Diagnosed with dementia, she documented her wishes for the end. Then her retirement home said no.

Susan Saran, a longtime Buddhist, often drives to a nearby monastery to practice her faith. Saran is fighting her retirement community over her right to determine how she will die — even though she has made her wishes known in writing. (Heidi de Marco/KHN)

By JoNel Aleccia

 

When she worked on the trading floor of the Chicago Board Options Exchange, long before cellphone calculators, Susan Saran could perform complex math problems in her head. Years later, as one of its top regulators, she was in charge of investigating insider trading deals.

Today, she struggles to remember multiplication tables.

Seven years ago, at age 57, Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. She had started forgetting things, losing focus at the job she had held for three decades. Then tests revealed the grim diagnosis.

“It was absolutely devastating,” Saran, 64, said. “It changed everything. My job ended. I was put out on disability. I was told to establish myself in an [extended] community before I was unable to care for myself.”

So Saran uprooted herself. She sold her home in 2015 and found a bucolic retirement community in rural New York whose website promised “comprehensive health care for life.”

And now, she is fighting with that community over her right to determine how she will die — even though she has made her wishes known in writing. Similar fights could ensnare millions of Americans with dementia and similar end-of-life directives in coming years.

In 2018, after two brain hemorrhages, Saran conferred with a lawyer and signed an advance directive for dementia, a controversial new document that instructs caregivers to withhold ­hand-feeding and fluids at the end of life to avoid the worst ravages of the disease.

“It’s not something that I am willing to endure,” she said. “I don’t want my life prolonged beyond the point where I’m participating in life.”

But when Saran submitted the document to her New York continuing care retirement community, Kendal at Ithaca, where she has spent more than $500,000 to live, officials there said they could not honor her wishes.

In a letter, lawyers told Saran that the center is required by state and federal law to offer regular daily meals, with feeding assistance if necessary. No provision exists, the letter said, for “decisions to refuse food and water.”

When asked about Saran, Kendal’s executive director, Laurie Mante, wrote in an email: “We recognize the great complexity in balancing our residents’ wishes with what is required of us. We have a dedicated team who works to balance those interests, and, when appropriate, work with our residents and their families to seek alternative paths.”

It’s a cruel quandary for Saran and other Americans who have turned to dementia directives that have been created in recent years. Even when people document their choices in these directives — while they still have the ability to do so — no guarantee exists that those instructions will be honored, said Stanley Terman, a California psychiatrist who advises patients on end-of-life decisions.

“It is, in my opinion, a false sense of security,” Terman said.

That may be especially true for the 2.2 million people who live in long-term care settings in the United States. People with dementia are most likely to die in nursing facilities, according to new research from Duke University and Veterans Affairs Boston Healthcare System.

“If you’ve got the resources, where you’ve got family and paid caregivers at home, you’re all set,” said Karl Steinberg, a California geriatrician and hospice physician who has written extensively about dementia directives. If you’re living in a facility, he said, “it’s not going to happen.”

One key question is whether patients with dementia — or those who fear the disease — can say in advance that they want oral food and fluids stopped at a certain point, a move that would hasten death through dehydration.

It is a controversial form of VSED — voluntarily stopping eating and drinking — a practice among some terminally ill patients who want to end their lives. In those cases, people who still have mental capacity can refuse food and water, resulting in death within about two weeks.

Many states prohibit the withdrawal of assisted feeding, calling it basic “comfort care” that must be offered. Only one state, Nevada, explicitly recognizes an advance directive that calls for stopping eating and drinking. And that’s via a little-known law that took effect in October.

Critics of such documents, however, say they could lead to forced starvation of incapacitated people. The directives may be biased, reflecting a society prejudiced against age, disability and cognitive change, said James Wright, medical director of three long-term care facilities in Richmond and lead author of a recent white paper advising facilities not to honor dementia directives.

Based on his years of clinical experience, Wright said many people with dementia become content with their situation, even when they never thought they would be.

“To enforce an advance directive on someone who may have had a complete turnaround on what they think of a life worth living is unethical and immoral,” Wright said.

The dementia directives offered in the past few years are aimed at filling what experts say has been a major gap in advance-care planning: the gradual loss of capacity to make decisions about one’s care.

One version, published in 2018 by Barak Gaster, a professor of medicine at the University of Washington, was downloaded 130,000 times after being mentioned in a New York Times story and continues to be retrieved about 500 times per week.

“This is an issue that people have really thought a lot about,” Gaster said. “They worry about it a lot. They’re so eager and excited to have a structured opportunity to make their wishes known.”

Traditional advance directives focus on rare conditions, such as a persistent vegetative state or permanent coma, Gaster said. “And yet the No. 1 reason a person would lose ability is dementia,” he said.

In addition to Gaster’s document, directives drafted in New York and Washington state have drawn hundreds of users. The aid-in-dying advocacy group Compassion & Choices released a dementia directive in December.

