What is your worldview of MS?
Back in 1982 when I was in 1st-year medical school I had the good fortune of being taught by Professor David Hammond-Tooke, an eccentric social anthropologist, whose task was to make us view the world from different cultural perspectives. I was living in apartheid South Africa and Wits, a liberal English speaking University, wanted its medical graduates prepared for work in a multiethnic world.
Professor Hammond-Tooke was a ‘Worldview Expert’, who had studied the role of traditional healers in Africa. He made it clear in his first lecture that the shaman, witchdoctor, sangoma or traditional healer was a very important part of African culture and African people’s lives, and that we should have nothing but respect for them and the role they play in sickness and in health.
We were taught that the traditional healer had evolved to address the psychological and physical needs of the individual, the community and society at large. Although Hammond-Tooke implied that the methods of the traditional healer were ‘non-scientific’ it was obvious when we met them and were exposed to their practices, later on in our medical training, that they practised their art using tried and tested methods, passed down from generation to generation. To be honest it wasn’t until about 70 years ago with the emergence of the ‘scientific method’ and more recently ‘evidence-based medicine’ that ‘Western doctors’ were nothing more than traditional healers, practising anecdotal medicine that today would surely be labelled as being alternative. Blood letting is the first example that springs to mind. The worldview of my predecessors was not how I view medicine and neurology today. The biological knowledge as it applied to medical practice today was very rudimentary 70+ years ago.
The traditional healers role was to help the individual and it citizens make sense of the predicaments they found themselves in. These predicaments weren’t always disease or sickness, but often personal or family misfortune. One of the qualities of being human is to seek out explanations for the unknown. Have we changed because of modern medicine? Obviously, not! Individuals still seek out answers and explanations based on their own worldviews and modern doctors need to understand that there are alternative worldviews of MS, in comparison to their own, and these worldviews can be fluid and change over time. Failure to identify with alternative worldviews may have consequences at several levels for people with MS and society at large. Recent examples are the CCSVI epidemic, alternative natural or lifestyle therapies and the role and place of HSCT in the early treatment of MS.
Another change that has occurred with the development of the internet and the web has been a democratisation of knowledge. Gone are the days when the doctor knew it all and was the only person who could make decisions. Patients and other healthcare professionals have skilled-up and know a lot about MS; in some situations patients may even know more about MS than their neurologists. This is very challenging for some neurologists who have a more traditional Western medical worldview of neurology and its practice. In other words the neurologist is now not always best placed to make decisions about their patients. The new art of medicine is to know when you are needed to make decisions or when you are only needed as a guide to help your patients make their own decisions.
This is all well and good, but what happens when there is a clash of cultures or clash of worldviews. What do we do then? How do we reconcile widely differing worldviews of a similar problem? For example, one neurologist may think his/her patient has active MS, but an overall a good prognostic profile, and they may want to start them on a moderately effective platform therapy. In comparison, the patient who is an avid researcher and a voracious reader is adamant they want HSCT. What do you do? Do you say no, knowing that that patient will find a way to be treated with HSCT at great cost and personal sacrifice abroad? Or another neurologist may want to start a patient on a highly-effective treatment because the patient’s MS is highly active with early disability and evidence of end-organ damage. However, this patient does not agree with the neurologist’s assessment of things and wants to try an alternative lifestyle approach to manage their MS. This patient is also very knowledgeable, having read widely and sort outside opinions, and has come to the opposite conclusion of the first patient in that they think these DMTs are simply too dangerous and will interfere fundamentally with their immune systems that will have unpredictable consequences and will put them at risk of developing other iatrogenic problems (problems caused by the treatment). This second patient is more accepting of the potential outcome of their MS and is prepared to become disabled if that is what is destined to happen (yes, there are pwMS who are prepared to become disabled). What is more important to these people is how they live their life and how they treat their body.
How we reconcile these extreme and disparate worldviews is difficult. One way is a negotiated settlement with compromises. For example, I will put your case forward to the multidisciplinary HSCT team and see what they say. If they refuse to accept you onto the HSCT programme because you are not eligible we could challenge their eligibility criteria or ask them to make an exception. The other option is to try one of the other high-efficacy DMTs in the interim whilst we try and get the HSCT eligibility criteria changed. We will need to ask the MS Society and other important stakeholders to help. For the second scenario, one could try the complementary medicine approach rather than the alternative medical approach. Or you may negotiate to review the disease activity after a period of time to see if the alternative approach is working. Time, patience and a negotiated position can build trust. Showing you care and are non-judgemental helps. The other is to provide cases studies of other patients who have done well and others who have not done so well with alternative therapies. It is important not to turn the advice you are giving into ‘project fear’. Explaining that MS is an unpredictable disease and that it needs personalised treatments may help. The important point is not to stop caring and to treat the patient as if they are just another one of your patients on a specific MS treatment and ask the same questions. Be it a negotiated compromise or an unchanged treatment strategy you need to be there if the patient needs help in the future. I have seen too many pwMS, who decide to go the alternative treatment route, who are discharged without regular follow-up, who are then referred back years later very disabled. In comparison, I have had many patients who change their minds when they see how MS is affecting them and are prepared to complement their lifestyle management programmes with licensed therapies. Providing these patients with a safe and caring environment to allow them to change and adapt their worldview is what is important.
As I am writing this post I am re-learning the lessons taught to me by Professor Hammond-Tooke. To understand and be accomodating of different worldviews.
To get a handle on the many different worldviews that permeate the MS space would you be prepared to share yours? We need to know who you are and to get four statements, or adjectives, that sum-up your worldview of MS? I will then put these together in the form of an online slideshow to illustrate how diverse, or similar, we are. To participate you also need a descriptor to let us know where you are coming from.
I have put together a few examples, which will hopefully stimulate you to add to the collection. Please don’t be shy you may have many different perspectives and are welcome to add additional perspectives. As the slide show grows so will our understanding of each.
Thank you.