobody asked, nobody talked about it,” he said.

But when his mother-in-law sickened with the same disease, the family made it very clear that “we absolutely did not want a feeding tube,” Fisher said.

“It is still a difficult issue — no question about it — but some families are wrestling with it ahead of time,” he said.

For two decades, no one checked to see what feeding tubes were actually accomplishing.

Short-term results looked rosy. But little attention was paid to long-term consequences for the frail and demented elderly.

“Medical research is dominated by research on the new: new tests, new treatments, new disorders and new fads. But above all, it’s about new markets,” according to Dr. H. Gilbert Welch, professor of medicine at the Dartmouth Institute for Health Policy and Clinical Practice.

The number of nursing home residents with advanced dementia who get feeding tubes each year varies widely across states, according to the only national study of the practice. It found that the 2001 average rate nationwide was 54 per 1,000 — but as low as 2.1 in Utah and as high as 114 in Louisiana. Racial minorities were much more likely to get tubes than whites. More than two-thirds of all insertions were done when a patient was hospitalized for pneumonia or some other illness.

When isolated problems with feeding tubes began to worry experts, they took a closer look and made a disturbing discovery.

In a seminal 1999 study, Dr. Thomas Finucane of Johns Hopkins Medical Center found no evidence that feeding tubes prolonged survival of aged, demented nursing home patients. Nor do they prevent pneumonia, improve function or comfort dementia patients.

Subsequent studies were also startling. Using tubes often requires restraints — such as sedatives, or tying patients’ wrists to their beds. And there are complications: Each insertion is associated with 3.5 emergency room visits per year, costing Medicare an average of $1,000 per visit.

“Intuitively, it seems to make sense: If you don’t eat, you will die,” said Lipman, the Washington, D.C. Veterans Affairs Medical Center physician. “But if we look at the total picture — complications, without improving the quality of life — what have we accomplished?”

A growing body of research suggests wide overuse of tubes in other patients, such as those with some types of stroke, muscular dystrophy, and some cancers.

Tube use also robs patients of human contact — although hand-held “comfort feeding” is slow and messy, it is also intensely intimate. And it may provide all the calories a frail and dwindling elder needs.

Almost all dying patients, even those who are hand-fed, lose their interest in eating and drinking; this is the body’s signal that death is coming, according to palliative care providers. If food is not artificially provided, patients typically die within two weeks, although exceptions are common. Lack of food triggers a biochemical process called ketosis, which actually blunts hunger and eases discomfort due to the release of natural morphine-like agents.

“We are putting in feeding tubes much too quickly,” concluded Dr. Joan M. Teno of the Center for Gerontology and Health Care Research at Brown University Medical School.

“We’re thinking: It’s nourishment,” said Teno, author of some of the field’s most influential studies. “We don’t think of the myriad reasons they cause problems.”

Yet thousands of patients still spend their final days — and even months or years — attached to tubes.

Why?

Families may not understand the implications of tube feeding, due to poor communication with doctors. Many patients don’t prepare advance directives, which can specify “no artificial hydration and nutrition,” so their distressed families urge doctors to “do everything.”

“We have a tough time letting go — rightly so,” Teno said. “Think about what we’re asking people to do.”

Doctors may not want to let go, either. They’re trained to heal. They’re paid more to rescue than to talk about death. And those conversations are awful.

“It’s easier to recommend a nonbeneficial procedure than to confront difficult end-of-life issues,” geriatrician Dr. William Plonk Jr. of the University of Virginia Health System wrote in a 2005 journal article.

Financial incentives encourage hospitals to overuse the procedure, experts say. Because it is costly to keep patients, hospitals seek to quickly stabilize and return patients to a nursing home. That means ensuring they are getting nutrition — and the most efficient way often is through a feeding tube.

Nursing homes have their own reasons to favor tubes. Many lack the staffing for time-consuming hand feeding. And another incentive promotes tube use: Its costs are considered “skilled nursing” care that Medicare generously reimburses. Moreover, nursing homes risk stiff penalties if regulators believe their residents are malnourished.

All these powerful reasons — emotional, ethical, practical, financial and regulatory — make it easy to lose sight of what’s best for the patient, experts say.

“Not eating at the end of life is a normal part of the dying process,” said Foote, the medical director at Windsor Gardens in Salinas. “We have forgotten that.”

Two weeks ago, Dr. Arif Nazir got a call from a colleague about a 79-year-old woman at an Indianapolis hospital. The cardiologist on the phone explained there was nothing more that could be done for this patient, who had advanced heart failure, chronic lung disease and diabetes.

After a brief conversation, Dr. Nazir agreed to admit her to a nursing home and try to keep her out of the hospital, respecting her recently signed “do not resuscitate” order, or D.N.R.

