This guest post, presenting the view point of Howard Luks ( @hjluks on Twitter). Howard is an orthopedic surgeon. He serves as the Chief of Sports Medicine, Arthroscopy and Knee Replacement at Westchester Medical Center, in Westchester County, NY. Asked about participatory medicine and patient engagement, Howard told me “I am infinitely intrigued by the possible uses for social media to improve the delivery, access and quality of health care to the patients I have the honor of treating everyday.” He raises a very important point about the variations among patients of their willingness to take charge and become engaged in their care.
I was so impressed by his blog post that I asked him for permission to republish his original post here.
here’s what people more typically do after a diagnosis: Gather up a hodgepodge of information—online and by talking to friends—that is often incomplete, inaccurate, and incomprehensible. “Generally speaking, the perception of chances of good and bad outcomes is very poor,” says Annette O’Connor, a researcher at the University of Ottawa in Canada who has long studied how best to get patients informed. A patient may think a treatment is going to cure him when it might only lessen symptoms, for example, or that the risks are more serious than they actually are. The Foundation for Informed Medical Decision Making (www.informedmedicaldecisions.org), a nonprofit patient advocacy group that is supporting the 12 centers, cites research showing that most people can’t answer even basic questions about their illnesses. Often, they simply defer to their physician. But doctors rarely give comprehensive information. Time is short, they often have biases—surgery and rehab for that torn ligament beats trying rest, exercise, or physical therapy, say—and many assume patients don’t want the burden of overwhelming information.
For now, the *standard* is Informed Consent. Basically your doctor tells you what is wrong, details the treatment recommendation and tells you the reasonably foreseeable risks, potential complications, etc. For decades, this has been the standard. The problem with this is that it does not take into account the variables introduced by each individual patient and their values.
I have talked about this previously on this blog… I call it the “personality” of an injury. Assume two people slip and fall in the snow and tear their ACL (a ligament in the knee). One person plays tennis 4 days a week, skis 20 times a season, and has no desire to curtail activities. One person is a couch potato, and is not involved in any activities involving cutting, pivoting or twisting (when you need the ACL). Who *needs* a new ACL reconstructed? Each injury might take on a different personality, depending on the needs, desires, and values of the patient. This, in essence, is what I review with each patient as we determine whether or not surgery is *necessary* for their condition. A shared decision making process will incorporate the values of the patient, after they have been informed of what their limitations might be with or without the surgery and whether or not the potential complications are *worth the risk* to them. On my website, there has been a section on shared decision making aides for the past 3 years. I have reviewed these aides with many patients (some still do not want to) and I find that these patients, if they choose surgery are much *happier*. They understand the process, the procedure, the risks and the reasonable expectations…. and THEY made the decision to proceed after WE went through a thorough shared decision making process. Yes, it takes more time… so what, it was worth every minute.
The participatory medicine crowd and the social media savvy patient may not understand this— but many patients still do not want to know anything about their condition…. “…just do what you think is right doc…” is not an uncommon utterance during a discussion about the options available. I have discussed this as well. When you (as the physician) believe in incorporating patient centric values and the shared decision making process into the treatment algorithm this makes you feel uncomfortable… but at least it was the patient’s choice to proceed in such a manner.
Patients and physicians need to engage with one another as a team—incorporate these shared decision making principles— and in the end the patient has made the choice that *feels* right.
AHRQ is supporting this concept with their 10 questions
I am honored to be recognized by your organization and I look forward to working with you in the future.
Great post Howard! I am still sometimes shocked when I speak to folks that want practically no information about their condition. There are still some who just want to be told what to do.
It will be interesting to see any possible adjustments to how a PCMH model is implemented in situations where the patient refuses to participate in decision making.
Howard and I have shared our thoughts regarding cases in which patients would rather play a deliberately passive role. To some extent, this is a choice that should be appreciated and respected… as long as it is a truly “informed” choice.
Regarding cases in which the patient refuses to participate in decision making I think it becomes incumbent on the provider to tease out the reasons for this (apparent) reluctance. Some reasons for refusal to participate in decision making may be addressed as separate issues to bring the patient into the process.
I’m thinking of educational background, societal expectations, language barriers and the structure of the medical visit (ie patient feels rushed and does not think that questions or discussion would be welcome).
In the past, such patients were almost a “bonus” to clinicians because they were less labor intensive, they moved the schedule along and went along with what was being proposed.
My suspicion is that the compliance by patients who were not actively involved in decision-making was less than optimal.
In an environment where ePatients are increasingly advocating to become participants in their own care, it will be important for care providers to get a grasp on whether or not all of our patients are participating in care decisions in a way that assures optimal outcomes. We certainly do not want to create an “ePatient divide” or a multitiered system of health information.
Thanks again, Howard.
This distinction between informed choice and informed consent is not just a concept. It is a daily practical matter to me. Informed consent has unfortunately become nothing more than a piece of paper required for legal purposes. Many patients seem to be happy with this “just sign here” approach to getting things done without having to think about it. One aspect of consumer driven healthcare is that patients, like other consumers, have started to think that more is better. They want more done for their money as they tend to view the “watchful waiting” approach as counterproductive.
As “informed consent” has become just a formality, it is up to the individual doctor to really give the patient a “informed choice” if one exists. Informed choice is the real informal discussion to actually make the shared healthcare decision based on patient’s best interest. The choice can be as simple as choosing between two blood pressure pills, a new pill with a high co-pay and slightly better side effect profile or a time tested classic pill available on the Walmart $4 generic list. Currently, this decision is mostly based on the style and personality of the doctor. But, I believe that a decision like that should be based on the patient’s personality and beliefs.
At other times, the decision can be between a cardiac cath and medical management of heart disease. Sadly, in such cases, informed consent only comes onto play when the decision has been made to get the cardiac cath. It takes a lot of integrity on the part of the cardiologist to truly give a “informed choice” between the two options if you just look at the process from a pure consumer point of view. Can you imagine a car salesman giving impartial advice to help the costumer decide if he really needs a new car?
There are times when one approach is clearly better than the other but there are also times when it again comes down to the doctor’s personal preference and practice style where it should have been the patient’s preference and personality.
Personally, I think this problem needs a change in attitude of both parties. We need more patients to demand a clear choice when it exists. They have to understand that sometimes it is choice between doing something and not doing anything at all. Patient leaders here can help them know their choices. On the other hand, doctors need to understand that the choices are for the patients, not for themselves.
HI Folks …
I have updated my website. This post has a new url https://www.howardluksmd.com/education/shared-decision-making/
I would a appreciate it if you could update the post to reflect the new backlink address. Same post, same content :-)