Searching for ways to reduce errors in diagnosis

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.

Glen’s Experience

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.

My Suggestions

Two things about diagnostic error have become clear to me over the years:

  1. Diagnostic Error rates reduce the more we patients take responsibility for our own healthcare
  2. 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:

  • GP
  • Nephrologist
  • Cardiologist
  • Infectious Diseases Physician
  • Haematologist
  • Me!

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

Guardian AngelIn 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.

Bottom line

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?”

Dialysis: a Heartfelt Journey

Without dialysis, I would have been carried off long ago. With dialysis, I’ve been able to draw out the carrying off bit for 23 years and still counting. It’s a constantly changing situation;  one that keeps me on my toes.

That’s not to say there aren’t challenges.

As I’ve said many times here, it’s rarely the dialysis or kidney failure that kills you. It’s usually your heart, gradually weakened and damaged by the constant (and sometimes very large) changes in fluid volume it has to deal with between dialysis sessions.

Now, true to form, after my last prolonged stay in hospital in December, my heart is giving me a bit of stick. However, it’s not so much weakness as blockages in my arteries. And not by any old cholesterol plaque; oh no, my blockages are calcium, slowly deposited in my veins and arteries. This happens after years of the ongoing battle between calcium and phosphate, caused by my missing kidneys. The last doctor I saw put it succinctly; he said I have crunchy veins and arteries. Nice mental picture.

Anyway, the blockages are slowly growing, and for a range of reasons, I’m not a good candidate for either a bypass or a stent. So my heart is being managed medically, with a range of drugs designed to slow or minimise further blockages.

One of the side effects of this new, weakened heart is that I get puffed quickly, and when stressed, my heart feels a little strange. So I have my trusty Glyceryl Trinitrate (GTN) spray. A quick spray under my tongue relaxes and widens the crunchy veins and arteries in my heart and the rest of my body, making it easier for it to pump, and I’m ready for more action. I don’t use it all the time, just if I’m exerting myself, walking up hills or in the gym or trying to keep up with the grandkids when we walk to school.  

But just recently I’ve noticed a couple of new twists, that need new thinking and acting on my part.

Breathing vs Sleeping

For the last 6 months, if I’m more than about a litre overweight (say at the end of a morning dialysis day, or a full non-dialysis day), when I go to bed, I wake up around 2am gasping for air. It seems that when once my heart would brush off the effects of a litre or more, now it can’t handle it so well. During the day, instead of being distributed around my body, the extra fluid goes to my legs and at night after I’ve been horizontal for a while, to my lungs.

I mentioned it to my Cardiologist and he put me on GTN patches, to wear at night. Mostly they work a treat and I sleep like a baby.

Mostly. There are still a couple of nights, after my two days off, that I put on more than a litre, and the GTN doesn’t cope. I wake up at 2 am or 3 am out of breath. On these nights I go to the living room or the office and sit up for an hour or so until my legs fill up again. Then I go back to bed. It works pretty well, but it’s a drag.

There are a couple of things I’m trying to get back to a full night’s sleep. Firstly moving most of my dialysis times the evening, so I’ll be dry most nights and sleep well. Also, if I limit my fluid intake on my days off, to less than a litre, I should make it through those nights too. This seems to be working.

A stronger patch may be another option. I’ll talk to my cardiologist at my next appointment. It could be a simpler answer, hopefully with no extra side effects. With my current patch, when I first wake up, I feel a little weak and lightheaded and it takes me a couple of hours to get my energy back.  If I go to a stronger patch, these side effects may get worse.

Base Weight and AF

Again over the last 6 months, in what is obviously a related problem, my heart began slipping into AF (atrial fibrillation) when I was on dialysis. Like after last Wednesday’s run, I felt a little strange when I came off, but thought little of it.

When I got home and sat down, my heart jumped into AF so violently that it felt like a heart attack, and Jule and I went to the Emergency Department. After blood tests, they reassured me that it was only AF. They contacted my Cardiologist, who changed my medication to make it harder for my heart to go into AF. I spent the night in the Short Stay Unit and went home around lunchtime the next day.

Still, this was pretty scary. Rather than keeping me healthy, dialysis was giving me AF, (which can take hours or sometimes days to revert). I quickly realised that if I didn’t want to have to choose between dialysis and AF, I needed to take some action.

After experimenting, I think I have worked out why and how to stop it. It’s all about making sure I don’t strain my heart, by going too far or too fast below my base weight during the run.

It seems to happen only when I have a small amount of fluid (less than a litre) to take off. (I have been deliberately low on fluid so I could sleep at night.) When the nurse adds my drinks and washback allowance, the UF rate means that sometime during the second hour I have taken off more fluid than my base weight. This continues until the end of the session when I get my washback.

My heart doesn’t like any of this and reacts by going into AF.

So now if I’m taking off less than 1 litre, I either run in (where both lines are connected at once and I get about 300mls of extra saline before the actual dialysis/UF begins) or I add 300-plus mls of saline after the first hour and add the same amount to the UF remove, so they cancel out.

Either way, adding more fluid helps keep my weight above or near my base weight, which ensures a gentler UF and my heart is happy and unaffected.  

