Participatory Medicine and Why You Should Know About It

Amy Romano, CNM, posted a while ago on her blog about the "new" concept of Participatory Medicine, and recently commented on it again.

I've been ruminating on this topic for quite a while now but just never got around to finding the links I needed to finish the original post. 

I think the topic still bears commenting on, even if it's not a very timely response to her original post.  This is what I originally wrote, adapted and re-edited recently. 

Participatory Medicine is a new paradigm in healthcare that has particularly resonant implications for childbearing women and for people of size. 

Here's the definition of Participatory Medicine from the e-patients website:

"Participatory medicine is a cooperative model of healthcare that encourages and expects active involvement by all connected parties (patients, caregivers, healthcare professionals, etc.) as integral to the full continuum of care. The 'participatory' concept may also be applied to fitness, nutrition, mental health, end-of-life care, and all issues broadly related to an individual's health. The Society was founded to learn about and promote Participatory Medicine through writing, speaking, social networking, and other channels."

Participatory Medicine is really nothing new to us in the birth activism movement, nor is it really anything revolutionary to those of us in the Health At Every Size (HAES) movement. Both have been advocating patient collaboration in their own care for many years.

But even so, this movement formalizes what we've been saying for years and is definitely something we should be paying attention to.

Those of us who have had children know how often we have faced condescension from caregivers about the idea that we could become knowledgeable about and have a say in our own children's births, and those of us who have tried have frequently faced a great deal of resistance.

And those of us who are people of size know how often we have searched for a provider who could see beyond our weight and into our individual circumstances, who understood the starkly unlikely chance of permanent weight loss, and who was willing to shift their care paradigm from a weight-centered model to a health-centered model instead.

Participatory Medicine and Birth

Here's a link to Amy's post to the Participatory Medicine site, proposing that maternity care is the perfect place to start as an "e-patient":

http://e-patients.net/archives/2009/09/a-lifetime-of-participatory-medicine-can-start-with-maternity.html

Basically, it's what many of us in the birth movement have been encouraging for years....empowering patients to do their own research, question their healthcare practitioners, look into alternatives, find a new provider if needed, make decisions in partnership with healthcare providers, and take responsibility for their healthcare decisions. Only now it has an official "name" and a whole movement behind it.

Of course, some doctors are threatened by the Participatory Medicine model. In particular, obstetrics providers seem to be extremely threatened by it, partly because of the vulnerability to litigation they feel in this field, and partly because of the high level of paternalism and misogyny in the field (even from women physicians). 

Participatory Medicine has been going on in the cancer field for years (see the story of Intel's Andy Groves' experience with prostate cancer years ago) and is fairly accepted there now......and frankly, I observe that many of the voices I see in the Participatory Medicine groups are from the cancer field.

Interesting that Participatory Medicine is SO very resisted in the maternity care field when it's relatively accepted in the cancer field.

Even the same OB-GYN who is open to working in partnership with a woman on decision-making if gynecological cancers occur, often did not give that woman any meaningful say in her choices when she was giving birth.

This is part of the paternalistic view of birth, one that now sees the baby as the primary patient and the mother's needs as endangering the safety of the baby; one that sees the mother as a hysterical, overly-emotional person who is not competent to make her own decisions near the end of pregnancy or while in labor.  [Yes, there are doctors that argue this.]

In this worldview, the mother is the enemy, the culprit and scapegoat if anything goes wrong.  The caregiver is seen as needing to save the baby from the mother's "hostile" uterus, selfish personal habits, or narcissistic desires for a "good" birth.

When a caregiver views mothers as the main source of harm to the real patients (the babies), is that caregiver going to see that source of potential harm as a real partner in decision-making? Or the main obstruction in the way of "saving" the baby?

Another barrier to Participatory Medicine in obstetrics is the cultural training for patients to turn over all personal responsibility for medical choices to their physicians.  This is particularly prevalent in obstetrics, where the woman gives all the power for decision-making to the doctor because of the doctor's extensive training in the field, thinking, "Who am I to disagree with such an expert if he says I have to do this for the baby's sake?"