As the U.S. population ages, more people — and their families — are grappling with dementia. By 2050, nearly 14 million Americans 65 and older may be diagnosed with Alzheimer’s disease, according to the Alzheimer’s Association.

“We are right now experiencing the very first upswing of the giant wave of dementia that’s heading our way,” Gaster said.

Saran is on the crest of that wave.

Divorced, with no close family, she turned to Kendal — with its 236 independent units and 84-bed health center — as her final home. During her four years there, she has noticed some decline in her mental clarity.

“Even some of the simplest mathematical problems, like even seven times seven, I can’t think of it now,” Saran said.

Still, she is able to manage her affairs. She cooks her own food and cares for her three cats — Squeaky, Sweetie and Pirate, a one-eyed tabby. A longtime Buddhist, she often drives to a nearby monastery to practice her faith.

In late summer, Saran invited visitors to her small cottage at Kendal, where tapestries hang on the walls and bookshelves are filled with tomes on religion, death and dying.

Frontotemporal dementia affects about 60,000 people in the United States, and patients often die within seven to 13 years. But Saran’s disease appears to be progressing more slowly than expected.

“I think I have great capacity,” said Saran, who wears her silver hair long and favors jeans, linen shirts and turquoise jewelry.

She chain-smokes, lighting up the Seneca cigarettes she buys for $3 a pack from a nearby Indian reservation. She thought about quitting but decided it was not worth the effort and continues to indulge her habit. “If you had my diagnosis, wouldn’t you?” she said.

When Saran was hospitalized after her strokes, she suddenly understood what losing her abilities might mean.

“I realized, oh, my God, I might get stuck in a situation where I can’t take any independent action,” she recalled. “I better make sure I have all my paperwork in order.”

She was stunned to learn it might not matter, even after her local lawyer, Chuck Guttman, drafted health-care proxy documents and a power of attorney. “I thought this was it,” she said. “I thought I’d move here and everything was taken care of, everything was settled. And now it’s not.”

Mante, Kendal’s executive director, declined to comment on Saran’s specific situation, even after Saran authorized her to do so. “As with all of our residents,” she wrote, “we are working diligently to provide for an enriching, quality living environment that honors her independence and wishes.”

Saran said no one from Kendal has yet reached out to discuss an “alternative path.”

Not all dementia directives include instructions about assisted feeding. Gaster said he and his colleagues had “heated conversations” before deciding to leave that issue off their popular document.

Instead, he said, his option helps more people by addressing general goals of care for each stage of the disease. The most important thing, he said, is for people to consider their choices and share their desires with their loved ones.

The debate, Gaster said, boils down to whether “assisted feeding is basic support” or “a medical intervention that can be declined in advance.”

“There’s still a very wide perspective of viewpoints on that,” he said.

Backed by statute and practice, facilities say they are bound to offer food to all residents willing to eat, and to assist with hand-feeding and fluids if a person needs help. The controversy centers on the definition of those terms.

Wright says late-stage dementia patients who show any interest in food — a flick of the eyes, grunting or gestures, opening the mouth — should be fed until they refuse it. Steinberg and others contend the default should be “don’t feed unless they ask for it.”

It is always going to be “somewhat of a guess,” Wright said, about whether hand-feeding someone is help — or force. “I’ve not seen any guidelines that can faithfully give good unbiased guidance,” he said. “I feel that I personally can determine when food means something to my patients and when it doesn’t.”

The growing efforts to use advance directives were inspired, in part, by high-profile cases of dementia patients who were spoon-fed against their apparent wishes. In Oregon and in British Columbia, courts ruled that food and water were basic care that could not be withdrawn.

But so far, there has been no court case that says a clear advance directive for VSED “may or must be honored,” said Thaddeus Mason Pope, a professor at the Mitchell Hamline School of Law who studies end-of-life decisions.

Pope said he has heard of many people who move out — or their families move them out — of long-term care facilities to avoid assisted feeding in the last stages of dementia.

Saran has considered that, too.

“I should probably just leave,” she said, although that would mean losing the nonrefundable investment she already has made. She thinks about moving out every day, but then what? Hospice might be a solution, but only if there is room when she needs it, she said.

Saran said her situation should be viewed as a cautionary tale. She wishes she had asked more questions before moving into her community and insisted on answers about how she would die once her dementia progressed.

“I didn’t realize I was signing away my right to self-determination,” she said. “I am appalled that my future demented self takes precedence over my competent current self.”

Kaiser Health News (KHN) is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

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Diagnosed with dementia, she documented her wishes for the end. Then her retirement home said no.

Woman accused of financially exploiting multiple elderly victims

Jaylon George

by: Antoinette Odom

FOLEY, Ala. (WKRG) — Jaylon George, 19-years-old, is accused of financially taking advantage of at least four elderly residents of a local nursing home, formerly George’s place of employment.

