Nearly everyone will experience at least one diagnostic error in their lifetime. Most chronic (kidney) patients can expect to experience many more.
Last Monday I had the great pleasure of presenting the consumer’s viewpoint at the second Australian Diagnostic Error Minimisation conference, held here in Melbourne. Speakers and attendees came from around the world and it was great to hear from so many world-renown senior clinicians working on the problem (and making progress).
My job was to tell the attendees how we patients feel about getting the diagnosis wrong – how badly it can affect us – and to make suggestions on how we can help to minimise the problem.
Below is an edited version of my speech.
How Diagnostic Errors affect us
Medical Errors we know about are the tip of the iceberg
Personally, my experience with diagnostic error has been much like most. Being put on the wrong medicine sent for unnecessary tests or procedures, or refused necessary tests, procedures or even blood when I needed it. Some errors causing more harm than others.
Sometimes it can take a huge personal toll on a patient. For example, my friend Glen – who has a kidney transplant – woke one morning to find his whole left side numb and immobile. He went to ED and after tests, was told he had early-stage MS and he was put on the associated medication.
Fairly quickly Glen found himself in a wheelchair, and gradually believed, and began to behave like he was an MS patient. So, after a heartbreaking talk with his wife, he left his job and they sold their house and moved to a smaller one, more suited to his condition. He eventually joined the MS Society and during his interview, they raised serious questions about whether he really did have MS.
He went to another specialist; who sent a sample of spinal fluid to the US for testing. Result: no MS, just a small mini-stroke.
This diagnostic error cost him not only a year of normal living but his career and a needless move from the home he loved. A huge emotional toll and hundreds of thousands of dollars.
Of course, it could have been worse – there are many recorded examples of patients dying because of diagnostic error. But Glen’ story is bad enough.
To me, Diagnostic Error is a lot like the road toll: both will never be entirely eliminated because both involve humans in charge. But like the road toll, we must find ways, to reduce Diagnostic Error and to do so sooner rather than later.
Two things about diagnostic error have become clear to me over the years:
- Diagnostic Error rates reduce the more we patients take responsibility for our own healthcare
- Many incorrect diagnoses are the result of clinician overconfidence and jumping to conclusions.
1. Patients taking responsibility
In line with the ePatient approach, over the years I have gradually taken more and more responsibility for my own care.
I have achieved this in several ways, but the most powerful is the quality of my relationships with what I think of as my Healthcare Team. At present there’s six of us collaborating on my care:
- Infectious Diseases Physician
I’ve been collaborating with some for over 30 years, others for a shorter time, but the relationship, which enables effective, two-way communication. is wonderful.
In fact, I am pleased to say that consultants not only send letters about each consultation to each other, they also send them to me. I recommend this as a way to stay in the loop. For most consultants, you only have to ask.
For my part, I keep a file on my health record in Evernote, on my phone: letters, blood results, ECGs, referrals, scans, discharge summaries, etc.
I also keep a detailed list of my meds, hospital details, latest blood tests, etc. (my ED Elevator Pitch). You never know when you need them, especially when you go to ED.
When we patients take responsibility for our own healthcare, the resulting better relationships, communication and collaboration with clinicians absolutely reduces the chance of Diagnostic Error.
Being an ePatient
Over the years I have worked on this blog, part of my personal growth has resulted in me gradually becoming an ePatient, that is, someone who takes responsibility for their own healthcare.
From Wikipedia: e-Patients are health consumer who participates fully in their medical care, primarily by gathering information about medical conditions that impact them and their families, using the Internet and other digital tools.
ePatients report two effects of their health research: “better health information and services, and different (but not always better) relationships with their doctors
ePatients are expert patient: equipped, enabled, empowered and engaged
In short, over the years I’ve become my own Guardian Angel. And very much part of this involves collaborating with clinicians and working to minimise Diagnostic Error together.
2. Clinicians Jumping to Conclusions
Here’s a Jumping-to-Conclusions example that happened to me recently:
For the last 3 or 4 years, I have regularly visited the ED with a very painful hip. The first time I was treated with Vancomycin, which seemed to work. A year later I presented a second time, with the other hip the problem. The doctor looking after me read my discharge Report and jumped to the conclusion that if Vancomycin worked once, it would do so again. It did, and I returned home.
The next year it happened again. Yet again, I found myself in bed with a Vancomycin drip. Staff were puzzled, but it seemed the obvious answer.
Then, to Julie’s and my delight, one very switched on Infectious Diseases Physician decided to do some in-depth thinking. She read the file in more detail and realised that these weren’t independent issues, but a single, recurrent problem that vancomycin was not actually solving. She changed the treatment, and wallah, here in sit, in front of my PC, the picture of health (sort of).
So, what is a consultation?
If we understand what exactly a consultation is, we can better ensure that the clinician has the best chance of not jumping to conclusions.
A consultation is a meeting of experts
One is an expert clinician, the other an expert on themselves
The meeting is a collaboration, and both have a responsibility:
The patient to describe their problem (symptoms) clearly
The clinician to:
- Diagnose the illness accurately
- Help the patient recover
From my experience, I think the best ways I can help clinicians to stop being overconfident and Jumping to Conclusions are:
1. When I’m feeling unwell, I go to a reliable medical website, like the Mayo Clinic Symptom Checker or any other Patient Education Web Site Worth Recommending to get an idea of what may be wrong. Many say when I should visit a doctor. If I think I fit the bill, I make an appointment.
2. In the waiting room, before the consultation, I think about and maybe even make a list of my symptoms. This can be helped along if I ask myself two questions: “Why am I here?” and “What do I think it is?” This helps me to be ready with useful information when I see the clinician.
3. Just before the consultation ends, I ask the doctor ”Could it be anything else?”
Asked at the right time (after the doctor has pronounced their diagnosis, but before leaving the surgery), it forces them to think again – and maybe even change their mind.
As I said at the outset, Diagnostic Error is a lot like the road toll: both will never be entirely eliminated because both involve humans in charge. But just like we can reduce the road toll with smarter cars and damage-limiting techniques like mandatory seatbelts and speed limits, we can reduce Diagnostic Error:
- When we patients take responsibility for our own healthcare – the resulting strong relationship with clinicians reduces the occurrence of Diagnostic Error
- And helping clinicians avoid Jumping to Conclusions by:
. Being well prepared when we walk into the doctor’s surgery
. Just before the consultation ends, ask the doctor: ”Could it be anything else?”