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COVID-19 Sets Off a Pandemic of Despair for Older People

The longer their isolation goes on, the harder it is for many
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As communities cautiously open up after the lockdown, older adults are being urged to not leave home yet because they’re more vulnerable than those who are younger. Journalist Judith Graham explores some of the consequences in this article that was posted on the KHN website on May 28, 2020. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues. Graham’s story also ran on CNN.  

As states relax coronavirus restrictions, older adults are advised, in most cases, to keep sheltering in place. But for some, the burden of isolation and uncertainty is becoming hard to bear.

This “stay at home awhile longer” advice recognizes that older adults are more likely to become critically ill and die if infected with the virus. At highest risk are seniors with underlying medical conditions such as heart, lung or autoimmune diseases.

Yet after two months at home, many want to go out into the world again. It is discouraging for them to see people of other ages resume activities. They feel excluded. Still, they want to be safe.

“It’s been really lonely,” said Kathleen Koenen, 77, who moved to Atlanta in July after selling her house in South Carolina. She’s living in a 16th-floor apartment while waiting to move into a senior housing community, which has had cases of COVID-19.

“I had thought that would be a new community for me, but everyone there is isolated,” Koenen said. “Wherever we go, we’re isolated in this situation. And the longer it goes on, the harder it becomes.”

(Georgia residents age 65 and older [were] required to shelter in place through June 12, along with other vulnerable populations.)

Her daughter, Karestan Koenen, is a professor of psychiatric epidemiology at Harvard University’s T.H. Chan School of Public Health. During a Facebook Live event this month, she said her mother had felt in March and April that “everyone was in [this crisis] together.” But now, that sense of communality has disappeared.

Making it worse, some seniors fear that their lives may be seen as expendable in the rush to reopen the country.

“[Older adults] are wondering if their lives are going to end shortly for reasons out of their control,” said Linda Fried, MD, dean of the Mailman School of Public Health at Columbia University, in a university publication. “They’re wondering if they’ll be able to get the care they need. And most profoundly, they’re wondering if they are going to be cast out of society. If their lives have value.”

If anything, I’ve seen a very strong will to live and acceptance of whatever one’s fate might be.

— Marc Agronin, MD 

On the positive side, resilience is common in this age group. Virtually all older adults have known adversity and loss; many have a “this too shall pass” attitude. And research confirms that they tend to be adept at regulating their reactions to stressful life events—a useful skill in this pandemic.

“If anything, I’ve seen a very strong will to live and acceptance of whatever one’s fate might be,” said Marc Agronin, MD, a geriatric psychiatrist and vice president of behavioral health at Miami Jewish Health, a 20-acre campus with independent living, assisted living, nursing home care and other services.

Several times a week, psychologists, nurses and social workers are calling residents on the campus, doing brief, mental health checks and referring anyone who needs help for follow-up attention. There’s “a lot of loneliness,” Agronin said, but many seniors are “already habituated to being alone or are doing OK with contact [only] from staff.”

Still, “if this goes on much longer,” he said, “I think we’ll start to see less engagement, more withdrawal, more isolation—a greater toll of disconnection.”

Erin Cassidy-Eagle, PhD, a clinical associate professor of psychiatry at Stanford University, shares that concern.

From mid-March to mid-April, all her conversations with older patients revolved around several questions: “How do we keep from getting COVID-19? How am I going to get my needs met? What’s going to happen to me?”

But more recently, Cassidy-Eagle said, “older adults have realized the course of being isolated is going to be much longer for them than for everyone else. And sadness, loneliness and some hopelessness have set in.”

She tells of a woman in her 70s who moved into independent living in a continuing care community because she wanted to build a strong social network. Since March, activities and group dining have been canceled. The community’s director recently announced that restrictions would remain until 2021.

“This woman had a tendency to be depressed, but she was doing OK,” Cassidy-Eagle said. “Now she’s incredibly depressed and she feels trapped.”

A 93-year-old plunged into despair after her assisted living facility went on lockdown in mid-March. Medications have not helped.

Especially vulnerable during this pandemic are older adults who have suffered previous trauma. Gary Kennedy, MD, director of the division of geriatric psychiatry at Montefiore Medical Center in New York City, has seen this happen to several patients, including a Holocaust survivor in her 90s.

This woman lives with her son, who got COVID-19. Then she did as well. “It’s like going back to the terror of the [concentration] camp,” Kennedy said, “an agonizing emotional flashback.”

Jennifer Olszewski, EdD, an expert in gerontology at Drexel University, works in three nursing homes in the Philadelphia area. As is true across most of the country, no visitors are allowed, and residents are mostly confined to their rooms.

“I’m seeing a lot of patients with pronounced situational depression,” she said, “decreased appetite, decreased energy, a lack of motivation and overall feelings of sadness.”

“If this goes on for months longer, I think we’ll see more people with functional decline, mental health decline and failure to thrive,” Olszewski said.

Some are simply giving up. Anne Sansevero, a geriatric care manager in New York City, has a 93-year-old client who plunged into despair after her assisted living facility went on lockdown in mid-March. Antidepressant and anti-anxiety medications have not helped.

“She’s telling her family and her health aides ‘life’s not worth living. Please help me end it,’” Sansevero said. “And she’s stopped eating and getting out of bed.”

The woman’s attentive adult children are doing all they can to comfort their mother at a distance and are feeling acute anguish.

What can be done to ease this sort of psychic pain? Kennedy of Montefiore has several suggestions.

Older adults may not own up to feeling depressed, but some will describe physical symptoms, such as difficulty sleeping or concentrating.

“Don’t try to counter the person’s perception and offer false reassurance. Instead, say, yes, this is bad, no doubt about it. It’s understandable to be angry, to be sad. Then provide a sense of companionship. Tell the person, ‘I can’t change this situation but I can be with you. I’ll call tomorrow or in a few days and check in with you again.’”

“Try to explore what made life worth living before the person started feeling this way,” he said. “Remind them of ways they’ve coped with adversity in the past.”

If someone is religiously inclined, encourage them to reach out to a pastor or a rabbi. “Tell them, I’d like to pray together or read this Bible passage and discuss it,” Kennedy said. “Comforting person-to-person interaction is a very effective form of support.”

Do not count on older adults to own up to feeling depressed. “Some people will acknowledge that, yes, they’ve been feeling sad, but others may describe physical symptoms—fatigue, difficulty sleeping, difficulty concentrating,” said Julie Lutz, PhD, a postdoctoral fellow at the University of Rochester.

If someone has expressed frequent concerns about being a burden to other people or has become notably withdrawn, that’s a worrisome sign, Lutz said.

In nursing homes, ask for a referral to a psychologist or social worker, especially for a loved one who’s recovering from a COVID hospitalization.