It was a promise that was broken within several hours, much to Dr. Nazir’s dismay. The reasons highlight troublesome problems with long-term care that frequently frustrate caregivers and that are receiving fresh attention from medical providers and Medicare.

At the nursing home, staff members noticed several hours after her transfer that the patient’s oxygen levels were very low. This was to be expected given her condition, Dr. Nazir said, but no one picked up the phone to ask his advice.

Instead, a doctor on call who wasn’t familiar with the patient or her recent medical history gave the order to send her back to the hospital — just where the patient, her son and her physician didn’t want her to go.

This might not have happened if the woman’s D.N.R. order had traveled with her when she was discharged from the hospital. But that didn’t happen, and staff members in the nursing home had no way of knowing what this patient’s wishes were (she was groggy and unable to say at that time) or whom they should contact to find out.

This is a distressingly common problem. D.N.R.’s signed in hospitals aren’t regularly transferred to skilled nursing facilities. So when crises arise (and this occurs often in frail, sick older patients) no one knows what to do, and shipping the patient off to the hospital becomes the default option.

That may seem like a sensible choice — after all, hospitals are where really sick people go to get better — but for nursing home patients it can have deleterious consequences.

Dr. Nazir, a geriatrician at Indiana University and a staff physician at several Indianapolis nursing homes, explained why, using the example of another patient in her late 80s with advanced Alzheimer’s disease who becomes excessively agitated and combative at night.

“When she goes to the hospital, she will be seen by a physician who doesn’t know her, usually for only a few minutes,” he said. “Most likely, he’ll end up doing a lot of tests because histories are not readily available for these nursing home patients.”

Because the patient is old, with several other medical conditions, “every test this physician does is going to come out with some kind of abnormality, and she’ll be admitted for further evaluation and observation.”

In the hospital environment, this older woman with cognitive impairment will feel disoriented and most likely afraid. “There will be lots of strangers, lots of noise, perhaps little sleep, and she will be at very high risk of becoming even more agitated,” Dr. Nazir said. “At that point, she’s going to get aggressive medications.”

In short order, this patient may become sedated, delirious and confined to bed. Upon discharge, an older person like this “will come back to us very debilitated, really having lost a lot of quality of life” and often unable to regain it, Dr. Nazir said.

Few caregivers realize this is a likely chain of events. Rarely do nursing home doctors or nurses sit down and explain the risks of hospitalizing a frail older person who is profoundly physically and mentally compromised.

This is the set of problems that a new pilot program of the Centers for Medicare and Medicaid Services hopes to address. The program is to be introduced in Alabama, Indiana, Missouri, Nebraska, Nevada, New York and Pennsylvania later this year, and I’ll describe how it works in a future post.

What about you? Have you had experiences along the lines of those described by Dr. Nazir? Have you witnessed this all-too-frequent revolving door between nursing home and hospital and seen its adverse effects?

A new study says almost one third of Medicare’s beneficiaries use the program to pay for end-of-life care at nursing homes, which may not be equipped to treat or prevent pain and suffering.

Those palliative care services are usually associated with hospice care, while nursing homes are typically for rehabilitation and long-term care.

The study’s researchers, who published their findings in the Archives of Internal Medicine on Monday, say the findings suggest that palliative or hospice care should be incorporated into Medicare’s nursing home benefits.

“Often our focus on these patients is trying to keep them functional or independent for as long as we can. What we may be overlooking is that they are on an end-of-life trajectory,” said Dr. Katherine Aragon, the study’s lead author from Lawrence General Hospital in Massachusetts.

Medicare, the federal health insurance program for the elderly and disabled, pays for 100 days of skilled nursing facility care after a person is hospitalized for at least three days.

Under those benefits, the program pays 100 percent of the bill for the first 20 days of care, and all but a $144.50 per day copayment after that.

That may be less expensive for patients and their families than using Medicare’s hospice benefits, which does not pay for room and board. Patients need to pay for that out of pocket, through additional insurance or Medicaid – for which many may not qualify.

For the study, Aragon and her colleagues at the University of California, San Francisco, gathered information from a database to see how many people – recently released from a hospital – used Medicare’s nursing home benefits during the last six months of their lives.

After looking at information on more than 5,100 people between 1994 and 2007, the researchers found that about 31 percent had used the nursing home benefits in those last six months, and about nine percent died while still using those benefits.

The study, however, cannot say what type of care those patients received before their deaths. It also doesn’t say how much those stays cost the Medicare program.

Aragon told Reuters Health that some nursing homes are offering palliative and hospice care, but she does not see the current situation changing without the homes being reimbursed for the care.

Dr. Peter Boling, from Virginia Commonwealth University in Richmond, told Reuters Health that it would most likely require legislative or regulatory action.

“It ends up being all about the money in the end, which is always the case,” said Boling, who wrote a commentary accompanying the new study.