Obviously, doctors do have a great deal more training and expertise in these medical issues than most patients do and their opinions must be considered carefully, but just ceding over all decision-making powers ignores the fact that doctors disagree with each other all the time about the best course of action. 

Go to one doctor, and you'll likely get one recommendation about what you should do.  Go to another, and you'll likely get different advice.  Go to enough doctors, and you'll probably get totally conflicting advice about what your best course of action is.....in cancer, in heart disease, in chronic illness, even in pregnancy.  Most patients don't recognize just how much medical advice can vary from one care provider to another because they never bother to get a second or third (or more) opinion.

Either you are blindly willing to trust your health and your baby's health to whichever doctor you randomly picked first by praying that you picked well, or you are going to have to do some research and make some decisions based on your values, knowledge, and priorities.....even if that means getting second opinions, exploring alternatives, or seeking out a different care provider who is more in alignment with your priorities.

Some pregnant women don't want any responsibility for these difficult choices, so they cede all decision-making to their doctors.  Such compliant patients are very convenient for obstetricians.........until it bites the doctors back when something goes wrong and the patient sues.

What most maternity field providers don't yet see is that Participatory Medicine benefits doctors too. When parents are involved in active decision-making.....when they really understand all the benefits and risks of a particular choice.....they take on more responsibility for these choices and are less likely to blame the doctor and sue if something goes wrong.  We see this in midwifery care, and we would probably see this in obstetrics too --- if more doctors were willing to practice that way.

Maternity care is the perfect field for Participatory Medicine, but it is probably one of the least participatory of all fields of medicine. Fortunately, caregivers who follow the physiological/midwifery model of birth (regardless of actual job title) do usually practice Participatory Medicine, and this is placing pressure on the medical model like never before to start opening up the decision-making process. 

But as always, it is the consumers who will lead the way in pushing for the participatory model.  Vote with your feet and with your pocketbook.  Choose a maternity care provider who, while providing valuable expertise and perspective, actively shares the decision-making with you and respect the choices that you make.

Participatory Medicine and Health At Every Size

The Participatory Medicine movement also has great implications for the HAES (Health At Every Size) paradigm and people of size.  It also has major implications for the "Bariatric" and Endocrinology fields, if they were only open to seeing it.

Those of us who have really looked at the research know that the rate of long-term success in weight loss is extremely low, and often, weight fluctuations do more harm than good. If the long-term results are examined, many folks end up weighing more in the long run than they did at the start of a diet, and a repeated pattern of dieting is often a major source of increasing obesity and disordered eating.

In what other field would medical experts keep recommending a treatment that has such a low degree of long-term success and a strong chance of making the patient worse off than when he/she started?

Would such poor results be promoted or even tolerated in the cancer community?

Many people of size have long taken charge of their own medical care by opting out of the radical weight loss paradigm, and instead choosing a health-based model over a weight-based model.  This dovetails nicely with the HAES approach of reasonable nutritional and exercise habits for improving or maintaining health, independent of weight.

Many of us refuse to buy into the common medical-paradigm idea that weight loss is always a good idea and is always helpful, and that any means used to achieve it is worthwhile, no matter how radical.

Many of us know from painful experience that the dieting and weight cycling often does more harm than good. Many of us know that we are healthier, mentally and physically, when we do not actively try to lose weight but rather choose to emphasize reasonable nutrition and exercise instead. Many of us ascribe to the radical idea that emphasizing reasonable, healthy habits will improve our health far more than trying to reach some unrealistic and arbitrary weight goal.

Alas, despite research backing up the HAES model, this is a difficult sell to those in the Bariatric and Endocrinology fields, whose training is usually laced with deeply fat-phobic biases against people of size.  Most are trained to think of obesity as the cause of most evils, as weight loss as the only "cure," and to make many assumptions about how fat people "must" be eating and living in order to be fat. 

