Sunday, 15 June 2014

How do you really practice patient centered care?

One of the great disconnects between doctor and patient is the difference between "learning" and "knowing".

A competent doctor can learn their specialist area well. They might conduct research or design new treatments. They might spend years on PhDs or medical papers that further our understanding of a condition. But that's all they can do. They can only learn about it.

They rarely actually experience the disease or condition as the patient does. Clearly.

It can lead to a strange and frustrating relationship. If the Dr has learnt in a textbook that something is true, then it must be true. If a certain symptom or reaction is not part of their understanding of the condition, they might dismiss it. I clearly remember a doctor telling me that humans can't feel pain in their bowels as there are no pain receptors. I looked at him in utter astonishment. How could he ever possibly believe this? He saw patients every day in agony, writhing around, pleading for relief, yet he didn't believe in that pain as he'd been told it didn't exist.

For years I explained that my Crohn's disease would be worse just before a period and was assured that it was just period pains. Again, I had no idea how to respond as I couldn't even begin to imagine how a Dr might think I wouldn't know the difference between pain in my womb and pain in my bowel. It would be like turning up to see your GP with a broken finger and being told not to worry, its just all part of your depression. The disconnect was so great, it was almost impossible to bridge.

Years later research showed that the hormones of a period did indeed seem to stir up the actual Crohn's, separate from any symptoms of the period itself. I remember my consultant telling me wryly. Now that it was written, it could be.

I couldn't be allergic to vitamin B12 injections because people just weren't. It turned out I was.

I couldn't have blood results that defied the actual picture raging inside me, people just didn't. I did.

If I didn't blow up to the size of a football, I couldn't be obstructing. But I could. Regularly.

And on and on. I would claim something to be so, they would say it couldn't be right up until we found that it was.

But the serious point behind this truth is that these were the times in my life when I found the NHS set against me, not with me, They were the times I felt most desperate, unheard, frightened. They put insurmountable brick walls in the way of care I often urgently needed.

Nurses too could spend decades caring for and treating similar symptoms, yet have no real concept of what that care really offered. Bandages were changed because it was the third day they had been in place, drips of liquid feed were changed because calorie levels had been reached for the day. Beds were changed because that's what you do when you first come in in the morning. That's not to say staff didn't empathise with their patients or care about their lives, just that any job is a job first, with tasks that need to be done and it's rare to stop and think about the effect that job or task has on your patients.

Most of us can understand the pleasure of a clean crisp set of sheets after 24 hour of sweating or vomiting or bleeding through the last set. I think we can imagine the bliss of a cup of tea after a long 24 hours nil by mouth. But could we understand how marvelous it feels to get outside for an hour when we've been shut away for weeks, how that can be just as important for recovery as any pill? Can we really know how it feels to experience pain every minute of every day unremittingly? What that might do to your life or the person you are in the long months when a healthcare professional never sees us? Can they know how scary it is to have someone stick needles or tubes into you and dig about a bit, not alleviated one jot by the fact that it's "for your own good"?

Of course we can't. We might think that we can, that we try to understand, but we can't. If a human has been broken by the incredible challenges of living with a long term serious illness, it's easy to judge. To believe we would have been stronger, coped better. It's easy to separate patients into deserving and underserving based on their responses to what we sometimes forget can be extreme suffering. It's easy to judge their lives as we judge our own, forgetting the million tiny challenges the patient faces every day that we don't ever need to even consider. We might treat the pain, or clean the wound or prescribe the treatments, but we may never know how hard it is just to make a cup of tea or hold your own children when they cry.

If someone has dedicated years of their life to alleviate the suffering of a specific group, it seems a little churlish to suggest we might make the process more arduous. However, it seems to me that we should evolve our medical system to give as much weight to really trying to understand how it feels to experience the condition you hope to treat.

Staff on a bowel ward might have to try the liquid feeds they administer. Trying them is very different to living on them, and no-one would be any the worse for volunteering to do 48 hours with nothing but litres of synthetic goop. Sitting still for hours on end would drive most doctors I know into complete fury. I think I would like to see doctors spending 24 hours in a bed with no ability to do a single thing for themselves. Unless you experience the true length of a day, until you know what it is to be confined, totally dependent, to a bed, you may never even notice what it can do to a patient.

Did most doctors or nurses have to sit down with a patient during their training and ask them about how it feels to live with their conditions? Not the symptoms but the actual reality of tolerating or navigating the challenges it brings? What it does to their life day to day, how it has shaped their lives and why they might have modified their behavior to survive the onslaught.

Because 30 years of treatment have given me the wry knowledge that science is only science until it isn't any more. Endless battles trying to explain that a particular approach doesn't work are often vindicated years later. Care changes, procedures are updated and the only constant is that whatever the opinion du jour might demand, a human is lying in the bed.