“Almost everybody that I’m seeing has some kind of adjustment disorder because their whole worlds have been turned upside down,” said Eleanor Feldman Barbera, PhD, an elder care psychologist in New York City. “Talking to a psychologist when they first come in can help put people on a good trajectory.”

The National Alliance on Mental Illness has compiled a COVID-19 information and resource guide, available at https://www.nami.org/covid-19-guide. The American Psychological Association has created a webpage devoted to this topic and recently wrote about finding local mental health resources. The Substance Abuse and Mental Health Services Administration has a 24-hour hotline, 1-800-662-4357. And the national suicide prevention hotline for those in acute distress is 1-800-273-8255.

 

Parenting Your Aging Parents

What can you do if they refuse the help they obviously need?
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You can see that your parents are having difficulties, perhaps even running risks they shouldn’t, but they’re quite sure they can manage. What can—and should—you do? Writing for Kaiser Health News (KHN), journalist Judith Graham consults some experts for advice on a problem many families confront. Her article was posted on the KHN website on Dec. 19, 2019.

David Solie’s 89-year-old mother, Carol, was unyielding. “No, I will not move,” she told her son every time he suggested that she leave her home and relocate to a senior-living residence.

And it didn’t stop there. Although Carol suffered from coronary artery disease, severe osteoporosis, spinal compression fractures and unsteady balance, she didn’t want assistance. When Solie brought in aides to help after a bad fall and subsequent surgery, his mother fired them in a matter of days.

“In her mind, she considered it a disgrace to have anybody in her home,” Solie said. “This was her domain for over 50 years, a place where she did everything by herself and in her own way.”

Conflicts of this sort often threaten relationships between aging parents and their adult children just when understanding and support are needed the most. Instead of working together to solve problems, families find themselves feuding and riven by feelings of resentment and distress.

Solie got so worked up, he considered going to court and asking for a conservatorship—a legal arrangement that would have given him control over his mother’s affairs. (The situation was complicated because Solie’s brother, who has Down syndrome, lived at the family home.) But Solie’s lawyer advised that this course of action would destroy his relationship with his mother.

Ask your parents how they’d prefer to solve problems and what their priorities are. 

Today, Solie, a health care consultant and writer with a well-regarded blog about aging, sounds the same theme when he consults with adult children caring for parents. Make preserving trust and keeping your relationship intact—not winning arguments—a priority, he suggests. What your parents most need is confidence that you’ll listen to them, take their concerns seriously and stay by their side no matter what happens, he says.

How adult children communicate with parents can go a long way toward easing tensions, Solie says. Instead of telling your parents what to do, ask how they’d prefer to solve problems. Elicit their priorities and recognize their values when making suggestions. Give them choices whenever possible. Be attuned to their unexpressed needs and fears.

When Dr. Lee Lindquist, chief of geriatrics at Northwestern University’s Feinberg School of Medicine, asked 68 older adults in eight focus groups why they resisted help, the answers varied. They said they were afraid of losing their independence, becoming a burden on loved ones, being taken advantage of, and relinquishing control over their lives.

Asked what might make a difference, the older adults said they liked the idea of “interdependence”—acknowledging that people need one another from childhood to older age. And they found it helpful to think that “by accepting help, they were in turn helping the person providing the help,” according to Lindquist’s study, published last year in the Journal of the American Geriatrics Society.

Unfortunately, no amount of patience, compassion or forbearance will work in some conflict-ridden circumstances. But here’s some of what experts have learned:

Be patient. Give your parents time to adjust. At first, Jane Wolf Frances’ 87-year-old mother, Lillian Wolf, wouldn’t consider moving with Jane’s father from New York City to the Los Angeles area, where Frances, her only child, lived.

Although Lillian had Alzheimer’s disease, and Frances had planned to give her one-story house to her parents, “I deferred to my mother’s fear that she was going to be losing something essential,” she said.

During three years of caregiving, Frances had learned to not rush her parents. She knew they had slowed down and needed time to process change.

So Frances waited until her parent’s home health aide called with concerns about their ability to live independently. After discussing the situation with their physician, Frances approached her mother again. A move to assisted living would be a fresh start, allowing the family to spend more time together, she said. After several conversations, her mother finally agreed.

Frances, a psychologist, is the author of a new book, Parenting Our Parents: Transforming the Challenge into a Journey of Love, and founder of www.parentingourparents.org. Stay calm when disagreements arise with your elderly parents and tamp down your emotional reactions, she tells families. Listen carefully to your parents’ concerns and let them know you’re trying to help them accomplish their goals, not impose your agenda.

“It’s often helpful to say to your parents ‘I’m doing this for you; I’d like you to do something for me,’” Frances said. “People who are good parents perk up on that one and will ask, ‘OK, what can I do for you?’ Then you can tell them, ‘You can let me help you more.’”

Let them know you’re on their side. Denise Brown was convinced her parents, Roger and Sally Loeffler, were making a terrible decision. In the previous year, Roger, 84, had been diagnosed with bladder and prostate cancer and undergone extensive surgery. Sally, 81, had suffered three internal bleeds and had one-third of her stomach removed.

Brown didn’t think they could live on their own anymore, and her parents had moved into a retirement community upon her recommendation. But then, at a family meeting, her mother stood up and said, “I’m not dying in this dump. I hate it here.” As Brown and her siblings turned to their father, he said, “I’ll do whatever your mom wants.”

When her parents decided to move to an apartment, Brown was confrontational. “I raised my voice and said, ‘This is not good, this is terrible,’” she said. “They were shocked, but they said ‘It doesn’t matter; this is what we’re going to do.’”

As Brown thought about her reaction, she realized she thought her parents would be safer and have a more “gentle” death in the retirement community. “Then it occurred to me—this wasn’t what my parents wanted. They valued their independence. It’s their decision about how the end of life plays out.”

It doesn’t work to try to communicate when your parents are tired or angry. 

Brown let her parents know she’d respect their wishes but would need to set limits. Her work—Brown is the founder of www.CareGiving.com—had to be a priority, and her parents would need to arrange other assistance if she couldn’t be available. (Brown’s two brothers and sister help out.) And they’d have to be willing to talk openly about how their choices were affecting her.

What doesn’t work: trying to communicate when any one of them is tired or angry. “We never get anywhere,” Brown said. “Everybody gets defensive and shuts down.”

What does work: “Asking them questions like how do you think we should try to solve this problem? It’s interesting to hear their answers, and it makes working together so much easier.”

Stop expecting your parents to be as they used to be. After her father’s death, Loi Eberle was distraught when her mother, Lucille Miller, became involved with a man she and her siblings didn’t like. With his encouragement, Miller invested in real estate and lost a great deal of money.

But nothing Eberle or her siblings said could convince her mother that this relationship was destructive.

Eberle struggled with resentment and anger as her mother’s needs escalated after a heart attack and a diagnosis of myasthenia gravis, a severe neurological disease. “Mom and I had this love/hate relationship all my life, and there was a huge need for healing in this relationship,” she said.

