I have seen calls to treat the person not the disease for years. If you see so many tweets from medics every day as I do, you will see the adage from William Osler almost daily. For some time now, I have wondered what it means. I’ve always found it difficult to describe what exactly it means to treat the person not the disease that person has. Despite medics’ pronouncements, I also wonder (and doubt) whether medics who speak about it do.

When I was preparing to write this post, I have done an internet search for ‘treat the person not the disease’. Perhaps not surprisingly, I was overwhelmed by the results. Page after page, one medic or another has something to say about what it means to treat the person or the patient, not the disease. I read a number of such posts or articles and inevitably, I was (and continue to be) disappointed. Apart from platitudes like listening to the narrative, understanding the context, there is nothing about treating the person.

Let me give you a couple of quotes from two sites I have come across:

Also, you should respect the “golden minute”-that when you walk into the room, you don’t even acknowledge that the computer is there and you just talk to the patient, hold his hand if necessary, look into his eyes, and find out what he is feeling. Another thing to remember is that the patient should be more than the sum of what is appearing on the computer screen. We must honor narrative medicine and patients’ stories, and acknowledge that science is the mind of medicine but humanities are the heart of medicine. (link)

The story includes making the correct diagnosis or diagnoses. The story must describe the patient’s context. Who is this patient? What are the patient’s goals? How might the patient’s personal situation impact our treatment options? (link)

I cannot express in this polite academic blog how irritating such fragments are.  The idea that you can just sit down, your fragrant hands will grab mine, you will look me in the eye, and you will read me like a book is just stupid. All with the ‘golden minute’.  This is medical narcissism and it drives me round the bend. Exactly as the other medic happily announcing he will simply know who I am, what my goals are etc.

Bloody hell, doctors, have you no humility at all? More often than not, your bedside manners are crap, you don’t listen, you don’t even look at me. The whole caboodle about patient narratives is now a fancy way of the time-honoured history taking. And if my experience is anything to go by, you wouldn’t recognise a ‘narrative’ if it kicked you in the arse, and then you wouldn’t know what to do with it anyway.

Exaggerated and generalised, probably, but if I can be spoken about like a medic-smitten zombie yielding to the doctor’s charm in the ‘golden minute’, please do let me pay back. Somehow, I don’t think I am the only patient who manages information they share with their doctors, and if you believe classical work by Michael Burgoon, we, patients, lie to doctors like nobody’s business.

And I really prefer this fragment:

I believe that a patient should clearly understand their diagnosis, the future implications of their disease, what the treatment alternatives are and what the risks of either nonoperative or operative treatment are and how the choice of surgical or nonsurgical management might affect them.(link)

about the person not disease, in which, with some honesty, the medic tells us that we’re really back to square one, except that the patient understands it.

So, instead of marvelling at the physician’s deep blue eyes, the healing hands and walking on water of a every family doctor, let me tell you what treating a person means for me. I discovered it some time ago….

Because of my health, I need to be in regular touch with a doctor. It works fairly well, except that once in a while we have a problem. Not so long ago I was started on a new medication. All would have been fine and dandy, except the medication made me sleepy. A couple of hours after taking the damned thing, I was yawning like wanting to swallow the world and I was barely able to stay awake. Quite often I couldn’t, and at 11 am I would have an hour-long nap. I think it’s clear this is hardly sustainable….And so, I decided to see my doctor and tell them all about it.

To my pain and disappointment, they were unmoved and unsympathetic. Here is my rough and ready and slightly tendentious resume of what I heard:

• • If you feel sleepy, go to sleep and stop bothering me.
  • I’m saving your life here, feel grateful.
  • This is excellent medication; I’ve never heard about anyone feeling sleepy after taking it.

Although I appreciate that feeling sleepy is not exactly a life-altering problem, I’d argue that it is enough to consider it having a significant impact on one’s professional and private lives. Struggling to keep awake at 11 am doesn’t exactly speak volumes about your commitment to work; your ability to have classes or attend a meeting goes down like a lead balloon, and generally, you feel like an old fart who is barely alive. In other words, the quality of your life goes down significantly and you generally struggle

Of course, I started haggling, didn’t let go, we arrived at a compromise which helped, although hasn’t solved the problem completely.  Because the doctor knows I am an academic, I am well-spoken, they grudgingly moved from refusal to a sort of acknowledgement something must be done. I can live with the compromise.

The point is, however, the utterly biological view medicine wins, hands down, there’s not even a sliver of active acknowledgement that I do have a life, let alone some sympathy or empathy. In other words, what really bothers me is the reduction of me to a body that needs to be maintained by medication and nothing else matters. And the arguments that I must be awake for my job is met with a ‘nothing to do with me’ sort of message.

Now, some of you might be tempted to think that British medicine is lightyears ahead of this. It certainly it is, well, at least in its declarations. I cannot remember a British doctor who stopped to consider the issue from my point of view. Things like, will I put on weight, will I fart (e.g., statins are known to produce this unfortunate side effect, and yet, no one has ever discussed it with me), will I be inconvenienced by precise times of taking the medication? Although what always got me was talking about my weight after the onset of chronic fatigue. You know, I exercised for 27 years, and exercised hard. Before ‘it all started’, I had 6-8 sessions a week (but sometimes 5, sometimes 11). Stopping cold was extremely difficult and, of course, it meant putting on weight. I’ve been struggling with the weight ever since, as it continues to be a choice between not exercising and falling apart after exercise. But what is really infuriating is that putting on weight has always been commented on negatively. I am wrecking my body.

It’s the body that counts, not the suffering the person endures every day (I’ve been in pain for six years or so now, and it seems medicine is yet to care about it). Here, when I talk about chronic fatigue, they either don’t know about it, or say: but can you just grit your teeth and go exercising (I want to scream!). Again, it’s the body that counts.

And this is for me what it means to treat a patient. It’s about what treatment means, what it means to me, how I weave it into my ‘life narrative’ and then how it changes within it. It’s not about sophisticated platitudes about social context (which obviously you decide what it is) and the word ‘biopsychosocial’ said in every other tweet you write. It is about how I (not you) incorporate what you do (ideally, what ‘we do’, but let’s not kid ourselves here) into who I am, what I do, and how I make sense of it will. If you understand what things mean for me (and, please, spare me the ‘what matters to you’ question) you will begin to treat me and not the disease I have.  (Here I wanted to write yet another rant about ‘the art of doing nothing’ that every other medic I come across boasts about implementing. It’s because, you know, there is too much medicine. And I am yet to meet one who will try to understand what doing nothing means for me. But I thought the post would be too long and I had written about it before.)

I don’t think I have ever met a doctor who focused on me, but a few tried very hard. But I do  appreciate it’s not easy. Looking at the world through someone else’s eyes is hard as hell, especially, that you have a computer screen in front of you and the screen does take precedence*). But you could, once in a while, perhaps just ask (I would consider answering), or just pause and think.

*) Note that in the first fragment I quoted ignoring the computer is presented like something extraordinary. I’ll leave this without a comment.