Tagged End Of Life

Where You Live May Determine How You Die. Oregon Leads The Way.

Americans who want to ensure they have a say in how they die should examine the lessons of Oregon, a new analysis suggests.

Seriously ill people in that state are more likely to have their end-of-life wishes honored — including fewer intensive-care hospitalizations and more home hospice enrollments — than those living in neighboring Washington state or the rest of the country.

In 2013, nearly two-thirds of Oregonians who died did so at home, compared with fewer than 40 percent of people elsewhere in the U.S., according to the report published Wednesday in the New England Journal of Medicine. Previous research had shown that more than 85 percent of Americans say they’d prefer to die at home.

“Obviously, if you’ve spent decades trying to improve your end-of-life care, it’s pretty rewarding to see that something changes,” said Dr. Susan Tolle, director of the Center for Ethics in Health Care at the Oregon Health & Science University in Portland, who co-led the study.

The review analyzed Medicare fee-for-service claims data from 2000, 2005 and 2013, and it compared end-of-life care in Oregon and Washington — a nearby state with similar demographics and attitudes toward end-of-life care — with the rest of the U.S., excluding those two states.

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It found that in 2013, ICU use in the last 30 days of life was about 18 percent in Oregon, compared with 23 percent in Washington and 28.5 percent in the rest of the U.S. Nearly three-quarters of patients in Oregon hospitalized in the last month of life were discharged to home, compared with slightly fewer than two-thirds in Washington state and a little more than half — 54.2 percent — in the rest of the U.S.

More than 40 percent of patients in Oregon were enrolled in home hospice in 2013, compared with about 30 percent in Washington and fewer than 20 percent in the rest of the U.S, the analysis found.

Oregon, which enacted the nation’s first death-with-dignity law and led the way on implementing portable medical orders for treatment at the end of life, may be reaping the results of those and other efforts, said Tolle’s co-author, Dr. Joan Teno, a professor of medicine, gerontology and geriatrics at the University of Washington in Seattle.

“When you look at the patterns, it’s very different than the rest of the United States,” she said. “It’s even different than a borderline state.”

Pat Duty, 64, who ran a Portland floor-covering business with her husband, Jimmy, for years, said Oregon’s palliative care culture helped guide treatment decisions after his 2013 diagnosis of lung cancer and dementia. Jimmy Duty wanted limited medical interventions; he had a do-not-resuscitate order, plus a request to avoid the ICU.

“He was very clear that quality of life was his first choice,” Pat Duty recalled. “We knew we needed to discuss these things while he could make decisions for himself. We wanted to give him the dignity and grace he deserved for his final couple of years.” He died in October 2015 at age 74.

Pat Duty of Portland, Ore., cared for her husband, Jimmy, after a diagnosis of lung cancer and complications that led to his death at age 74 in 2015. The couple discussed end-of-life treatment options and palliative care, part of Oregon’s integrated system that sets it apart from other states. (Photo courtesy of Pat Duty)

Creating such a culture is much harder than it looks, Tolle and Teno argued. Oregon has successfully integrated awareness of end-of-life care at all levels, from state government and emergency care to individual decisions made by patients and their doctors.

“If patients’ goals are not linked to actionable care plans that are supported by local health care systems and state regulations, many patients who wish to remain at home will die intubated for all the reasons the current system fails them,” they wrote.

Across the U.S., there’s been a push to promote ways to indicate end-of-life treatment preferences, including advance directives, which provide guidance for future care, and Physician Orders for Life-Sustaining Treatment, or POLST, portable medical orders authorizing current care. Twenty-two states now have POLST programs and others are working on or considering them, said Tolle, who co-led the creation of POLST in the early 1990s.

But the researchers warned that, while POLST efforts are important, simply filling out the forms is not enough.

“We were highlighting that there’s no simple answer,” Tolle said. “You can’t just do one thing and think that you will change the culture of end-of-life care. It is a whole lot of work.”

Dr. Scott Halpern, a medical ethics and health policy expert at the Perelman School of Medicine at the University of Pennsylvania, has been a chief critic of POLST efforts, contending that there’s little evidence that the medical orders improve quality of life near death.

The new analysis by Tolle and Teno doesn’t fill the gap, he said. But he agreed with the authors’ contention that a focus on single interventions ignores the complexity of end-of-life decisions.

“Good end-of-life care involves physicians eliciting patients’ values, hopes and fears and making treatment decisions that align,” Halpern said.

The new analysis, which was funded by a grant from the Robert Wood Johnson Foundation, underscores that families and patients outside of Oregon must be vigilant to ensure they receive the care they want, Tolle said.

“The level of care you receive near the end of life depends more on the state you live in and the systems they have in place than your actual wishes,” she said.