In 2012, Eberle moved Miller, then 89, from her longtime home in Minneapolis to a nursing home in northern Idaho, near where Eberle lives. Gradually, she realized that her mother “had transitioned to being someone else”—someone who was vulnerable and at her life’s end.

“I think for a long time I had this idea that I was going to help Mom come back to who she was, and I spent a lot of time trying to do that,” Eberle said. “I finally had to forgive myself for failure and understand that this is the life process.”

With this shift in perspective, emotional tension dissipated. “When I’d visit, my mother was always so happy to see me,” Eberle said. Miller died in March 2017 at age 94.

Letting go of unrealistic expectations can defuse conflicts. This is the final stage of your journey with your parents. Try to put angst to one side and help make this time meaningful for them and for you. Most of all, your parents want to feel emotionally connected and accepted, even in a diminished state.

 

Where Should You Go to Recover after a Hospitalization? 

It’s a tough decision, often made too quickly with too little help 
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There are big differences in the quality of the care provided by rehab facilities, and poor care can affect your recovery. Judith Graham, a contributing columnist for Kaiser Health News (KHN), investigates the problem here and suggests ways to make better choices. Her article was posted on the KHN website on April 11, 2019. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues. 

Every year, nearly two million people on Medicare—most of them older adults—go to a skilled nursing facility to recover after a hospitalization. But choosing the facility can be daunting, according to an emerging body of research.

Typically, a nurse or a social worker hands out a list of facilities a day or two—sometimes hours—before a patient is due to leave. The list generally lacks such essential information as the services offered or how the facilities perform on various measures of care quality.

Families scramble to make calls and, if they can find the time, visit a few places. Usually they’re not sure what the plan of care is (what will recovery entail? how long will that take?) or what to expect (will nurses and doctors be readily available? how much therapy will there be?).

If asked for a recommendation, hospital staffers typically refuse, citing government regulations that prohibit hospitals from steering patients to particular facilities and that guarantee patients free choice of medical providers. (This is true only for older adults with traditional Medicare; private Medicare Advantage plans can direct members to providers in their networks.)

“The reality is that we leave patients and families without good guidance at a really vulnerable point in their care trajectory,” said Robert Burke, MD, an assistant professor of medicine at the University of Pennsylvania’s Perelman School of Medicine.

When hospitals present patients who need short-term rehab with a list of possible places to go, there are, on average, 34 facilities on the list. 

Amid stress and confusion, older adults and their families frequently make less than optimal choices. According to a 2018 report from the Medicare Payment Advisory Commission (MedPAC), an independent agency that advises Congress on Medicare, nearly 84 percent of Medicare beneficiaries who go to a skilled nursing facility (SNF) after a hospital stay could have selected a higher-rated provider within a 15-mile radius. On average, MedPAC noted, hospitals refer patients needing short-term rehabilitation to 34 facilities. (Fewer options are available in rural areas.)

Where older adults go is important “because the quality of care varies widely among providers,” MedPAC’s report notes, and this affects how fully people recover from surgeries or illnesses, whether they experience complications such as infections or medication mix-ups, and whether they end up going home or to a nursing home for long term care, among other factors.

A recently completed series of reports from the United Hospital Fund in New York City highlights how poorly older adults are served during this decision-making process. In focus groups, families described feeling excluded from decisions about post-hospital care and reported that websites such as Medicare’s Nursing Home Compare, which rates facilities by quality of care and other performance criteria, weren’t recommended, easy to use or especially helpful.

What do older adults and family members need to know before selecting a rehab facility after a hospital stay? Recent academic research, policy reports and interviews with experts elucidate several themes.

The Basics

Who needs post-hospital care in a rehabilitation center? Surprisingly, there are no definitive guidelines for physicians or discharge planners. But older adults who have difficulty walking or taking care of themselves, have complex medical conditions and complicated medication regimens, need close monitoring or don’t have caregiver support are often considered candidates for this kind of care, according to Kathryn Bowles, professor of nursing at the University of Pennsylvania School of Nursing.

Medicare will pay for short-term rehabilitation at SNFs under two conditions: (1) if an older adult has had an inpatient hospital stay of at least three days; and (2) if an older adult needs physical, occupational or speech/language therapy at least five days a week or skilled nursing care seven days a week.

Be sure to check your status, because not all the time you spend in a hospital counts as an inpatient stay; sometimes, patients are classified as being in “observation care,” which doesn’t count toward this three-day requirement.

Traditional Medicare pays the full cost of a semiprivate room and therapy at a skilled nursing facility for up to 20 days. Between 21 and 100 days, patients pay a coinsurance rate of $170.50 per day. After 100 days, a patient becomes responsible for the full daily charge—an average $400 a day. Private Medicare Advantage plans may have different cost-sharing requirements.

Nationally, the average stay for rehabilitation is about 25 days, according to a recent editorial on choosing post-hospital care in the Journal of the American Geriatrics Society.

Quality Varies Widely

In its 2018 report, MedPAC documented large variations in the quality of care provided by SNFs. Notably, facilities with the worst performance were twice as likely to readmit patients to the hospital as those with the best performance. (Readmissions put patients at risk of a host of complications. This measure applied only to readmissions deemed potentially avoidable.) Patients at the best-performing facilities were much more likely to be discharged back home and to regain the ability to move around than those at the worst-performing facilities.

In April, for the first time, Medicare’s Nursing Home Compare website is separating out performance measures for short-term stays in SNFs, for people who are recovering after a hospitalization, and long-term stays, for people with severe, chronic, debilitating conditions.

Seven measures for short-term stays will be included: the portion of patients who experience an improvement in their functioning (such as the ability to walk), return home to the community, are readmitted to the hospital, visit the emergency room, get new prescriptions for antipsychotic medications, have pain well controlled, and are adequately treated for bedsores, according to David Gifford, MD, senior vice president for quality and regulatory affairs at the American Health Care Association, which represents nursing homes and assisted living centers. There will also be a separate “star rating” for short-term stays—an overall indicator of quality.

Questions to Ask

Before making a decision on post-hospital care, older adults and family members should address the following issues:

Your post-hospital needs. Bowles, who has studied what kind of information patients and families find valuable, suggests people ask: What are my needs going to be during the post-hospital period? What kind of help will be needed, and for approximately how long?

Lena Chen, MD, an associate professor of internal medicine at the University of Michigan who has published research examining wide variations in spending on post-acute care after a hospitalization, suggests asking: What is my anticipated recovery, and what do you think the most difficult parts of it might be?

What the SNF provides. Bowles also suggests people ask why the SNF is being recommended instead of home health care. How will the SNF meet my needs, specifically? What kind of medical care and therapy will I get there? From whom and how often?

