A 58-year old man learns he has early stage prostate cancer. His urologist suggests he wait for a few months so they can test him again, then decide whether he needs treatment. But the man decides to get a second opinion to find a doctor who will treat him, because he just wants that cancer gone. It doesn’t take him long to find a doctor willing to treat him as much as he’d like to be treated.
An 85-year old woman with diabetes has been diagnosed with breast cancer. Her doctor tells her she needs surgery to remove her breast, then six weeks of chemo. Scared and fearful, she thinks for a few moments, then agrees.
As advocates, we can’t (shouldn’t, don’t) second guess the decisions these patients have made. But when we look at these examples, and thousands of others, we realize the biggest challenge these patients have when they are newly diagnosed is that they don’t have an objective way to assess their options. And too often, they aren’t the ones making the choices. Instead they are defaulting to whatever a doctor has recommended, whether or not that’s really the best choice for them.
- Their doctors don’t have time (or won’t take the time) to fully explain their options or the ramifications of each.
- Treatment is what earns providers their income. It’s difficult to think of them as objective when the rent is due or the staff needs to be paid.
- Treatment is also what forces insurers to lose money, too often limiting possibilities that the patient doesn’t even know have been limited.
- Decisions (or agreements) are usually made by these patients based on their emotions, and not on objective information. Further, because no one has ever taught them to be smart patients, they aren’t really sure how to go about getting the information they need. Most don’t even know the right questions to ask.
- And perhaps the biggest piece missing from any of these provider-suggested solutions is that no one has taken the time to ask these patients what THEIR values, goals or priorities are! What do they wish for their lives? And which option (if any) will come closest fulfilling their wishes?
It’s true – patients, who have never needed to step up to voice their own opinions before, are finding themselves buffeted more and more by a system that is set up to make money from them when they are sick, or deny them appropriate care, or in some way create a scenario that would never be of their own choosing if only they understood their options better.
Enter Shared Decision Making (SDM)
Shared Decision Making isn’t just a description – it’s a structured process that leads patients through description (and sometimes discovery) of their own values and priorities, then looks at medical evidence for treatment outcomes, allowing the patient to compare and weigh them together. It’s a recognition that a woman diagnosed with breast cancer at age 35 is unlikely to make the same choices for her treatment (and life) as the 85-year old patient mentioned above, just as the man diagnosed with early prostate cancer won’t see his world the same way as a man who is diagnosed in a later stage.
But the real key – the most important key – is that it’s the patient making the decisions using the information that is centered on the patient, important to the patient, and evidence based. It’s not about someone else who’s in a big hurry (and who will see dozens of other patients that same day) making a one-size-fits-all recommendation.
An Opportunity for Private Advocates and Navigators
More and more patients feel squeezed and helpless to make wise choices for themselves, and this creates an incredible opportunity for patient advocates and navigators to step up to help them do so. Once you understand the Shared Decision Making process you will ask yourself why all treatment decisions aren’t made this way! And you’ll want to do what you can to make sure your clients have access to the process, either by offering it yourself, or by bringing in someone to help your client work through the process.
Enter Dr. Steven Kussin, retired gastroenterologist, author of Doctor, Your Patient Will See You Now, and private advocate who focuses his advocacy work on SDM, and who is now AdvoConnection’s newest adviser, available to its members. He is ready and able to teach you what you’d like to know about getting started with the SDM process, or for you to hire (subcontract) on behalf of your clients.
• Learn more about Steven Kussin, MD and Shared Decision Making here.
• And watch for our updated schedule of Call-Ins to include the topic of SDM this fall.
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