More tales of patient-centred carelessness
I wrote a few weeks ago about the rather shoddy way in which I discovered that I’d got cancer again – because a lowly admin lass (who hadn’t got a clue what she was actually communicating) had shunted me into a clearly-overcrowded and foreshortened clinic, clearly because there was an issue to discuss.
Since then I’ve been regaled with other people’s stories about how they, too, learned in shocking ways that they’d got cancer. Here are some of them, below, in their own words.
Health care professionals, read and learn. Consider how sheer carelessness, system-led processes, and sometimes even misplaced and cack-handed compassion can lead to casual devastation.
Kate – The ‘not even talking about it’ disclosure
I found out the first time after a routine mammogram led to a protracted wait in the waiting room, completely unaware of what was wrong but with an increasing sense of foreboding. And I actually found out I was in trouble when a junior technician came out to the waiting area and asked me — just me, not anyone else waiting — if I wanted a cup of tea.These moments are entirely unambiguous to patients and it really struck me how untrained so many staff are for that moment of accidental but deniable disclosure.
So, like ‘just phoning to move my appointment’, this is another example of how you can’t actually ‘not communicate’. This is people just not understanding that they can communicate whole worlds without necessarily mentioning the subject at all, without saying anything about the issue at hand.
Annie – The ‘death sentence on your doormat’ disclosure
(I know, I know, I know, that a cancer diagnosis isn’t a death sentence, so forgive the hyperbole, but I honestly think that for most people, hearing for the first time that they have cancer, it feels like one.)
This reminded me of when I was waiting for the results of my breast lump biopsy.
‘What happens now?’ I asked.
‘Oh, if everything’s OK we’ll ring you,’ she says. ‘If not, we will send you an appointment letter.’
I walked away thinking ‘Do they think I’m feckin’ stupid? That I can’t work out what the phone call vs the letter means?’
We have never listened so hard for the phone to ring, nor stayed in, just in case it did.
Fortunately, it did.
So, just to be absolutely clear here. Imagine how it feels: you haven’t had a call from the hospital, and then a letter from the hospital drops on your doormat.
It might as well have a big 2-inch high CANCER stamp on the outside of the envelope!! Because you didn’t get the phone call and this can only mean one thing!
And it doesn’t say ‘We’re a bit worried about you’. It doesn’t say ‘Sorry that this isn’t as straightforward as you’d have liked it to be.’ It can’t say ‘Sit down while we talk about this, because this is probably one of the hardest bits of news you’ve ever had to process.’ It is so heartless, so mundane, so empty of information, so full of dread. It says ‘An appointment has been made for you in Clinic 7 at 2.45pm on Thursday.’
This seems to me the completely appalling thing. It’s a cop-out. It’s ‘just admin information’, but it bears a colossal, and completely unambiguous subtext, just by lying there on your mat.
And then you have to bend down and pick it up. You wouldn’t deliver a death sentence to a war criminal like that – on a bit of paper, on a doormat. YOU HAVE TO BEND DOWN AND PICK IT UP! And, somehow, stand back up again.
Barb – The ‘system doesn’t give a toss’ disclosure
I’d been to-ing and fro-ing with a lot of letters and cancelled appointments about my sore knee, then x-ray’s and scans. Then I got a letter out of the blue, asking me to go to an appointment at the Oncology clinic. No-one, up to that point, had mentioned the C-word, or any possibility that there might be anything sinister going on. I don’t know how I stayed sane in the days up to the appointment.
Doesn’t anyone ever look at an automatic letter they are designing and stop for a second to think: ‘What effect might this have if it landed on my doorstep?’