Carol Levine, who directs the United Hospital Fund’s Families and Health Care Project, suggests that patients and families seek out details about facilities. Is a doctor readily available? (New research suggests 10 percent of patients in skilled nursing facilities are never seen by a physician, nurse practitioner or physician assistant.) What kind of equipment and specialized services are on-site? Can the facility accommodate people with cognitive issues or who need dialysis, for instance?

Getting information early. Vincent Mor, MD, professor of health services, policy and practice at Brown University’s School of Public Health, said patients and families should insist on seeing a discharge planner soon after entering the hospital and start the planning process early. When a planner comes by, “say, ‘I don’t care about choices: Tell me, what do you think will be best for me?’ Be insistent,” he advised.

Burke warns that doctors don’t typically know which SNF is likely to be the best fit for a particular patient—a topic he has written about. He suggests that older adults or their families insist they be given time to contact facilities if they feel rushed. While there’s considerable pressure to discharge patients quickly, there’s also a requirement that hospital discharges be safe, Burke noted. “If we’re waiting for a family to tell us which facility they want a patient to go to, we can’t make a referral or discharge the patient,” he said.

 

A Doctor Speaks Out about Ageism in Medicine

A frank discussion of the biases that undercut older people’s health care
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In a wide-ranging interview, Louise Aronson, MD, a well-known geriatrician and author, talks about ageism among physicians, why it exists and what health care could and should be like for older people. Kaiser Health News (KHN) contributing columnist Judith Graham asks the questions in this eye-opening article that was posted on the KHN website on May 30, 2019. 

Society gives short shrift to older age. This distinct phase of life doesn’t get the same attention that’s devoted to childhood. And the special characteristics of people in their 60s, 70s, 80s and beyond are poorly understood.

Medicine reflects this narrow-mindedness. In medical school, physicians learn that people in the prime of life are “normal,” and scant time is spent studying aging. In practice, doctors too often fail to appreciate older adults’ unique needs or to tailor treatments appropriately.

Imagine a better way. Older adults would be seen as “different than,” not “less than.” The phases of later life would be mapped, and expertise in aging would be valued, not discounted.

With the growth of the elder population, it’s time for this to happen, argues Dr. Louise Aronson, a geriatrician and professor of medicine at the University of California-San Francisco, in her new book Elderhood.

It’s an in-depth, unusually frank exploration of biases that distort society’s view of old age and that shape dysfunctional health policies and medical practices.

In an interview, edited for clarity and length, Aronson elaborated on these themes.

Q: How do you define “elderhood”?

Elderhood is the third major phase of life, which follows childhood and adulthood and lasts for 20 to 40 years, depending on how long we live.

Medicine pretends that this part of life isn’t really different from young adulthood or middle age. But it is. And that needs a lot more recognition than it currently gets.

Q: Does elderhood have distinct stages? 

It’s not like the stages of child development—being a baby, a toddler, school age, a teenager—which occur in a predictable sequence at about the same age for almost everybody.

People age differently—in different ways and at different rates. Sometimes people skip stages. Or they move from an earlier stage to a later stage but then move back again.

Let’s say someone in their 70s with cancer gets really aggressive treatment for a year. Before, this person was vital and robust. Now, he’s gaunt and frail. But say the treatment works and this man starts eating healthily, exercising and getting lots of help from a supportive social network. In another year, he may feel and look much better, as if time had rolled backwards.

Q: What might the stages of elderhood look like for a healthy older person?

In their 60s and 70s, people’s joints may start to give them trouble. Their skin changes. Their hearing and eyesight deteriorate. They begin to lose muscle mass. Your brain still works, but your processing speed is slower.

In your 80s and above, you start to develop more stiffness. You’re more likely to fall or have trouble with continence or sleeping or cognition—the so-called geriatric syndromes. You begin to change how you do what you do, to compensate.

Because bodies alter with aging, your response to treatment changes. Take a common disease like diabetes. The risks of tight blood sugar control become higher and the benefits become lower as people move into this “old old” stage. But many doctors aren’t aware of the evidence or don’t follow it.

Q: You’ve launched an elderhood clinic at UCSF. What do you do there?

I see anyone over age 60 in every stage of health. Last week, my youngest patient was 62 and my oldest was 102.

I’ve been focusing on what I call the five P’s. First, the whole person—not the disease—is my foremost concern.

Prevention comes next. Evidence shows that you can increase the strength and decrease the frailty of people through age 100. The more unfit you are, the greater the benefits from even a small amount of exercise. And yet doctors don’t routinely prescribe exercise. I do that.

It’s really clear that purpose, the third P, makes a huge difference in health and wellness. So I ask people, “What are your goals and values? What makes you happy? What is it you are doing that you like best or you wish you were doing that you’re not doing anymore?” And then I try to help them make that happen.

Many people haven’t established priorities, the fourth P. Recently, I saw a man in his 70s who’s had HIV/AIDS for a long time and who assumed he would die decades ago. He had never planned for growing older or done advance-care planning. It terrified him. But now he’s thinking about what it means to be an old man and what his priorities are, something he’s finally willing to let me help him with.

Perspective is the fifth P. When I work on this with people, I ask, “Let’s figure out a way for you to keep doing the things that are important to you. Do you need new skills? Do you need to change your environment? Do you need to do a bit of both?”

Perspective is about how people see themselves in older age. Are you willing to adapt and compensate for some of the ways you’ve changed? This isn’t easy by any means, but I think most people can get there if we give them the right support.

Q: You’re very forthright in the book about ageism in medicine. How common is that?

Do you know the famous anecdote about the 97-year-old man with the painful left knee? He goes to a doctor, who takes a history and does an exam. There’s no sign of trauma, and the doctor says, “Hey, the knee is 97 years old. What do you expect?” And the patient says, “But my right knee is 97 and it doesn’t hurt a bit.”

That’s ageism: dismissing an older person’s concerns simply because the person is old. It happens all the time.

On the research side, traditionally, older adults have been excluded from clinical trials, although that’s changing. In medical education, only a tiny part of the curriculum is devoted to older adults, although in hospitals and outpatient clinics they account for a very significant share of patients.

The consequence is that most physicians have little or no specific training in the anatomy, physiology, pharmacology and special conditions and circumstances of old age—though we know that old people are the ones most likely to be harmed by hospital care and medications.

Q: What does ageism look like on the ground?

Recently, a distressed, geriatrician colleague told me a story about grand rounds at a major medical center, where the case of a very complex older patient brought in from a nursing home was presented. [Grand rounds are meetings where doctors discuss interesting or difficult cases.]

When it was time for comments, one of the leaders of the medical service stood up and said, “I have a solution to this case. We just need to have nursing homes be 100 miles away from our hospitals.” And the crowd laughed.

Basically, he was saying: we don’t want to see old people; they’re a waste of our time and money. If someone had said this about women or people of color or LGBTQ people, there would have been outrage. In this case, there was none. It makes you want to cry.

Q: What can people do if they encounter this from a doctor?

