Shared decision making & patient empowerment

By Tatjana van der Krabben

Names and figures are lacking here and there, which I didn’t get around to copying that day. However, this doesn’t affect the thought behind this blog. Also, the opinions and goals expressed at the congress stem from the Dutch healthcare system with mandatory health insurance and significant coverage as it is, compared to countries like the U.S.A. Therefore, I aim to limit myself to mechanisms and thought processes that translate more widely.

It takes 2 to tango, Duet between patient and care provider, congress by NLNet
Image by NLNet

Saturday I attended a congress on lipedema and lymphedema by NLNet, Dutch foundation for lymphedema and lipedema patients. About 200 people attended, both patients and therapists, as well as a few specialists. However, this time I can’t offer you the habitual overview of new research and insights. The theme was entirely different: It takes two to tango – debates between patients, care providers and health insurance regarding patient care. More specifically: (the feasibility of) shared decision making, a situation where the care provider and patient go over treatment options together and reach a joined decision on the course of action to be taken.

Self-management of chronic conditions

The outline of today’s healthcare for chronic patients is that the main focus of care is on clinical healthcare and only a small portion is reserved for self-management: an upside down pyramid. The aim is to topple the pyramid for chronic patients and make healthcare more so about self-management.

After that statement there was some uneasy shifting in chairs and sharp whispering, because we can all see the danger in that: being sent home with a few tips and tricks, being told to do your best and that would be that. Essentially what we already have when it comes to lipedema. But the speaker clarified that should also imply the majority of funds would also go toward facilitating self-management. Now we’re talking.

The need to shift more toward self-management makes sense to me. Healthcare in hospitals and clinics is largely cookie cutter healthcare targeted at immediate issues and has only so much room to provide individual, long term care. Also, as research shows more and more, a lot of issues can’t be fixed with a pill, a shot or surgery. A lot of it is about exercise, diet, adapting. Things you can and need to address in everyday life.

Shared decision making in health care

Ideally, the care provider and the patient would both go over the different treatment options. The patient would give feedback. Together they would decide on a treatment plan. The thought behind this is that patients feel more content with the outcome and are more inclined to stick with the prescribed therapy as intended when they feel heard and were given the opportunity to voice their own views and experiences.

Reality is a very unpleasant lady

Mind you, to prove the use of shared decision making, research in the context of treating lower back pain was presented. See where I’m going with this? Charted conditions with multiple treatment options are ideal for shared decision making in healthcare. Lipedema is neither fully charted, nor are there multiple treatment options. Well, there are, albeit not comprehensive, but they are not offered everywhere, let alone widely known and covered.

Like many from the audience brought forward there’s another complication. You need empowered patients. When the patient is still in the learning stages, just after diagnosis, it’s a lot to ask of them to provide input on the best course of treatment for them. You also need doctors willing to listen. Not only listen, but also willing to present you with the best treatment options, not push something on their patient. Oh, and time. How often do we feel rushed through our consultations?

Many patients indicated that they felt that a suggested treatment was not always in their best interest. The speaker in question was a little shocked. She saw these reservations in terms of greed and such unethical issues. That was too big a leap if you ask me. I mostly see a more subtle process influencing the outcome of your consultation.
When you see ‘a’ dermatologist, for instance, that dermatologist has certain specialties. Can’t be avoided. Nobody can be trained for everything, even in a relatively limited area of expertise. That and the facilities that clinic may or may not have will  influence the treatment options offered. He or she may have just been trained with a nifty new procedure they think highly of and you happen to walk into the office while he/she is aching to stumble upon a good candidate. He/she offers the treatment. Had you walked into that office a month ago he/she wouldn’t have. Is that bad? Not per se, but things are not that independent as implied. We’re all people, bringing our individual views, training and experiences into the room. This applies to both care providers and patients. The less charted the condition, the trickier this ‘dance’ gets.
I also think patients raising the issue of not getting the best possible care hinted at liposuction. The Dutch lipedema guidelines present it as a last resort type of option. It’s covered only in very few, extremely well documented and severe cases, and only when prescribed by a handful of specialists in the country. Patient perception often is that they’re aware of this treatment option, feel like crap and are convinced that their prognosis with liposuction is much better. Yet, it’s not being offered to them. Not quite the same dilemma as the lower back pain case shown in a video where the options physical therapy and massage therapy were debated, but where the predicted outcome would be pain relief either way.

Evidence based care and Patient Reported Outcome Measurement

The liposuction dilemma led us straight into a new fiery dance: not evidence based. Not yet. Not even manual lymphatic drainage is considered an evidence based treatment! As it turns out the therapists’ best efforts and practical attitude to accommodate us with tailored treatment makes it challenging to quantify what they do. You can’t add up or compare apples and oranges.

Research is key. Here we go again, but the speaker on behalf of the health insurance companies did offer another option: Patient Reported Outcome Measurement (PROM). PROM type of research is about the patient’s experience with a treatment. They evaluate and score the effects. Now, before you bring out your personal spreadsheets, like I know many of you have, this does need to be formalized to make it count. Or else it’s apples and oranges all over again. What happens when you need to formalize stuff? Exactly, our DIY measurements suddenly cost money to make it happen. One of those ‘oh…’ moments. However, the speaker did see room for patient organizations to make this happen. Patient organizations generally move faster than formal bodies and institutions. Also, patient organizations are trained to make things happen on a budget. PROM as a method to gather data on treatment outcomes could definitely be thing.

A doctor’s two cents

That leaves the good doctor. There’s some nuance here, too. Like explained, the doctor can be enthusiastic about a treatment all he wants, if it’s not evidence based, his/her hands are pretty much tied. Like with liposuction in the Netherlands: permission has been given to specific specialists to do a small scale experiment. Those treatments are covered. The experiment status is the loophole here, but only for a very limited number of patients.

I also loved this quote by a doctor: "Clinical experience does not lead to improved communication."

This doctor, not present, only quoted, argues doctors need training when it comes to communication, if we want to move toward shared decision making. A specialist present brought in that we should speak up, not feel intimidated. “We don’t bite”, he said. “It’s not the patients that give me a burn out; it’s the rules, regulations and paperwork.”

This sort of thing is good to hear. The gap between patient and care provider if often not as big as we perceive it to be. Don’t dismiss your doctor before you’ve even invited him to the dancefloor.

What I got out of this day

Research matters. It’s a bit of a pet peeve of mine that a big chunk of the lipedema research is about treatment, while we don’t even know exactly what lipedema is, what causes it and what causes it to progresses. That’s like playing darts blindfolded. However, we need that type of research to get treatments covered or even to have doctors willing and able to prescribe the treatments. We can’t go without any and all treatment until we finally figure out what it is. I see that now. But to sum things up: research. We need more research. We qualify as a ‘small domain’, according to health insurance companies and all those with influence in this debate. We’re not a small domain at all, but, again, we need research to even prove that. 

Research, research, research, or we’re screwed for another generation. Could PROM be a fix for that massive gap we need to bridge? Well, it’s an opening. Until then I largely see shared decision making as a lovely ideal. Because with few evidence based options there’s little to share, let alone to decide. Oh, wait, hold on, more support for self-management for chronic patients is music to my ears. For sure!