‘Elder Orphans’ Need Fallback Plans

With no spouse or adult children to help them, they’re aging without a safety net

Writing for Kaiser Health News (KHN), journalist Judith Graham reports on the problems of older people who have no one to turn to if they need help: no spouse, no children. She also describes the solutions some of them are working out for themselves. Her article was posted on the KHN website on October 4, 2018.

It was a memorable place to have an “aha” moment about aging.

Peter Sperry had taken his 82-year-old father, who’d had a stroke and used a wheelchair, to Disney World. Just after they’d made their way through the Pirates of the Caribbean ride, nature called. Sperry took his father to the bathroom where, with difficulty, he changed the older man’s diaper.

“It came to me then: there isn’t going to be anyone to do this for me when I’m his age, and I needed to plan ahead,” said Sperry, now 61, recalling the experience several years ago.

Sperry never married, has no children and lives alone.

Like other “elder orphans” (older people without a spouse or children on whom they can depend) and “solo agers” (older adults without children, living alone), he’s expecting to move through later life without the safety net of a spouse, a son or a daughter who will step up to provide practical, physical and emotional support over time.

What strikes me is how many of these elder orphans are woefully unprepared for aging.

—Maria Carney, MD

About 22 percent of older adults in the United States fall into this category or are at risk of doing so in the future, according to a 2016 study. 

“This is an often overlooked, poorly understood group that needs more attention from the medical community,” said Dr. Maria Carney, the study’s lead author and chief of the division of geriatrics and palliative medicine at Northwell Health in New York. It’s also an especially vulnerable group, according to a recently released survey of 500 people who belong to the Elder Orphan Facebook Group, with 8,500 members.

Notably, 70 percent of survey respondents said they hadn’t identified a caregiver who would help if they became ill or disabled, while 35 percent said they didn’t have “friends or family to help them cope with life’s challenges.”

“What strikes me is how many of these elder orphans are woefully unprepared for aging,” said Carney, who reviewed the survey at my request.

Financial insecurity and health concerns are common among the survey respondents: a non-random sample consisting mostly of women in their 60s and 70s, most of them divorced or widowed and college educated.

One-quarter of the group said they feared losing their housing; 23 percent reported not having enough money to meet basic needs at least once over the past year; 31 percent said they weren’t secure about their financial future.

In the survey, 40 percent of people admitted to depression; 37 percent, to anxiety. More than half (52 percent) confessed to being lonely.

Carol Marak, 67, who runs the Facebook group, understands members’ insecurities better than ever since suffering an accident several weeks ago. She cut her finger badly on a meat grinder while making chicken salad for dinner guests. Divorced and childless, Marak lives alone in an apartment tower in Dallas. She walked down the hall and asked neighbors—a married couple—to take her to the emergency room.

“I freaked out—and this wasn’t even that big of a deal,” Marak said. “Imagine people like me who break a hip and have a long period of disability and recovery,” she said. “What are they supposed to do?”

After getting to know each other virtually on the Elder Orphan Facebook Group, elder orphans have begun meeting in person in several cities.

Sperry has thought a lot about who could be his caregiver down that road in a circumstance like that. No one fits the bill.

“It’s not like I don’t have family or friends. It’s just that the people who you can count on have to be specific types of family and friends,” he said. “Your sister or brother, they may be willing to help but not able to if they’re old themselves. Your nieces and nephews, they may be able, but they probably are not going to be willing.”

The solution Sperry thinks might work: moving to a continuing care retirement community, with different levels of care, when he begins to become less independent. That’s an expensive proposition—entry fees range from about $100,000 to $400,000 and monthly fees from about $2,000 to $4,000.

Sperry, a longtime government employee, can afford it, but many people aging alone can’t.

Sperry also has a short-term plan: he wants to retire next year and relocate from Woodbridge, VA, to Greenville, SC— a popular retirement haven—in a home with design features to help him age in place. Those plans could be upended, however, if his widowed mother in Pennsylvania requires extra care.

In the meantime, Sperry is resolved to be pragmatic. “Do I look at my situation and say, ‘Gee, there’s not going to be anyone there for me’ and start feeling sorry for myself? Or do I say, ‘Gee, I’d better figure out how I’m going to take care of myself’? I’m not going with pity—I don’t think that would be very pleasant,” he said.