Officers and Criminal Investigators from the Foley Police Department, with the assistance of the Baldwin County Sheriff’s Office and the Baldwin County District Attorney’s Investigative Unit worked together to issue a search warrant for George.

This investigation is being conducted in a cooperative effort by a newly formed team created by the Baldwin County District Attorney’s Office targeting financial exploitation and abuse of the elderly.

George, who was out on bond for previous financial crimes, was arrested and charged with two felony counts and two misdemeanor counts of Financial Exploitation of the Elderly, two felony counts of Theft of Property, and one felony count of Possession of Forged Instrument.

The Foley Police Department says additional victims may have been discovered during the search and additional charges are likely.  George’s previous bond has been revoked.

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Woman accused of financially exploiting multiple elderly victims

Dementia patient and her carer sing Sinatra classic and hit number 7 on the charts

By Jakob Neeland

When 31-year-old carer Jamie Lee Morley first heard aged care resident Margaret Mackie sing, he automatically assumed that the beautiful voice he heard was coming from a nearby radio.

While it is certainly not uncommon for aged care staff and residents to develop strong bonds, nobody at the Northcare Suites Care Home in Glasgow, Scotland, could have imagined what would happen next.

The pair were recently thrust into the public spotlight as heartwarming footage of the young carer and the 83-year-old resident performing Frank Sinatra’s ‘My Way’ at the nursing home Christmas party became a viral internet sensation.

And if that wasn’t enough, this dynamic duo have now recorded the song professionally and it is soaring up the charts in the UK.

Like many seniors living with dementia, Margaret experiences significant issues with short-term memory loss, but her ability to recall classic songs and the positive effects of this process highlight why musical therapy is an area of growing interest.

According to an interview with Margaret’s daughter, new-found fame has given the 83-year-old a “new lease on life”, noting that living with dementia was beginning to take a toll on her mother’s emotional wellbeing.

Margaret and Jamie’s rendition of ‘My Way’ currently sits at number 31 on the iTunes Top 40 UK Pop Songs live chart, ahead of international megastars like Ed Sheeran, Justin Beiber and The Black Eyed Peas.

But the single actually reached number seven on the charts just last week.

The single is currently available to download on iTunes, with all profits from song sales to be split between the Alzheimer’s Society and Dementia UK.

While Margaret’s vocal abilities may have come as a shock, her carer Jamie is a part-time singer who regularly performs other classic renditions of Elvis songs with Margaret at the nursing home.

Jamie grew up watching his grandfather live with Alzheimer’s disease, and topping the charts is allowing the young man to raise money for charity and bring joy to his favourite resident’s life.

It appears that Jamie has found his calling working with seniors, as the former barista’s musical talents provide a walk down memory lane for those living with dementia.

Picture courtesy of Jamie Lee Morley YouTube Channel.

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Dementia patient and her carer sing Sinatra classic and hit number 7 on the charts

Tonight on Marti Oakley's TS Radio Network: AUSTRALIA TALKS BACK, More on Jewish Aged Care Abuses

7:00 pm CST

"Mr. D returns this evening, speaking to us from somewhere in Australia. With the police stalking his home and attempting to arrest him for speaking out about the abuses that his father has suffered in what is supposed to be a safe place for his aging father, Mr D is on the run. His father recently remarked that it was "1940 all over again".

None of us are safe from the predators operating in these civil tribunals that engage in human trafficking for profit. As Australia wakes up to the growing issue of the kidnapping, isolation and theft of estates of the elderly, from which the Jewish community has not been spared, the anger grows over the outright fraud, abuse, neglect and premature deaths of the elderly. While many people are extremely upset about the revelations that have exposed the ugly under belly of so-called "government", there are others who would prefer to look away and pretend they don't know.

Please visit: Australian Association to Stop Guardianship & Admin Abuse (AASGAA) on Facebook for more information and to connect with others from all walks of life that have found their family trapped in this system." ...

LISTEN LIVE or listen to the archive later
Australian Association to Stop Guardian Abuse - AASGAA

Father and adult daughter sue feds over confiscated life savings

By Theresa Braine

Rebecca Brown wants the government to give back her father's $82,373. (Institute for Justice)

Retired railroad worker Terry Rolin and his parents, scarred by their experiences during the Great Depression, used to squirrel earnings and pension withdrawals in the basement of their Pennsylvania home.

But his decision to hand the money to daughter Rebecca Brown for deposit in a bank account after he moved out of his family home into an apartment realized his worst fears. The government has confiscated the 79-year-old’s $82,373 life savings, and does not plan to give it back, according to a lawsuit.

Federal officials call it a necessary tool to combat crime. But to Rolin and his daughter, Rebecca Brown, it’s outright robbery.

