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Healthcare communication

30 September 2015

I previously posted about my first MS episode, when a neurologist (not my current one!) suggested I was legal to drive, even though I couldn’t tell whether a car was moving or not when I looked right at it.  A lot of crazy things get said in a healthcare context!  And a lot of really important things go unsaid, too.  I don’t think anyone has articulated this better than one of my favourite bloggers, Dr Kate Grainger, who was diagnosed with terminal cancer in her 20s.  I encourage you all to read her words about why she became an advocate for improved communication in healthcare and started the “Hello, my name is….” campaign.  This campaign highlights how vital the “simple” courtesies are for making the person seeking care feel safe, respected and valued. Haven’t we all noticed the difference it makes when a nurse takes the time to introduce themselves at the start of their shift and have a friendly conversation, however brief?  

Although it can be extremely difficult to be an effective self-advocate when unwell, good communication on both sides is critical in all sorts of healthcare decision making processes.  If I don’t articulate my priorities as a patient, the people trying to look after me are likely to get it wrong.  And if they don’t explain clearly their side of the equation, I’m not likely to make the best decisions nor to be satisfied with my care – whether or not it has been of the highest possible standard. It can be illuminating to have opportunities to observe the communication process from a patient perspective after half a lifetime of being a healthcare provider!

There are times when I look back and laugh at what I think I heard said to me (the comment on my driving ability is a good example!) and times when I have been left completely confused in my patient role.  I’ve mentioned before  that no one ever named what was going on when I was busy being diagnosed with MS – I can only guess that it was assumed everything must have been clear to me, given my own medical background.  It was a soul-destroying experience to inject a disease modifying drug for over six weeks without being clear on whether or not I had confirmed MS. I really wasn’t sure. Maybe they were offering me treatment to prevent a first episode from becoming definite MS?  Can a first episode go on that long and require multiple courses of IV steroids??  I turned the dilemma over and over in my mind for weeks before I got up the courage to actually ask my neurologist what my diagnosis was.  I really needed to know, so I’d have something concrete to tell my family and friends!  I’m not sure who was more embarrassed; me for having to ask such a basic question as “Do I have MS?”  or my neurologist when he realised he’d not made my diagnosis clear to me when he wrote the first script.  We both learned something from that conversation!  He’s been truly fabulous about explaining things to me ever since then, and I think I’m better these days about asking questions when I need things clarified.  Now, after more than a decade of practice, I think we’ve got our communication skills much better sorted in both directions!

I like to think that I may have become a better physician through my experiences of being a patient.  One of the areas where I’ve really changed my approach is towards the “routine six month visit” for the person who’s basically doing well with a chronic illness. These days I am acutely aware of how I feel leading up to my own routine reviews with my neurologist.  How the appointment assumes an almost unreal importance in my calendar.  How I think about what questions I may have and wonder over and over how he will assess my progress when he sees me.  How I am torn between wanting to hear him say I am doing well and wanting to know that he understands how MS impacts my life, despite how “normal” I look to most people.  I rarely sleep well the night before an appointment!  So when I see my own patients for their “routine” reviews, I now try to see that appointment in the way I imagine the patient may view it – as one of the more important half hours in their life.  No matter how crazy a clinic turns out, I do my best to give even my most “unaffected” patients time to discuss the things that are important to them.  And when I see my long term patients who are doing really well, I am careful not to assume that their outward success in managing their health is necessarily reflected in how they feel.  Most of those reviews now start with things like “Your recent results are excellent and you look great from here – but how are you feeling?”

When I introduced myself, I wrote that I don’t think my patients have any idea that I live with MS.  That’s true, but several of them have noticed something.  I hope it’s something positive when they sometimes say things like “It’s really nice to speak with a doctor who ‘gets’ what it’s like to live with a chronic illness”.  Like most people, I have a lot still to learn about how to communicate really effectively – whether at work or outside.  But I suspect the experience of being a patient is one of my better teachers!



The Unaffected One



Comments (7)

I am glad you are compassionate and generous with your limited time TUO. Just a question you may be best to answer through your unique position, and which is pertinent to your thoughtful posting. I was prescribed a wheelchair without any follow up, and appear to be developing contractures from its use. When I contacted the supplier and asked why I hadn't been warned in any way about the risks of wheelchair use (of which contractures is only one), their answer shocked me. They said that was the job of my clinical team. Ha! I was laughing through the tears. My wife got an American book which refers to a 'multidisciplinary team' in MS. There is a diagram, with the patient at the centre, and all these skilled professionals revolving around them. At the top is something called care coordinators!!! These people are not GP's, but apparently take overall responsibility for patient outcomes and the team pulls together and discusses your progress in order to pre-emptively maximise your health outcomes! So here is the question: Does such a model of care exist anywhere in Australia, and how does one access it to receive proactive whole-of-life MS care in this country, or is that just crazy talk?

What a terrible experience! I'm really sorry to hear about that one, and I really hope you can get some more holistic care soon. In terms of the question of where can we get the best "rounded" MS care in Australia, I suspect (as with many things) there are advantages to living in a major city. Certainly in Melbourne we have several public hospitals that offer multidisciplinary MS clinics. I'd suggest calling you local MS organisation to find out if such a clinic exists in your area. I don't have personal experience of what sorts of team members are involved in wheelchair education and follow up, but I have several friends who have gone through such a process and it has been a lot more involved than simply a prescription - with physio and occupational therapy staff involved in the process and efforts made to avoid the sorts of complications you describe. I certainly expect plenty of assistance, education and follow up if I ever need a mobility aid of any kind! If that sort of help was not offered where you get your MS care, I'd be asking for it - and I'd seriously consider moving my care if they didn't understand what you need! I suspect there is nowhere (including in America - I have spent time in a major MS clinic over there while visiting a colleague and I can assure you they are not perfect!) where every person with MS gets absolutely every aspect of their care provided perfectly - but there are certainly clinics right here in Australia where we are viewed as whole people and given pretty decent holistic care, within the limits of the resources available. That is what I expect (and generally what I get) from the hospital I go to.

Thanks for this post TUO! I can definitely vouch for the bit about not being"an effective self-advocate when unwell" - that was me last year! I guess it's easy to expect that doctors will have all the answers, although I've always been the sort of patient that provides as much information as possible in order to assist with diagnosis. I suspect though, that my biomedical background can be confronting for doctors when it dawns on them I'm very familiar with medical literature, and in some cases, more than they are. I've certainly learned lessons from last year! In any case, I do have to say that post-diagnosis I probably spend more time now worrying about my Multiple Offspring than my Multiple Sclerosis, and now my doctor's appointments have become far less of a big (or)deal. Then again, all I'm asking for is a script refill these days, so it's a matter of staying the course rather than elucidating the origin of weird symptoms...

Thanks Sarah! It's so easy to judge the other person in the "conversation" when misunderstandings happen, isn't it? And it's been a learning experience for me to see how easily BOTH sides can get it wrong, with the best intentions in the world! I'm glad you've moved on to a part of your life where the doctor appointments are less stressful than what you experienced last year - to feel so un-heard at the same time as being unwell must have been horrible!

Communication is so important. I have no doubt you are a better physician because of your experiences as a patient. Great blog. :)