Friday, April 29, 2011
As was so often the case, she was the first to note this out loud, although my brother Michael and I knew it and were alternately pretending otherwise and making random stabs at solving the problem. In consultation with an elder care lawyer, my brother tried to make sense of New York State Department of Health regulations involving assisted living, "enriched" housing and adult care homes. Which was my mother actually in? We didn't have a clue.
And why were they prohibiting us from hiring private-duty help for her or from even providing her with a wheelchair so she could get to meals and to the bathroom without falling?
Unbeknownst to us, we had chosen for my mother an assisted living facility licensed to provide extra care in only one way: We could sign a new lease for "enriched" housing, at monthly prices ranging from $150 to $1,150 on top of her current rent. This would buy her up to 10 hours a week of personal care, although she could never receive more than four consecutive hours.
Otherwise she was on her own or one of us had to be with her. Anyone needing more attention than that was expected to move to the on-campus nursing home. That place made me shudder and eventually prompted an epiphany on elder care.
When shopping for an independent living, assisted living or continuing care retirement community, focus on the nursing home that is either affiliated with or part of the facility. If you can't imagine your mother or father winding up there, look elsewhere. This requires that you imagine the worst-case scenario, which nobody wants to do. But only by doing that can you be sure your parent will be spared moving to a completely new setting every time her condition deteriorates.
"Aging in place" is the mantra of elder care, ideally at home or in one facility that will serve your needs forever. It rarely happens. Things change. In the trade, moves are known to cause "relocation trauma," physically and emotionally, for the frail elderly person, already sick and scared, and for the adult children, who must orchestrate everything.
As my mother deteriorated in her assisted living facility, I got her three hours a week of personal care. It wasn't nearly enough. Many nights she couldn't make it to the dining room on her walker. But getting her the wheelchair she needed would put her on the fast track to the unthinkable nursing home there.
Was there a chair we could borrow on difficult days, I asked? The facility had two, I was told. One had to be kept in the office for emergencies, and the other could be borrowed by signing up for it during regular business hours, a day in advance. So I would have to know by 5 p.m. Tuesday, say, that my mother was going to need the chair to get to dinner on Wednesday. Or maybe Wednesday's dizzy spell counted as an emergency? But no. The emergency chair had to stay in its place. It all had a "Catch-22" quality.
I didn't sign up for more hours of help because I was worried about money. The idea of going broke haunted me. At night, when I couldn't sleep, I calculated when she would run out of money, then calculated when my brother and I would run out of money if we had to pay all the bills.
Consumed by worry, I felt work was the one safe place — but only so long as I wasn't at my desk, where the phone rang incessantly. My sturdy, independent mother was now in perpetual meltdown. She was petrified, losing control of everything all at once, humiliated, enraged. The mood swings from sweet-and-grateful mom to it's-all-your-fault mom destabilized me as nothing ever had before. I had reached a point of desperation. I needed help.
I had no right to expect someone to fix in short order a situation that had been deteriorating for months. But one day, in a conference room at a geriatric care management agency, that is essentially what I asked. At the table were one of the owners and a social work supervisor. I told them our story, of choosing an assisted living facility that could neither fill my mother's needs nor let me hire someone to fill them. I told them I was coming unglued.
The two professionals agreed that the most important task was to find an appropriate facility. First, however, they'd broker a deal for her to get the help she needed in her current situation: they'd instruct her assisted living facility that safety laws, and my mother's changed status, required 24-hour care and a wheelchair until we could find a suitable new home. Michael and I would go look at a highly regarded nursing home and an assisted living facility that accepted residents with live-in aides and wheelchairs.
They explained the pros and cons, financial and otherwise, of a nursing home versus an assisted living apartment with 24/7 help. They seemed to be leaning toward a nursing home because there, should my mother run out of money, as she likely would, her care would be paid for by Medicaid. In an assisted living facility, someone who can't pay her own way must leave.
Things moved quickly now, but without that heady, anything-is-possible rush I remembered from the weeks surrounding my mother's return to New York from Florida. Nine months had chastened all three of us.
I wouldn't say we were smarter, only that we knew how much we didn't know. Also, we were well on the way to changing our definition of success. My mother was never again going to have the life she had in Florida. She was never again going to be self-sufficient, independent of her children's interference, and we were never again, until her death, going to be free of the responsibility for her well-being. Three people who were family more in name than in fact, not estranged but certainly distant from each other's day-to-day lives, were now working in harness, our goal a safe harbor in which my mother might live out her dwindling days.