As Brown traveled from Pittsburgh to her Massachusetts home last summer, carrying the money that her father had entrusted to her, she was stopped by agents from the U.S. Drug Enforcement Administration and the Transportation Security Administration. Even though she was carrying the money domestically, which is perfectly legal, they challenged her over the amount, then took it away.

To date, Rolin has yet to retrieve the money. On Wednesday they sued both agencies both on their behalf and seeking class action status for the legions of people in their position.

Brown had been carrying her father’s money to deposit in a joint account, she said in a statement from the Institute for Justice, a nonprofit with a libertarian bent that works to safeguard people’s constitutional rights.

She stuffed it into a plastic container and stowed it in her carry-on luggage, having checked online to determine that carrying that amount of cash domestically was legal.

The DEA agent who met Brown at the gate wanted her to corroborate her story by calling her father, she told The Washington Post. But Rolin has started to decline mentally, so he could not verify everything the agent thought he should.

“He just handed me the phone and said, ‘Your stories don’t match,’ ” Brown told The Washington Post. “ ‘We’re seizing the cash.’ ”

They searched her bags, finding no contraband. Neither has a criminal record.

That was last summer. A few months later, the Institute for Justice said in a statement, both received notice that the money would be permanently confiscated under civil forfeiture, which allows law enforcement to take money even in the absence of a criminal conviction. In their case, they haven’t even been charged.

“You don’t forfeit your constitutional rights when you try to board an airplane,” justice institute senior attorney Dan Alban said in a statement. “It is time for TSA and federal law enforcement to stop seizing cash from travelers simply because the government considers certain amounts of cash ‘suspicious.’ ”

Neither agency would comment, according to The Washington Post, with DEA spokeswoman Katherine Pfaff saying, “We can’t comment on ongoing litigation,” and a TSA spokeswoman, Jenny L. Burke, telling the newspaper by email that “as a matter of policy, TSA does not comment on pending litigation.”

The 52-page suit, filed Wednesday in U.S. District Court for Pennsylvania’s Western District, seeks return of the money, as well as “compensatory damages,” and to “put these systematic unlawful and unconstitutional policies and practices to an end.”

“Terry’s and Rebecca’s story is not unique,” the lawsuit alleges. “What happened to them illustrates the systematic policies or practices of TSA and DEA: seizing cash from air travelers based solely on the presence of what these agencies believe to be ‘large’ or ‘suspicious’ amounts of cash.”

“We did nothing wrong and haven’t been charged with any crime, yet the DEA is trying to take my father’s life savings,” Brown told the Pittsburgh Post-Gazette. “His savings should be returned right away, and the government should stop taking money from Americans who are doing something completely legal."

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Father and adult daughter sue feds over confiscated life savings

NAIFA-New Jersey Promotes Law to Protect Vulnerable Adults from Financial Exploitation

Trenton, NJ –Thousands of seniors and other vulnerable adults in this country each year fall victim to financial exploitation, often losing their entire life savings to unscrupulous people. The National Association of Insurance and Financial Advisors’ New Jersey chapter (NAIFA-New Jersey) has helped enact a law to protect this defenseless group from exploitation. This legislation, A-5091 (McKeon), was signed into law by Governor Murphy on January 13, 2020.

“NAIFA-NJ members work hard to protect their clients,” said NAIFA-NJ President Corrado Gugliotta. “A law such as this is one more tool the professional members of NAIFA-NJ will have to keep older adults safe.”

Under the new law, a qualified individual who reasonably believes that financial exploitation of an eligible adult has occurred would be required to notify the Bureau of Securities as well as any applicable county adult protective services provider. A “qualified individual” is any agent, investment adviser representative or other person that serves in a supervisory, compliance, or legal capacity for a broker-dealer or investment advisor.

“Unfortunately, it’s not uncommon for senior citizens to be taken advantage of by people seeking to take their money, property, assets or identities,” said Assemblyman John McKeon (D-Essex, Morris) in a statement. “These crimes often go unreported and untracked. The good news is financial exploitation can be prevented with the right protections in place.”

Furthermore, the broker-dealer or investment advisor may delay disbursement from an eligible adult’s account if it may result in financial exploitation. In so doing, the broker-dealer or investment advisor would be immune from any administrative or civil liability.

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NAIFA-New Jersey Promotes Law to Protect Vulnerable Adults from Financial Exploitation

Elder Law: Will you plan now or pay later?

By Wesley E. Wright and Molly Dear Abshire

Estate planning attorneys will agree, it’s better to die with a properly drafted Will than to die without one. If you don’t have one, consider getting one. You will want to direct your assets to those persons whom you wish to receive a legacy as opposed to relying on the alternative, which is a default plan arranged for you by the State of Texas.

You will also want to name an independent executor along with successors in the event the first executor fails, refuses, or becomes unable to serve. You may also want to include special trusts to provide for family members who are disabled as well as trusts for minors and perhaps adult children.

