When Mom or Dad Head to the Hospital, Be Prepared To Be An Advocate

If you're a sick patient and you don't have an advocate for your care -- a squeaky wheel who will interrogate nurses and seek out doctors to get the story -- you're at a huge disadvantage.
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My father was recently admitted to the hospital, one of his many visits in recent years to address his failing health. This time it was pneumonia, an infection he sustained after spending hours in the same hospital to get stitches when he fell off his bed and cut his scalp. My mother was with him, as always, as was my sister, who lives nearby. This journey through the maze of the medical care system was among the worst I've encountered at a hospital considered to be top-rate. It has demonstrated to me that, as many aging boomers begin to crowd hospital rooms in the coming years, we have much to fear.

My father is nearly 80 and has a host of chronic conditions including failing kidneys, high blood pressure, asthma and slight dementia -- which worsened throughout his hospital stay. A former college professor, it's been devastating for all of us to see his smart mind and quick wit gradually slip away. Now, like so many of us grappling with elderly aging relatives, we just want the best care for him, and he's hardly in a position to supervise it. So we spent the days taking turns, my mother, my sister and I, making sure he's getting everything he needs from the hospital staff. That includes even the simplest task that's rarely executed unless we push for it: getting him out of the bed into a chair, so he doesn't become immobile. The three of us pepper the nurse on call with questions. We saw the doctor only on the second day. His regular doctor, who made a visit only at our request, said he was in bad shape and likely wouldn't be able to fight the pneumonia. That was all we were told. But a day later, he rebounded. Unable to reach the hospital doctor in charge of his care, the nurse told us his pneumonia was gone, but he was scheduled for an MRI of his brain. When we asked whether it was needed, she said she didn't know. She insisted, after our probing, that the procedure was no big deal. She walked away in a huff, clearly irritated that we troubled her with so many inquiries.

Four days into his stay, we still hadn't been briefed from the doctor on his condition, and when my father would be leaving the hospital. After several phone calls, the doctor finally agreed to meet with us. He said the MRI was ordered to determine whether my father had a stroke. We asked why he needed to know this and how it would affect his treatment. He said it was just to rule it out. We asked if it was an invasive procedure. Countering the nurse's assertions, he said that sticking my father through a dark tunnel could, indeed, be traumatic for him. We insisted he not have it, but had we not spoken up, he would have had to undergo the test. The doctor informed us he was discharging my father the next day, even though we hadn't yet found a rehabilitation facility for him, which was essential since, in his weak state, my mother could not initially care for him.

After my mother's mad dash to rehab facilities, she settled on one. She was told by the hospital nurse the next morning that he was declined care there. Evidently in the middle of the night my father was behaving erratically and the nurse immediately administered an anti-psychotic drug. The facility denied him care because the hospital disclosed this and the facility staff wrongly presumed he had psychological problems. My mother eventually found another place, but they wouldn't transfer my father without insurance approval. For the next three days, while my father sat in a hospital bed next to someone with a raging fever, at risk for more hospital-induced infections, the insurance company dragged its feet, failing to respond to the hospital. It wasn't until, at my urging, my mother called the insurance company directly that they decided to act.

He's now just been transferred to the rehab facility and so far, it's no better. To ensure high quality care, "you just need to be there all the time," said one of my mother's dear friends who just lost her husband to Alzheimer's. I know so many others facing this type of situation with their parents. It's clear that, if you're a sick patient and you don't have an advocate for your care -- a squeaky wheel who will interrogate nurses and seek out doctors to get the story -- you're at a huge disadvantage. Even in the best hospitals, with the most advanced array of treatments, we have so far to go.

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