If you put someone on the defensive, you won’t get anywhere.

You have to say in the gentlest, friendliest way possible, “I picked you for my physician because I know you’re a wonderful doctor. But I have to admit, I’m pretty disappointed by what you just said, because it felt to me that you were discounting me. I’d really like a different approach.”

Doctors are human beings, and we live in a super-ageist society. They may have unconscious biases, but they may not be malicious. So, give them some time to think about what you said. If after some time they don’t respond, you should definitely change doctors.

Q: Do you see signs of positive change?

Absolutely. There’s a much larger social conversation around aging than there was five years ago. And that is making its way to the health system.

Surgeons are thinking more and more about evaluating and preparing older adults before surgery and the different kind of care they need after. Anesthesiologists are thinking more about delirium, which has short-term and long-term impacts on older adults’ brains. And neurologists are thinking more about the experience of illness as well as the pathophysiology and imaging of it.

Then you have the age-friendly, health-system movement, which is unquestionably a step in the right direction. And a whole host of start-ups that could make various types of care more convenient and that could, if they succeed, end up benefiting older people.

 

Researchers Seek Sage Advice of Elders on Aging Issues

Feedback from vulnerable older people shapes research projects
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In this article, journalist Judith Graham, a contributing columnist for Kaiser Health News (KHN), writes about the Bureau of Sages, a unique advisory board of elders, many of whom are ill, disabled or have early-stage dementia. Researchers consult them to find out what they need and ask about the best ways to involve older people in research, how to communicate with them effectively, and more. Graham’s article was posted on the KHN website on April 25, 2019.

CHICAGO — Rachel O’Conor booted up her slides and began posing questions to six older adults sitting around a table: How should primary care physicians support patients and caregivers after a diagnosis of dementia? And what stands in the way of getting adequate support?

“Please speak louder and go slower,” suggested Susanne Smith, a 75-year-old with early-stage Alzheimer’s disease.

Smith belongs to the Bureau of Sages, a group of vulnerable seniors who advise researchers about what matters to older adults, how to involve them in research about aging and how to communicate with them effectively while doing so. It’s a groundbreaking program: traditionally, ill, disabled and cognitively challenged older adults have been excluded from research and assumed to be too compromised to offer useful insights.

“The recognition that this population has something meaningful to contribute—that’s really unique,” said Robyn Stone, a former adviser to the Sages and senior vice president of research at LeadingAge, a national organization of nonprofit providers that focus on aging.

Everyone who works with older adults would do well to pay attention.

Sages groups are housed at several locations. At the Lieberman Center for Health and Rehabilitation, a nursing home in Skokie, a Chicago suburb, nearly a dozen residents meet every two weeks to discuss academic studies, issues they encounter in their daily lives and potential research projects. A similarly sized group of frail, homebound seniors in Chicago’s northern suburbs gets together virtually, via the internet.

At Northwestern University’s downtown medical campus, seven adults with dementia gather every couple of months at the Mesulam Center for Cognitive Neurology and Alzheimer’s Disease to offer feedback to researchers.

On this sunny day in mid-April, Jim Butler, 70, acknowledged it took him 18 months to accept a diagnosis of mild cognitive impairment and speak openly about it. Karen Finesilver, 68, who has Lewy body dementia, stressed the importance of bringing someone along to doctors’ appointments. “When I hear something that makes me nervous, I don’t retain it,” she explained. And Smith spoke of how important it is to feel heard by her physician: “One of the best things is when he actually listens to what I’m saying, because a lot of times doctors may know what’s going on but they do not listen.”

It’s the only time people here talk to you like you have a brain left.

—Sharon Koretsky, 73, on why she loves the meetings with researchers

O’Conor, an assistant professor at Northwestern’s Feinberg School of Medicine, had started the conversation by asking about problems that patients and caregivers face. After the discussion, she said she would focus more on “what helps people build on their strengths” because “the resilience and positivity of people really stood out today.”

The Bureau of Sages has received two rounds of funding totaling $500,000 from the Patient-Centered Outcomes Research Institute (PCORI), an organization that sponsors innovative projects that include patients in setting research priorities, designing research studies and evaluating their impact.

Unlike occasional surveys or focus groups, a standing group like the Sages can provide “valuable ongoing context about individuals’ lives” that sharpens research and makes it more relevant, said Kristin Carman, PCORI’s director of public and patient engagement.

At the Lieberman nursing home, on another April afternoon, two researchers—a physician and a biomechanical engineer—presented a project they’re working on to nine seniors, most in wheelchairs. Their prototype device would help people with compromised mobility stand up from a sitting position, a task that requires a surprising amount of coordination and strength.

“Would I be able to use this [device] if I can’t straighten my leg out all the way?” asked Sharon Koretsky, 73, who has diabetes and severe osteoarthritis and can no longer stand on her own. “If your muscles are atrophied, would this help improve your condition?” wondered Fern Netzsky, 76, who has had multiple sclerosis for 35 years and can no longer stand or walk.

Both women use what’s known as a “sit-to-stand lift”—a clunky device that helps people transfer from a bed to a chair or from a chair to a toilet seat and that requires two aides to maneuver it. Another commonly used device is a Hoyer lift, which uses a sling to help people rise.

“I hate the Hoyer: they pull it between your legs and you lay there like a big sack of potatoes with your butt hanging out,” Koretsky said. Anything that someone could strap on themselves and that could help people get up more easily with only one aide’s help would be a “wonderful idea,” she added.

One group of Sages wants researchers to investigate better training for certified nursing assistants (CNAs).

As other Lieberman residents chimed in, it became clear they wanted help with walking, not just with standing. They wanted to be able to use the device outdoors, as well as inside the facility. And safety was essential. “I would be willing to try this if I was assured I would not fall and if there was enough protection around me,” Netzsky said.

The researchers, who asked not to be identified because they are working on this project outside of their full-time jobs, said they found many of the comments helpful. Older adults are often assumed to be resistant to using technology but this group seemed quite open to technology that improves their quality of life, the physician observed.

After the meeting, Nancy Weinberg, 96, another participant, described a communication gap between researchers and nursing home residents when the Bureau of Sages began. “They were speaking ‘researchese,’ and I didn’t have any idea what they were talking about. Now they understand we don’t want to hear jargon, and they speak our language.”

With characteristic bluntness, Koretsky said she loved the Sages’ meetings, observing, “It’s the only time people here talk to you like you have a brain left.”

The Lieberman Sages are now trying to persuade researchers at Northwestern to investigate the shortage of certified nursing assistants (CNAs) and the need to better train CNAs—problems faced by nursing homes across the nation. Amy Eisenstein, director of the Leonard Schanfield Research Institute at CJE SeniorLife in Chicago and the project’s principal investigator, is working to expand the program to other locations, including Miami University in Oxford, OH, and the University of Massachusetts, Boston. CJE SeniorLife, sponsored by Chicago’s Council for Jewish Elderly, provides a variety of services to seniors and is the Bureau of Sages’ original sponsor.

