Time for a re-think?

Patient centered care has been around health and nursing care for as long as I can remember, in fact its been around for so long that few of us can remember a time before we all began involving patients in decisions about their care. The problem, however is that because patient centered care has been around so long practitioners are getting sloppy about how they interpret it. So let us first clear up a couple of misconceptions about what patient involvement in care or patient centered care is;

1. Patient centered care is not about giving the patient a long list of options for treatment and then expecting them to tell us, the expert, what they want done. It is not in appropriate for patients to expect us to explain things to them, highlight the risks and the benefits to each option and even (and I know this is heresy) offer a personal as well as a professional opinion. Telling an 89 year old lady that she can have an operation or stay in bed  and wait for the hip to heal is not giving her a choice. Explaining the risks of surgery balanced against the risks of 12 weeks bed rest allows her to make an informed decision and possible not the one the health care staff would want her to make.
2. Providing a patient with paperwork to do under the guise of being 'self-monitoring' is  not patient centered care. If we don't expect the patient to share their readings with us on a regular basis (and by regular I mean more than 6 monthly) or are prepared to discuss changes to treatment on the basis of them what is the point. Patients are not stupid and will soon realize that they are being fobbed off with 'busy work' to give them an illusion of control
3. Patient centered care is not about listening to experienced patients and then totally disregarding what they tell you. It might be nice for the patient to feel that their practitioner is listening to them but if their experience is not translated into bespoke approaches to care then the entire exercise is futile.

I would suggest it is time that we re-think what we mean by involving patients in their care and do it in a way that is actually practical, useful and impacts on treatment and takes full adavantage of development like mobile techonlogy. For example, one of the major problems underpinning good pain management is lack of both assessment and evaluation of pain treatments. If patients who were able, were encouraged to download a suitable pain assessment app to their mobile phones that they could use whilst in hospital, especially if it were an app that could communicate with the ward technology then it would go a long way to addressing poor pain management and would be actual patient involvement. If people with diabetes monitored their blood sugar using any one of the many monitoring apps on the market they could share that data with their GP's practice and actually be partners in the management of the diabetes.

I understand the nay-sayers will come back with things like  'not everyone has or knows how to use a smart phone' or 'older people do not use technology ' or 'people who are in hospital are too sick to rate their own pain' but a lot of people do use smart phones and would be happy to take that level of control of their illness or disability, the boundaries of  what  constitutes 'older people' are becoming increasingly fluid and a lot of individuals who fall into that category now have indeed an awareness of and a level of competency in using mobile technology and this tech-friendly population will only increase in the coming years. 

I guess what I'm saying is rather than just assuming that talking to patients about their treatment options is the only way to facilitate patient involvement, lets really make patients our partners by giving them responsibilities and according those responsibilities the same level of importance that we give our own tasks. I wouldn't have a problem recording my own blood pressure or blood sugar and just e-mailing it to the surgery every week, in much the same way I wouldn't have a problem using a smart phone app to record my pain scores - I'd be happy to be part of my care especially if it would free up practitioners to look after those patients who actually need their attention in that area 

Things I'd like to tell my health care professional

I had to endure organised health care again today. Here are 7 things I wish I had the guts to tell my healthcare professional....

1. Do NOT lecture me in a patronising way about my activity levels whilst you sitting on a bottom so big it bends space-time. I have no problem with people or even health care professionals being fat, I, myself, am morbidly voluptuous and so are a number of my lovely (and healthy) friends. I think there are a lot worse things to be, evil for example, or vindictive, or a contestent on Britain's Got Talent, but don't presume to lecture me about exercise when you are obviously as fat and un-fit as I am. Why not try empathising instead?

2. Do NOT use 'we' when actually you mean 'me. For example, 'we need to get onto a strict diet' Fine, you start and let me know how that turns out for you, I'll join in later after I've finished this cake. Including me in the health focussed "we' doesn't make me feel like we are a team, it makes me feel like a toddler, and we all know how diligent and responsible 3 year-olds can be don't we?