So now, mostly, I come off healthy, relaxed and ready to rock.

(Of course, since these problems are related. I could simply arrive with a litre or more fluid on to take off, and eliminate the AF problem, but that may make it harder to sleep at night. It’s trial and error. If I can sort out the sleeping/gasping problem – with patches or whatever – I can also solve the AF.)

It just goes to show that healthy dialysis and a trouble-free heart are the result of constant vigilance.

Then there this: more shameful than inspirational

Again, I’m a little late to the party, (this aired in May)  but have you seen this story?

It is a truly shocking report. it confirms our worst fears: US dialysis is in crisis. The most expensive dialysis service in the world has the highest dialysis mortality rates.

Two for-profit giant companies (DaVita and Fresenius) deliver 70% of the care, overwork and underpay staff while making enormous profits. From this report, it is clear that the industry is overwhelmed by bad incentives, poor oversight, and profiteering.

Any wonder why over 70% of the fistula rupture stories on this blog are from US readers.

The one small light at the end of the tunnel is the California Dialysis staffing bill.

But first, have a look at the report (Language warning!).

Medscape has a great article about\ the California bill, (it’s free, but you may need to log in), that has attracted a huge number of comments, all in favor.

For example, one nurse wrote:

…The problem arises when you take care out of patient care.  By this, I  mean that the monetary value of running a clinic outweighs the quality of care provided by the staff.  You can not expect Staff to give the quality of care when they are overloaded with 4+ patients to care for and only have 15 minutes between each patient to rinse back, take VS, close up their access (be it a catheter or a access (graft or AV Fistula)) and put another patient on by doing their VS, quick assessment, cleanse their dialysis catheter/ graft/av fistula, start their treatment, document on the patient and give report to a charge nurse.

And another:

…I was tired of on-call and went to work in-center and my ratios in New Jersey were 3 patients per tech, nine patients/RN.  I had to assess 9 patients and put on 3 every shift and when you have techs they may put the patient on the wrong bath, not do vital signs timely, with no time between shifts if you had a patient hypotensive, it was insane.  A patient died on that unit, but not assigned to me that day because the techs did not do their vital signs and the nurse was busy doing something else. The B/P kept on dropping and no one assigned in that area ever told the nurse assigned there.  You still have to do care plans, monthly notes, give blood, give meds, and get yelled at because you are not doing turn over fast enough.

How the No boosters keep a straight face is beyond me.

One interesting thing from the video: when these companies are sued, they settle.

Food for thought for anyone who has had a loved one die from a fistula rupture in one of their units,

Guest post: Holy Roman Holiday

Lorraine from Melbourne shares her excellent Roman adventure:

I want to share with you my experience after starting haemodialysis at Diaverum Diamond Valley  in August last year.  As well as taking courage to successfully return to my part-time work in a gradual way after a period of depression following my hospital admission  I managed with no hitches to undertake a short overseas trip to Rome.

Even though I was extremely ill earlier last year with a long hospital stay, including nearly two weeks in ICU and with no immediate prospect of overseas travel, I decided with much faith to renew my expired passport. Little did I think that I would need it to travel to Rome in February this year!

I went with two friends to participate in a congress and private audience with Pope Francis for the 25th anniversary of an international network of business entrepreneurs, workers, students, researchers united by a vision of the world and the economy oriented to the common good and the integral development of the human person and society.

With the wonderful help of Chris, our Unit Manager, my dialysis sessions were seamlessly organised with Diaverum in Rome and providentially I was not even charged! But there was an even more extraordinary moment of providence when I met Pope Francis personally as a representative of the Zone of Oceania for this network. The photo says it all!

But there was an even more extraordinary moment of providence when I met Pope Francis personally as a representative of the Zone of Oceania for this network. The photo says it all!

Lorraine with Pope Francis

Lorraine with Pope Francis

It certainly does. Thanks Lorraine, you are an inspiration BigD-ers everywhere.

Living well on dialysis? Absolutely!

BigDandMe is all about living well on dialysis.

Hard to imagine when we first hear the bad news: I’m going on dialysis. Then, our life seems to be consumed by shock, anger and not a little fear. But for most of us, that doesn’t last, because after a few weeks, we start to feel well again, and our resilient side comes to the fore. Our life is not over, just different. And dialysis is the price of the ride.

It is always great to hear of other BigD-ers with this living-life-to-the-full attitude.



Wayne Cooper LSBM at DELA

Like Wayne Cooper, a board member of that wonderful South Australian institution, the Dialysis Escape Line Australia*. DELA’s main goal in life is to set up temporary dialysis units at resorts and on cruise ships to allow patients a holiday, without the stress and difficulties commonly experienced when organising treatment away from home. (more…)

Happy Christmas Dialysis

No dialysis in unit on Christmas Day.  So I started nice and early this morning (0530 Christmas Eve), so that everyone who normally dialyses on tomorrow can dialyse today or Boxing Day (St Stephen’s Day).

Home now, wrapping presents, preparing food and enjoying the anticipation of a happy day tomorrow.

Have a very Happy Christmas and I look forward to catching up in the New Year.

Cheers!  Greg