(Materials that can help any organization launch a Bureau of Sages are available at the Council for Jewish Elderly’s website under the “Resources” section.)

“I think that all research on aging needs to include the voices of older adults,” Eisenstein said. “They are experts about their lives, and we need to incorporate their perspectives to make research better.”

 

When Should You Take Away an Older Person’s Cell Phone?

It’s a delicate matter that can raise ethical issues
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More and more older people are comfortable with technology such as smartphones. But as some develop dementia, families must decide whether to step in and protect them from temptations online. Journalist Judith Graham, writing for Kaiser Health News (KHN), describes problems that can crop up, along with some possible solutions. KHN posted her article on September 26, 2019. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues.  

At first, Robert Zorowitz, MD, thought his 83-year-old mother was confused. She couldn’t remember passwords to accounts on her computer. She would call and say programs had stopped working.

But over time, Zorowitz realized his mother—a highly intelligent woman who was comfortable with technology—was showing early signs of dementia.

Increasingly, families will encounter similar concerns as older adults become reliant on computers, cell phones and tablets: with cognitive impairment, these devices become difficult to use and, in some cases, problematic.

Computer skills may deteriorate even “before [older adults] misplace keys, forget names or display other, more classic signs of early dementia,” Zorowitz wrote recently on a group email list for geriatricians. (He’s based in New York City and [is] senior medical director for Optum, a health services company.) 

“Deciding whether to block their access to their bank accounts, stocks and other online resources may present the same ethical dilemmas as taking away their car keys,” [he said.] 

The emergence of this issue tracks the growing popularity of devices that let older adults communicate with friends and family via email, join interest groups on Facebook, visit virtually via Skype or FaceTime, and bank, shop, take courses or read publications online.

According to the Pew Research Center, 73 percent of adults 65 and older used the Internet in 2019, up from 43 percent in 2010. And 42 percent of older adults owned smartphones in 2017, the latest year for which data is available, up from 18 percent in 2013.

Already, some physicians are adapting to this new digital reality. At Johns Hopkins Medicine, Halima Amjad, MD, an assistant professor of medicine, now asks older patients if they use a computer or smartphone and are having trouble, such as forgetting passwords or getting locked out of accounts.

“If there’s a notable change in how someone is using technology,” she said, “we would proceed with a more in-depth cognitive evaluation.”

Safety can become an issue for an older person with dementia who gets emails from scammers. 

At Rush University’s Alzheimer’s Disease Center in Chicago, neurologist Neelum Aggarwal, MD, finds that older adults are bringing up problems with technology as a “non-threatening way to talk about trouble with thinking.”

“Instead of saying, ‘I have issues with my memory,’ people will say, ‘I just can’t figure out my smartphone’ or ‘I was trying to start that computer program and it took forever to get that done.’”

If the person previously used digital devices without difficulty, Aggarwal will try to identify the underlying problem. Does the older adult have problems with vision or coordination? Is she having trouble understanding language? Is memory becoming compromised? Is it hard for her to follow the steps needed to complete a transaction?

If using technology has become frustrating, Aggarwal recommends deleting apps on cell phones and programs on computers.

“The anxiety associated with ‘Oh, my God, I have to use this and I don’t know how’ totally sets people back and undoes any gains that technology might offer,” she said. “It’s similar to what I do with medications: I’ll help someone get rid of what’s not needed and keep only what’s really essential.”

Typically, she said, she recommends no more than five to 10 cell phone apps for patients in these circumstances.

When safety becomes an issue—say, for an older adult with dementia who’s being approached by scammers on email—family members should first try counseling the person against giving out their Social Security or credit card information, said Cynthia Clyburn, a social worker in the neurology division at Penn Medicine in Philadelphia.

If that doesn’t work, try to spend time together at the computer so you can monitor what’s going on. “Make it a group activity,” Clyburn said. If possible, create shared passwords so you have shared access.

But beware of appropriating someone’s passwords and using them to check email or online bank or brokerage accounts. “Without consent, it’s a federal crime to use an individual’s password to access their accounts,” said Catherine Seal, an elder law attorney at Kirtland & Seal in Colorado Springs, CO. Ideally, consent should be granted in writing.

Older adults with Alzheimer’s commonly turn away from digital devices as they forget how to use them.

With his mother’s permission, one of Zorowitz’s brothers—a physician in Baltimore—installed GoToMyPC, an application that allowed him to remotely manage her computer. He used it to reset passwords and manage items on her desktop and sometimes to order groceries online from Peapod.

Eventually, Selma Zorowitz lost interest in her computer as she slipped further into dementia and spent the end of her life in a nursing home. She died in 2014 at age 87.

Older adults with Alzheimer’s disease commonly turn away from digital devices as they forget how to use them, said Lon Schneider, MD, a professor of psychiatry and neurology at the University of Southern California.

More difficult, often, are situations faced by people with frontotemporal dementia (FTD), which affects a person’s judgment, self-awareness and ability to assess risk.

Sally Balch Hurme’s 75-year-old husband, Arthur, has FTD, diagnosed in 2015. Every day, this elder law attorney and author struggles to keep him safe in a digital world full of threats.

Hundreds of emails pour onto Arthur’s cell phone from telemarketers with hard-to-resist offers. His Facebook account is peopled with “friends” from foreign countries, all strangers. “He has no idea who they are. Some of them are wearing bandoliers of ammunition, holding their guns,” Hurme said. “It is horrific.”

Then, there’s Amazon, a never-ending source of shopping temptation. Recently, Arthur ordered four pocket translators, several watches and a large quantity of maple sugar candies for $1,000. Though returns are possible, Hurme doesn’t always know where Arthur has stored items he’s bought.

What steps has she taken to manage the situation? With Arthur’s permission, she unsubscribes him from accounts that send him emails and removes friends from his Facebook account. On his cell phone, she has installed a parental-control app that blocks him from using it between midnight and 6 a.m.—hours when he was most likely to engage in online activities. There’s also a parental-control setting on the TV to prevent access to “adult” channels.

Instead of an open-ended credit card, Hurme gives Arthur a stored-value card with a limited amount of money. She manages household finances, and he doesn’t have access to the couple’s online banking account. Credit bureaus have been told not to open any account in Arthur’s name.

If Hurme had her way, she said, she’d get rid of Arthur’s cell phone—his primary form of communication. (He has stopped using the computer.) But “I’m very sensitive to respecting his dignity and letting him be as independent and autonomous as possible,” she said. For all the dangers it presents, “his phone is his connection with the outside world, and I can’t take that away from him.”

Loneliness in Older Adults: It’s Complicated

We need to understand it—and tailor individual solutions
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As researchers study loneliness in older people, health insurers and other organizations are developing possible solutions. Journalist Judith Graham delves into this complex issue in an article for Kaiser Health News (KHN). It was posted on the KHN website on March 14, 2019. 

