The Hospital Is No Place for the Elderly (1st of 3 installments)

https://www.theatlantic.com/magazine/archive/2013/12/the-home-remedy-for-old-age/354680/

Medical treatment for aging, chronically ill patients is costly and often ineffective. Can they get better care at home?

By JONATHAN RAUCH, DECEMBER 2013 ISSUE of HEALTH

It is 1976. Brad Stuart is in his third year of medical school at Stanford, doing his first clinical rotation. He is told to look at an elderly man with advanced lymphoma. The patient is feeble and near death, his bone marrow eviscerated by cancer. The supervising oncologist has ordered a course of chemotherapy using a very toxic investigational drug. Stuart knows enough to feel certain that the treatment will kill the patient, and he does not believe the patient understands this. Like a buck private challenging a colonel, he appeals the decision, but a panel of doctors declines to intervene. Well, Stuart thinks, if it must be done, I will do it myself. He mixes the drug and administers it. The patient says, “That hurts!” A few days later, the man’s bed is empty. What happened? He bled into his brain and died last night. Stuart leaves the room with his fists clenched.

To this day, he believes he killed the patient. “I walked out of that room and said, ‘There has got to be a better way than this,’ ” he told me recently. “I was appalled by how we care for—or, more accurately, fail to care about—people who are near the end of life. We literally treat them to death.”

Here is a puzzling fact: From 1970 until 2009, spending on health care in this country rose by more than 9 percent annually, creating fiscal havoc. But in 2009, 2010, and 2011, health-care spending increased by less than 4 percent a year. What explains the change? The recession surely had something to do with it. But several recent studies have found that the recession is not the whole story. One such study, by the Harvard University economists David Cutler and Nikhil Sahni, estimates that “structural changes” in our health-care system account for more than half of the slowdown.

In a sense, Brad Stuart is one of those changes. He is a leader in a growing movement advocating home-based primary care, which represents a fundamental change in the way we care for people who are chronically very ill. The idea is simple: rather than wait until people get sick and need hospitalization, you build a multidisciplinary team that visits them at home, coordinates health-related services, and tries to nip problems in the bud. For the past 15 years, at Sutter Health, a giant network of hospitals and doctors in Northern California, Stuart has devoted himself to developing home-based care for frail, elderly patients.

For years, many people in medicine have understood that late-life care for the chronically sick is not only expensive but also, much too often, ineffective and inhumane. For years, the system seemed impervious to change. Recently, however, health-care providers have begun to realize that the status quo is what Stuart calls a “burning platform”: a system that is too expensive and inefficient to hold. As a result, new home-based programs are finally reaching the market, such as one launched about five years ago at Sutter, called Advanced Illness Management. “It’s much more feasible now to make a program like this work than it was a few years ago,” Stuart told me. “There are a lot of new payment schemes in the pipeline that are going to make this kind of program much easier to support.”

This is good news. Generalizing from a small sample is always perilous, but if what is happening at Sutter is any indication, a more humane, effective, and affordable health-care system is closer than we think.

The problem that home-based primary care addresses has been well understood for years. Thanks to modern treatment, people commonly live into their 70s and 80s and even 90s, many of them with multiple chronic ailments. A single person might be diagnosed with, say, heart failure, arthritis, edema, obesity, diabetes, hearing or vision loss, dementia, and more. These people aren’t on death’s doorstep, but neither will they recover. Physically (and sometimes cognitively), they are frail. Joanne Lynn, the director of the Altarum Institute’s Center for Elder Care and Advanced Illness, says that this “frailty course,” a gradual and medically complicated downslide, was once exceptional but is now the likely path for half of today’s elders.

