Diagnosing cancer

“What do you think this is, doc?”

Mike opened his mouth as wide as possible and pointed to his right tonsil.

It was about the size of a conker and grey. I’d never seen anything like it.

“I’ve never seen anything like it” I said. “But I really don’t like the look of it”

“So what could it be?” he asked.

“Mike, I’ve never seen tonsil cancer before, but I really think we should find out what that is as soon as possible.”

“Thanks doc, what do we do now?”

I referred him to the local ENT specialist and 2 weeks later he was diagnosed with cancer of his tonsil.

****

“Could you sign my insurance form please?”

Aimee had been seeing a private physiotherapist for her back pain which started a month ago while she was gardening.

“Is the physio helping?” I asked. Aimee was a fit-looking 32 year old who worked for a city bank.

“Not much yet” she said. “I’m still taking pain-killers and doing the exercises though”

I’m not sure I examined her, she was in a rush, I was running late and she looked well.

Three months later I discovered that she had metastatic breast cancer. The back pain started when one of the vertebrae (bones) in her back fractured because the cancer had metastasised (spread) there. She saw three other doctors before one of them arranged for blood tests which showed signs of inflammation, then a bone-scan showed the metastatic spread and further tests revealed the breast cancer.

Both Mike and Aimee died last year.

I see about 2-3 new cases of cancer a year. Some are like Mike, some are like Aimee.

The secretary of state for Health, Jeremy Hunt has announced, to cheering headlines from the Mail and the Mirror, that GPs who are slower than average to diagnose cancer will be ‘named and shamed’. If I have two patients like Mike I’ll be fine, two like Aimee and I’ll be named and shamed. One year green for good, the next year red for dangerous. If you want to wait until I’ve seen enough patients with cancer to be statistically significant, you might have to wait another 20 years.

Another problem is about which of the three GPs, one A&E doctor and two physiotherapists is responsible. I only saw her once. Guidelines recommend that we start investigating when a new episode of back pain hasn’t resolved by six weeks, but she had only had it for a month when she saw me.

After Aimee’s diagnosis our practice arranged a meeting with all the doctors and trainees to discuss how we could have helped her sooner. I reviewed all the literature I could find on back pain and breast cancer and presented a summary to the other doctors. We read the hospital reports and discussed Aimees concerns and opinions. We instituted a policy of every patient having a usual doctor, because one factor in the delay was seeing different doctors who were more likely to watch and wait than a doctor who had already made their own assessment and done that once. We also made a decision to discuss every patient who was diagnosed with cancer, whether or not their diagnosis is delayed, like Joan who didn’t see a GP until her breast was covered with a giant cancerous ulcer.

I don’t know if it has made a difference, because as a practice of 12000 patients we only see about 20 new cases of cancer a year. But we haven’t had any significant delays in cancer diagnoses since then and all of us really appreciate learning from the cases. Cancer very often presents in ways we don’t expect.

 

Shame is never useful. The natural response to shame is to hide, oneself or one’s actions or both. Another response might be to refer every patient who might possibly have cancer so that someone else, anyone else is responsible, but not you. That would be a disaster. Shame and blame are the last things you want if you’re looking for a culture of openness and safe patient care. The Francis and Berwick reports after Mid Staffs, both pointed to the dangers of a culture of fear,

Honest failure is something that needs to be protected otherwise people will continue to live in fear, will not admit their mistakes and the knowledge to prevent serious harm will be buried with the patient. Francis

Abandon blame as a tool and trust the goodwill and good intentions of NHS staff.  Berwick

According to airline and patient safety expert Sidney Dekker,

Accountability is the willingness to share accounts.

Fear is a grave risk to patient safety.

Shame as a policy satisfies our desire for a simple explanation, a bad doctor for example. This is an ancient myth we tell our children and ourselves; if we can identify the bogeymen, in this case the bad doctors, then we’ll be safe. Shame is also the product of a desire for retribution. Behind policies designed to shame people are not simply newspaper editors looking for headlines, or politicians looking for simple answers to complex problems, but aggrieved relatives, policy-makers or journalists trying to cope with a delayed diagnosis or a medical error.

Their concerns deserve to be taken seriously, very seriously indeed.

But if shame continues to shape policy, it will be a disaster for patient safety.

Of course, this policy may have nothing whatsoever to do with patient safety. It has always been a fantasy of Tim Kelsey (who Paul Nuki from NHS Choices said might be behind this idea) and other policy makers that patients should act more like consumers. In order to do that, the bond between patients and their GPs who they know and trust (but may be a little slower than average in diagnosing cancer) needs to be broken. One might even wonder if the constant denigration of GPs is part of this project. Then with alarming headlines and league tables patients will be scared (enabled) to choose another GP …. (thanks to Richardblogger for pointing this out here)

Further reading/ watching:

Patient safety and quality: An evidence-based handbook for nurses. Chapter 35 Error reporting and disclosure.

Patient safety depends on NHS staff feeling valued, respected, engaged and supported: Culture and behaviour in the English NHS. Mary Dixon-Woods

Referring patients. Doctors’ anxiety has a lot to do with it.

Narrative, listening and forgiveness.  How the process of grieving can lead to forgiveness

Shame – and how it presents in clinical encounters.

The emotional labour of care. Health care is emotional labour.

 

Sidney Dekker– airline and patient safety expert and brilliant speaker: Lecture on Just Culture:

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