For years, Linda Fried, MD, offered older patients who complained of being lonely what seemed to be sensible guidance. “Go out and find something that matters to you,” she would say.

But her well-meant advice didn’t work most of the time. What patients really wanted were close relationships with people they cared about, satisfying social roles and a sense that their lives had value. And this wasn’t easy to find.

We need “new societal institutions that bring meaning and purpose” to older adults’ lives, Fried recently told a committee of the National Academies of Sciences investigating loneliness and social isolation among older adults. (Fried is a geriatrician and dean of the Mailman School of Public Health at Columbia University.)

The committee’s deliberations come amid growing interest in the topic. Four surveys (by Cigna, AARP, the Kaiser Family Foundation and the University of Michigan) have examined the extent of loneliness and social isolation in older adults in the past year. And health insurers, health care systems, senior housing operators and social service agencies are launching or expanding initiatives. (Kaiser Health News is an editorially independent program of the Kaiser Family Foundation.)

Assuaging loneliness is not just about having random human contact; it’s about the quality of that contact… 

— Vyjeyanthi Periyakoil, MD

Notably, Anthem, Inc. is planning a national rollout to Medicare Advantage plans of a program addressing loneliness developed by its subsidiary CareMore Health, according to Robin Caruso, CareMore’s chief togetherness officer. UnitedHealthcare is making health navigators available to Medicare Advantage members at risk for social isolation. And Kaiser Permanente is starting a pilot program that will refer lonely or isolated older adults in its Northwest region to community services, with plans to eventually bring it to other regions, according to Lucy Savitz, vice president of health research at Kaiser Permanente Northwest. (KHN is not affiliated with Kaiser Permanente.)

The effectiveness of these programs and others remains to be seen. Few have been rigorously evaluated, and many assume increased social interaction will go a long way toward alleviating older adults’ distress at not having meaningful relationships. But that isn’t necessarily the case.

“Assuaging loneliness is not just about having random human contact; it’s about the quality of that contact and who you’re having contact with,” said Vyjeyanthi Periyakoil, MD, an associate professor of medicine at Stanford University School of Medicine.

A one-size-fits-all approach won’t work for older adults, she and other experts agreed. Instead, varied approaches that recognize the different degrees, types and root causes of loneliness are needed.

Degrees of Loneliness

The headlines are alarming: between 33 and 43 percent of older Americans are lonely, they proclaim. But those figures combine two groups: people who are sometimes lonely and those who are always lonely.

The distinction matters because people who are sometimes lonely don’t necessarily stay that way; they can move in and out of this state. And the potential health impact of loneliness—a higher risk of heart disease, dementia, immune dysfunction, functional impairment and early death—depends on its severity.

People who are severely lonely are at “high risk,” while those who are moderately lonely are at lower risk, said Julianne Holt-Lunstad, a professor of psychology and neuroscience at Brigham Young University.

The number of people in the highest risk category is relatively small, as it turns out. When AARP asked adults who participated in its survey last year, “How often do you feel lonely or isolated from those around you?” 4 percent said “always,” while 27 percent said “sometimes.” In the University of Michigan’s just-published survey on loneliness and social isolation, 8 percent of older adults (ages 50-80) said they often lacked companionship (a proxy for loneliness), while 26 percent said this was sometimes the case.

“If you compare loneliness to a toxin and ask, ‘How much exposure is dangerous, at what dose and over what period of time?’ the truth is, we don’t really know yet,” Periyakoil said.

Why it matters: loneliness isn’t always negative, and seniors shouldn’t panic if they sometimes feel this way. Often, loneliness motivates people to find a way to connect with others, strengthening social bonds. More often than not, it’s inspired by circumstances that people adjust to over time, such as the death of a spouse, close family member or friend; a serious illness or injury; or a change in living situation.

Types of Loneliness

Loneliness comes in different forms that call for different responses. According to a well-established framework, “emotional loneliness” occurs when someone feels the lack of intimate relationships. “Social loneliness” is the lack of satisfying contact with family members, friends, neighbors or other community members. “Collective loneliness” is the feeling of not being valued by the broader community.

Some experts add another category: “existential loneliness,” or the sense that life lacks meaning or purpose.

Carla Perissinotto, MD, associate chief for geriatrics clinical programs at the University of California-San Francisco, has been thinking about the different types of loneliness recently because of her 75-year-old mother, Gloria. Widowed in September, then forced to stay home for three months after hip surgery, Gloria became profoundly lonely.

We need to understand what’s driving someone’s loneliness situation before suggesting options.

— Carla Perissinotto, MD

“If I were a clinician and said to my mother, ‘Go to a senior center,’ that wouldn’t get at the core underlying issues: my mother’s grief and her feeling, since she’s not a native to this country, that she’s not welcome here, given the political situation,” Perissinotto said.

What’s helped Gloria is “talking about and giving voice to what she’s experiencing,” Perissinotto continued. Also, friends, former coworkers, family members and some of Perissinotto’s high school buddies have rallied around Gloria. “She feels that she’s a valuable part of her community, and that’s what’s missing for so many people,” Perissinotto said.

“Look at the older people around you who’ve had a major life transition: a death, the diagnosis of a serious illness, a financial setback, a surgery putting them at risk,” she recommended. “Think about what you can offer as a friend or a colleague to help them feel valued.”

Why it matters: listening to older adults and learning about the type of loneliness they’re experiencing is important before trying to intervene. “We need to understand what’s driving someone’s loneliness situation before suggesting options,” Perissinotto said.

Root Causes of Loneliness

One of the root causes of loneliness can be the perception that other people have rejected you or don’t care about you. Frequently, people who are lonely convey negativity or push others away because of perceived rejection, which only reinforces their isolation.

In a review of interventions to reduce loneliness, researchers from the University of Chicago note that interventions that address what they call “maladaptive social cognition”—distrust of other people, negativity and the expectation of rejection—are generally more effective than those that teach social skills or promote social interactions. Cognitive behavior therapy, which teaches people to recognize and question their assumptions, is often recommended.

Relationships that have become disappointing are another common cause of loneliness. This could be a spouse who’s become inattentive over time or adult children or friends who live at a distance and are rarely in touch.

“Figuring out how to promote quality relationships for older adults who are lonely is tricky,” Holt-Lunstad said. “While we have decades of research in relationship science that helps characterize quality relationships, there’s not a lot of evidence around effective ways to create those relationships or intervene” when problems surface.

If you feel lonely or isolated, take stock of your situation and of any underlying problems. 

Other contributors to loneliness are easier to address. A few examples: someone who’s lost a sense of being meaningfully connected to other people because of hearing loss—the most common type of disability among older adults—can be encouraged to use a hearing aid. Someone who can’t drive anymore and has stopped getting out of the house can get assistance with transportation. Or someone who’s lost a sibling or a spouse can be directed to a bereavement program.

