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HEALTH CARE COMES HOME:
A special report.; Families Provide Medical Care, Tubes and All
June 7, 1998

The New York Times

By Ian Fisher

Dorothy Knight has dressed up her son's ventilator with three Mickey Mouse stickers, but there is no hiding the hospital in her house. A tank of oxygen sits by the crib, a few feet from the machine that tracks 2-year-old Jimmy's heart rate and blood oxygen while he sleeps.

She is casual about her dual role as mother and nurse, yet it is still unsettling when she flips on a little electric pump -- dug out from a pile of toys -- sticks a catheter through the tracheotomy tube in Jimmy's throat, then suctions out the excess mucus.

"We do it in the middle of the mall," said Ms. Knight, who lives with her husband, another son and a daughter in Hicksville, on Long Island.

It is a noble and almost old-fashioned notion that families like the Knights would care for their son, whose brain does not emit the signals for him to breathe properly while he sleeps, at home. They would have it no other way.

But like millions of families across the nation, the Knights find themselves in the midst of what many experts say is a fundamental shift in health care: families are performing an unprecedented amount of technical medical care in their homes, much of which would once have been provided by doctors or nurses alone. And while that shift can be beneficial for both patients and family, it has placed a growing burden on family members, whose traditional role has been much more oriented toward providing comfort than actual care.

The causes are many, even if the effects or any concrete idea of what to do about them remain largely unexplored. Technology has made even complicated treatments possible at home, from dialysis to chemotherapy to intravenous feeding or antibiotics. People are living longer and can require years of care in their homes, often from adult children with jobs and children of their own.

And in this age of managed care, the intense pressure to reduce health care costs has reduced the number of people admitted to hospitals and shortened hospital stays, which means more care is being administered by family members who are unpaid and, in many cases, untrained and unprepared for what is newly expected of them.

Ms. Knight lists her own troubles: a shortage of money and sleep, worry over endlessly beeping equipment, battles with insurance companies and a marriage that, she says flatly, has been worn to the edge of divorce.

"It's a quantum leap for the responsibilities of families," said Carol Levine, a medical ethicist in New York City who recently completed one of the few comprehensive studies of family caregiving through the United Hospital Fund. "It's not just that you are asked to do a little bit more. It's a whole different set of responsibilities."

Ms. Levine knows her subject well. In January 1990, she and her husband, Howard, then 61, were in a car accident in upstate New York that left him largely paralyzed and with severe brain damage. As she worked to reconstruct their lives, she became overwhelmed by practicalities, from ordering supplies -- which often involved battles with bureaucracy -- to finding a new apartment and renovating it to accommodate a wheelchair. She also struggled with her metamorphosis from wife to home nurse, with little help from doctors, insurance companies or the government.

"There was something basic not happening here, and I couldn't believe I was the only one who felt that way," she said.

Ms. Levine's contention -- echoed by a rising chorus of voices in business, medicine and academics -- is that the role of family caregivers has been largely dismissed as one that families are expected to undertake, willingly and lovingly.

But, she maintains, the entire spectrum of caregiving -- from specialized technical care to the grueling and emotional haul of caring for a chronically ill relative -- needs to be re-evaluated. For years, the growing elderly population and the shrinking number of people in nursing homes have implied a greater responsibility on the part of family members, even as changes in Medicare and Medicaid and financial controls by managed care companies have made it harder to get professional care in the home.

The health care system, though, has not fully adjusted to the growing role of families, she says. And she contends that if the health care system benefits financially from the shift, it also has a new obligation to pay greater attention to family caregivers, at least through better training and more respect for their work.

To the small extent that caregiving has been discussed by politicians, many policy makers have been reluctant to take on the possibility of more direct help -- like tax credits -- which they see as a hugely expensive undertaking.

But the issue is being tackled piecemeal around the country: employers are beginning to offer more flexible schedules; medical schools are rotating residents through homes; hospitals are increasingly training families for their duties after patients are discharged; states like California and Pennsylvania have established programs -- debated in Washington but never passed -- for "respite care," or a sporadic few hours of paid home nursing to give families a rest.

And many experts say the needs will only grow in the coming years, as technology becomes ever more sophisticated and the baby boomers age, with demographically fewer of their own children to care for them.

"Wait till they get old," said James B. Weil, a vice president at Metropolitan Life, who has studied the economic impact of caregiving on business. "We haven't seen anything yet."

