Making the “right” decisions about your treatment or lifestyle when you have a chronic illness, like sickle cell disease, can be a difficult and fraught business. A recent article in the British Medical Journal “Flipping Healthcare – Turn Your Thinking on it’s Head”, and an inspirational young man, Trevor Torres, give some really interesting insights into how doctors and other healthcare professionals, working together with their patients, on the basis of trust and equality, can really make a difference.
The BMJ article is all about making the patient the centre of the healthcare effort. You might think this is pretty obvious, but in so many ways it just does not happen. Actually, it is usually the disease, sickle cell, or the bureaucracy, the hospital or GP surgery, around which everything seems to be organised, not the patient. Hence the title of the article, “Flipping Healthcare” – we need to turn healthcare upside down so that the patient really is at the centre of all our efforts. Now that is a big undertaking and involves understanding the whole range of issues which affect an individual’s life and how they cope with their illness – psychological, social and economic as well as the obvious health problems. In the sickle cell community, at least in the UK, we are generally not too bad at doing that, but here I would like to focus on what “Flipping Healthcare” means for the relationship between the patient and their doctor, and how this can make the difference between success and failure when it comes to implementing a plan of treatment.
Doctors are taught in medical school how to take a history from a patient, make a diagnosis and come up with a treatment plan. That’s all very well, but when we ask “What’s the matter?” we often forget to ask “What matters to you?”. If health care is to be truly patient centred, then we need to know and understand what the patient thinks is going on, what their goals and ambitions are, and how on earth they think they are going to have a life and cope with their illness at the same time. The tragedy is that unless we, as health care providers, are willing to look at things from the patient’s perspective – meet the patient where they are at – then all our efforts to persuade them to go along with a difficult and sometimes unpleasant plan of treatment are likely to fail.
So,what aspects of the doctor / patient relationship need to change to begin this “flipping” process? Much of what follows is indebted to a young guy called Trevor Torres, who has diabetes, and who describes himself as a diabetes evangelist. The factors he identifies as critical to a successful doctor / patient relationship apply just as much to sickle cell as they do to diabetes.
Well firstly, any patient with a chronic disease like sickle cell, needs information. The first priority of your doctor or health care provider should be to make you the expert in your condition. That sort of in depth knowledge is the essential first step if the patient is to be an equal partner in their own healthcare. But this is not straight forward and is certainly not just a matter of being given an information leaflet at your first appointment and that’s that.
No one is the same or has the same level of scientific background and therefore the information must come in a variety of forms to ensure that the message really does get across. Nor is it just a matter of one conversation. It is a commonplace to say that education is a life long process, but that is certainly true of chronic illness, where there is always something new to learn about the condition and how it affects you. Question and answer sessions are often the best way of learning and, since it is the patient who asks the questions, it means that the learning experience is tailored to their specific needs. And it doesn’t have to be face to face, using texts or e-mail is a quick and convenient way of picking up additional information and getting your questions answered.
Having acquired the expertise that you need the next big thing is to “stay positive”. Trevor has some important things to say about this.
“Stay positive” is a bit glib, easy to say – difficult to put into practice all the time. But it is true nonetheless that maintaining a “can do” attitude is vital, without that positive boost it’s easy to sink into a swamp of negativity, when even the simple things become more and more difficult to achieve. Try Trevor’s trick – whenever you achieve something that is cool or awesome, give yourself a double dose of praise. Not only did I pass the test / get a job / have a good night out but I did it AND I’ve got sickle cell!
So, there you are all knowledgeable and fired up with positivity, but unless your doctor or specialist nurse has the right “patient centred ” approach you are likely to walk away cross and irritated having failed, between you, to come up with a treatment plan that works for you. What are the key feature to look out for in the approach of your doctor that will maximise the chances of a successful outcome?
Well the first thing is that they should not be condescending or talk down to you. You are an equal partner in this endeavour and should be treated as such, with respect, at all times. No one likes being made to feel stupid and, if you are you are made to feel small, you are very unlikely to stick with the treatment recommended.
They should not be dictatorial, meaning that it is not up to them to tell you what to do. You should be the driver of your own healthcare. Your goals and ambitions must inform the discussion. Any plan of treatment should be tailored to your particular lifestyle, it might not be absolutely right but you are much more likely to stick at the treatment if it doesn’t interfere too much with the other things going on in your life. To paraphrase Tim Ferris -“Substandard treatment actually adopted is infinitely better than perfect treatment which is ignored”.
Before committing you to any new treatment or management plan your doctor should therefore ask “Do you think you are going to be able to carry this through?” and if the answer is no, then it’s back to the drawing board to try and find a way to make it possible for you.
You should expect straight talking at all times, no evasive half truths, and there should be no surprises. You should be well prepared for all the possible treatment options your doctor might suggest. Also, don’t feel that you need to agree to something straight away. Most people when they have an important decision to make need time for reflection and perhaps discussion with family or friends. But then you don’t have to delay things until your next appointment, which might be months away. Your doctor should be willing to use text or e-mail to answer any new questions you have to help you make up your mind.
Which brings us to the final key function of your health care team, they must be freely and easily accessible, so that you can engage with them whenever you have a question or problem – if you like we should make it possible to have a process of “continuous communication”. At the moment, communication between us is mostly restricted to intermittent outpatient clinic appointments which might be months apart. For the patient to be truly at the centre that clearly has to change. Putting systems in place to allow “continuous communication” will then mean that you can practice “dynamic self-management”, allowing you to change or modify your treatments to cope with the inevitable changes in your life, but always with expert advice on hand to support you. These communication systems will vary from place to place but may involve emergency telephone contact lines, texts or e-mails or social media web sites. Whatever method is chosen must be reliable and responsive.
This wish list may all sound a bit far fetched and too good to be true but it is important to have something to aim for. “Flipping” healthcare will involve a big culture change on the part of healthcare professionals but you, the patient, also have an important role to play. Take the opportunity to do a bit of teaching yourself – it’s not only patients who have to learn – tell your doctors and nurses how you want to be treated and dish out the praise when they get it right! Learn as much as you can about sickle cell, discuss things and ask questions, above all stay open to new ideas and ways of managing the condition.
Flipping Healthcare. Maureen Bisognano & Dan Schummers. The British Medical Journal, 1/11/14, volume 349, pages 16-18.