Planning for challenges that can arise with advancing age is essential for people who go it alone, advised Sara Zeff Geber, a retirement coach and author of Essential Retirement Planning for Solo Agers: A Retirement and Aging Roadmap for Single and Childless Adults (2018). A good way to start is to think about things that adult children do for older parents and consider how you’re going to do all of that yourself or with outside assistance, she said.

In her book, Geber lists the responsibilities that adult children frequently take on: they serve as caregivers, help older parents figure out where to live, provide emotional and practical support, assist with financial issues such as managing money and agree to serve as health care or legal decision-makers when a parent becomes incapacitated. Also, older parents often rely on adult children for regular social contact and a sense of connectedness.

In New York, Wendl Kornfeld, 69, began running year-long workshops for small groups of solo agers four years ago. Though married, she and her 80-year-old husband consider themselves future solo agers living together. “We figured out a long time ago one of us was going to survive the other,” she said.

At those gatherings, Kornfeld asked people to jettison denial about aging and imagine the absolute worst things that might happen to them, physically and socially. Then people talked about how they might prepare for those eventualities.

“The whole purpose of these get-togethers was to be fearless, face issues head on and not keep our heads in the sand,” Kornfeld said. “Then we can plan for what might happen, stop worrying and start enjoying the best years of our lives.”

Kornfeld took her program to New York City’s Temple Emanu-El three years ago and is working with several synagogues and churches interested in launching similar initiatives. Meanwhile, elder orphans have begun meeting in person in other cities, including Chicago, Dallas, Portland, OR, San Diego and Seattle, after getting to know each other virtually on the Elder Orphan Facebook Group.

Kornfeld applauds that development. “So many solo agers identify as being introverted or shy or impatient with other people. They have a million reasons why they don’t go out,” she said. “I tell people, this may be hard for you, but you’ve got to leave the house because that’s where the world is.”

KHN’s coverage related to aging and improving care of older adults is supported in part by The John A. Hartford Foundation.

Family Caregivers Are Older Than Ever

People in their 60s and 70s are caring for parents who are 80 and up

Perhaps it was inevitable: with so many people living longer, more and more empty nesters are taking on the care of parents who are frail and ill. Journalist Judith Graham explores what that means for the younger generation in terms of their health, finances and plans for retirement. She wrote her article for Kaiser Health News, and it was posted on KHN’s website on August 23, 2018.

“This won’t go on for very long,” Sharon Hall said to herself when she invited her elderly mother, who’d suffered several small strokes, to live with her.

That was five years ago, just before Hall turned 65 and found herself crossing into older age.

In the intervening years, Hall’s husband was diagnosed with frontotemporal dementia and forced to retire. Neither he nor Hall’s mother, whose memory had deteriorated, could be left alone in the house. Hall had her hands full taking care of both of them, seven days a week.

As life spans lengthen, adult children like Hall in their 60s and 70s are increasingly caring for frail, older parents—something few people plan for.

“When we think of an adult child caring for a parent, what comes to mind is a woman in her late 40s or early 50s,” said Lynn Friss Feinberg, senior strategic policy adviser for AARP’s Public Policy Institute. “But it’s now common for people 20 years older than that to be caring for a parent in their 90s or older.”

A new analysis from the Center for Retirement Research at Boston College is the first to document how often this happens. It found that 10 percent of adults ages 60 to 69 whose parents are alive serve as caregivers, as do 12 percent of adults age 70 and older.

I had plans for my retirement …Instead, I don’t take time off and leave my mother. A big thing I deal with is the loss of my freedom.
–Judy Last

The analysis is based on data from 80,000 interviews (some people were interviewed multiple times) conducted from 1995 to 2010 for the Health and Retirement Study. About 17 percent of adult children care for their parents at some point in their lives, and the likelihood of doing so rises with age, it reports.

That’s because parents who’ve reached their 80s, 90s or higher are more likely to have chronic illnesses and related disabilities and to require assistance, said Alice Zulkarnain, co-author of the study.