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

Categories: Cost and Quality, Mental Health, States, Syndicate

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A Playbook For Managing Problems In The Last Chapter Of Your Life

CHICAGO — At least once a day, Dr. Lee Ann Lindquist gets an urgent phone call.

“Mom fell and is in the hospital,” a concerned middle-aged son might report.

“Dad got lost with the car, and we need to stop him from driving,” a distraught middle-aged daughter may explain.

“We don’t know what to do.”

Lindquist, chief of geriatrics at Northwestern University’s Feinberg School of Medicine, wondered if people could become better prepared for such emergencies, and so she designed a research project to find out.

The result is a unique website, www.planyourlifespan.org, which helps older adults plan for predictable problems during what Lindquist calls the “last quarter of life” — roughly, from age 75 on.

“Many people plan for retirement,” the energetic physician explained in her office close to Lake Michigan. “They complete a will, assign powers of attorney, pick out a funeral home, and they think they’re done.”

What doesn’t get addressed is how older adults will continue living at home if health-related concerns compromise their independence.

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“People don’t want to think about the last 10 or 15 years of their life, and how they’re going to manage,” Lindquist said.

This isn’t end-of-life planning; it’s planning for the period before the end, when health problems become more common.

Lindquist and collaborators began their research by convening focus groups of 68 seniors — mostly women with an average age of 74. Nearly $2 million in funding came from the Patient-Centered Outcomes Research Institute, created under the Affordable Care Act.

Investigators wanted to know which events might make it difficult for people to remain at home. Seniors named five: being hospitalized, falling, developing dementia, having a spouse fall ill or die, and not being able to keep up their homes.

Yet most participants hadn’t planned for these kinds of events. Investigators asked why.

Among the reasons seniors offered: I don’t know what to do, I’m uncomfortable asking for help, I’m not at immediate risk of something bad happening, my children will take care of whatever I need, and I’m worried I won’t have enough money, according to a research report published last year.

Developing the website came next. Lindquist and her team decided to focus on three issues the focus groups had raised — hospitalizations, falling and developing dementia — and to include sections on communicating with family members and managing finances.

A group of senior advisers rejected the first version: the typeface was too small; the design, too cluttered; and the content, too complex. They didn’t want to be overwhelmed with information; they wanted the material on the site to be practical and concrete.

The final version “forces people to sit down and think about their future in a very helpful and non-threatening way,” said Phyllis Mitzen, 74, who worked on the project and is president of Skyline Village in downtown Chicago, a community organization with about 100 older adult members.

A website hosted by Northwestern University’s Feinberg School of Medicine helps users plan for the last stage of life. (Screenshot)

An individual going through the material is asked to consider a series of questions after examining explanatory information and watching short videos of seniors illustrating the issues being discussed. For instance, which rehabilitation facility would you like to go to if you need intensive therapy after a hospitalization?

Who will take care of your pets, mow your lawn or shovel the snow from your sidewalk while you’re away? Who can collect your mail, check on bills to be paid and get medications for you when you return home?

If you begin having memory problems, who can help you manage your bills and finances? Are you willing to wear a medical alert bracelet if you start getting lost? Would you be willing to have a friend or relative check on your driving or have a formal driving evaluation?

If you require more assistance, are you open to having someone come in to help at home? Would you prefer to live with somebody — if so, whom? Would you be willing to move into a senior community?

The goal is to jump-start conversations about these issues, Lindquist said, just as seniors are encouraged to have conversations about end-of-life preferences.

Those looking for deep dives into topics highlighted on the site will have to look elsewhere. Resources listed are spare and some of the material presented — for instance, how Medicare might cover various services — is overly simplified, noted Carol Levine, director of the United Hospital Fund’s Families and Health Care Project in New York City.

Her project has prepared a much more detailed, comprehensive set of guides for family caregivers about issues such as home care, doctors’ visits, emergency room care, rehabilitation and what to expect during and after a hospitalization. Those materials are full of useful advice and can flesh out issues raised on the Northwestern website.

Those wanting to know more about falls can consult materials prepared by the U.S. Centers for Disease Control and Prevention and the National Institutes of Health.

For dementia, the Alzheimer’s Association and the NIH are good places to start.

As for next steps, Lindquist contemplates disseminating PlanYourLifespan more widely, translating it into Spanish if funding can be secured and possibly expanding it to include more topics.

The point is to “give seniors a voice,” she said. Now, if an older woman breaks a hip and is rushed to surgery, “loved ones run around and usually make decisions without her input — she’s usually too out of it to really weigh in. That doesn’t have to happen, if only people would consider the reality of growing older and plan ahead.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

Categories: Aging, Navigating Aging, Syndicate

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