Here are three big considerations you may not have thought of before that may require changes to your estate plan or motivate you to get one. Years ago, the exemption equivalent, which allows a person to leave a certain amount of money to beneficiaries tax-free was much smaller.

The law required a person to either use it or lose it. For example, if in 1987, when the exemption equivalent was $600,000 per taxpayer, a couple was forced to use a by-pass trust in order to shelter the first $600,000 upon the first to die in order to take advantage of the exemption. The exemption will be $11.58 million in 2020. Additionally, the law has changed regarding “use it or lose it”. While there may still be relevant reasons to use a forced by-pass trust in a person’s Will, in some cases, it may be time to eliminate it.

Secondly, consider implementing planning to exercise some control over your assets after you pass away. Let’s say George and Martha have three children. George dies leaving his assets to Martha, then Martha dies leaving all of her assets to their three children. One of the children, Susan, dies after her mother. Susan’s Will leaves all of her assets to her husband, Frank. Frank later remarries. The new bride may be spending Frank’s money and depending on the circumstances, may burn up all of the assets, leaving nothing for Susan and Frank’s children. Would George and Martha want their assets to be used by a stranger instead of going to their own grandchildren?

Thirdly, you could have a heart attack, a stroke, or an unfortunate incident, such as an auto accident. Those events can happen suddenly with no warning. You were healthy and then suddenly you become severely disabled. We should all plan like it might happen to us. Why would a person want to pass up the opportunity to prepare documents such as powers of attorney for property, powers of attorney for health care, living wills and medical privacy documents?

Becoming the subject of a court supervised guardianship proceeding which becomes a matter of public record for all the world to see, not to mention the unnecessary expense and frustration of a guardianship that could have been avoided had you just taken care of preparing the appropriate documents. And why would you want to procrastinate making a Will and then die suddenly not ever having taken time to make your Will? Now your family will have to pay more for a more costly probate proceeding.

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Elder Law: Will you plan now or pay later?

She’s 91 and Is Being Kicked Out of Her Apartment

Dozens of residents of an independent living community in Manhattan — some as old as 99 — are being forced out of the homes they thought they’d die in.

Residents of the Riverview Senior Residence in Manhattan.Credit...Photographs by Karsten Moran for The New York Times

By Sharon Otterman

Gabrielle Wagner, 91, moved into the Riverview Senior Independent Living facility last April after her identical twin, whom she had lived with, died in 2018. She had been lonely and the modern apartment tower in Hell’s Kitchen felt less like assisted living and more like a comfortable community for active seniors where she could live out her days.

“I thought I’d go out feet first,” she said just before Christmas. “I thought I’d finally found a place I can stay in until I die.”

Muriel Fisher, 86, left her $811-a-month, rent-controlled, two-bedroom apartment in Jackson Heights, Queens, to move in to a studio at the Riverview in 2018. Her grandson, who lives on the same Manhattan block as the center, insisted it was no longer safe for her to be alone.

Milton Gluck, also 86, moved in three months ago to be closer to his son, after his partner of 30 years entered a nursing home. He hasn’t yet fully unpacked.

Then, on Dec. 3, the building’s management distributed a surprise letter to all the residents. Riverview was being sold, it said, “sometime in the first few months of 2020.” Everyone would have to leave.

The nonprofit that owns the building said the center, which opened less than two years ago, had been losing money and it could no longer afford to run it. The group was seeking a market-rate buyer.

The news sent the 31 residents of Riverview — who are nearly all in their 70s, 80s and 90s — into a panic, unsure of where they would go.

New York City is in the grips of an affordable housing crunch for seniors — the latest data shows an estimated 200,000 low-income seniors were on waiting lists for federally subsidized housing in 2016 citywide — and middle-income seniors are also struggling to find homes that fit their needs.

A banner reading “Now Available Senior Residence” can be seen at the top of the facade of the Riverview Senior Residence.

At the high end, there are luxury independent living options in Manhattan like the Atria on West 86th Street, where fees soar to over $11,000 a month for a one-bedroom, and the Inspir, an even more expensive option opening on the Upper East Side.

For older New Yorkers in the middle — even those who can afford Riverview’s rates of about $4,000 a month for a small apartment, three meals a day, housekeeping and some social events — the options are limited. And when you’re a nonagenarian looking for what may be your last home, it’s not just about finding an open spot.

The EastView, a new independent living facility that the Salvation Army just opened in Harlem, has space, but many residents felt it was too far from their families. The West 74th Street Residence, which has interviewed several Riverview residents, was less expensive, but had less charm, some said.

Nothing felt like the Riverview, a 14-story building at 49th Street and 10th Avenue in the heart of Midtown. Several residents described falling in love with its hotel-like hallways, modern finishes and Hudson River views. So its residents, many using pensions from careers as educators, engineers or public servants, sold homes, left friends and moved in.