Michael and I went to see the Hebrew Home for the Aged, on the banks of the Hudson River in Riverdale, N.Y. We intended to look at a small assisted living building on the main campus, even now clinging to the reluctance of adult children to "put away" their parents. But it was already inadequate to her needs.
Instead we toured the skilled nursing floors, each with 48 residents, two R.N.'s and six certified nurse aides. The admissions director, unbidden, said the ratio of aides to residents was "never enough." Her honesty was appealing.
Our next stop was another assisted living facility, also in Riverdale, run by a corporate up-and-comer in the field. This was one of their newer properties, less than half full. A pushy sales person offered a discount on a one-bedroom apartment, with room for a live-in aide, $3,295 a month, rather than the list price of $3,650. Warning bells went off. The speil continued, but we weren't listening.
Our minds were made up. Hebrew Home it would be. This was the most important decision we had made so far, and my brother and I found ourselves utterly in harmony, led to it as we were by my mother's clear head. Rather than balk at our clumsy efforts to be good children, she had given us permission to do the unthinkable. She would go to a nursing home after all.
Wednesday, April 27, 2011
But turning 100 isn't such a big deal anymore.
America's population of centenarians - already the largest in the world - has roughly doubled in the past 20 years to around 72,000 and is projected to at least double again by 2020, perhaps even increase seven-fold, according to the Census Bureau.
Fried turns 100 on Friday. Her retirement community, Edgewater Pointe Estates in Boca Raton, observed her birthday two weeks ahead of time with other residents born in April.
"In the '80s, we'd make a big deal about it by calling Willard Scott on TV to make that huge announcement," Diana Ferguson, who has worked at Edgewater for 25 years, said of the "Today" show weatherman known for his on-air birthday wishes to viewers who hit the century mark. "But today we have so many residents turning 100-plus that it's not as big a deal."
Fried doesn't mind at all. Simply making it to 100, she said, is enough.
"I don't want any celebration or nothing," she said.
Born in Germany, she lost her first husband in the Holocaust and was herself held at the Westerbork concentration camp before coming to the U.S. She takes no medication, moves around steadily with a walker and said she has been fulfilled by a life in which she found a second love, raised a family and worked as a nurse.
"I still don't believe it," she said.
The Census Bureau estimates there were 71,991 centenarians as of Dec. 1, up from 37,306 two decades earlier. While predicting longevity and population growth is difficult, the census' low-end estimate for 2050 is 265,000 centenarians; its highest projection puts the number at 4.2 million.
"They have been the fastest-growing segment of our population in terms of age," said Thomas Perls, director of the New England Centenarian Study at Boston University.
The rising number of centenarians is not just a byproduct of the nation's growing population - they make up a bigger chunk of it. In 1990, about 15 in every 100,000 Americans had reached 100; in 2010, it was more than 23 per 100,000, according to census figures.
Perls said the rise in 100-year-olds is attributed largely to better medical care and the dramatic drop in childhood-mortality rates since the early 1900s. Centenarians also have good genes on their side, he said, and have made common-sense health decisions, such as not smoking and keeping their weight down.
"It's very clearly a combination of genes and environment," Perls said.
The Social Security Administration says just under 1 percent of people born in 1910 survived to their 100th birthday. Some have speculated that as many as half of girls born today could live to 100.
Those who work with people 100 and above say the oldest Americans are living much healthier lives. A good number still live independently and remain active, their minds still sharp and their bodies basically sound. They have generally managed to confine serious sickness and disability to the final years of their lives.
When Lynn Peters Adler, a former lawyer who founded and runs the National Centenarian Awareness Project, began to recognize the oldest members of the community, she didn't even know the word "centenarian." Now, some weeks she talks to a dozen people who are 100 and older. And in her 25 years of contact with centenarians, she has culled some similarities among them:
- A positive but realistic attitude.
- A love of life and sense of humor.
- And a remarkable ability to accept the losses that come with age but not be stopped by them.
"Centenarians are not quitters," she said.
Peters Adler cautioned against growing too accustomed to centenarians, saying they still deserve to be recognized. After all, census estimates indicate they represent only about one out of every 4,300 Americans.
