Tuesday, February 22, 2011

Shared decision making

Along the lines of the video below, please read this article from the Health Affairs Blog by Jessie Gruman about shared decision making. The key excerpt is below, to which I would only add an equally important point demonstrated in the Dave-Danny case: Knowledge and information go both ways in a truly participatory process, not just from provider to patient.

It is important to have (and to promote) a step-by-step process to present us and our families with evidence that helps us understand the trade-offs of health decisions and to thus prepare for productive discussions with our physicians. And it is important to know that most individuals and physicians who go through this formal process find it feasible and satisfying.

But it is the values that this model embodies that justify the focus, energy and investments in it. Those values are that:

…Information and evidence about tests and treatments is a critical component of many health care decisions.

…Patients and caregivers can understand evidence and can use it to help them weigh their options.

…Providers can discuss available evidence – what is known, where it is lacking and what it means – with patients.

…Patients are explicitly invited to participate in the decisions about their care (even if that participation consists of delegating decision-making to a caregiver or physician).

…The opinions and preferences of patients – informed by their understanding of the evidence –shape and determine the tests they take and the treatment they undergo.


e-Patient Dave said...

There's at least one other dimension to this, which played a key role in my own case: patients can discuss with each other how well they liked the different treatments. This can be important, because physicians are trained to focus on the biological issues, and to be dispassionate, while we who live with the consequences may have other thoughts. Patients are also far more likely, in my experience, to have practical information that can make all the difference in making life bearable.

A great example in my case was that the American Cancer Society site described the side effects of my treatment (high dosage interleukin-2) as "often severe and rarely fatal, and may include..." and listed them out. In contrast to that, my ACOR patient community gave me 17 first-hand experiences, which prepared me for the side effects.

I recently asked my BIDMC oncologist, David McDermott, how much effect my attitude and being proactive had on my survival. His response: "I have no doubt that the interleukin killed your tumors. But I don't know if you could have tolerated enough IL-2 to make a difference, if you hadn't been so active in educating yourself and preparing yourself to push through it."

I always emphasize that being actively engaged doesn't make me a doctor; I didn't even know I was sick, much less could I have diagnosed myself and cured myself. But there's no doubt that I brought useful information to the progress of my case, supplementing my HCPs' advice with information I got outside the healthcare delivery system - by engaging with educated patients.

And as we said in the IHI speech, who recommended the ACOR group? My primary, Danny Sands.

It's a new and evolving world. Let patients help.

kathy kastner said...

<…Patients and caregivers can understand evidence and can use it to help them weigh their options.>

My experience is that we patients should NOT be expected to understand and evaluate evidence in the same way health care professionals can and do. Many are the examples of risk/benefit data that a patient translates as: 'not enough benefit to proceed', whereas health care professionals fully understand the impact of seemingly inconsequential differentials.
I also humbly suggest that we patients are not trained to read/interpret test/lab results.

As a fully 'e' patient, my observations aren't meant to dismiss or discount how key patient involvement is in shared decision making process, but rather to remember we're strangers in a strange land.

And, as ePatient Dave says, patient communities and other supports are a critical (and too often overlooked) component of the process.