For Stuart Dunn, 90, it was the second time that his senior living landlord was asking him to move in order to sell the property. Until 2018, he lived in the Williams on the Upper West Side, a Salvation Army-owned independent living residence that was closed to make way for luxury housing.

“It is a societal issue that we really are at the cutting edge of,” he said, of the difficulty of finding a quality place to live with other independent seniors. “What is society going to do about the elderly?”

He said he most feared losing contact with his fellow residents, particularly Ms. Fisher, with whom he had become very close.

Muriel Fisher sitting in her apartment at the Riverview Senior Residence on Dec. 19, 2019.Credit...Karsten Moran for The New York Times

Some residents are meeting with lawyers to see what else can be done. About five have already moved out.

One has died, and another, who has been in the hospital, has not been able to deal with the news completely. “They are fearful of what is going to happen, and overwhelmed,” Joel Riff, 68, who is among the younger residents. “The mood is pretty depressed.”

They were particularly surprised, they said, because Riverview is owned by a nonprofit corporation that largely operates homeless shelters, Homes for the Homeless. After losing its city contract to run the building as a family homeless shelter in 2015, the organization decided to renovate and reopen the facility as an independent living building in early 2018, said Ralph da Costa Nunez, the chief executive officer of Homes for the Homeless.

The organization had succeeded with a similar conversion in Staten Island, and thought it could do the same in Manhattan. But Riverview never filled more than 35 or so of its 82 apartments, he said.

The residents felt that Riverview had not adequately marketed itself. Some said that they knew seniors who had reached out to explore moving in, but that the management had not followed up with them. Mr. da Costa Nunez disputed that account. He said there were likely not enough interested residents because Riverview did not offer assisted living services, and some families wanted the option of more comprehensive care as their family members aged.

Assisted living centers are regulated by the New York Department of Health, which provides additional protections to residents. But the Riverview, though it marketed itself as a place where seniors could bring private aides, had no such designation. As a result, the seniors, who had only month-to-month contracts, were vulnerable to eviction.

Mr. da Costa Nunez said that his organization could no longer afford to run the facility at a loss. “We are getting killed” with the costs of food, staffing and utilities, he said, adding that part of the issue was that the seniors were keeping the heat too high.

The losses, which he said amounted to “several million dollars already,” had started to threaten the operation of the senior facility in Staten Island, he said.

“No one wants to shut this down,” he said, “but Economics 101 is Economics 101.” He added that the closure “won’t happen before April for sure,” though the management had not stated the same in writing to the residents.

As the losses spiraled, residents said, the nonprofit repeatedly reassured its tenants not to worry and kept signing new contracts. Among the most fragile residents are a 99-year-old Holocaust survivor, who has no family and is looked after by an organization, Selfhelp Community Services, and Mildred Burt, 95, who arrived in March at the urging of a niece.

Ms. Burt had come from a public-housing project where she had lived for 60 years. Her niece, Pat Jackson, said: “Where does that leave me? With an aunt who is 95 years old who is basically homeless, and not much time to look. This is just heartless.”

Determined to fight back, the seniors formed a committee and contacted their elected officials. Five local elected officials signed a joint letter to Mr. da Costa Nunez demanding more time and support to the displaced seniors. 

“They are slipping through the regulatory framework,” said State Senator Brad Hoylman, who represents the area, vowing to look into the matter further. “That seems to be duplicitous.”

Mr. Nunez himself earned over $620,000 in 2018 as the director of Homes for the Homeless and its nonprofit affiliates, according to tax documents. At a heated meeting with elected officials on Dec. 19, he claimed to be surprised by the angry reaction to the closure and “questioned why these seniors can’t fend for themselves,” Mr. Hoylman recalled.

As the issue gained attention, Riverview sent residents a follow-up letter on Dec. 20, saying that the building would “likely” not be sold until April.

“No one is being thrown out,” the letter said.

Gabriel Wagner, 91, reads in her apartment at the Riverview Senior Residence.Credit...Karsten Moran for The New York Times

“We are going to run the place until we can transition every person out of there appropriately,” Mr. Nunez said in the interview.

Amid the uncertainty, the seniors have begun to plan their next steps. Both Mr. Dunn and Ms. Fisher have put deposits down at the Carnegie East House on East 96th Street, where assisted-living studios with meals start at $6,400 a month, a stretch for them. Ms. Wagner is moving March 1 to the EastView in Harlem, selling some of her furniture to do so.

“Luckily for me, I was a Navy wife, so I know what moving is all about,” she said. “Not that I am looking forward to it.”

Kitty Bennett contributed research.

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She’s 91 and Is Being Kicked Out of Her Apartment

Patients Want To Die At Home, But Home Hospice Care Can Be Tough On Families

Maria Fabrizio for WPLN

"I'm not anti-hospice at all," says Joy Johnston, a writer from Atlanta. "But I think people aren't prepared for all the effort that it takes to give someone a good death at home."