Problems Older Caregivers Face

The implications of later-life caregiving are considerable. Turning an elderly parent in bed, helping someone get into a car or waking up at night to provide assistance can be demanding on older bodies, which are more vulnerable and less able to recover from physical strain.

Emotional distress can aggravate this vulnerability. “If older caregivers have health problems themselves and become mentally or emotionally stressed, they’re at a higher risk of dying,” said Richard Schulz, a professor of psychiatry at the University of Pittsburgh, citing a study he published in the Journal of the American Medical Association.

Socially, older caregivers can be even more isolated than younger caregivers. “In your 60s and 70s, you may have recently retired and friends and family members are beginning to get sick or pass away,” said Donna Benton, research associate professor of gerontology and director of the Family Caregiver Support Center at the University of Southern California (USC).

Caregiving at an older age can put hard-earned savings at risk with no possibility of replacing them by re-entering the workforce. Yvonne Kuo, a family care navigator at USC’s caregiver support center, has been helping an 81-year-old woman caring for her 100-year-old mom with vascular dementia in this situation.

“There’s no support from family, and she’s used up her savings getting some paid help. It’s very hard,” Kuo said.

Judy Last, 70, a mother of three adult children and grandmother of six youngsters, lives with her mother, Lillian, 93, in a mobile home park in Boise, ID. Last moved in three years ago, after her mother had a bout of double pneumonia, complicated by a difficult-to-treat bacterial infection that put her in the hospital for eight weeks.

She cared for her parents for years. She didn’t know how to ask for help and no one volunteered it, even when her husband was diagnosed with dementia.

“You don’t know if it’s going to be permanent at the time,” said Last, whose father died of dementia in January 2016 after moving to a memory-care facility. “Mom had asked me several years before if I would be there when she needed help and I told her yes. But I didn’t really understand what I was getting into.”

Feinberg said this isn’t uncommon. “People in their 90s with a disability can live for years with adequate support.”

Last doesn’t find caregiving physically difficult even though she’s had two hip replacements and struggles with arthritis and angina. Her mother has memory problems and chronic obstructive pulmonary disease, relies on oxygen, uses a walker, has lost most of her hearing and has poor eyesight.

But things are hard, nonetheless. “I had plans for my retirement: I imagined volunteering and being able to travel as much as my bank account would allow,” Last said. “Instead, I don’t take time off and leave my mother. A big thing I deal with is the loss of my freedom.”

Hall, who’s turning 70 in September and who lives in Cumming, GA, managed her mother’s and husband’s complex needs for years by establishing a strict routine. Monday and Friday they went to a dementia respite program from 10 a.m. to 3 p.m. On other days, Hall cooked, shopped, did laundry, helped them with personal tasks, made sure they were well occupied, provided companionship and drove them to medical appointments, as necessary.

“I did not expect this kind of life,” said Hall, who has had two knee replacements and a broken femur. “If someone had told me it would be years caring for my mother and your husband is going to get dementia, I would have said, ‘No, just no.’ But you do what you have to do.”

A few weeks after our conversation, Hall’s mother entered hospice following a diagnosis of aspiration pneumonia and life-threatening swallowing difficulties. Hall said she has welcomed the help of hospice nurses and aides, who ask her at each visit, “Is there anything else you need from us that would make it easier for you?”

Where Caregivers Find Support

Though older caregivers get scant attention, resources are available. Over the years, Hall has shared caregiving ups and downs at CareGiving.com—a significant source of information and comfort. Across the country, local chapters of Area Agencies on Aging run caregiver support programs, as do organizations such as the Caregiver Action Network, the Family Caregiver Alliance, the National Alliance for Caregiving and Parenting Our Parents, an outfit focused on adult children who become caregivers. A helpful list of resources is available here.

Sometimes, caring for a parent can be a decades-long endeavor. In Morehead City, NC, Elizabeth “Lark” Fiore, 67, became the primary caregiver for her parents when they moved around the corner from her, in a mobile home park, in 1999.

“My dad took me for a walk one day and asked if I could look after them as they got older and I said yes. I’m the oldest child and the oldest assumes responsibility,” she said.

