Nation's sickest seniors reshape health care

When Debby White was rushed to the hospital last fall with a rare type of blood cancer, what worried her wasn't her own medical problems: It was the health of her husband Jack.

Jack, 74, suffers Lewy body disease, with symptoms similar to Parkinson's and Alzheimer's. He takes nine medications a day, and no one but Debby — who retired two years ago to care for him — knew how to dispense the doses properly.

So as Debby underwent chemotherapy, her sister brought all of Jack's medications. On her hospital bed, they meted out Jack's pills for the weeks ahead.

The Whites' dilemma, of one sick person caring for an even sicker partner or family member, is becoming more and more common.

Two-thirds of traditional Medicare beneficiaries older than 65 have multiple chronic conditions, according to a USA TODAY analysis of county-level Medicare data. More than 4 million — about 15% — have at least six long-term ailments. Those sickest seniors account for more than 41% of the $324 billion spent on traditional Medicare.

As Baby Boomers begin to move into the Medicare years, they are — by the measure of medical diagnoses — sicker than their predecessors, researchers say.

Yet they also are living longer, leaving them to grapple with diseases such as diabetes, asthma, high blood pressure, high cholesterol, heart failure, depression and even Alzheimer's for years — sometimes decades. The result: neither the medical system nor most seniors are prepared for the financial and emotional crisis ahead.

"I've been trying to sound the alarm," says Dana King, a family physician and researcher at West Virginia University who has spent more than a decade studying chronic conditions among Baby Boomers. "If they were just as healthy, we'd be in trouble, from demographics alone. But the problem is, they're not."

The health of seniors varies widely across the USA, but in many areas, it's getting worse. Since 2008, the number of counties where three-quarters of senior Medicare beneficiaries have multiple chronic conditions has gone up 20%. In Texas, for example, 24 counties see at least 85% of all Medicare's medical spending go toward a small number of the sickest seniors.

MEDICARE Spending ON seniors with multiple chronic conditions

Diagnoses of kidney disease, depression and high cholesterol have seen double-digit increases in that time. More than half of all Medicare beneficiaries have been diagnosed with high blood pressure; 27% have diabetes.

The rising tide of Boomers entering their silver years — more than 10,000 people turn 65 each day — has put into stark relief the need for changes that already have begun a medical system upheaval. Traditionally, care often has focused only on one illness — cancer, for instance — or one organ.

Instead, more and more often, a host of health problems intermingle. And without specialists talking with each other about medication interactions, treatment plans and quality-of-life goals, both patients and the finances of the Medicare system are at risk, experts say.

"In terms of the Baby Boomers, it's going to be a shock," says Gerard Anderson, a professor at Johns Hopkins University's Bloomberg School of Public Health. "The health care system is not oriented toward their needs."

The average elderly patient with five or more chronic conditions, he adds, sees 13 doctors and fills 50 prescriptions in a year.

"They have to manage many doctors, multiple medications, and often home health aides and all the others involved. And they're sick," he says. "When you're perfectly intact, it's hard to manage 13 doctors.

"When you're not intact, it's almost impossible."

Debby and Jack White live in Ocean County, N.J., an area that has one of the largest senior populations in the nation — and one of the sickest.

There, more than four of every five seniors on traditional Medicare have at least two chronic conditions, and more than one in five has at least six ongoing illnesses.

Nursing homes, acute care centers, rehabilitation facilities and pharmacies dot both sides of Route 9 in Lakewood, near where the Whites reside.

Three years ago, they downsized to a single-level home in a community for people over 55, moving from a larger house that needed more maintenance before Jack's disease progressed too far to make it manageable.

The couple had planned to move to South Carolina for retirement. Instead, they've chosen a nursing home where Jack will eventually move. Debby, who is 17 years younger than her husband, left her job as a school social worker and counselor years early. She juggles her own medical care with Jack's, and also helps take care of her 85-year-old mother, who lives nearby. This winter, Debby says, she regularly spent three to four days a week at doctors' appointments.

"I can't say it's really fun," she says of her retirement. She misses the busy social life she and Jack, a retired physical fitness teacher, used to share. She misses their conversations. She's tired of worrying about whether they'll have money to pay for Jack's care, whether she'll have the energy to do all that's required of her, whether their 23-year-old son will feel comfortable moving out of the house this fall knowing how much help his parents need.

After years of handling all Jack's medical care, Debby says she caved and hired an in-home nursing aide this winter. She knows the time is coming when she'll need overnight help for Jack as well — if he falls, there's no way she can lift the former college football player by herself.

She's hated turning over daily life in her home to strangers, but knows she can't handle everything herself.

"I try to stay pretty upbeat," she said. "But the frustration is definitely there sometimes."

Down the street at Monmouth Medical Center's Southern Campus, doctors are trying to keep up in providing services to people with scenarios similar to the Whites. The hospital last year got rid of some of its low-volume work, such as delivering babies, and turned over that space to create a special emergency room specifically for patients over 65. The lighting in the geriatric ER is dimmer, there's more privacy, and special equipment to help prevent falls and bedsores.

The goal is to see elderly patients quicker, to admit fewer of them, and get them the services they really need, says Victor Almeida, medical director of emergency services at the hospital. Often that means home care or sub-acute care, rather than a hospital stay.

Upstairs, construction work is ongoing to create a gerontology floor, where Jessica Israel and her team will open an inpatient and outpatient practice focusing on elderly patients, particularly those with chronic conditions.