Even though surveys show it's what most Americans say they want, dying at home is "not all it's cracked up to be," says Johnston, who relocated to New Mexico at age 40 to care for her dying mother some years ago. She ended up writing an essay about her frustrations with the way hospice care often works in the U.S.

Johnston, like many family caregivers, was surprised that her mother's hospice provider left most of the physical work to her. She says that during the final weeks of her mother's life, she felt more like a tired nurse than a devoted daughter.

According to a recent Kaiser Family Foundation poll, seven in 10 Americans say they would prefer to die at home. And that's the direction the health care system is moving, too, hoping to avoid unnecessary and expensive treatment at the end of life.

The home hospice movement has been great for patients, says Vanderbilt palliative care physician Parul Goyal, and many patients are thrilled with the care they get.

"I do think that when they are at home, they are in a peaceful environment," Goyal says. "It is comfortable for them. But," she notes, "it may not be comfortable for family members watching them taking their last breath."

Still, when it comes to where we die, the U.S. has reached a tipping point. Home is now the most common place of death, according to new research, and a majority of Medicare patients are turning to hospice services to help make that possible. Fewer Americans these days are dying in a hospital under the close supervision of doctors and nurses.

Hospice allows a patient deemed to have fewer than six months to live to change the focus of their medical care — from the goal of curing disease to a new goal of using treatments and medicines to maintain comfort and quality of life. It is a form of palliative care, which also focuses on pain management, but can be provided while a patient continues to seek a cure or receive treatments to prolong life.

Usually, hospice care is offered in the home, or sometimes in a nursing home.

Since the mid-1990s, Medicare has allowed the hospice benefit to cover more types of diagnoses, and therefore more people. As acceptance grows among physicians and patients, the numbers continue to balloon — from 1.27 million patients in 2012 to 1.49 million in 2017.

According to the National Hospice and Palliative Care Association, hospice is now a $19 billion industry, almost entirely funded by taxpayers. But as the business has grown, so has the burden on families, who are often the ones providing most of the care.

For example, one intimate task in particular changed Joy Johnston's view of what hospice really means — trying to get her mom's bowels moving. Constipation plagues many dying patients.

"It's ironically called the 'comfort care kit' that you get with home hospice. They include suppositories, and so I had to do that," she says. "That was the lowest point. And I'm sure it was the lowest point for my mother as well. And it didn't work."

Hospice agencies primarily serve in an advisory role and from a distance, even in the final, intense days when family caregivers, or home nurses they've hired, must continually adjust morphine doses or deal with typical end-of-life symptoms, such as bleeding or breathing trouble. Those decisive moments can be scary for the family, says Dr. Joan Teno, a physician and leading hospice researcher at Oregon Health and Science University.

"Imagine if you're the caregiver, and that you're in the house," Teno says. "It's in the middle of the night, 2 o'clock in the morning, and all of a sudden, your family member has a grand mal seizure."

That's exactly what happened with Teno's mother.

"While it was difficult for me to witness, I knew what to do," she says.

In contrast, Teno says, in her father's final hours, he was admitted to a hospice residence. Such residences often resemble a nursing home, with private rooms where family and friends can come and go and with round-the-clock medical attention just down the hall.

Teno called the residence experience of hospice a "godsend." But an inpatient facility is rarely an option, she says. Patients have to be in bad shape for Medicare to pay the higher inpatient rate that hospice residences charge. And by the time such patients reach their final days, it's often too much trouble for them and the family to move.

Hospice care is a lucrative business. It is now the most profitable type of health care service that Medicare pays for. According to Medicare data, for-profit hospice agencies now outnumber the nonprofits that pioneered the service in the 1970s. But agencies that need to generate profits for investors aren't building dedicated hospice units or residences, in general, mostly because such facilities aren't profitable enough.

Joe Shega, chief medical officer at for-profit Vitas, the largest hospice company in the U.S., insists it's the patients' wishes, not a corporate desire to make more money, that drives his firm's business model. "Our focus is on what patients want, and 85 to 90 percent want to be at home," Shega says. "So, our focus is building programs that help them be there."

For many families, making hospice work at home means hiring extra help.

'I guess I've just accepted what's available'

At the kitchen table of her home outside Nashville, hospice patient Jean McCasland is refusing, on the day I visit, to eat a spoonful of peach yogurt. Each morning, nurse's aide Karrie Velez pulverizes McCasland's medications in a pill crusher and mixes them into her breakfast yogurt.

"If you don't, she will just spit them out," Velez says.

Like a growing share of hospice patients, McCasland has dementia. She needs a service that hospice rarely provides — a one-on-one health attendant for several hours, so the regular family caregiver can get some kind of break each day.