For years her father—a difficult man, by Fiore’s account—had heart problems; her mother had a nervous breakdown and a slow, extended recovery. “They wanted me to be in their lives and I wanted to do for them—I’m a Christian—but it was killing me. My heart was in the right place but emotionally, I was a wreck,” Fiore said.

After her father’s death from kidney cancer in 2010, her mother became even more needy, and Fiore found herself spending more time responding to calls for assistance—often about suspected medical emergencies. “My mom had a way of acting as if something was horribly wrong and then it turned out it wasn’t,” she explained.

Fiore’s health isn’t good: she says she has chronic fatigue syndrome and thyroid problems, among other issues. But she didn’t know how to ask for help and no one volunteered it, even when her husband, Robert, was diagnosed six years ago with dementia. “I always expected myself to handle everything,” she said.

Finally, the stress became unbearable last year and Fiore’s mother moved to a senior living community close to Fiore’s 62-year-old sister, 400 miles away. Now, Fiore spends more time attending to her husband’s needs and tries to support her sister as best she can.

“At 90, my mom is healthy as a horse, and I’m glad of that but it’s been a long time caring for her,” she said. “I’ve changed a lot as a result of caregiving: I’m more loving, more aware of people who are suffering. I’ve found out that I am willing to go the extra mile. But I have to admit what I feel is tired—just tired.”

KHN’s coverage of these topics is supported by John A. Hartford Foundation and Gordon and Betty Moore Foundation.

At Death’s Door, Shedding Light on How to Live

Ronni Bennett, who blogs about aging, records her thoughts and emotions as she grapples with a terminal illness

In a moving interview, Bennett describes what’s it like to be told you’re dying of cancer. Talking with journalist Judith Graham of Kaiser Health News (KHN), she discusses how knowing that she’s terminally ill has changed her, how she’s coping and why she’s sharing her reactions and the final chapter of her life with the many people who regularly read her blog. This article was developed in part with support from the Silver Century Foundation. KHN posted it on November 8, 2018.

Nothing so alters a person as learning you have a terminal illness.

Ronni Bennett, who writes a popular blog about aging, discovered that recently when she heard that cancer had metastasized to her lungs and her peritoneum (a membrane that lines the cavity of the abdomen).

There is no cure for your condition, Bennett was told by doctors, who estimated she might have six to eight months of good health before symptoms began to appear.

Right then and there, this 77-year-old resolved to start doing things differently—something many people might be inclined to do in a similar situation.

No more extended exercise routines every morning, a try-to-stay-healthy activity that Bennett had forced herself to adopt but disliked intensely.

No more watching her diet, which had allowed her to shed 40 pounds several years ago and keep the weight off, with considerable effort.

No more worrying about whether memory lapses were normal or an early sign of dementia—an irrelevant issue now.

No more pretending that the cliché “we’re all terminal” (since death awaits all of us) is especially insightful. This abstraction has nothing to do with the reality of knowing, in your gut, that your own death is imminent, Bennett realized.

“It colors everything,” she told me in a long and wide-ranging conversation recently. “I’ve always lived tentatively, but I’m not anymore because the worst has happened—I’ve been told I’m going to die.”

No more listening to medical advice from friends and acquaintances, however well-intentioned. Bennett has complete trust in her medical team at Oregon Health & Science University, which has treated her since diagnosing pancreatic cancer last year. She’s done with responding politely to people who think they know better, she said.

And no more worrying, even for a minute, what anyone thinks of her. As Bennett wrote in a recent blog post, “All kinds of things … fall away at just about the exact moment the doctor says, ‘There is no treatment.’”

Four or five times a day, a wave of crushing fear washes through her, Bennett told me. She breathes deeply and lets it pass. And no, psychotherapy isn’t something she wants to consider.

“What has been most helpful and touched me most are the friends who are willing to let me talk about this.”

–Ronni Bennett

Instead, she’ll feel whatever it is she needs to feel—and learn from it. This is how she wants to approach death, Bennett said: alert, aware, lucid. “Dying is the last great adventure we have—the last bit of life—and I want to experience it as it happens,” she said.