"It's a great distinction," Peters Adler said. "I think we're sort of shortchanging everything if we become blase about it or say it's not enough to be 100 anymore, you have to be 110."
For their part, some centenarians aren't as wowed by the magic number.
Leo Lautmann, who lives at the Hebrew Home at Riverdale in New York City, reached 100 in December. He paused for a moment when asked how long he'd like to live.
"One hundred and twenty," he said in Yiddish, before reconsidering. "Maybe 110 would be enough."
Tuesday, April 26, 2011
Monday, April 25, 2011
Before pharmaceutical company marketers call on a doctor, they do their homework. These salespeople typically pore over electronic profiles bought from data brokers, dossiers that detail the brands and amounts of drugs a particular doctor has prescribed. It is a marketing practice that some health care professionals have come to hate.
"It's very powerful data and it's easy to understand why drug companies want it," said Dr. Norman S. Ward, a family physician in Burlington, Vt. "If they know the prescribing patterns of physicians, it could be very powerful information in trying to sway their behavior — like, why are you prescribing a lot of my competitor's drug and not mine?"
Marketing to doctors using prescription records bearing their names is an increasingly contentious practice, with three states, Maine, New Hampshire and Vermont, in the vanguard of enacting laws to limit the uses of a doctor's prescription records for marketing.
On Tuesday, the Supreme Court will hear arguments in a case, Sorrell v. IMS Health, that tests whether Vermont's prescription confidentiality law violates the free speech protections of the First Amendment.
The case is being closely watched not only by drug makers and data collection firms, but also by health regulators, doctors and consumer advocates who say the decision will have profound implications for doctors' control over their prescription histories, and for information privacy, medical decision-making and health care costs.
Vermont's attorney general, William H. Sorrell, petitioned the court to review the case after three leading data collection firms including IMS Health, a health information company, and the Pharmaceutical Research and Manufacturers of America, a drug industry trade group, challenged the state statute. Although the federal district court in Vermont originally upheld the law, an appellate court reversed the decision last November.
The federal government, the attorneys general of several dozen states, AARP, professional medical associations, privacy groups and the New England Journal of Medicine have filed briefs in support of Vermont's law. The National Association of Chain Drugstores, the Association of National Advertisers and news organizations like Bloomberg and The Associated Press have filed briefs aligning themselves with the data firms.
The concern over marketing based on doctor-specific prescription records revolves around the argument that it makes commercial use of private health treatment decisions — initiated in nonpublic consultations between doctor and patient, and completed in government-regulated transactions with pharmacists.
The data has become more available because pharmacies, which are required by law to collect and maintain detailed files about each prescription filled, can sell records containing a doctor's name and address, along with the amount of the drug prescribed, to data brokers. (The records are shorn of patient names and certain other personal details covered by the Health Insurance Portability and Accountability Act, known as H.I.P.A.A., the federal legislation governing a patient's privacy.) Data brokers in turn aggregate the records for use in medical research and marketing.
Drug makers spent about $6.3 billion on marketing visits to doctors in 2009, the last year that such figures were available, according to IMS Health. Access to a doctor's prescription history, drug makers say, helps ensure that information about the latest prescription drug options quickly reaches specialists who treat particular conditions.
But some federal regulators and medical societies argue that drug makers are simply mining the data to identify and go after the doctors who would be most likely to prescribe the latest, most expensive brand-name medicines — driving up health care costs and exposing patients to newer drugs whose side effects may not yet be fully known.
Vermont enacted its prescription confidentiality law with the idea that drug makers do not have an inherent right to a doctor's identifiable prescription information for use in marketing because the data originated in highly government-regulated, nonpublic health care transactions, said Mr. Sorrell, the Vermont attorney general.
"Does 'Ajax Incorporated' have a constitutional unfettered right to the data for commercial purposes," Mr. Sorrell said, "or is it legitimate to give the doctor who is writing the prescription a say over whether that information should be used for marketing?"
Although the state law does not inhibit pharmaceutical sales representatives from marketing to doctors in their offices, he said, it does give doctors the right to consent before their prescribing information may be sold and used for marketing. If a doctor does not agree, he said, pharmacies must remove or encrypt the doctor's name, just as they do for patients, before they sell this type of record for promotional use.
Sunday, April 24, 2011