Israel's gerontology practice started at a sister hospital in neighboring Monmouth County, where the population is younger and far less sick. With grant funding, that hospital in 2011 began a program to better coordinate care for seniors with multiple chronic ailments, focusing specifically on transitions — making sure a patient being discharged from a hospital to a nursing home would get follow-up on changes to medications, for instance, or be introduced to rehabilitation options.

"Traditional medicine doesn't communicate very well," Israel says. "The biggest problem is that things fall through the cracks. And the more (chronic conditions) you have, the more at risk you are for something to get lost in translation."

Today, the initial grant funding has ended but the hospital has continued the program, which has reduced re-admissions, errors and problems, Israel says.That alone makes it worth the hospital's time – Medicare funding is based, in part, on how well hospitals perform.

Among the 640 patients enrolled over two years, re-admissions fell more than 39%, and nearly all patients and caregivers reported high rates of satisfaction with their care, according to a report from the Robert Wood Johnson Foundation, which funded the study.

When the gerontology floor opens in Ocean County later this year, a similar program will begin there.

On a Tuesday morning in May, Israel's team of doctors, a social worker, and representatives from a long-term acute care facility, nursing home, local hospice agency, local pharmacy, the emergency room and a rehabilitation center occupied a conference room in Monmouth County. The arrangement is unusual, requiring a partnership among a number of separate medical groups in the area.

They reviewed a dozen upcoming cases: which patients have returned to the hospital, whose goals of care have changed, and whose family needs to be connected with hospice workers.

In one case, doctors discussed how to talk to a family about persuading a woman with newly diagnosed dementia to give up her driver's license. In another, it was arranging for at-home nurses for a cardiac patient who hopes to return home after rehabilitation. Could they get a volunteer driver to bring a heart-failure patient to regular doctor visits?

"A lot of our focus is not as much scientific as it is human," Israel says. "Taking care of patients in the future is all about teams. Communication is the main thing."

Up until this year, doctors usually weren't compensated for that kind of time-intensive work.

This January, Medicare began making $40 monthly payments to primary-care practitioners who spend time coordinating care for complex cases. It was a change physicians' groups desperately wanted, but Johns Hopkins' Anderson said it's a tiny step in addressing the need for better care.

"That might go a little ways, but it's probably not enough for most doctors," he says. "We almost have to create a whole new profession here — the care coordinators — and then we have to figure out a way to pay for it."

Anderson's research has found that in general, health care spending on a person with one chronic condition was nearly three times that of an individual without a long-term ailment. Spending on someone with five or more chronic conditions was roughly 15 times as much.

Medicare data from 2012, the most recent year available, backs that up. In Ocean County, the average senior beneficiary of traditional Medicare diagnosed with six or more chronic conditions cost the program nearly $30,000; the average senior without multiple chronic conditions cost $1,800.

And the sickest of those account for the lion's share.

In 2010, just 10,000 seniors were responsible for $1 billion in Medicare spending on medical treatments, hospital says and doctor visits, the agency's data show. All but 500 of those people had at least six chronic conditions. Three quarters of these most expensive cases involved Alzheimer's, which experts say is the costliest and most difficult chronic condition to treat, because patients need long-term care and because it greatly complicates treating other ailments.

David Preston estimates that this year, he'll spend roughly $100,000 a year to care for his wife, Patricia, who lives in a small residential facility for Alzheimer's patients in Ocean County.

That doesn't include the costs of the extra physical therapist he brings in each week to help Patti, or what Preston, 79, spends to drive the 16 miles each way to his wife's residence so they can share lunch together. Like in the case of Jack and Debby White, Medicare covers only a tiny fraction of the Prestons' expenses.

Still, Preston considers himself lucky. Six years ago, the couple was living in Pennsylvania. Patti already was struggling with the first stages of Alzheimer's, and David was fighting high blood pressure, arthritis and a heart condition, making his job as caregiver even more difficult. He missed meals and sleep, and says he got depressed.

"My body was saying six months more of this, and you'll be dead," he said. "I knew I had to get control of my health. You come to the realization that you can't help anybody if you're not a survivor."

So Preston moved into a house in Ocean County next door to his brother. He got Patti into the comfortable group home, where she has a private room and he's welcome to visit any time. And he enrolled in a class sponsored by the county office of senior services on managing chronic conditions, which he said spurred changes to his diet, exercise patterns and, most importantly, his outlook.

That's typical of the 200-some Ocean County residents who annually go through the six-week "Take Control of Your Health" program, which is offered many places nationwide, said Louanne Kane, the class coordinator.

"If you're diagnosed with a chronic condition, you need to change your lifestyle — and that means you can't do some of the things they used to do. So there's a sense of loss," Kane says. "It not only affects people physically, but emotionally as well."

Kane's program is one of the oldest of a host of screenings, group meetings and education seminars offered across the county to prompt people to action about their ongoing medical care. It's a message King, the researcher in West Virginia, says has real value in reducing chronic conditions, medications and potential problems

In one of King's studies involving more than 15,000 Baby Boomers, people who adopted a healthy lifestyle over a four-year period were 40% less likely to have a heart attack or to die in the four years after that.

"It can still be staved off," King says, of the Boomers' impending chronic condition crush on the medical system.

"I'm forever hopeful that there will be a real movement that this will catch on."