Writing is, for Bennett, a necessity, the thing she wants to do more than anything during this last stage of her life. For decades, it’s been her way of understanding the world—and herself.

In a notebook, Bennett has been jotting down thoughts and feelings as they come to her. Some she already has shared in a series of blog posts about her illness. Some she’s saving for the future.

There are questions she hasn’t figured out how to answer yet.

“Can I still watch trashy TV shows?”

“How do I choose what books to read, given that my time is finite?

“What do I think about [rational] suicide?” (Physician-assisted death is an option in Oregon, where Bennett lives.)

Along with her “I’m done with that” list, Bennett has a list of what she wants to embrace.

Ice cream and cheese, her favorite foods.

Walks in the park near her home.

Get-togethers with her public affairs discussion group.

A romp with kittens or puppies licking her and making her laugh.

A sense of normalcy, for as long as possible. “What I want is my life, very close to what it is,” she explained.

Deep conversations with friends. “What has been most helpful and touched me most are the friends who are willing to let me talk about this,” she said.

Dozens of readers have responded with shock, sadness and gratitude for Bennett’s honesty.

On her blog, she has invited readers to “ask any questions at all” and made it clear she welcomes frank communication.

“I’m new to this—this dying thing—and there’s no instruction book. I’m kind of fascinated by what you do with yourself during this period, and questions help me figure out what I think,” she told me.

Recently, a reader asked Bennett if she was angry about her cancer. No, Bennett answered. “Early on, I read about some cancer patients who get hung up on ‘why me?’ My response was ‘why not me?’ Most of my family died of cancer, and 40 percent of all Americans will have some form of cancer during their lives.”

Dozens of readers have responded with shock, sadness and gratitude for Bennett’s honesty about subjects that usually aren’t discussed in public.

“Because she’s writing about her own experiences in detail and telling people how she feels, people are opening up and relaying their experiences—things that maybe they’ve never said to anyone before,” Millie Garfield, 93, a devoted reader and friend of Bennett’s, told me in a phone conversation.

Garfield’s parents never talked about illness and death the way Bennett is doing. “I didn’t have this close communication with them, and they never opened up to me about all the things Ronni is talking about,” she said.

For the last year, Bennett and her former husband, Alex Bennett, have broadcast video conversations every few weeks over YouTube. (He lives across the country in New York City.) “What you’ve written will be valuable as a document of somebody’s life and how to leave it,” he told her recently as they talked about her condition with poignancy and laughter.

Other people may have very different perspectives as they take stock of their lives upon learning they have a terminal illness. Some may not want to share their innermost thoughts and feelings; others may do so willingly or if they feel other people really want to listen.

During the past 15 years, Bennett chose to live her life out loud through her blog. For the moment, she’s as committed as ever to doing that.

“There’s very little about dying from the point of view of someone who’s living that experience,” she said. “This is one of the very big deals of aging and, absolutely, I’ll keep writing about this as long as I want to or can.”

KHN’s coverage of these topics is supported by John A. Hartford Foundation, Gordon and Betty Moore Foundation and The Silver Century Foundation.

Everything You Need to Know about the New Medicare Cards

They’re designed to prevent identity theft, but fresh scams keep cropping up

Journalist Judith Graham pulls together what you need to know about the new Medicare cards that are being mailed out now to replace the old ones. She’s a contributing columnist for Kaiser Health News (KHN), which posted her article on March 15, 2018.

In April, the government [started] sending out new Medicare cards, launching a massive, yearlong effort to alter how 59 million people enrolled in the federal health insurance program are identified.

Historically, Medicare ID cards have been stamped with the Social Security numbers of members—currently, about 50 million seniors and 9 million people with serious disabilities. But that’s been problematic: if a wallet or purse were stolen, a thief could use that information, along with an address or birthdate on a driver’s license, to steal someone’s identity.

For years, phone scammers have preyed on older adults by requesting their Medicare numbers, giving various reasons for doing so. People who fall for these ruses have found bank accounts emptied, Social Security payments diverted or bills in their mailboxes for medical services or equipment never received.

The new cards address these concerns by removing each member’s Social Security number and replacing it with a new, randomly generated, 11-digit “Medicare number” (some capital letters are included). This will be used to verify eligibility for services and for billing purposes going forward.