Sue – The ”Don’t blame me; it’s the process” disclosure
After years of treating haemorrhoids that I was sure weren’t the problem, they said: ‘OK lets have a look – quick day surgery, and we will cauterise them.’ So, day surgery day arrived, I was first on the list at 8.30 and remember clearly I came round at gone 11.30. I asked the nurse why it was so long when it was only going to be 20 minutes and
she said, ‘Oh they had to do a bit more than they planned,’ (first alert!) but I was discharged home in a couple of hours after the obligatory toast with no further information. That was a Tuesday.On the Friday I got a call from the Consultant’s secretary: ‘Could I come in on Monday?’ ‘So it’s bad news, then?’ I said. ‘Well, I can’t confirm that by phone.’ In my head this couldn’t be anything but careless confirmation that there was indeed bad news. I arrived on Monday and the consultant said ‘Well, we didn’t expect this from you: you don’t fit our usual picture,’ (or words to that effect), ‘And I guess you’ve worked out you’ve got cancer! That last bit is verbatim – it is ingrained in my memory and I’m sure you get that – like you’ve been thrown against the wall. He said ‘Right, I need you in for surgery. Sign here and come in on Wednesday.’ No question about did I have anyone with me, could I get home alright, no further explanations about where the cancer was, or even what it was. I found all that out later.
But isn’t it a rubbish, rubbish, response?
It can only be justified as being of benefit to the person initiating the call, who doesn’t have to have the difficult conversation. The caller actually communicates the result – without being explicit, but completely unambiguously – while being resolved of all responsibility for its impact.
This, because a rule that says you can’t give this news over the phone. But, clearly, you’re giving it anyway, just not taking any responsibility.
You can’t give it over the phone because:
- The person might be on their own.
- They might faint or become very stressed.
- They won’t have anyone to talk to and ask questions of (the dreaded ‘nurse in the corner’)
But this way – this careless, callous way – of ‘not giving bad news’, your person might well be on their own, might well faint or have heart attack, and they still won’t have anyone to talk to.
But, because you haven’t ‘told’ them, just sent a letter, or rung them ‘with an appointment’, it isn’t your fault.
It is.
We are all responsible for patient-centred care.
fionacarey2000 
Hi Fiona,
I couldn’t agree more. I personally would rather have bad news in person over the phone delivered by an empathetic nurse. You would think that someone in the departments that send/call/delivery these messages would have either direct or indirect experience and be able to point out how cruel they are. I think the apparent lack of common sense goes further … clinicians often seem to fail to appreciate the impact of their actions … keeping us waiting for 3 hours and then reminding us to drink/eat regularly … not providing chairs where they are needed when we have to queue for 5 mins+ just to book in at reception/collect prescriptions etc etc … it’s as if they forget we are quite often not feeling very well!
How are things going with you? Hope as smoothly as possible … Hope to see you a meeting sometime soon …
All the best,
Susanna
_________________________________
Susanna Lovell, PhD Mob: 07736 971120 http://www.cakecancercoffee.wixsite.com/chat
LikeLike
GRRRRRRRR!!!! This is all so unnecessary!!! I feel so angry on behalf of people who are put through this horrible, thoughtless, casual, dismissive treatment at one of the most significant points in their life. What makes me most angry is that it is avoidable.
LikeLike
Just horrific…
LikeLike
Somehow all your blogging gets joined together and the comments at the end only relate to the last item. Is there some way of splitting this up into individual blogs ?
LikeLike
Oh, dear, I’m sorry about that. I’m afraid that I have no idea how to fix it. I’ll do a little look-see. Thanks for pointing it out.
LikeLike
Even being in one of the stories you’ve mentioned here, I’m still shocked by the others. What we seem to be dealing with here is protocol that protects something (but not us) from something (possibly us) and the result is that many, many cancer patients find out in the worst possible way.
I have two other stories that followed the cup of tea on the diagnostic weekend. At the mammogram clinic, a really excellent woman doctor sat with me and said “I don’t normally do this without a further appointment, but I have seen a large shadowy lesion and I feel that we need to send you quickly to a surgeon.” What occurred to me as I reeled out into the street was that I didn’t know the meaning of the technical term she had used. I wasn’t sure if I’d heard “shadowy” or “shadowing” or whether that was worse than plain “lesion”. But she had unambiguously told me she thought it was serious, which really helped. And she said “Good luck.”
