Journalist Gail Sheehy's painful passage through U.S. health system echoes that of many caregivers
MONDAY, Oct. 27 (HealthDay News) -- In her long struggle to care for her gravely ill husband, journalist and Passages author Gail Sheehy recalls one defining moment.
More than a year ago, her husband, publisher Clay Felker, was being discharged from a New York City rehabilitation facility after spending several months there in his long battle with throat cancer. As always, Sheehy was at his side.
"So, he has to come home now, and we've run out of benefits," Sheehy recalled at a recent media briefing in New York City. "We're coming out, and there's also nobody telling me what I have to do. He has a feeding tube, he has a tracheotomy, he has medications. I don't know where to start."
Desperate, she sought out and hired a "geriatric care manager" -- at $125 an hour -- to advise them. Their insurance might still pay for an at-home nurse, she found out, but only if it's a Medicare-approved nurse -- and there aren't any available in the city.
There are home health-care aides, of course, "but they cannot do medical services like giving a shot, taking care of a trach, changing a feeding tube," Sheehy said.
And then there's the quandary of how to pay for a nurse, should one be available. Once private insurance benefits end, the only option for most Americans is Medicaid, which requires that recipients have less than $5,000 in assets.
Her geriatric care manager spelled it out to Sheehy: If the couple first exhausts all their remaining assets, then Medicaid will cover Felker's nursing care.
And if Sheehy, in her late 60s, wasn't willing to give up all her assets and income?
"Then, you need to divorce him," the geriatric care manager told her.
In Sheehy's case, it never came to that. She and Felker scraped together enough money to hire qualified, in-home caregivers via the network of health care helpers known as the "gray market," and Felker's last months were spent at home, relatively serene. He died in July at age 82.
Sheehy called her 15-year journey with Felker through the U.S. health care system a "nightmare," and she wonders how less affluent and well-connected Americans are faring.
"I'm a journalist, I have a lot of contacts, I've worked all my life and done reasonably well. My husband was successful," she said. "But we had a hell of a time trying to maintain some quality of life."
The phenomenon of middle-class, middle-aged Americans stretched to their emotional and financial limits caring for sick spouses or parents is one that's already widespread and likely to get worse, experts say.
The trouble is, "caregivers just feel utterly unprepared for their role," said Carol Raphael, president of the Visiting Nurse Service of New York, who joined Sheehy and other experts at the briefing on eldercare. Many of the family caregivers VNS staffers encounter feel left out of crucial decisions concerning their loved one's care, Raphael said. "They are often on the border -- they aren't even included in thinking about how care will be provided."
Another big challenge -- caregivers are often confronted with an array of doctors, procedures, paperwork and facilities, with no one to help pull it all together. "In the current system, there's no one accountable," Raphael said. "That's why it can cost you $125 an hour [for a geriatric care manager], because you're trying to fill that hole."
Too often, chronically ill patients and their families simply lurch from one crisis to the next, with no continuity of care to make sure that once patients leave the hospital, they aren't getting readmitted a few weeks later.
"Care has to be coordinated and supported," said AARP president Jennie Chin Hansen, who has 40 years of experience as a nurse. "We have to be preventing things from happening, because there are things that we know cause you to go to the hospital again: taking the wrong medications while you're back home, for example." Chin and other experts focused especially on the crucial 30 days after a hospital discharge. Close monitoring and follow-up during that month can greatly reduce unnecessary suffering and cost, they said.
Across America, much of the in-home care that is provided is carried out by home health care aides, who are often woefully under-trained, the experts said.
"They are the glue that is holding the home health care system together," said Raphael. But, she added, she is "shocked" that, in most states, "we have very minimum training requirements for these para-professional workers who are handling very complex cases."
In New York State, for example, home health care workers are required to undergo 120 hours of training before getting certification. That might sound OK, until you realize that nail technicians in California need to have 350 hours of training to be certified to work in a salon, Raphael said.
"The pay scale [for home health aides] is also relatively low, and they don't have health care benefits, on top of that," Chin added.
Wage issues are keeping the number of geriatricians at an all-time low, as well. Geriatricians are crucial, the experts said, because they look not at a particular disease or body site, but at the older person as a whole. However, a recent U.S. Institute of Medicine report found that geriatricians remain the lowest paid medical specialty of all.
Boosting the number of geriatricians, nurses and well-trained home health care aides will be a top priority in easing the eldercare "squeeze," the experts agreed. The same can be said for recent moves by government and medical institutions to cut down on red tape and better coordinate care, especially between the hospital and home.
In the meantime, aging Americans should plan wisely, especially since resources vary widely state by state.
"Friends will call and tell me, 'My mother's moving to South Carolina.' I often tell them 'Well, you better check out what's available,' " said Pat Ford-Roegner, CEO of the American Academy of Nursing. "Ask what services are available for long-term care. But, people just aren't thinking that way."
One good resource: The National Association of Area Agencies on Aging (www.n4a.org), found in every state, can give details on what's available to you locally.
It also pays to think about how you will pay for long-term care, since Medicaid only kicks in after personal finances are exhausted -- something Raphael labeled "a policy of pauperization."
In the end, it will be middle-income Americans who feel the squeeze most, according to Sheehy, who is currently writing a book about her care-giving experience.
"For people who are very wealthy, if the family cares about the loved one, they'll be able to provide this care. And the poor finally get a break, because they can get on Medicaid," she said. "But it's the vast lower-middle to upper-middle class that is really getting the shaft."
There's more on the challenge of caring for the aging, and possible solutions, at the National Institute on Aging.
SOURCES: Oct. 17, 2008, New York City news briefing with Gail Sheehy, journalist; Carol Raphael, M.P.A., president and CEO, Visiting Nurse Service of New York; Jennie Chin Hansen, M.S., R.N., president, AARP, Washington, D.C.; Pat Ford-Roegner, CEO, American Academy of Nursing, Washington, D.C.
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