What to Expect and When

Such a major change can involve bumps along the way, so there will be a transition period during which you can use either your new Medicare card or your old card at doctors’ offices and hospitals. Both should work until Dec. 31, 2019.

If you forget your new card at home, your doctor’s staff should be able to look up your new Medicare number at a secure computer site. Or they can use information that’s already on file during the transition period.

“We’ve had a few people contact us and ask, ‘If I don’t have the new card at a doctor’s appointment, does that mean my provider won’t see me?’” said Casey Schwartz, senior counsel for education and federal policy at the Medicare Rights Center. “That shouldn’t be an issue.”

Cards will be sent to people covered by Medicare on a rolling basis over a 12-month period ending in April 2019. Older adults in Alaska, California, Delaware, the District of Columbia, Hawaii, Oregon, Pennsylvania, Virginia and West Virginia [were] the first to receive the mailings, between April and June, along with several US territories—American Samoa, Guam and the Northern Mariana Islands.

The last wave of states will be Kentucky, Louisiana, Michigan, Mississippi, Missouri, Ohio and Tennessee, along with Puerto Rico and the Virgin Islands.

“If your sister who lives in another state gets her card before you, don’t fret,” the Federal Trade Commission explained in a new alert. Since the cards are going out in waves, “your card may arrive at a different time than hers.”

If you think Social Security might not have your current address, call 1-800-772-1213 or check your online Social Security account at https://www.ssa.gov/myaccount/, the FTC advised.

New Cards, New Scams

When you get your new Medicare card, don’t throw your old one in the trash. Instead, put it through a shredder or “spend time cutting it up with a pair of scissors” to make sure the part showing your Social Security number is destroyed, said Amy Nofziger, a fraud expert for AARP.

Those numbers remain sought after by scammers, and AARP and Senior Medicare Patrol groups tell of receiving fraud reports related to Medicare cards since last year.

In one scam, reported by California’s Area 1 Agency on Aging, a caller purporting to represent Medicare or another government agency claims to need your bank account information so Medicare can arrange a direct deposit of funds into your account. The new Medicare cards are used as an excuse for the call.

In another, circulating in Iowa, scammers are threatening to cancel seniors’ health insurance if they don’t give out their current Medicare card numbers. “We’re telling people, don’t ever give someone this number—just hang up,” said Nancy Ketcham, elder rights specialist at the Elderbridge Agency on Aging, which serves 29 counties in northwestern Iowa.

A month ago, Alfonso Hernandez, 65, who lives in Moreno Valley, CA, received a call from a man who told him, in Spanish, that Medicare was going to issue new cards and that he needed to verify some information, including Hernandez’s name, address and Social Security number.

“I said no, normally, I don’t give my Social Security number to anyone,” Hernandez said. At that point, the caller put his “supervisor” on the phone, who said the government needed to make sure it had correct information. Caught off guard, Hernandez recited his Social Security number and, “as soon as I did that, they hung up.”

“Immediately, I’m like, ‘Oh my God, what did I do?’” said Hernandez, who quickly contacted credit agencies to have them put an alert on his account. “I just keep praying that nothing happens.”

Medicare will never phone you or email you to ask for your Medicare number, old or new, but scammers may.

Just last week, California’s Senior Medicare Patrol program received a report of another scam detected in Riverside County: a caller claiming that before a senior can get a new Medicare card, he or she has to pay $5 to $50 for a new “temporary” card, according to Sandy Morales, a case manager with the program.

Nofziger of AARP said a Medicare representative will never contact an older adult by phone or email about the new cards and will certainly “never ask for money or personal information or threaten to cancel your health benefits.” The new Medicare cards are free and you don’t need to do anything to receive one: they’re being sent automatically to everyone enrolled in the program. Don’t give out any information to callers who contact you by phone, she advised.

If you suspect fraud, report it to the FTC, [or] AARP’s fraud help line, 1-877-908-3360, or your local Senior Medicare Patrol program.

