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Five must-do's when a loved one is ill

  • Story Highlights
  • Advocates can help make sure patients get proper care
  • Don't be afraid to intervene and ask questions, families say
  • Make sure you understand what doctors are saying
  • Nurses also can be a great asset for patients
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By Elizabeth Cohen
CNN
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(CNN) -- One day in the hospital, Vladimir Atryzek overheard a nurse mention that his daughter, Molly, needed to have some bone marrow extracted. The nurse said she would be preparing Molly immediately for the potentially painful procedure.

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Don't be afraid to ruffle a few feathers and speak up for a sick loved one, one advocate says.

There was just one problem. Atryzek knew Molly didn't need to have her bone marrow taken; she'd just had it done recently. So for what wasn't the first time -- and wouldn't be the last -- Atryzek stepped in as an advocate for his daughter.

"I told the nurse we weren't doing bone marrow today, and she pointed to the chart and said, 'No, it says right here we're doing bone marrow,' " recalled Atryzek, whose 17-year-old daughter is in a hospital in Boston, Massachusetts, fighting leukemia. "I asked the nurse to check it, and she came back and said, 'Oh, you're right, no bone marrow.' "

Atryzek and his wife, Suzanne, said in the year since Molly's leukemia diagnosis that they've learned much about how crucial it is to speak up for someone who's too sick to advocate for him or herself.

Here, according to the Atryzeks and others who've been there, are ways to fight for a sick loved one:

Rule No. 1: Don't be afraid to intervene

In addition to the bone marrow incident, Suzanne Atryzek said she had to intervene this week when a nurse was preparing to remove a chest tube from Molly, who's recovering from pneumocystis pneumonia.

She said the doctor and nurse didn't want to sedate Molly for the procedure, even though she had been for similar procedures.

"I told them eight times, 'No, no, no, no, she needs to be sedated,' " Atryzek said. After about 30 minutes of arguing, she said, they agreed to sedate Molly.

Rule No. 2: Ask questions until you understand the answer

"Don't leave the room -- or let the doctor leave the room -- until you understand what he's just told you," said Betty Garrett, whose husband suffered from esophageal cancer for a year and a half before dying of the disease.

"One day, the gastroenterologist walked into Gene's hospital room and said, 'Look, here's what's happening,' and he said, 'Yada, yada, yada,' and went way up in the clouds,'" Garrett recalled. "And then he looked at me and said, 'Do you have any questions?' and I said, 'Yes. What did you just say? I don't have a Ph.D.' "

Garrett said she knows she annoyed some doctors with her questions, but she never backed down. When one doctor walked out the door without answering questions to her satisfaction, she followed him into the hallway and kept asking.

Rule No. 3: Remember that you know things the doctors don't

Vicki Rackner, a surgeon and patient advocate, said she's noticed patients often will tell a loved one something they won't tell a doctor -- because it's embarrassing or because they don't want to bother the physician.

"Keep your loved one honest," Rackner said. "Make sure they tell the doctor everything."

Rule No. 4: Temper your loved one's enthusiasm for quick fixes

When Dr. Jerome Groopman had debilitating pain and swelling in his wrist, a world-renowned hand surgeon told him he wasn't sure what was wrong.

"He told me, 'I'll open you up and figure it out when I get in there,' " said Groopman, a professor at Harvard Medical School and author of "How Doctors Think."

Groopman said he was so desperate he was ready to go with the surgeon's plan. But his wife, Pam, told him no way. "She said, 'Regardless of his reputation, he's not just going to go in there blindly.' "

Groopman said his wife turned out to be right.

Rule No. 5: Scope out the nurses

Suzanne Atryzek said it's crucial to befriend the smartest, most helpful nurses early on. "Nurses will guide you," she said. "Nurses are where it's at."

Atryzek said late one night, a doctor came into her daughter's room and reported that recent blood test results could mean Molly's cancer was getting worse. Atryzek said she broke down in tears.

"But then I went and found a wonderful, smart, smart nurse and got her to explain it to me," she said. The nurse reassured her and the next morning, the doctor confirmed that the tests were not bad news.

Of course, with all this advocating, it's possible to get on the wrong side of the hospital staff. Atryzek said she periodically checks in with the nurses -- and so far, so good. "They said, 'They're not talking about you in the lunchroom yet, and believe me, they talk about parents in the lunchroom.' "

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Another tactic:gifts.

"It doesn't hurt to take candy to the nurses," Garrett said. "Call it a bribe if you want to, but they're human beings. If you bring them candy, it may help them do something extra for your loved one." E-mail to a friend E-mail to a friend

CNN's Jennifer Pifer and Georgiann Caruso contributed to this report.

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