If you’re living with a chronic illness, like me, then you’ve likely made a lot of health care-related decisions before, during, and after your medical appointments.
As a family nurse practitioner also managing rheumatoid arthritis (RA), there are times when the right choice seems clear, and others when it’s less certain. Regardless, I truly value a shared decision-making (SDM) approach, where my voice matters just as much as those on my health care team.
Shared decision-making is a collaborative approach that considers one’s values, preferences, lifestyles, resources, provider comfort or experience, and evidence-based research. Typically, when using a SDM approach, there is a conversation between the medical provider and the patient about the pros and cons of the options available.
Why Shared Decision-Making Matters
SDM is crucial to my life with RA for many reasons.
Communication and Trust
SDM fosters open communication between me and my health care providers. It encourages open dialogue, questions, and discussions about treatment options available. SMS also allows me to express any concerns I may have as well as realistic expectations from the treatments offered. This has strengthened our relationship and built trust.
Empowerment
This approach empowers me as a patient, giving me a voice to express my concerns about available treatments, which over the years has included the risk of hair loss and long-term side effects as well as my complicated family history.
Patient-Centered Care
SDM respects and incorporates my insights into the decision-making process, acknowledging my expertise in my own condition and allowing me to play an active role in my health care.
Informed Choices
Living with a chronic illness for over a decade, I have been offered dozens of medical treatment options that simply weren’t feasible due to time commitments, travel, finances, childcare, etc. SDM allows for informed choices that fit within the realities of my life, considering all aspects of my current lifestyle. Use this shared decision-making tool to have a more informed conversation about treatment options, disease activity, and more.
Better Adherence
When I’m involved in my health care decisions, I’m more likely to stick with them. The decisions I have made with my health care team have taken into consideration my values, preferences, and lifestyle, so it makes it easier to be a compliant patient, leading to better health outcomes. I feel that I’m doing as well as I am today because of SDM.
Decision Support
Living with a chronic illness means making a lot of big decisions that often lead to life-altering outcomes. Sometimes this can be paralyzing for me. It’s been nice to use SDM to take the recommendations of the experienced professionals on my health care team to make the best decision for me.
Respect for Autonomy
As a patient and health care provider myself, I feel that I deserve input when it comes to making decisions that impact my life with chronic illness. Respect for patient autonomy is central in SDM, reinforcing the notion that all patients deserve input in their care.
Tailored Care Plan
SDM has enabled the creation of a care plan tailored specifically to my needs, preferences, and circumstances. I really like the idea of knowing that I’m getting something designed just for me.
Tips for Shared Decision-Making
When it comes to the treatment of my chronic illness, SDM has fostered collaboration, mutual respect, and empowerment. Here are some tips for effective SDM.
- Clearly communicate that you want to play an active role in your health care decisions with all members of your health care team. Try using a phrase along the lines of “I believe it’s important for me to play an active role in decisions about my health.”
- Show respect and acknowledge the experience of your medical provider. For example, “I value your expertise and want to work together to make the best decisions for my health and lifestyle.”
- Do your own research before heading into your medical appointments. Oftentimes, if you already know which option you want, or what is even feasible, you can spend more time talking about that specific treatment option.
- If you don’t know which option is best for you, simply say that. Stay open minded and curious to best understand the information provided to you.
- Ask for any specific resources that your health care provider may recommend, and take notes, too.
- Verbalize your specific concerns, as they’re probably not identical to mine. You may have a fear of needles or something else that’s important to communicate to your health care provider.
- Attend your follow-up appointments as recommended. This is the easiest way to communicate to your health care team that you’re committed to the treatment plan.
Be a More Proactive Patient with PatientSpot
PatientSpot (formerly ArthritisPower) is a patient-led, patient-centered research registry for people living with chronic conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.