If you’re among nearly 18 million seniors and people with serious disabilities who have coverage through a Medicare Advantage plan, keep the card that your plan issued you. Medicare Advantage plans are offered by private insurance companies, which have their own way of identifying members. Similarly, if you have prescription drug coverage through Medicare—another benefit offered through private insurance companies—keep your card for that plan as well.

KHN’s coverage of these topics is supported by John A. Hartford Foundation and The SCAN Foundation.

When the Time Comes, Will Your Living Will Prevail?

It may be open to different interpretations in the ER


It’s all too easy for medical providers to misinterpret living wills and other end-of-life instructions. In a disturbing report, Judith Graham, a contributing columnist for Kaiser Health News (KHN), covers recent studies that have revealed problems. KHN posted her article on June 14, 2018.

“Don’t resuscitate this patient; he has a living will,” the nurse told Monica Williams-Murphy, MD, handing her a document.

Williams-Murphy looked at the sheet bearing the signature of the unconscious, 78-year-old man, who’d been rushed from a nursing home to the emergency room. “Do everything possible,” it read, with a check approving cardiopulmonary resuscitation.

The nurse’s mistake was based on a misguided belief that living wills automatically include “do not resuscitate” (DNR) orders. Working quickly, Williams-Murphy revived the patient, who had a urinary tract infection and recovered after a few days in the hospital.

Unfortunately, misunderstandings involving documents meant to guide end-of-life decision-making are “surprisingly common,” said Williams-Murphy, medical director of advance-care planning and end-of-life education for Huntsville Hospital Health System in Alabama.

But health systems and state regulators don’t systematically track mix-ups of this kind, and they receive little attention amid the push to encourage older adults to document their end-of-life preferences, experts acknowledge. As a result, information about the potential for patient harm is scarce.

A new report out of Pennsylvania, which has the nation’s most robust system for monitoring patient-safety events, treats mix-ups involving end-of-life documents as medical errors—a novel approach. It found that in 2016, Pennsylvania health care facilities reported nearly 100 events relating to patients’ “code status”—their wish to be resuscitated or not, should their hearts stop beating and they stop breathing. In 29 cases, patients were resuscitated against their wishes. In two cases, patients weren’t resuscitated despite making it clear they wanted this to happen.

Medical providers get little or no training in how to respond to living wills, POLST forms and do-not-resuscitate orders.

The rest of the cases were “near misses”—problems caught before they had a chance to cause permanent harm.

Most likely, this is an undercount, said Regina Hoffman, executive director of the Pennsylvania Patient Safety Authority, adding that she was unaware of similar data from any other state.

Asked to describe a near miss, Hoffman, co-author of the report, said, “Perhaps I’m a patient who’s come to the hospital for elective surgery and I have a DNR (do not resuscitate) order in my [medical] chart. After surgery, I develop a serious infection and a resident [physician] finds my DNR order. He assumes this means I’ve declined all kinds of treatment, until a colleague explains that this isn’t the case.”

The problem, Hoffman explained, is that doctors and nurses receive little, if any, training in understanding and interpreting living wills, DNR orders and Physician Orders for Life-Sustaining Treatment (POLST) forms, either on the job or in medical or nursing school.

Communication breakdowns and a pressure-cooker environment in emergency departments, where life-or-death decisions often have to be made within minutes, also contribute to misunderstandings, other experts said.

Research by Dr. Ferdinando Mirarchi, medical director of the department of emergency medicine at the University of Pittsburgh Medical Center Hamot in Erie, PA, suggests that the potential for confusion surrounding end-of-life documents is widespread. In various studies, he has asked medical providers how they would respond to hypothetical situations involving patients with critical and terminal illnesses.

In one study, for instance, he described a 46-year-old woman brought to the ER with a heart attack [who] suddenly goes into cardiac arrest. Although she’s otherwise healthy, she has a living will refusing all potentially lifesaving medical interventions. What would you do? he asked more than 700 physicians in an internet survey.

Only 43 percent of those doctors said they would intervene to save her life—a troubling figure, Mirarchi said. Since this patient didn’t have a terminal condition, her living will didn’t apply to the situation at hand, and every physician should have been willing to offer aggressive treatment, he explained.

Despite possible misunderstandings, your final wishes are more likely to be followed with these documents than without them.