That patient sometimes needs you to just sit and hear them. It isn't a waste of your time, far from it, it will give you vital clues about what might work best for the person behind the hospital number.

How does being ill hurt them? In which ways is it putting pressure on their families? What do they want you to do for them? Their goals may not be what you imagine at all. What are their priorities, how can their lives be improved so that the condition has less impact? None of that might involve a pill or operation, it might be that they need some social care support or a car modified to their needs or a better pain consultant. If you can truly imagine what a lifeline that car is to them or how the constant pain drains them or how they miss their children when they have to spend long periods in hospital, it might change your approach completely.

An illness is only a fraction about it's treatment and 99% about living the best life you can through it. Yet we devote 99% of our resources to providing the best medical outcome we can, devoting just a fraction of our time to understanding why we're doing it, why it matters to the individual lives we aim to improve.

I think a shift in this balance might go a very long way to providing the patient centered care we say we want without necessarily spending further mountains of cash on expensive drugs and equipment alone. Patients might in fact need and desire entirely different solutions to those we assume. If we start to ask the questions, we might just be amazed by the answers. If we aim to experience as many of the challenges our patients do as we reasonably can, we must certainly be better at our jobs for it?


  1. Hello Sue. Brilliant writing. It is a strange world indeed when doctors have apparently learnt about how to cure an illness without understanding how an illness develops, behaves and reacts. There must always be room for improvement in all aspects of life, but it is particularly important to be open-minded to fresh information and discovery of someone's ill health factors, if we are to eliminate suffering and find better ways of treating illness in the future for generations ahead. We might even find a cure for the common cold, that should encourage everyone!

  2. Excellent. Should be essential reading for any medical staff.

  3. So writes the voice of experience. You are articulate in saying how it is. It shows the time you have taken to learn this. How damaged are we when people deny our suffering? I'm sometimes scared just how damaged myself and my friends are. I think living in a climate of denial of disablity and disease is making the day to day ignorance harder to bear. I went to my ESA Tribunal and lost. I didn't do it for fun. It was stressful exhausting and painful. I collapsed afterwards. I've tried to make sense of the experience.

    Misjudging the Situation

    He can see my pain.
    He is paid to,
    it is his job.
    Though in truth he cannot.
    It is our secret.
    He will not tell
    and my voice cannot be heard above the accusations of liar and cheat.
    My pain is worse for it's being denied.
    He has earned himself a foreign holiday. Compensation to ease his conscience.

    He spent his days cutting out disease, forcing people better.
    After surgery he let them choose their pain relief, drip drip, for comfort.
    He could not prescribe their tolerance. People are complex and random. They hurt when they hurt.
    He let intravenous take the place of judgement allowing nature a chance to heal.
    He did not question then.

    Now he sits elevated proud. Out of retirement still vital. Making life and death decisions.
    He said my pain was was less and of no account.
    He was not wrong.
    His judgement not faulty. It cannot be.
    He cannot see it, he cannot cut it out so for him it does not, cannot, will not exist.
    My pain was of no account to him and he just made it one hundred times harder for me to bear.
    He will take a well earned holiday from our collective pain.
    I will go home mad, and try to make my pain visible.
    Foolish professionals will look and wince to see such suffering writ large while I laugh because they do not see the half of what I feel.
    My blood is not pain. It is a little light relief.

  4. Anonymous - That's almost spooky! I just posted a poem I wrote when I was younger on almost exactly the same theme!!! Before I'd seen your comment

    1. Guess when you are poorly you get a lot of time to think. A lot of people don't get that luxury. Shame what we think end up giving us nightmares. You got cynical early hey? Me too. Bet that is not a good thing. Though it gives you fodder for your writing. That how I look at it anyway

  5. Sue you have summed it up so well - I am utterly tired of doctors saying 'you look well' when each day and night is an ongoing trial - but not visible. Likewise, the drug side effects we all report, only to be told that no-one else has them!

    I - like most other patients - are just seen as a collection of diseases - and a myriad of hospital coding numbers (how they generate 60% of their income; we are not just coded for national statistics).

    Battling through each day takes most of our strength; battling with doctors, health professionals and benefit offices destroys us in other ways.

  6. I was told (by the psychologist) to carry on even though I was exhausted as it wouldn't make me worse (it did). I was told Graded Exercise Therapy was the way forward. (It wasn't, it made me worse). I was told Cognitive Behaviour Therapy would work, because it was all in my head (it wasn't and it didnt). Finally it's been recognised that I'm ill. I have an autoimmune disease that isn't in my head at all. My pain is real, exercise of any description makes me ill

  7. I wish I could show this to every doctor I ever had, especially the ones who said that what I felt couldn't possibly be true, only to learn later that I was right.

    I would be honored if you would consider writing an entry for my book. I'm sorry to post that here, but I wasn't sure how else to reach you (I only found a Twitter address, but I thought this might be better.) Details are here: Please consider writing and let me know if you have any questions! (