The HIV/AIDS epidemic is a shining example of a successful response to a complex social problem. The creation of AIDS counsils by the members of gay, lesbian, sex worker and drug user communities who were hit hardest by the epidemic created a groundswell of community action, which gave impetus to governmental and non-governmental organisations to collaborate on sustainable solutions. The period is characterised by grassroots action, rather than a top-down approach, and a high degree of partnership between all level of stakeholders (Ref). This is a history you cannot say many other of our modern-day epidemics share.
The number of people currently living with HIV/AIDS is 37.9 million, which is dwarfed by the point prevalence of Low Back Pain (in 2015) of 540 million (Ref, Ref). Low back pain is a different and arguably much more complex problem, but it is helpful to draw parallels to successful solutions rather than proceeding blindly into the unknown. This blog will discuss the problems with the unwavering medical paternalism in managing this burden and explore the potential of a different approach.
Pain and suffering
Pain and suffering are two distinct, albeit highly related, identities. This is an accessible, very intuitive concept, even for the lay person; think of the young man who stubs a toe in comparison to the widow suffering through intractable heartbreak at the loss of her spouse – both are obviously in (different forms of) pain, but one is experiencing significantly more suffering, and it doesn’t take a rocket scientist to figure out who would benefit more from support. The ability to act in a ‘common sense’ fashion towards pain and suffering is a basic human function. It is something, however, that has wholly and solely become the role of the medical and healthcare system in recent centuries. The overt medicalisation of pain has been a fortuitous advancement in many ways, but many of these advancements have not lead to a reduction in suffering. In fact, we have had a steady increase in suffering and disability through this process; we have medicalised pain and watched by as mass suffering occurs (Ref). We have been able to produce more and more advanced ways of treating pain, but this has caused more disability, not less. Is this not evidence enough that our medical paternalism has ultimately failed the test of time in solving this massive burden of our time?
Pain happens within and amongst people; it has vital social aspects. Our medical and healthcare system tends to remove this vital human aspect of the phenomenon. What would you do to alleviate the suffering of the widow from the example above; you would talk and empathise with anyone suffering to this degree because it is a natural human response. In fact, you probably wouldn’t care to spend a fair length of time with this woman because you know, intrinsically, that the time you are giving her is valuable; it means something, it heals. We have a medical system that provides our health care providers a model that is all but void of this valuable resource. Time is in short supply; human interaction is lacking and our medical system ensures health care providers work to the rhythm of their diagnostic-curative drum. Musculoskeletal medicine has followed other disciplines down this winding biomedical road, much to the detriment of our patients. The model seems to have separated itself entirely from the most important element of pain and suffering; the social aspect. We have become very ‘sophisticated’ at treating pain, but we have failed to do anything meaningful about suffering. Our model has failed those it was designed to help.
Our model and systems are not only unfit-for-purpose, we also have a systemic under-appreciation of the social aspect of pain and suffering from translational research and policy. There is some data on what non-biomedical areas are most pressing to low back pain patients, of which specific social support is important (Ref). This is unfortunately rare and exploratory. There is a vast well of untapped potential amongst the community, who can not only shed a different perspective on the lived-experience of pain, but also be instrumental in co-designing a solution to mass suffering. We have forgotten the social aspect; the human aspect of the pain burden is an under researched, underappreciated and under-utilised component of musculoskeletal healthcare.
Paternalism is characterised by physicians making decisions for patients, in their best interest. It is characterised by doing things to patients rather than with patients. Surgery is an example of something done to patients and one that typifies ‘the end of the line’ for our biomedical model of healthcare. We have learnt that surgery for selected conditions in the areas of low back pain, knee pain and shoulder pain fails to make a meaningful impact in not only pain, but also disability and are also associated with significant risk to the patient (Ref, Ref, Ref, Ref). The evidence base investigating the true value of surgery seems mounting for selected conditions, but to be clear this is not a discussion on the merits or detractors of surgical interventions. This argument can’t be limited to surgical interventions only; although not associated with the same degree of (life-threatening) harm, other components of our modern-day healthcare system – of which conservative care is a part – is categorically poor at considering the patient perspective in any meaningful way (Ref, Ref). The approach of making decisions for the patient and removing their perspective from the process of care is what characterises paternalism and is what has characterised musculoskeletal care for centuries. Patient centred care may be a step in the right direction, but power imbalance is baked into our system of healthcare and to be clear patient centred care is still a product of this system. Is it time we take a leaf out of a successful approach to a problem – the HIV/AIDS story – and turn to our communities and our patients to determine the next best step? Instead of us determining what is best for those suffering from pain and continuing to search for a solution, should we instead ask them to become part of the solution?
While the medical system has not been doing a great job of managing this problem, what can’t be the solution is yet another false dichotomy where the medical system should absolve its responsibility to contribute positively to the pain burden. This should be a truly collaborative process, which is informed and influenced – at every level – by the patient. The patient is the consumer of healthcare but currently they largely struggle to have an informed, equitable say in the care they receive. We need a trusting and collaborative relationship to create care that is appropriate for all consumers, and this first begins with stepping down from a paternalistic position. There a few examples of consumer advisory groups bringing another perspective to care (Ref, Ref, Ref), but these are rare and don’t seem to percolate through the levels of power necessary to make a meaningful impact on policy and decision making. These groups don’t seem to have an equal stake in how care is offered, they lack a seat at the ‘C-suite’ table, maybe they are still outside in the waiting room. A medical solution to our pain burden should include these voices, not just at a tokenistic level, but to create a truly collaborative system from the bottom-up. A grass-roots solution and community voice is going to help us get to more sustainable and appropriate solutions to the pain burden; it’s not a dichotomy at all and it really can’t be moving forward.
Creating an informed consumer
An equitable and trusting collaborative approach to solving the problem is great in theory, but in practice it would be an incredibly naïve thing to rush at. Healthcare is an inherently disempowering experience and the route cause of this power (like many power imbalances) is information. To have a real conversation, we first need a system of information exchange that actually contributes to the end goal for each party. We first need a shared language and a dialogue that contributes to both parties being similarly equipped to discuss key issues. Health literacy is an important step, but like any language, just being literate may actually contribute little to the eventual success or failure of a conversation. In creating an information exchange so far, our approach to patient education has – in itself – been a rather paternalistic exercise. We have asked our patients what they need from treatment, but once again, this is predicated on a patient’s ability to adequately navigate what is a confusing and homogenous system. This is rarely the case, and what isn’t even clear is that if we have a health literate populace, will we see this transfer over in the ability to access, navigate and make sense of healthcare (Ref). A system of information exchange will need to rest on having some basic discussions about shared values and outcomes. Once again though, this probably isn’t the entire picture and we can logically assume that the entire picture wouldn’t be clear until we travel some ways down the road. It first starts with travelling down the road together, and asking some hard, but basic questions in the search of an informed consumer and an equitable partnership.
We may not appreciate how far we need to go to create an equitable and just consumer voice, and how deep the paternalism problem really extends in healthcare. There may be multiple layers, we need to unpack before we get to a point where we are ready to embark upon a journey together. Everyone would agree that the pain burden is unacceptable, but most of us continue to do what we’ve always done. We have a system that is categorically poor at inclusivity and acts in a top-down manner; this has not worked. The paternalism problem in pain is deeply engrained and although we may provide patient centred care, how equitable and sustainable are these episodes or solutions? It is time a real partnership is created and this begins with some hard conversations. An informed consumer is a long way off in the value-based healthcare discussion and we probably have a lot further to go than we would all care to admit.