While sitting here jet-lagged after returning from the ACR Conference in Chicago, I am collecting my thoughts after a whirlwind of conversations, demonstrations, and academic sessions. Though I should be resting, I can’t help but format these thoughts and extrapolate on one particular topic that arose multiple times a day in all of the above scenarios.
Now, if you are unaware what conference I am speaking of, let me briefly explain. The American College of Rheumatology (ACR) is an organization that is committed to improving patient care for those with rheumatic diseases and advancing the sub-specialty of rheumatology. They are a global nonprofit formed in 1934 with over 9,600 physicians, scientists, and professionals worldwide. Every year, they have an annual conference that acts as a gateway to global education, with over 450 sessions, and connects colleagues, provides professional development, and a window to the latest rheumatology related research and clinical applications. This conference was recently held October 19-24, and I had the privilege of being there representing not only my organization, More Than Lupus, but partnering with Lupus Allied Disease Association, Lupus Research Alliance, Lupus Foundation of America, Lupus Research Program, and many more incredible lupus organizations.
So what was the topic I heard over and over again? You guessed it (from the title of this blog, I assume) - shared decision making.
Yes, shared decision making was mentioned in every session I attended, as not only gaining prominence in health care policy, but as an essential tool to better tailored treatment plans, patient compliance, and outcomes.
For those who may be newly diagnosed with lupus, and reading this term for the first time, shared decision making (SDM) is defined as an approach where patients and their doctors are both open with each other and share the best available evidence and ideas when faced with making decisions, and where patients are supported to consider options, and encouraged to achieve informed preferences to treatment.
Now, for some, you may be picking your jaw up off the floor and thinking to yourself, “What? I actually have the right to ask questions, share my concerns, and even bring my own ideas to the table at my doctors visit?” And the answer is yes. Yes, you do. Not only do you have the right, you have the responsibility to do so. And after witnessing clinician, after clinician mention it, it’s time that you stop assuming you are being difficult when you try to discuss things with our doctor.
They need it, you need it, so let’s figure out how to best advance the practice of shared decision making at your next appointment.
HOW IT WORKS:
The basis of shared decision making relies on the acceptance that patients have their own thoughts and desires, and that patient self-determination is a powerful force that doctors need to support, in order to help patients achieve those desires, when possible. With shared decision making, there is a component of supporting autonomy, yet still respecting both sides, and the interdependence on each other. The hope is through open discussion and achieving mutual (doctor/patient) decisions, you (the patient) will adhere to those decisions and (hopefully) have a positive outcome.
Providing Information - knowledge is power! Patients cannot effectively participate in shared decision making if they do not fully understand their current health status, proposed testing, all of the treatment options, and the possible side effects of those treatment options. That is why the doctor must provide clear information about whatever disease, disorder, or complication that is being dealt with, as well as, information on tests and treatments. Providing websites, handouts, recommended books, and support groups is one way to do that. On the other hand, doctors need to be informed about the patient goals, information about their body, and healthcare. It is only by exchanging detailed, accurate information on BOTH sides, can this partnership be developed and a consensus be attained. As Peter Goldbach, MD, Chief Medical Officer at Decision Aid Company Health Dialog said in an interview with PatientEngagementHIT.com, “The patient is the expert on the patient, so the provider needs that information. The provider is the expert on the disease, so the patient needs that information, “Together, they can do the best job in terms of finding an approach to a clinical problem.”
Deliberation - Time to carefully assess. After information is shared on both sides, then awareness has begun to set in. This is a time to deliberate and process the pros and cons of options, assess implications, and consider a range of possible outcomes. This is an excellent time to involve family members and caregivers if you haven’t done so already. It is important to lean on your loved ones during times of uncertainty to provide objectivity and clarity. Involving family members in shared decision making might be essential if your health is ailing and you are unable to make decisions on your own as well. “When patients and families are partners in planning and making decisions about their care, health outcomes are better, patient experience and satisfaction improves, and often, costs are lower,” -Patient Centered Primary Care Collaborative, the Institute for Patient and Family Centered Care, and Planetree.
Coming together and moving forward with a plan. Once you have deliberated, it is time to focus on preference, move to a decision, and execute those shared-decisions. Hopefully, since you have had the opportunity to express your concerns and thoughts, you now feel confident to engage openly with your clinician, and comply to your treatment plan. Now, there are times when you might encounter a medical professional who does not use strong communication skills, and you feel uncomfortable speaking up. If this is so, you fully have the right to ask for a referral to see another doctor. Yes, you do. Doctors are not your parents, you are not bound to them, you do not belong to them. Additionally, you should not fear your doctor. If you are having such feelings, time to access a possible change.
In closing, shared decision making is the way of the future. But, as patients you have a responsibility as well. If you want to improve engagement with your doctor, and have a seat at the decision table, then YOU have to be open as well. I want to leave you with a quote from William James Mayo, a physician, surgeon, and one of the seven founders of the Mayo Clinic:
"The best interest of the patient is the only interest to be considered"
-W. J. Mayo, M.D. 1910 Rush Medical College
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2018.