Mothers and Medical Malpractice – One Woman’s Worst Nightmare

Part One

By: Jean Johnson for Body1

“She was old, I suppose – 87. But she was my mother, and I knew how much she still enjoyed life,” said Helen Jean Brown a writer in Portland, Oregon, speaking under an assumed name to maintain the family’s privacy. “It was just in that last month before everything came crashing down that I hung a world map on the ceiling over her bed. She loved it so much that she had me go out and get one of the United States too. Then whenever someone would come in, she’d point out the maps.

“I think she was proud of them because they symbolized she was still in the know. I tried to tell her, though, that she didn’t need maps to prove her worth to people. She never had turned into a little old lady type, and everyone would tell me how they loved talking to her about politics (that is if they were a liberal who loved Jimmy Carter like she did) and most anything.

“She read through a crate of 30 books from the library every month – and sometimes more, since if she’d run out, I’d go over to our neighborhood library and get a couple armloads – mysteries, biographies, and English history were her mainstays. No cheap romance stuff for her, and she was selective on the mysteries, insisting on quality and taking pure pleasure in a writer’s ability to turn a phrase. She’d even call me at work when she ran across an especially good line.

Take Action

Protect your loved ones from medical errors: Remember that human beings make mistakes. Stay involved in the care of your loved one. If you are unable to accompany them to an appointment, have a back-up person lined up ahead of time. Ask questions about drugs, procedures, and therapies. If something seems strange, don’t be afraid to ask for clarification or request a nurse supervisor or the attending doctor to address your concerns. Accompany family members to appointments and be assertive in stating any concerns. Also empower your loved one to be assertive on their own behalf if and when possible. Try to remember that the patient is the consumer and thereby has a right to know the details of the care physicians are ordering for them. Do not cut corners when if comes to healthcare dollars and decisions. Do your research and get the best care for your needs.

“Not to go on too long, but the reading was only part of it. Even though mom couldn’t walk any more – because of a horrible fall five years ago and a gimpy leg caused by an unsuccessful knee surgery – she still made all kinds of new friends and in some ways had a more active social life than I do,” said Brown, with a wry smile. “Things like becoming friend with the owner (and her daughter and granddaughter that eventually started coming along too) of a pug dog that used to come every two weeks to visit from the Delta Society. The granddaughter was born after they started getting acquainted, so mom followed her growth and took such delight in the baby and her future.

“Also, helping the young kids at the Romanian adult care home where she lived with their homework since their parents were not native English speakers. I’d go in and the 10 year old girl would be perched on the foot of mom’s bed with her homework – or last Christmas with one of the stockings the two of them stuffed for everyone. She sort of adopted the whole family and always had me going out to get birthday cards and wedding presents and baby gifts.

“Mom also took the big print New York Times, U.S. News and World Report and the local paper. She followed golf and the NBA, too, when she had time – not that she had that much, since she helped me get my career going too. I can’t tell you the hours she spent listening to me read drafts of my articles and chapters from whatever book I was working on. She always gave me great comment. She was bright, and had written much of her life herself, publishing a genealogical newsletter after she retired and more recently her college alumni letter twice a year – with her last one just in March 2006.”

Brown acknowledges that even though her mother’s mind and heart were still strong, that her body was increasingly letting her down. “It’s true. She was heavy and didn’t look her best any more. Also, she spent so much time in bed because her neck hurt when she sat up, that her hair got flat on the back of her head. (If there’s one thing I learned from watching my mother grow old, it’s that short, permed hair is not your friend then. My plan is for a long braid,” she chuckles.)

“That’s why I started going with her to her doctor’s appointments. I’d always dress my best to make a good impression so hopefully they wouldn’t treat her like she was out to pasture and instead give her good care.”

But, sadly, Brown’s strategy didn’t work. The physician apparently forgot to consult her mother’s chart before prescribing an antibiotic for a urinary tract infection that the elder woman had a known allergy to.

More egregious, since the drug the medical doctor prescribed had a different name from the original drug that had made Brown’s mother so deathly ill 25 years ago – and the one that was listed on her chart – neither Brown nor her mother caught the error.

“And we would have, believe me. Mother was so sick the first time she took the drug way back when, that she made sure we all knew the name of it and understood that she was never to have it again. It was the same whenever she’d change doctors. She made it very clear that the drug should be listed on her chart and that people understood that she had a clear allergy to it, not just that it made her a little sick or anything.”

Brown exhales a deep breath and lets her head fall to one side. The crow’s feet around her eyes tighten as she recalls the pain of watching her mother go through what could have been prevented if the physician had been alert.

“It was only two or three weeks into the ordeal after mom had been in three emergency rooms, one ICU, and two hospitals that a nurse told us the drug her doctor prescribed was one and the same as the one listed under her allergies on her chart. The look on my mother’s face was a mix of anger and fear. And for me – it was like watching a tidal wave come rolling over her and not being able to do a thing about it. So helpless. Feeling very small in the face of an awesome power.”

It was one long month from the day Brown accompanied her mother to the doctor appointment to the day the elder woman succumbed to the effects of the drug the physician mistakenly prescribed.