To share decision-making with patients means actually listening to and believing them about their condition and habits, and this contradicts everything most of these healthcare professionals have usually been taught to believe about fatness.  Thus, those in the Bariatric and Endocrinology fields are unlikely to buy into HAES and Participatory Medicine anytime soon.  It requires too much change to their worldview about fatness.

Alas, the HAES model may also be a difficult sell to some of those already in the Participatory Medicine movement. 

Some Participatory Medicine advocates may have bought into the "magical thinking" mindset that if they can only improve their diet enough, lose enough weight, get enough exercise, etc. that the cancer (or whatever) will not return or would never have occurred in the first place. 

Others have been listening to the mainstream media distortions about the "obesity epidemic" and will find it difficult to consider the seemingly counter-intuitive idea that dieting may actually worsen health in some cases and that not losing weight may actually be a better choice for some people. 

Therefore, the idea of questioning the efficacy and benefits of weight loss may be particularly difficult to some in the Particpatory Medicine movement.

I'm sure many Participatory Medicine followers believe that weight loss is the right way to go for their own health.  And of course, if that's the choice that they want to pursue, they have every right to do so.

But the good thing about Participatory Medicine is that it pushes people to look at things from a more evidence-based point of view.  Hopefully they will read the research and see just how poor the odds for long-term weight loss are among chronic dieters, how it may increase the risk of certain problems, and recognize that as with many other diseases, sometimes the "cure" may be worse than the "disease."

More than that, hopefully the folks embedded in the e-patient movement will remember the principle of self-determination that is so important in the concept of Participatory Medicine --- that pursuing weight loss or not is a choice we deserve to make for ourselves, not have forced upon us as a requirement for care (mandatory weight reduction before organ transplants or surgery, for example).

In the end, we should get to decide whether or not a prescribed course of treatment is right for us or not, we should get to decide whether another round on the diet merry-go-round is going to be helpful or harmful for our individual situation, and we should get to decide whether or not to pursue alternative paradigms of care (like Health At Every Size). 

And that's the heart of Participatory Medicine, isn't it?  People taking the evidence, making decisions in partnership with their care providers, and taking responsibility for them.

Conclusion

Really, there is a great case to be made that Participatory Medicine is one of those innovations that is going to change medicine as we know it.....it's a model rapidly taking over, and protesting it is trying to shut the barn door after the horse is already out. It's coming whether doctors want it or not, and they might as well get on board and embrace the positive facets it brings to patient care.

Participatory Medicine has been quick to catch on in cancer and related fields, but has been slow to be adopted in Childbirth, "Bariatric" and Endocrinology fields.  In fact, in these fields, it is often actively resisted on the basis of condescending and paternalistic attitudes that women giving birth and fat people cannot be trusted to make these kinds of major life decisions, that they are too compromised by their own conditions to see the choices objectively.

But the barn door is open, the horse is galloping off, and Participatory Medicine is rapidly taking over.  Its influence is even being felt in the highly-resistant field of Childbirth; it is only a matter of time until it is heard more in the even-more-resistant fields of Bariatrics and Endocrinology. 

Here is a link to the Seven Preliminary Conclusions of Participatory Medicine:

http://e-patients.net/archives/2009/01/the-e-patient-white-paper-seven-preliminary-conclusions.html

Here are a couple more links to an opinion piece from a doctor called "Doctors Are Killing Their Profession, The Healthcare System, and Their Patients with Paternalism."

http://e-patients.net/archives/2009/10/doctors-are-killing-their-profession-the-healthcare-system-and-their-patients-with-paternalism.html

http://www.docpatientblog.com/2009/09/doctors-are-killing-their-profession.html

Personally, I think this is pretty important stuff, and something that has the power to really transform the practice of medicine.

Please, go check out the e-patient website. And whether you are a birthing person, a person of size, a cancer patient, or whatever.........start making yourself an empowered and informed health consumer!