Seniors with five or more chronic conditions account for less than a fourth of Medicare’s beneficiaries but more than two-thirds of its spending—and they are the fastest-growing segment of the Medicare population. What to do with this burgeoning population of the frail elderly? Right now, when something goes wrong, the standard response is to call 911 or go to the emergency room. That leads to a revolving door of hospitalizations, each of them alarmingly expensive. More than a quarter of Medicare’s budget is spent on people in their last year of life, and much of that spending is attributable to hospitalization. “The dramatic increase in costs in the last month of life is largely driven by inpatient hospital stays,” Helen Adamopoulos recently reported on MedicareNewsGroup.com. “On average, Medicare spends $20,870 per beneficiary who dies while in the hospital.”

Hospitals are fine for people who need acute treatments like heart surgery. But they are very often a terrible place for the frail elderly. “Hospitals are hugely dangerous and inappropriately used,” says George Taler, a professor of geriatric medicine at Georgetown University and the director of long-term care at MedStar Washington Hospital Center. “They are a great place to be if you have no choice but to risk your life to get better.” For many, the worst place of all is the intensive-care unit, that alien planet where, according to a recent study in the Journal of the American Medical Association, 29 percent of Medicare beneficiaries wind up in their last month of life. “The focus appears to be on providing curative care in the acute hospital,” an accompanying editorial said, “regardless of the likelihood of benefit or preferences of patients.”

Taler can attest to one of the more peculiar elements of this situation, which is that a better model—namely, providing care and support at home—has been known and used for decades. Taler himself pioneered an interdisciplinary house-call model in Baltimore in 1980, and in 1999 he co-founded a home-based primary-care program at Washington Hospital Center that has served almost 3,000 people. In the 1970s, the Veterans Administration (now the Department of Veterans Affairs) began building a home-based primary-care program, which now operates out of nearly every VA medical center and serves more than 31,000 patients a day. This is not newfangled, untested stuff.

Should Patients With Dementia Be Able To Decline Spoon-Feeding?

Republished from: https://www.npr.org/sections/health-shots/2017/11/03/561393940/should-dementia-patients-be-able-to-decline-spoon-feeding

November 3, 2017

By JONEL ALECCIA
FROM Kaiser Health News

People who abhor the thought of being kept alive with feeding tubes or other types of artificial nutrition and hydration have, for years, had a way out: They could officially document their wishes to halt such interventions using advance directives.

Even patients diagnosed with progressive dementia who are able to record crucial end-of-life decisions before the disease robs them of their mental capacity could write advance directives.

But caregivers and courts have rarely honored patients' wishes to refuse food and fluids offered by hand.

Margot Bentley, 85, of British Columbia, died last year. She was a retired nurse who had cared for dementia patients before being diagnosed with Alzheimer's in 1999. In 1991, she wrote a statement stipulating that she wanted no nourishment or liquids if she developed an incurable illness. However, the nursing home where she was a patient continued to spoon-feed her, despite her family's protests. A court ruling upheld the nursing home's action, saying that food is basic care that cannot be withdrawn.

Nora Harris, 64, of Medford, Ore., died on Oct. 11 after an eight-year struggle with early-onset Alzheimer's disease. More than a year earlier, her husband had gone to court to stop caregivers from spoon-feeding Harris, who had an advance directive that called for no artificial nourishment or hydration. A judge declined, siding with officials who said the state was required to feed vulnerable adults.

To try to reverse this trend, a Washington state agency that advocates for medical aid-in-dying has created guidelines for dementia patients who don't want to be spoon-fed at the end of life.

The group End of Life Washington, or EOLWA, which assists people using the state's 2009 Death with Dignity Act, recently posted a guide called Instructions for Oral Feeding and Drinking on its website.

Aimed at people with Alzheimer's disease and other progressive dementias, the document provides a two-page template for patients to instruct caregivers not to provide oral food or fluids under certain circumstances. There's another document explaining the do's and don'ts of using it.

The instructions are ground-breaking for patients who fear losing control not only of their faculties but of their free will to live and die on their terms, says Sally McLaughlin, executive director of EOLWA.