“He knew it was his fault,” Brown said. “His call was the first I received the day after Mom passed – saying how sorry he was. How I had every right to be angry, and how if it helped at all to know, he was redoubling his efforts to make sure nothing like this happened to any of his other patients.”

Anger was far from what Brown was feeling on the day of her mother’s death. Instead, grief was her lot. Grief not only from her mother’s demise, but from all the woman went through as the effects of the drug she was allergic to left her increasingly incapacitated.

“I can’t convey how it was, walking into her hospital room on her first stay and seeing her slumped over in bed at 11 in the morning with an untouched breakfast tray in front of her,” said Brown. “I guess there was no one with the time to feed her that day, but it broke my heart because that’s how it is when you get old and sick and aren’t looking your best. It’s so sad. You get neglected right at the time in life when you are the most vulnerable and need someone to have some pity. I think that’s what happened at the doctor’s too. He just didn’t bother over her as much as he could have. I think part of it that oldsters just don’t complain, and so people take advantage of them.”

That was just the beginning of what Brown saw her mother go through in her last month on Earth.

“Well, for one thing, she probably ate the equivalent of two or three meals the entire time – just a bite here or there. I’d make her home-baked custard recipe and bring it in, but even that she couldn’t eat much of. It was the same with homemade noodle soup and Jello that I put pineapple in just the way she liked and the deviled eggs I made using her recipe.

“I was trying to get better quality food for her than what the hospital has, but she simply could not tolerate much of anything. It was the same with water, except worse since she would choke when she drank through a straw on her bad days. We had to give it to her by the spoonful or just feed her ice chips. Her arms were pretty much useless and too weak to hold a cup or manage a spoon. She’d get so thirsty – her cheeks were bright red dots, so much that I spent most of my time keeping a cool cloth on her forehead.”

There was delirium and disquietude as well.

“That was the worst. I’d go in and she’d be in and out consciousness, the whole time moving her arms and talking in this plaintive voice. I don’t remember her words if they even made sense, but she was distraught and frenetic. Nervous and high key, like taking the feeling of being worried and blowing it up so large that it becomes too much to manage. I think that’s why she was delirious. Her mind just couldn’t deal with reality any more.”

Brown later found out that the drug her mother had the known allergy to had destroyed the lining of her lungs. Consequently carbon dioxide was building up in her bloodstream, a situation that the nurses told Brown can make patients agitated.

“But that was part of the problem. At first they didn’t realize that her breathing problems were related to the drug reaction. It took them over a week, I think, to figure it out, and at one point near the end I even signed for this painful spinal test so they could rule something or other out. Thank heavens she never had to go through that. The next day the respiratory part of the medical team that was on her case finally did enough research on the drug to discover that it can send the lungs south – and was the cause of mom’s problems.

“But they said the effects of the drug were reversible if she could just get over this bad hump. So they put her on what they called a bi-pap breathing machine. It wasn’t a respirator – nothing invasive like that. But it was close to being as horrible. It’s a mask that seals over your nose and mouth with two big straps that fit around your head. You can’t talk on it, of course, and it was very hard for mom to deal it since it pushes big volumes of air into your lungs.

“She was a trooper and wore it for hours at time, even after it wore a blister in the bridge of her nose that eventually broke open and bled. They put something on it, but I could tell it still hurt her, because her hand would go up to try and brush the mask away. One night she had it on all night – and all the next day until the afternoon until they said she could have a break. It really was a nightmare watching her go through that.

“I made sure she got to take it off when someone came to visit if I was there, though. That worked out OK, but when people phoned, it was still hard even if the ‘box’ as she called the breathing machine, was off, because they had her on 25 liters of oxygen and so she couldn’t hear very well over the phone. The whole thing was pretty tortuous now that I reflect back.”

Why did Brown let her mother go through all that?

“That’s the thing. You never know what to say because there’s always the chance they can get better. I’d ask her and they would too. We all were respectful of her wishes. But she didn’t know what to say either. If there was a chance, why of course she wanted to live.”

Finally nature made the decision that Brown and her mother were unable to make. Falling blood pressure and rising carbon dioxide levels marked an end to the breathing treatments and morphine was prescribed to ease the final hours.

Going through my mother’s photographs to make a DVD of her life for her memorial occupied the first days after her passing while everyone traveled in for the gathering. Then there was her obituary to write and thank you’s and more phone calls. Now, Brown’s time is spent gathering documents and writing up a chronology for the attorney who has taken the case.

“Those were her wishes – that I see an attorney. She felt so betrayed – and I felt so very sad that it had to happen to her,” Brown said, pressing her lips together as her eyes filled. “I’m sorry, but to have her go through that... I know that doctors are just human too, but to place such trust in them only to have one actually give you something that kills you. It’s the worst. You don’t want to be bitter or lose faith, but it’s hard. She was my mother...”

Body1 thanks Helen Jean Brown for sharing her story – for putting a personal face on the issue of medical malpractice. In the second part of this article, we will explore the topic of medical malpractice generally, offering current statistics, trends and debates.

Continued in Part Two

Last updated: 05-Sep-06