The Shift Home
Numerous Factors Help Trend Take Off

The move toward care at home has been building for many years, but a pivotal moment came in 1981, when President Ronald Reagan singled out a 3-year-old girl from Iowa, Katie Beckett, at a news conference. Mr. Reagan railed against Medicaid regulations that had kept Katie, who suffered from viral encephalitis, in a hospital, at a cost of $12,000 a month, rather than allow her to be cared for at home, where it would cost $4,000 or less.

Since then, the entire medical system has reoriented itself, through changes in Government rules, advances in medical machinery and family members who have demanded that their ill loved ones be cared for at home. More recently, managed care companies and hospitals conscious of the bottom line have weighed in, pushing to get patients home quicker and, many critics contend, sicker.

The result has been an explosion in family caregiving, which involves large commitments of time, for a range of chores from cooking and cleaning to more burdensome and complicated medical routines.

Last June, a poll by the National Alliance for Caregiving, a consortium of advocacy groups for the elderly, based in Washington, found that the number of people providing free care to a family member or friend grew to 21 million, up from 7 million in 1987. (That increase is considerably above the 21 percent rise in the population of people over 65 in the same period.)

The study showed that 72 percent of caregivers are women -- in Washington, caregiving is often tagged as a "woman's issue" -- and that more people are caring for relatives who do not live with them.

Few people, from family members to doctors and insurers, question that this shift has been largely for the good. Experts say there are few horror stories of people dying or becoming much sicker as a result of their care at home.

But advocates for sick people say managed care companies often turn down patients for paid home nursing, and increasingly expect family members to provide care, even in cases where family members are incapable because, for example, they live too far away or have substance abuse problems.

"What they are asking is, when do you want to take your child home, rather than, do you want to take your child home or are you able to take your child home?" said Dr. Arthur F. Kohrman, a Chicago pediatrician who has written extensively on the difficulties of caring for sick children dependent on technology. "Parents who feel they can't accomplish it, it puts them in the position of immediately being inadequate or being seen as uncaring parents."

"But," he added, "we are asking them to care way beyond the normal evidence of what a caring parent is."

And, in fact, one of the many difficulties of family caregiving is a confusing shift in family roles: children must baby their grown parents. Parents, in a wrenching exaggeration of the conflicts of normal parental roles, must at times inflict the pain and discomfort of medical procedures on the very same children they must also comfort and calm.

In an extreme example, Regina Cunningham, 41, of Lynbrook, N.Y., considered herself squeamish before her daughter, Katie, was born with intestines that did not function properly, ultimately requiring a transplant. But over the years, Ms. Cunningham has tended to drains in her daughter's stomach; wrestled with tubes in her chest and with pumps for food or antibiotics; and learned to spot infection before doctors did.

Katie, now 9, seemed perfectly healthy on a recent evening as she played with two friends and showed off her headstands. But Ms. Cunningham still must insert a catheter into Katie's bladder three times a day -- and she remains angry at what she feels was inadequate training from doctors, and is exhausted from duties that have left her with chronic back problems.

"It was very stressful," she said. "Was I doing the right thing? I really wasn't an expert. Was I doing everything that she needed?"

The Daily Routine
Caregivers Contend With Many Machines

Phyllis Kaufman of Brooklyn said she, too, has had a hard time caring for her husband Jack, 70, a survivor of Auschwitz who came to New York, married her and opened a kosher butcher shop. After his second stroke in 1995, he had a feeding tube implanted in his stomach, and the machine only added to his wife's heartbreak.

Mrs. Kaufman said a nurse spent less than five minutes showing her how to use the machine in the hospital, then a home nurse tried again after her husband's discharge. But she could not make sense of exactly what she had to do, even though she was acutely aware that her husband's survival depended on it.

"You understand, I'm 64 years old," Mrs. Kaufman said. "In my time, I've never learned anything about computers. And all these buttons?

"I was terrified. Then it beeps. It makes noise. Every time it beeps, I curse the machine. I'm afraid of it. Little by little, the machine broke. Then they brought in a second one, in a different style. And I cursed that one, too.

"The second machine lasted a little longer. And the second one broke. Then they brought me the third machine."

Fortunately, she has not had to contend with a fourth. "By that time, maybe, I was a little more experienced," added Mrs. Kaufman, who later started a support group through Well Spouse, an organization for husbands and wives of the chronically ill.