John McCasland (right) of Goodlettsville, Tenn., hired a private caregiver to help with his wife, Jean (left), who suffered from dementia for eight years. Even when hospice took over, he still found he needed the extra help from Karrie Velez (center). Jean died in October after 13 months on home hospice.  Blake Farmer/WPLN 

 

When Velez is not around, John McCasland — Jean's husband of nearly 50 years — is the person in charge at home.

"I have said from the beginning that was my intention, that she would be at home through the duration, as long as I was able," John says.

But what hospice provided wasn't enough help. So he has had to drain their retirement accounts to hire Velez, a private caregiver, out-of-pocket.

Hospice agencies usually bring in a hospital bed, an oxygen machine or a wheelchair — whatever equipment is needed. Prescriptions show up at the house for pain and anxiety. But hands-on help is scarce.

Medicare says hospice benefits can include home health aides and homemaker services. But in practice, that in-person help is often limited to a couple of baths a week. Medicare data reveals that, on average, a nurse or aide is only in the patient's home 30 minutes, or so, per day.

Jean McCasland's husband hasn't complained. "I guess I've just accepted what's available and not really thought beyond what could be," John says. "Because this is what they say they do."

Families rarely consider whether they're getting their money's worth because they're not paying for hospice services directly: Medicare gets the bills. John keeps his monthly statements from Medicare organized in a three-ring binder, but he had never noticed that his agency charges nearly $200 a day, whether there is a health provider in the home on that day or not.

That daily reimbursement also covers equipment rentals and a 24-hour hotline that lets patients or family members consult a nurse as needed; John says it gives him peace of mind that help is a phone call away. "There's a sense of comfort in knowing that they are keeping an eye on her," he says.

The rate that hospice charges Medicare drops a bit after the patient's first two months on the benefit. After reviewing his paperwork, John realizes Medicare paid the hospice agency $60,000 in the first 12 months Jean was on hospice. Was the care his wife got worth that?

"When you consider the amount of money that's involved, perhaps they would provide somebody around the clock," he says.

Sue Riggle is the administrator for the McCaslands' hospice agency and says she understands how much help patients with dementia need.

"I think everybody wishes we could provide the sitter-service part of it," says Riggle. "But it's not something that is covered by hospices."

Her company is a small for-profit business called Adoration; she says the agency can't provide more services than the Medicare benefit pays for.

I checked in again with John and Velez (Jean's long-time private caregiver) this winter. The two were by Jean's side — and had been there for several days straight — when she died in October. The hospice nurse showed up only afterward, to officially document the death.

This experience of family caregivers is typical, but often unexpected.

'It's a burden I lovingly did'

"It does take a toll" on families, says Katherine Ornstein, an associate professor of geriatrics and palliative medicine at Mount Sinai Hospital in New York, who studies what typically happens in the last years of patients' lives. The increasing burden on loved ones — especially spouses — is reaching a breaking point for many people, her research shows. This particular type of stress has even been given a name: caregiver syndrome.

"Our long-term-care system in this country is really using families — unpaid family members," she says. "That's our situation."

A few high-profile advocates have even started questioning whether hospice is right for everybody. For some who have gone through home hospice with a loved one, the difficult experience has led them to choose otherwise for themselves.

Social worker Coneigh Sea has a portrait of her husband that sits in the entryway of her home in Murfreesboro, Tenn. He died of prostate cancer in their bedroom in 1993.

Coneigh Sea is a social worker from Murfreesboro, Tenn., who cared for her husband as he died on home hospice. Now, she wants to make sure her children don't do the same for her.

Blake Farmer/WPLN 

 

Enough time has passed since then that the mental fog she experienced while managing his medication and bodily fluids — mostly by herself — has cleared, she says. But it was a burden.

"For me to say that — there's that guilt," she says, then adds, "but I know better. It was a burden that I lovingly did."

She doesn't regret the experience but says it is not one she wishes for her own grown children. She recently sat them down, she says, to make sure they handle her death differently.

"I told my family, if there is such a thing, I will come back and I will haunt you," she says with a laugh. "Don't you do that."

Sea's family may have limited options. Sidestepping home hospice typically means paying for a pricey nursing home or passing away with the cost and potential chaos of a hospital — which is precisely what hospice care was set up to avoid.

As researchers in the field look to the future, they are calling for more palliative care, not less — even as they also advocate for more support of the spouses, family members and friends who are tasked with caring for the patient.

"We really have to expand — in general — our approach to supporting caregivers," Ornstein says, noting that some countries outside the U.S. pay for a wider range and longer duration of home health services.

"I think what we really need to do is be broadening the support that individuals and families can have as they're caring for individuals throughout the course of serious illness," Ornstein says. "And I think that probably speaks to the expansion of palliative care in general."

Blake Farmer's reporting on end-of-life care is part of a reporting fellowship on health care performance, sponsored by the Association of Health Care Journalists and supported by the Commonwealth Fund.

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Patients Want To Die At Home, But Home Hospice Care Can Be Tough On Families