Once upon a time, the ER missed a pelvic fracture in one of my elderly patients.
Actually, this kind of thing has happened more than once, and perhaps it’s happened to your family too.
As much as we’d like to believe that our older loved ones will get the right care when they are sick or injured, the truth is that our healthcare system is imperfect, and it’s fairly common for serious problems to be missed.
Unless, of course, a proactive family caregiver knows to help the doctor focus on what’s newly wrong.
The story below was first published on Caring.com’s Older Patients Wiser Care Blog in 2009. It’s a true story (although I did change a few details to protect my patient’s privacy) about why it’s important that you help doctors spot any changes in function or ability.
In this story, I explain why geriatricians pay attention to “changes in function” and why busy doctors often forget to ask about this. And the post ends with tips to help you minimize the chance that an important illness or injury will be missed in your loved one.
Hope you find this helpful!
The case: An ER mystery
My patient with dementia, 85-year-old Mr. C., sat down short of his easy chair at home and fell. Within minutes, his daughter found him on the floor. She helped him to the chair, and they watched some TV. But half an hour later, he was unable to get up again and walk. She took him to the emergency room for evaluation.
“I’m fine. Nothing hurts,” Mr. C. told the busy ER staff more than once. “I just want to go home.” X-rays of his hips and pelvis revealed nothing, and so — after an exam that probably lasted only a minute or two — he was discharged.
Back home, however, he still couldn’t walk. He still insisted nothing hurt. “I’m a tough old bird,” he told his daughter. Later that night, though, she noticed that he grimaced every time he rolled over in bed. She knew something was wrong. But what?
The challenge: A problem overlooked
There are few things more frustrating than bringing your loved one to see doctors when you know something’s wrong, only to be told, “Everything’s fine.”
Often everything is fine, thank goodness. But sometimes an important problem gets overlooked. Unfortunately one group — frail older people with Alzheimer’s or another dementia — is especially likely to be dismissed as “okay” when they’re not.
Why? Because people with dementia aren’t accurate self-reporters, and their caregivers often inadvertently neglect to report information about their status in a way that most health care providers understand.
The solution: Know what to look for — and what to say
The good news is that by understanding a key concept in geriatric care, a proactive caregiver can dramatically improve the odds of getting the right answers when bringing someone with dementia to urgent care or the emergency room.
The key concept is this: Changes in mental or physical function are critically important. Be sure to mention them — because they almost always deserve further evaluation.
Example 1: Let’s say your elderly mother with dementia is usually forgetful and confused about the month but consistently recognizes familiar people. If one day she’s much more confused than usual — not even recognizing the faces she sees every day — that’s a change in mental function. It could represent delirium (a sudden state of mental confusion and changes in brain function that can have many different causes) and should be brought to the attention of a medical professional. Urinary tract infections, for instance, often cause delirium in older people.
Example 2: You’re caring for an elderly father with Parkinson’s who’s often a bit confused and unsteady. If he’s normally able to walk but, after a fall, he can’t, even unsteadily, that’s an important change in physical function.
So it was with Mr. C. Although his daughter had dutifully reported to the ER doctors that her father had fallen, she didn’t emphasize that he was able to walk just fine until he fell. And because Mr. C. has moderate dementia, he was unable to articulate the pain that rendered him unable to take a step. Fortunately, after they returned home, the daughter was worried enough to call our Geriatrics Clinic, where Mr. C. is a patient. (He also has a heart condition.)
When we realized there had been a change in his function, we had him brought in for a CT scan of his pelvis, and we found several hairline fractures.
Diagnosing the fractures allowed us to make a better plan to manage Mr. C.’s pain, so that he could keep walking a bit while his pelvis slowly healed. By doing this, we kept him from becoming bed-bound, which would’ve seriously decreased his quality of life, and would’ve increased his daughter’s work in caring for him.
Changes in function seem like such a commonsense symptom that many caregivers assume that doctors will note these changes and take them seriously. Unfortunately, it’s easy for changes in function to slip under the radar of busy doctors, especially if they aren’t trained in geriatrics (the specialty of medicine that focuses on aging adults), and especially when these changes aren’t explicitly pointed out by the patient or his representative.
Tips for Caregivers
Always report any notable change in someone’s physical or mental functioning to a doctor, no matter how obvious it seems to you. Be sure to specify when you noticed the change, and how quickly it seemed to come on.
And then insist on getting an answer to what could be causing that change.
Have you ever had the doctors overlook a new function problem in an older person? I’d love for you to post questions and comments below!
