Squeaky Wheel Gets Better Care

Dorothy Clough has her granddaughter to thank for where she is today--at home.

Involuntarily summoned to duty when the 88-year-old Clough fell, breaking one foot and severely injuring the other, Lin Coppen became an unwitting Florence Nightingale. Like many family members thrust into the health-care arena when a loved one becomes ill, the 46-year-old Newbury Park resident quickly saw that she could do a lot more than sit at the bedside wringing her hands.

“This is a typical case where a family member made the difference between a patient going home safely and going to a nursing home, which would have devastated this woman,” said Dr. Alan Seizer, Clough’s physician at Glendale Adventist Medical Center.

Coppen not only persuaded a resistant Clough to stay in the hospital and get the care she needed--something neither her doctor nor social worker could do--but she also made the stay more comfortable, eased her grandmother’s concerns and worked with the staff. She told the nurses about her grandmother’s compromised bladder, so they would respond quickly when she needed to go to the bathroom. She brought in food from outside that she knew would appeal to Grandma.

As managed care forces shorter hospital stays and smaller staffs, family members need to take an even more active role in their loved one’s hospitalization. Many do not, however, because they feel intimidated or don’t want to be labeled a troublemaker and have their loved one suffer retribution.

But according to the experts, forthright patients, and by extension those with forthright families, fare better. They tend to spend less time in the hospital and recover more quickly.

“Persistence does pay,” says Eldon Teper, chief operating officer for Country Villa, which operates 14 residential care facilities in California. “An assertive family member who’s willing to participate will promote a higher level of recuperation.”

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If aptly applied assertiveness pays off, timid compliance may be rewarded only with less prompt and less vigilant care.

“If you ask questions, they want you out faster,” says Beata Lundeen, who has worked in health care nearly 30 years as a nurse, administrator and consultant.

Furthermore, said one physician who asked not to be named, “When people can’t advocate for themselves, they don’t always get the care they’re entitled to. That’s why it’s important for disabled patients to have a competent advocate.”

Dr. Paul VanOstenberg, director of standards for the Joint Commission on Accreditation of Hospitals in Illinois, won’t go so far as to say that such advocacy changes the outcome of care, but he concedes: “What family advocacy does do is improve the whole care experience. It shortens the care process and improves the patient’s sense of quality, well-being and safety.”

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The first thing a family member can do is become informed, says Encino pediatrician Dr. Howard Reinstein, also a spokesman for the American Academy of Pediatrics.

“Know who’s involved in the care and their roles,” he says. “Know the routine, the estimated length of stay, the treatment plan, the different medications, what they’re for and their side effects. Then ask what you can do to help.”

Lin Coppen, for example, asked the physical therapist to teach her the exercises he was doing with her grandmother, so she could provide extra therapy.

Family members can also ask to learn how to change a dressing, which might shave a day or two off the hospital stay. Going home sooner can be a plus, when you realize that one in 10 patients goes home with a hospital-acquired infection.

Attentive family members can also help avert medication mishaps, which studies show happen between 2% and 11% of the time, depending on the hospital.

“Providers not uncommonly either give the wrong dose, or give medications at the wrong time or to the wrong patient,” says VanOstenberg, who recommends asking the nurse what medication she’s giving. “If it doesn’t jibe with your expectation, question it. If it is a medication you haven’t heard your loved one receive before, ask who ordered it. If the nurse doesn’t know, send her back to the chart to verify.”

“You have to have some faith,” adds Reinstein, “but if every day you see your daughter get a blue pill, then one day it’s red, ask if it’s right--before it’s given.”

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Also speak up if care isn’t consistent with your understanding of the patient’s condition.

“If your loved one is diabetic and sugar shows up on the lunch tray, holler,” Teper says.

“Don’t worry that you’re being a pain,” Lundeen says. “They’re trained to deal with people like you. They are used to sleep-deprived, crazed, beside-themselves family members. Offending them should be your least concern.”

The complaint chain goes like this:

Start with your loved one’s nurse. If he or she can’t or won’t help, talk to the doctor or nurse in charge.

If the result still isn’t satisfactory, go to the nurse manager, or ask for the hospital’s patient representative or ombudsman.

You may also air grievances with the complaint department at your HMO.

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If you still don’t feel satisfied, and you feel the situation is compromising the quality of care or is life-threatening, call the Department of Health Services.

“Every hospital and nursing home should have a readily available mechanism in place to resolve problems. That’s a sign of a good organization,” VanOstenberg says. “It’s rare to have to go outside the system.”

Besides perfecting the art of assertion, here are other tips experts suggest that family members can use:

* Stay with your loved one as much as possible, and when you can’t, arrange for someone else to cover.

* Don’t let intimidation keep you from asking questions.

* Get your own support system in place.

* Find someone who works in the hospital that you connect with and make them your point person.

* Have a pencil and pad at hand to write things down, if for no other reason than to let the staff know you’re paying attention.

* Note people’s names.

* Keep a journal. Write down what the doctor says on his visits and review it with the patient to help him or her process the information. Also track high-charge items--who performed them and when--to see if they concur with the ultimate bill. (According to a 1991 survey, 95% of hospital bills contain errors.)

* Verify that everyone who provides service is providing the right service for the right patient.

* If a scheduled therapy isn’t showing up, ask the nurse to contact the department. Don’t assume they have it covered.

* When a therapy is in progress, ask what you can learn to reinforce treatments.

* Bring in pictures of your loved one; it helps to humanize the patient for the staff.

* Share tips with the staff on your loved one’s needs and preferences to make care better and more comfortable. Express the person’s food preferences.

* Bring in decent food from outside.

* Get some sleep.