When you’re managing a condition as complex as myeloma, every decision matters. Teresa Miceli, BSN, RN, OCN, with over three decades of experience in myeloma care, shared insights on the importance of shared decision-making for patients and caregivers. She emphasizes how essential it is for patients to take an active role in choosing their treatment path. Here’s a breakdown of her key points on how patients can empower themselves to be true partners in their healthcare journey.
What is Shared Decision-Making?
Shared decision-making is a collaborative approach where patients and healthcare providers come together to make treatment decisions that reflect not only medical needs but also personal preferences and lifestyles. While the concept dates back to the 1970s, it’s especially relevant in today’s patient-centered healthcare model. This approach allows patients to understand their treatment options, weigh the pros and cons, and make informed choices alongside their healthcare team.
Why Shared Decision-Making Matters
For myeloma patients, shared decision-making isn’t just a buzzword; it’s a critical aspect of quality of life. By being involved, a patient's treatment plan more closely aligns with their values and daily life commitments. This is especially important for myeloma patients, who often balance managing their symptoms with work, family, and other responsibilities.
Factors that Affect Decision-Making
Several factors can impact how involved a patient can be in decision-making. Some patients may face urgent decisions right after diagnosis, while others may have more time to explore options during slower phases of the disease. Access to treatment, financial constraints, and the availability of certain therapies can also play a role. Additionally, physical and mental exhaustion, common among myeloma patients, may make it harder to stay actively engaged.
Strategies for Taking an Active Role in Your Care
- Stay Informed: Learning about your condition empowers you. Organizations like the International Myeloma Foundation (IMF) offer resources and webinars to help patients understand treatment options and advancements in myeloma care.
- Identify Your Priorities: Think about what matters most to you. Whether it’s avoiding certain side effects or timing treatments around important life events, knowing your preferences will guide your discussions with your healthcare team.
- Prepare for Your Appointments: Write down your questions ahead of time, and if possible, send them through your patient portal. Having a clear list of concerns helps make the most of each visit.
- Build a Care Network: Having a support network can ease the burden of managing myeloma. Friends, family, and even local or virtual support groups can share tasks or simply provide emotional support.
- Understand Your Healthcare Team’s Roles: Knowing who to go to for specific needs can streamline your care. Your primary care doctor, myeloma specialist, nurse practitioner, and other specialists each play a distinct role in your overall health journey.
Looking Ahead: Becoming a Partner in Your Health
Myeloma treatment is an ongoing journey that may require adjustments along the way. Being an active participant in your healthcare can improve your quality of life. Your treatment decisions should be a reflection of your personal goals and what’s most important to you.
Ultimately, shared decision-making empowers patients to become central members of their care team. With the right resources, support, and preparation, you can confidently navigate the treatment landscape and take charge of your health. Remember, your voice matters in every step of your myeloma journey.
This blog was adapted from a presentation by Teresa Miceli, BSN, RN, OCN. Watch the replay of this presentation. You can also view more informative discussions from the IMF Patient and Family Seminar in Los Angeles here.
The International Myeloma Foundation hosts 4 Patient and Family Seminars across the U.S. each year. Join us in-person or find an online event at events.myeloma.org.