We waited over the weekend and on Monday I had to see a GP in order to secure a referral to a surgeon. After 48 hours of thinking, I knew what I was there to do, and why. The GP didn’t. I was the first appointment of his day — he had barely opened his computer. “Hello,” he said brightly. “What’s the matter with you?” “Well,” I said, “I’m fairly sure I have breast cancer and I need a referral.”
Here’s the thing: he was so thrown by this, so genuinely upset by the shock, that we offered to leave the room to give him a moment to compose himself and read the biopsy report that was on his computer. We found ourselves sitting on a wall outside the surgery in the sunshine thinking: OK, this is weird. Then we went back in, and the GP said “I’m so sorry to tell you, you probably have cancer.”
This was an early lesson in how surreal cancer can be.
LikeLike
This post hit me really hard…..Both me and my girlfriend have read this post several times now. We are both GP registrars.
As a doctor in the NHS all I can say is sorry that so many of you have had such horrendous experiences. It REALLY breaks my heart. My parents have both had horrible experiences as well, which is why I think this post has really hit a nerve.
Your insights have made me think really hard about how GP trainees are taught to communicate to patients nowadays. We spend A LOT of time learning about “consultation skills” and how to break bad news to patients. Much more than hospital doctors who hardly have any formal teaching on the subject. I find it very strange that as part of our training on communication and breaking bad news we are told that we should “signpost” patients that we are about to break bad news…so that receptionist who said that she didn’t know the diagnosis, may have been thinking she did a good job in her head, as the patient would now have an idea about the diagnosis, so when the doctor did finally tell the patient he/she would not be in as much shock.
May I ask how, in an ideal world you would like bad news to be broken to you? There was an example of how someone went to have haemorrhoids removed and it turned out to be cancer. There are a lot of people who have moles and lesions removed every day and it all gets sent off to be looked at under the microscope. So it would not really possible for the NHS to call everyone back for a follow up with the results – only the people with something unexpected…my girlfriend suggested that perhaps everyone should get a follow up with their GP, but this would likely delay the urgent treatment that the patient would need if everything had to go through their GP.
Would a sensitive letter be ok? I see that some people have had bad experiences with both telephone calls and letters.
Keep up your great work, I look forward to reading more of your blog posts.
All the best
Rakeeb
LikeLike
Hi Rakeeb, and many thanks for your considered post. I can’t engage with the issues you raised in detail, at the moment, because I’m just getting over a cancer operation myself. But I’m very glad that the blog struck a cord with you. I’m not really clear what the solution is – yet – but it will certainly involve talking to lots of patients, and designing a process ‘with us, not for us’. I think a big help would be if we could get to a situation where eveyone who has a scan, or needs results of some kind, is seen quickly after the diagnostic test is done. Then, there would be no need to phone people to bring them early (while witholding the information they are suspicious of), and everyone would be seen quickly, in much more managed surroundings, with all the people and information required to reduce the inevitable trauma to as much as possible. It would reduce the second-guessing for patients: ‘Am I being hauled in because the news is bad?’ GPs having better and closer relationships with HCPs based in secondary care, would be necessary. More like it was previously, I understand?
Anyway, gotta go and eat. Let’s talk more.
LikeLike
Shocking stuff. Not quite like Holby City would have us believe and a very useful analysis, Fiona, which helps others feel they are not alone with their diagnostic experience. Very kind of you to share such difficult moments.
LikeLike
Hi there, Anthony. It was a bit grim. Addenbrooke’s is looking at the process for informing patients of changed appointments. It’s all a bit slow, but we might get there in the end… x
LikeLiked by 1 person
Yes. A complex process I bet. Well done to you for helping to sort it out!
LikeLike