Still, Mrs. Kaufman said she could never put her husband in a nursing home, and as trying as the situation is, she said it is better to have him home. Because of the advantages patients have at home -- in familiar surroundings, away from the sterile atmosphere and risk of infection in hospitals -- many cases of caregiving prove much more joyous than painful, even if families are providing care in a way that would have been unheard-of only a few years ago.

Randi Rosenberg, a 32-year-old executive in Manhattan, was recently given a diagnosis of early-stage breast cancer and underwent a lumpectomy at Beth Israel Medical Center. She was sent home the same day, by a surgeon who began advocating for same-day release on therapeutic grounds long before managed care.

As a result, her partner, Andrew Gardner, 39, was expected to collect the fluids from the drain in her wound, something rarely required of families several years ago.

"It wasn't particularly hard," said Mr. Gardner, a systems analyst who praised the hospital training. "It was a little gross."

Ms. Rosenberg said she was grateful to be able to recuperate at home, where she was visited by friends and could lounge on the roof deck of her apartment building.

"I'd rather be here than in the hospital," she said. "Your environment plays a big part in your recovery."

Gail and David Loomar of Yardley, Pa., find the push toward care in the home, which in their case requires a high level of technology, liberating. They also underscore why care at home can be easier for some: the young, people comfortable with technology or those who already have some connection with the medical system.

In 1996, Ms. Loomar, 57, was given a diagnosis of colon cancer. She now receives two types of chemotherapy, which are administered at home rather than at the hospital, where she would have had to spend hours on successive days for treatment. In one , the drugs are fed to her liver through a pump the size of a hockey puck implanted in her abdomen. In the second, the drugs are fed through a tube implanted below her left collarbone that hooks up to an external pump, which she wears in a fanny pack.

There is no maintenance for the implanted pump. But at the end of each cycle of medication, her husband, 63, who is a dentist and is accustomed to medical equipment, tends to the portable pump. Pulling the equipment from an Eddie Bauer shopping bag, he closes off the pump and flushes the tubes with a saline solution, then with an anticoagulant. With that, his duties are finished until the next round of chemotherapy.

"I say, thank God," Ms. Loomar said.

"And I go to work," Dr. Loomar said. "That's the extent of my caregiving."

The Future Course
Small Incentives, Not Big Programs

It is a sign of the times that even the strongest advocates for helping caregivers talk little about ambitious programs like tax credits, more government home care or even some direct payments to families. This is true, even as some of the same experts theorize a return to greater -- and costly -- institutionalization, if the burdens on families grow too heavy as the elderly population increases.

"I wouldn't want this debate to be a debate about something that requires a major new cash infusion from the system," said James R. Tallon Jr., president of the United Hospital Fund. "That distracts people from what could be very positive steps that are well within the purview of people delivering services, people financing services, to make incremental, important changes."

Ms. Levine, Mr. Weil of Metropolitan Life, and others say those small initiatives could overcome many of the problems: better training in hospitals for caregivers; more flexibility from employers; a greater recognition from doctors and hospitals that families are a central part of a patient's care.

Already, there have been small steps: in 1993, the Family and Medical Leave Act allowed millions of employees to take up to 12 weeks unpaid leave a year. Mr. Weil has been working to persuade employers to help their workers who are caregivers. The goal is to stem the huge cost to business -- about $12 billion a year, according to a Metlife study -- through caregivers who arrive late, leave early or are too exhausted to focus on work.

On the theory that policy makers cannot focus on anything without a price tag, Ms. Levine's study estimated the economic value of caregiving, with numbers from Peter S. Arno, an economist at Montefiore Medical Center in the Bronx. Using three national studies showing the number of caregivers to adults between 23.6 million people and 27.4 million, Ms. Levine and Mr. Arno estimated the economic value of caregiving to be between $113 billion and $286 billion a year.

In comparison, total expenditures for paid home care are $30 billion a year. Nursing home care costs $79 billion a year.

At a minimum, Ms. Levine says, the numbers are big enough to prompt a deeper look at caregiving. "It's a tremendously isolating existence," she said. "And in terms of the health care system, there is a void."

GRAPHIC: Photos: Two-year-old Jimmy Knight has a condition in which his brain does not emit the right signals for him to breathe properly. His mother cares for him at home and uses a pump and a tracheotomy tube to suction out excess mucus from his throat. Katie Cunningham needs a catheter three times a day, after an intestinal transplant. (Photographs by Edward Keating/The New York Times)(pg. 30)