3. Don't assue that everyone who comes through your door has the intellectual capacity of a cheese sandwich - I'm actually quite clever and I bet I'm not the only smart person on your patient list so explaining the causes of diabetic neuropathy as ' when the sugar floats round in your blood some of it sticks to the ends of your nerves and that means messages for your brain can't be heard properly' only makes me think you have a very shaky grasp of biochemistry and neurophysiology and doubt your competence both as a reasoning human being and a qualified health care professional.

4. Listen to what I mean as well as what I say - When I tell you I don't eat breakfast because I leave for work at 5.45 in the morning, I'm telling you that I don't much want to eat in what, for most people, is still the middle of the night. Suggesting getting up 10 minutes earlier so that I can make porridge? Not helpful!

5. Try not to be too obviously astonished that I am stil functioning -  Being so blatantly surprised that I am still working full time (I know, I know - I'm a miracle!!), in fact even asking the question, does not endear you to me. Richard Feynman was almost 70 when he sat on the enquiry into the Challenger space shuttle diaster and no-one batted an eyelid, and Sir John Gurdon, the 2012 Nobel Prize winner for medicine is 79 so clearly old does not necessarily mean useless or infirm.  At 53, I like to think I can pull off full time academia without causing too much shock and awe amongst the healthcare profession so your surprise confuses me.

6. Do NOT make appointments for me without consulting me - You may think you are being helpful but I do have a life and a job outside of my diagnosis and your assumption that my real life is secondary to your need to evaluate and categorise me is insulting. Also know that, when you do that, I WILL tell you I can't attend whether I actually can or not.

7. SEE ME - Look at who I am, ask me about myself, Amazon has managed to get to know me pretty well and and I spend less time with them than with you. Help me to think about how my life will impact upon my diagnosis (not the other way round, which seems to be how you view it) then tailor your help and information to what I need. I know sticking to your pre-prepared script is comforting and safe but in the long term actually seeing your patients will be much more rewarding.

Poor pain management? I blame Margot......

Without doubt the most significant development in pain management in the UK was the publication, in 1990, of the College of Anaesthetists and Royal College of Surgeons working party report on pain after surgery. It was this report that lead to the creation of Acute Pain Services who would take the lead for improving pain management in hospitals.  Since then analgesic drugs have improved, we have better delivery methods and awareness of the importance of good pain management in a patients recovery has been fully emphasised. So, the question remains – why are patients still experiencing poor quality pain management?

Personally I blame Margot McCaffery. She it was who coined the annoying phrase “pain is what the patient says it is and occurs when the patient says it does”. On the face of it, there is little wrong with this, it raises the importance of believing patients when they say that they are in pain and that can only be a good thing, furthermore it’s catchy and easy to remember – and that is the bit I object to. It seems to me that one could walk into any clinical area in any hospital in the UK and say “Complete this sentence. Pain is what the patient says it is and.....” then brace yourself for the noise of all the staff finishing it off in loud and confident unison. The problem is that although every nurse in the UK knows and believes this statement, hardly any of them act as if they believe it. I think the difficulty if that this short statement has a nice bouncy rhythm, like the old drinka-pinta-milk-a-day or clunk-click-every-trip, to it that makes it easy to parrot and trot out at appropriate time. It has the advantage of sounding clinically empathetic without having to invest a great deal of intellectual effort. Nobody stops to consider that often pain is more than the patient says it is and occurs more often than the patient says it does.  It also implicitly excludes those patients who, for whatever reason, will have difficulty communicating their pain to the health care profession. Thus, despite parroting this annoying little phrase at every opportunity, there is little evidence that patients are believed when they report their pain, significant evidence that certain sections of society and not only disbelieved but labelled as drug abusers when they report their pain, and no evidence at all that a patients previous history of analgesic use is taken into account when prescribing and administering pain killing drugs.

It seems to me that despite all those better drugs, better delivery systems, enhanced prescribing practices and more supposedly patient/practitioner partnerships, pain management is still poor in the UK and it’s all down to McCaffery and her annoying little phrase. Time, I think, for educators and nurses to leave it behind and move on towards genuinely believing what patients tell them about pain and using their not inconsiderable resources to alleviate it.