Thank you for this! This is so important and I feel very fortunate that I was able to explain my first wife’s mental change. She one day could not complete sentences and while I could often guess what she meant, I called the oncology department and was able to get her in the next day. At first, the doctor ignored me until she asked her a question that they had trouble in completing a sentence and she looked at me and asked if this was what I was talking about.
I wanted to tell the doctor that she was not listening to me, but I just answered yes. My wife was immediately scheduled for a head scan and wheeled out of the room. An hour later, she was returned to the patient conference room and we waited another half hour for the doctor.
When she did come in, she said that we had two choices. Leave her as she was, or have radiation for three times and this could give her back her ability to talk. They had discovered five tumors and two were in the area affecting speech and reasoning. The other three would have started affecting her movement in a week or so. After the second day of radiation, she was again able to speak clearly and after the third day, she was doing very well. Two weeks later, the tumors were declared dead in another head scan.
She lived another 18 months until cancer could not be stopped from many places it had spread and become very aggressive. At least I had a good 16 months to learn cooking and she was a very patient teacher. She had battled cancer for almost 8 years. Two operations, chemo, and radiation, and on and off hospice twice and then a third time just before her death.
Thanks again for pointing out the signs to watch for in mental and physical changes.
Thank you so much for sharing this moving story, I’m glad you were able to help your wife get the care she needed. Also sounds like it really made a difference for her to get those tumors noticed and treated promptly! I’m sorry to hear of her eventual death though; it sounds like the two of you went through a lot.
OK- timing of this is great. My 93 year old mother was doing ok at home but a few months back had neck pain which we thought was from sleeping wrong. Muscle stiffness and had her at PT twice a week for two months. Seemed much better but several weeks ago the neck pain is much worse and now in bad pain even with Vicodin in her. Wants heat/cold on neck but nothing takes away the pain. Now unsteady (and a bit loopy from the vicodin) and not safe to remain at home- mentally and physically- have to go into nursing home in next few days. She had breast cancer a long time ago and we are having a bone scan done tomorrow as someone thought bone cancer? Any thoughts?
I think it’s a good idea to further investigate significant neck pain that’s been getting worse, and some type of imaging is often a good next step. You can also look for other “alarm” signs, such as weight loss, and numbness/weakness/tingling in her arms or torso.
It’s fairly common for elderly women to develop pain due to new osteoporosis fractures in their vertebrae, but that’s often more in the thoracic and lumbar vertebrae.
It might help if you ask the doctors to help figure out whether her pain seems to be coming from the bone, a pinched/damaged nerve, or muscle spasms. I would also recommend you keep a journal of her pain and symptoms.
Good luck, I’m sorry to hear she’s been having this pain and I hope your family finds some relief soon. Nobody likes to see their parent woozy, but sometimes it’s necessary to step up the pain medication in order to provide relief. (There can be less wooziness with low doses of a longer-acting painkiller.)
Having worked in a Skilled Nursing Facility, I so appreciate this information. It’s so easy to dismiss symptoms because of a person’s age!
It’s interesting to read this because I always felt like I was intruding and violating a person’s privacy trying to get their social history. I grew to understand why it is so very important to know how a person lived outside the facility so that we could do two things 1) replicate a person’s routine as closely as possible (I urged the staff to have Mrs “X” walk down to the nurse’s station to get her daily paper, because at home, she always walked down the driveway to get her paper) and 2) to be aware of any changes in mood or function.
Thanks for stressing how important it is to take even minor changes seriously.
Yes, agree that it’s very helpful to understand an older person’s life, including usual activities and living situation. I’m sure the residents in your facility appreciated your interest in their lives and interests. Thanks for this comment!
Leslie -This is such an interesting, helpful post. When my husband was diagnosed with trigeminal neuralgia 7 years ago, I became his caregiver. During the worst of times my normally cogent, sharp, funny 43 year old husband was in the most unbearable pain. This pain coupled with huge doses of meds distorted his ability to report accurately and because he was used to SO much pain he often underplayed how bad it was. Since TN is a rare disease, as caregiver I realized how important it was to explain both the changes in my husband’s physical and mental functioning. What ever your age, pain distorts so much, that having an advocate is crucial to relay important information, as you discuss here. Thank you for the important pointers and reminders.
Thanks for sharing your story. It’s a good reminder that everyone — no matter what age — can benefit from having a family or friend present to help relay information and take notes on recommendations, when going to the doctor.