In another study, Mirarchi described a 70-year-old man with diabetes and cardiac disease who had a POLST form indicating he didn’t want cardiopulmonary resuscitation but agreeing to a limited set of other medical interventions, including defibrillation (shocking his heart with an electrical current). Yet 75 percent of 223 emergency physicians surveyed said they wouldn’t have pursued defibrillation if the patient had a cardiac arrest.

One issue here: physicians assumed that defibrillation is part of cardiopulmonary resuscitation. That’s a mistake: they’re separate interventions. Another issue: physicians are often unsure what patients really want when one part of a POLST form says “do nothing” (declining CPR) and another part says “do something” (permitting other interventions).

Mirarchi’s work involves hypotheticals, not real-life situations. But it highlights significant practical confusion about end-of-life documents, said Dr. Scott Halpern, director of the Palliative and Advanced Illness Research Center at the University of Pennsylvania’s Perelman School of Medicine.

Attention to these problems is important but shouldn’t be overblown, cautioned Dr. Arthur Derse, director of the center for bioethics and medical humanities at the Medical College of Wisconsin. “Are there errors of misunderstanding or miscommunication? Yes. But you’re more likely to have your wishes followed with one of these documents than without one,” he said.

Make sure you have ongoing discussions about your end-of-life preferences with your physician, surrogate decision-maker, if you have one, and family, especially when your health status changes, Derse advised. Without these conversations, documents can be difficult to interpret.

Here are some basics about end-of-life documents:

Living wills. A living will expresses your preferences for end-of-life care but is not a binding medical order. Instead, medical staff will interpret it based on the situation at hand, with input from your family and your surrogate decision-maker.

Living wills become activated only when a person is terminally ill and unconscious or in a permanent vegetative state. A terminal illness is one from which a person is not expected to recover, even with treatment—for instance, advanced metastatic cancer.

Bouts of illness that can be treated—such as an exacerbation of heart failure—are “critical” not “terminal” illnesses and should not activate a living will. To be activated, one or two physicians have to certify that your living will should go into effect, depending on the state where you live.

DNRs. Do-not-resuscitate orders are binding medical orders, signed by a physician. A DNR order applies specifically to cardiopulmonary resuscitation (CPR) and directs medical personnel not to administer chest compressions, usually accompanied by mouth-to-mouth resuscitation, if someone stops breathing or their heart stops beating.

The section of a living will specifying that you don’t want CPR is a statement of a preference, not a DNR order.

A DNR order applies only to a person who has gone into cardiac arrest. It does not mean that this person has refused other types of medical assistance, such as mechanical ventilation, defibrillation following CPR, intubation (the insertion of a breathing tube down a patient’s throat), medical tests or intravenous antibiotics, among other measures.

Even so, DNR orders are often wrongly equated with “do not treat” at all, according to a 2011 review in the Journal of General Internal Medicine.

POLST forms. A POLST form is a set of medical orders for a seriously ill or frail patient who could die within a year, signed by a physician, physician assistant or nurse practitioner.

These forms, which vary by state, are meant to be prepared after a detailed conversation about a patient’s prognosis, goals and values, and the potential benefits and harms of various treatment options.

Problems have emerged with POLSTs’ increased use. Some nursing homes are asking all patients to sign POLST forms, even those admitted for short-term rehabilitation or whose probable life expectancy exceeds a year, according to a recent article authored by Charlie Sabatino, director of the American Bar Association Commission on Law and Aging. Also, medical providers’ conversations with patients can be cursory, not comprehensive, and forms often aren’t updated when a patient’s medical condition changes, as recommended.

“The POLST form is still relatively new and there’s education that needs to be done,” said Amy Vandenbroucke, executive director of the National POLST Paradigm, an organization that promotes the use of POLST forms across the US. In a policy statement issued last year and updated in April 2018, it stated that completion of POLST forms should always be voluntary, made with a patient’s or surrogate decision-maker’s knowledge and consent and offered only to people whose physician would not be surprised if they die within a year.

KHN’s coverage of these topics is supported by the John A. Hartford Foundation, the Gordon and Betty Moore Foundation and the SCAN Foundation.