“We have to be very strategic about efforts to help people, what it is they need and what we’re trying to accomplish,” Holt-Lunstad said. “We can’t just throw programs at people and hope that something is better than nothing.”

She recommends that older adults take mental stock of the extent to which they feel lonely or socially isolated. Am I feeling left out? To what extent are my relationships supportive? Then, they should consider what underlies any problems. Why don’t I get together with friends? Why have I lost touch with people I once spoke with?

“When you identify these factors, then you can think about the most appropriate strategies to relieve your discomfort and handle any obstacles that are getting in the way,” Holt-Lunstad said.

What If You Don’t Want Dialysis?

Doctors are learning to listen to older patients who reject it
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They’re older, they’re chronically ill and their kidneys are failing, but they don’t want dialysis. When they say that, physicians often resist. That resistance is being challenged now by some top doctors and medical organizations. Journalist Judith Graham explains what’s happening and why in this article she wrote for Kaiser Health News (KHN). It was posted on the KHN website on February 28, 2019. 

Susan Wong, MD, sat down with an 84-year-old patient in the hospital, where he’d been admitted with a flare-up of a serious auto-immune condition and deteriorating kidney function.

The older man told her he wanted to go home; he’d had a good life and was ready for its end. He didn’t want aggressive care—including dialysis—having witnessed his wife and son die painfully in intensive care years ago.

Wong, an assistant professor of nephrology at the University of Washington, was prepared to follow the man’s wishes, but other physicians, eager to pursue tests and treatments, disagreed. For a week, the doctors argued about what to do. Finally, they discharged the patient, who died in hospice care a few weeks later.

Older adults with advanced kidney disease who want to forgo dialysis often encounter similar resistance from physicians, according to a new study in JAMA Internal Medicine by Wong and colleagues at the Veterans Affairs Puget Sound Health Care System in Seattle, where she’s an investigator.

The researchers documented doctors’ reactions by reviewing medical charts of 851 older patients with chronic kidney disease who refused dialysis at the VA health system from 2000 to 2011. In their notes, physicians frequently speculated the patients were incompetent, depressed, suicidal or irrational.

With dialysis, people are hooked up to a machine that removes waste from their blood, usually three times a week for four hours at a stretch. Many older adults find the treatments burdensome, and medical complications are common.

Yet patients who expressed reservations about this treatment were sometimes labeled as difficult or unprepared to confront the reality of their medical condition. “Still in denial about his kidney disease and his need for hemodialysis in the near future—repeat discussions with patient and wife regarding compliance,” one nephrologist wrote. Even when patients were firm about declining dialysis, doctors repeatedly questioned their decisions.

For frail, older patients, dialysis can cause complications, and it may not lengthen life. 

“Clinical practice guidelines for advanced kidney disease are geared toward survival, not what would give patients the best quality of life or the greatest functional capacity,” Wong said. Another factor at play: nephrologists aren’t trained to ask seriously ill patients what’s most important to them and shape treatment recommendations accordingly. Although most patients want to have such conversations with a kidney specialist, few do so, studies have found.

“We don’t really know how to help patients with serious illness make decisions that are right for them or what to do when they don’t really want dialysis,” said Jane Schell, MD, an assistant professor of palliative care and nephrology at the University of Pittsburgh.

Conversations about the potential benefits and burdens of dialysis, as well as alternatives, are especially important for frail patients 75 and older who have two or more chronic conditions, such as diabetes and high blood pressure, and difficulty with daily activities such as bathing or walking—a group at risk of experiencing significant complications from dialysis [and] not achieving longer life.

Healthier older adults have better outcomes on dialysis—a valuable treatment for many people. “We shouldn’t limit access to dialysis based on age, but we should have meaningful conversations about goals of care and make it clear that dialysis is a choice and that patients have alternatives,” said Bjorg Thorsteinsdottir, MD, an assistant professor of internal medicine and bioethics at the Mayo Clinic.

Options that should be discussed include comprehensive conservative care, which calls for preserving as much kidney function as possible, managing a patient’s health problems, dealing with symptoms such as nausea, swelling, itchiness, pain and breathing difficulties, and preparing for end-of-life care; peritoneal dialysis or hemodialysis at home; and palliative dialysis, a less intensive version of this treatment that keeps people alive for longer but isn’t meant to restore kidney function.

Comprehensive conservative care programs are few and far between (in New York City, Pittsburgh, Seattle, San Francisco and a few other locations), but efforts are underway to change that. With funding from the American Society of Nephrology, Schell and colleagues at the University of Pittsburgh have developed an online conservative care curriculum set to debut in [2019]. Nineteen nephrology training programs for physicians are set to participate.

Also, the Pathways Project, funded by the Gordon and Betty Moore Foundation, is working to make palliative care (also known as supportive care) for patients with advanced kidney disease widely available. (KHN’s coverage of end-of-life and serious illness issues is also supported in part by the Gordon and Betty Moore Foundation.) Alvin Moss, MD, co-investigator [for] the project and professor of medicine at West Virginia University School of Medicine, said the project hopes to sign up 10-15 dialysis centers this year.

It’s important for patients to understand that it’s not always all or nothing—dialysis or death. 

Sometimes, patients choose a time-limited trial of dialysis with the understanding that they can change their minds down the road.

Cyndy Patton’s 86-year-old mother, Isabel, learned last spring she had advanced kidney disease after going to a Pittsburgh hospital, sickened by repeated bouts of vomiting. Physicians suggested she try dialysis for a few weeks and see if her kidneys might rejuvenate. (The older woman had survived open-heart surgery and a stroke and was living on her own after her husband’s death.)

After a week in the hospital and another week in a rehabilitation center, there was no change: Patton’s mother still needed dialysis. Five weeks later, she confessed to her daughter that the treatment was making her miserable. But giving it up felt like committing suicide, she told Patton—an unacceptable option.

A week later, Isabel had changed her mind. “This is not a life I care to lead, being hooked up to these machines,” she told Patton. “What am I doing this for?” The older woman had consulted with Schell at the University of Pittsburgh about palliative care and hospice care, and she chose hospice.

Dialysis ended and the family gathered at Isabel’s bedside. “She was all ready to die—but she didn’t, and is still living to this day,” Patton said.

It’s an example of how hard it can be to predict what will happen to any given patient with advanced kidney disease. What’s important for the patient to understand is that “it’s not always all or nothing—dialysis or death,” Thorsteinsdottir said.

“Patients have to be very assertive and tell their medical team: this is what I want and what I don’t want,” Moss said. For more information, he suggested people explore the websites of the Coalition for Supportive Care of Kidney Patients (he chairs that organization), the National Kidney Foundation and the American Association of Kidney Patients, and “really spend some time learning about your options.”

‘Elder Orphans’ Need Fallback Plans

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