Tough medical tasks fall to families

  1. By John Keilman
    Tribune staff reporter

    November 26, 2002

    Carina Borst isn't a nurse, but you'd never know it watching her clinical detachment as she vacuums fluids from the hole in her 1-year-old son's throat, or monitors his blood oxygen level, or medicates him through the tube in his stomach.

    If Borst, 32, were paid to do these things, she would need a nursing license. But because she is Zachary's mother, she's allowed to give him this medical care at home, with or without training. In fact, she has little choice.

    While her son is supposed to get 16 hours of nursing care a day paid for by the state, a nursing shortage means he's lucky to get eight. Consequently, said Borst, who lives in the northwest suburbs, "most of the time, it's just all me."

    Borst is among the growing number of ordinary people who provide sophisticated medical care for their loved ones at home. As hospital stays grow shorter, insurers stingier and visiting nurses scarcer, relatives find themselves giving injections, maintaining intravenous lines and operating dialysis machines.

    For some, it's a positive trend, giving them more control over medical care and keeping their loved ones out of hospitals and nursing homes.

    Others, though, feel overwhelmed by the responsibility, which they say is thrust upon them without adequate preparation or support.

    "It's scary having to do it yourself," said Jennifer Rembrecht, 40, of Naperville, whose son, Jake, 3, breathes through a tube in his throat and eats through a tube in his stomach. She received informal hospital training on how to manage the equipment but said it was "definitely above my level for the first year."

    And because mistakes are likely to go undetected and unreported, nobody is certain how this has affected the quality of medical care for patients who are dependent on family members.

    Families have always played a crucial role in taking care of relatives. What's changing, experts say, is that these caregivers are performing more and more medical duties once handled by skilled professionals.

    "You had the managed care revolution, kicking people out of hospitals quicker and sicker, and at the same time you had people designing nifty gadgets to allow those people to get high-tech medical care at home," said John D. Arras, a University of Virginia biomedical ethics professor who has studied the phenomenon.

    "Treatments that would have been available previously only in intensive care units were finding their way into people's living rooms," he said, citing the operation of complicated equipment such as ventilators, infusion pumps, computerized feeding tubes and dialysis machines.

    Fewer professionals

    But the number of professionals trained to offer those treatments in the home has been shrinking. As Medicare, Medicaid and private insurers cut back on what they'll cover and how much they'll pay, visiting nurses are in short supply.

    "We had 14,000 home health agencies in 1997. We're now down to 7,000 or so," said Carolyn Markey, president of the Visiting Nurse Associations of America.

    So medical duties are falling to family.

    In Illinois, as in other states, laws prohibiting the practice of nursing without a license do not apply to family members. In fact, no law requires that family members be trained at all.

    A 1998 national survey of 1,000 family caregivers by the United Hospital Fund of New York found that one-third of those who changed bandages or used medical equipment received no instruction.

    When training does take place, it is often inadequate, the fund's Carol Levine said.

    "Family members are really put in a terrible situation, with a half-hour training in the hospital, maybe, and a 1-800 number to call, which is practically of no use, and you're on your own," she said.

    Home care does not have to be high-tech to induce high stress in loved ones. Diane Lawson of Des Plaines said she spent five months this year dressing sores on the feet of her 80-year-old mother, a chore handled primarily by visiting nurses until Medicare slashed their visits.

    Lawson never received formal instruction, and the task proved trickier than she expected. She had to wash her hands before putting on gloves, rub salve on the wounds, prevent the bandages from touching non-sterile surfaces and change gloves as she moved from one foot to the other. It came to be a juggling act done twice a day.

    "I guess I would have rather had someone talk me through it, because I was very klutzy with the bandages," she said. "[The nurses] had their little tricks, and I didn't catch onto them."

    The sores eventually became infected, Lawson said, and she wonders whether she might have been responsible.

    Some agencies are more systematic about training family members.

    Linnea Windel, chief executive officer of the Visiting Nurse Association of Fox Valley in Aurora, said that as her nurses demonstrate procedures, they use a checklist to ensure the caregiver is following each step. Training can take several visits, she said, and nurses judge the family member's competence.

    "There have been situations where we have said this family is not capable of doing a procedure," Windel said.

    In that case, the agency will assign a nurse to handle the job even if the insurance company refuses to pay for it, she said.

    That gray area has led to tactical maneuvering by some caregivers. Marty Beilin of the Well Spouse Foundation, which runs support groups for caregivers, said the organization warns its members about allowing themselves to be trained for medical procedures they don't feel comfortable performing.

    "Once the insurance company feels that you can do this, then they take it off the list of skilled care needs," he said. "If I can give an injection, they will not pay for a nurse to come once a week to give the injection. If I had said I can't give the injection because I have severe arthritis in my hands, or whatever, then [my wife] would be entitled to receive the injection in other ways that would be compensated by insurance."

    Quality in question

    One unanswered question as family members perform more medical duties is how this has affected quality of care. Lenard Kaye, director of the University of Maine's Center on Aging, said it's hard to measure because mistakes are unlikely to be detected.

    While many family caregivers say their devoted attention more than makes up for a lack of experience, some evidence suggests problems exist. The United Hospital Fund survey found that 1 in 8 caregivers who administered a loved one's medication was aware of making a mistake.

    The federal government in 2000 issued a $141 million grant to help caregivers, and Joseph Lugo, planning specialist for the Illinois Department on Aging, said some of that money is paying for hands-on training programs, including medication management.

    But some say far more help is needed for family members increasingly expected to do more on the medical front lines.

    "Nobody really thought through what that meant for the family member," Levine said. "People can learn how to do things, but I often wonder if you don't speak English, or you haven't had some sort of education in computers or how machines work, how do you manage? I really, really worry about people."
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