"We get calls from folks with concerns about dementia and concerns about the fact that loved ones with dementia feel like they're being force-fed," McLaughlin says. "Many, many folks understand that as they stop eating, they would like no one else to feed them."

Critics say the new document raises concerns about potential mistreatment of vulnerable patients, arguing that such "instructions" could be used essentially to starve the elderly or incapacitated.

"It really is troubling," says Stephen Drake, research analyst for the disability rights group Not Dead Yet.

He points to other so-called right-to-die efforts, such as the refusal of artificial nutrition and hydration, saying they started out narrowly defined and then became common practice.

"It really is a big game changer in the number of people whose lives can be ended when they're in vulnerable situations," Drake says. "In legal situations, this is a door-opener."

Proponents of the guidelines say they fill a gap in information for people already interested in navigating the uncertain landscape that surrounds assisted feeding at the end of life.

"What we are saying is that there are objective and somewhat subjective conditions in the future where you can say 'I'm giving you instructions now to help you interpret my wishes,' " says Bob Free, a Seattle lawyer who helped draft the document. "We have never really seen a standard form or advance directive to govern this."

The guidelines do not apply to people with dementia who still get hungry and thirsty and want to eat and drink, the authors note.

"If I accept food and drink (comfort feeding) when they're offered to me, I want them," the document states.

But if the person appears indifferent to eating, or shows other signs of not wanting food — turning away, not willingly opening their mouth, spitting food out, coughing or choking — the document says attempts to feed should be stopped.

And the guidelines tell caregivers to respect those actions.

"No matter what my condition appears to be, I do not want to be cajoled, harassed or forced to eat or drink," the document states. It adds that the "reflexive opening" of the mouth should not be interpreted as consent to eating.

"We think this is a fairly objective test, which in real life will be clear," says Free.

The new guidelines aren't binding, legally or ethically, experts say. Nearly two dozen states have laws that address assisted feeding, including many that prohibit withdrawing oral food and fluids from dying people.

"The hard part about advance directives is even though you put your wishes there, it doesn't mean a medical professional will honor it, or that a facility will honor it," says Jonathan Patterson, staff attorney for Compassion and Choices, a group that supports medical aid-in-dying. But having a template should help make those wishes more clear.

Cases like Harris' and Bentley's horrify people who fear the same fate. Nancy Christensen, 60, a Seattle nurse, says she updated her living will herself within days of reading about Harris.

"I thought, 'Wow, I need to be much more specific,' " says Christensen, who appended notes saying she doesn't want assisted feeding if she can no longer feed herself. "I don't think anybody thinks about this until they're too far into it."

Free, 71, says he plans to fill out the new documents himself.

"It's been a personal desire of mine to have a dignified death," he says. "The idea that my sons would have to witness me in a deteriorated state is very frightening and demoralizing."

Whether the decision to voluntarily stop eating and drinking can be authorized in advance by people diagnosed with dementia remains unclear. The question has gained traction in a nation where dementia cases in people 65 and older are projected to reach 7.1 million by 2025.

Paul Menzel, a bioethicist and professor emeritus at Pacific Lutheran University in Tacoma, Wash., says some people want to avoid the most debilitating stages of the disease. "It's not misery they're afraid of," he says. "They just don't want years of withering."

The End Of Life Washington document is a novel tool, but it may not go far enough, says Judith Schwarz, clinical director for End of Life Choices New York, which advocates for medical aid-in-dying. The conditions it lists typically apply to the final stages of dementia, she says. Some patients want the right to refuse food earlier in the disease process in a deliberate effort to hasten death.

Until now, however, there have been few models for articulating those desires.

"It certainly is an improvement over no previous mention of hand-feeding," Schwarz says. "Maybe this is where it must begin."

JoNel Aleccia covers aging and end-of-life care at Kaiser Health News. Reach her on Twitter at @JoNel_Aleccia.

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

KHN's coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and its coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.