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A is for Advocate, C is for Communicate

In a healthcare world where excessive and unnecessary use of medications is common among older adults, one key strategy to push back against this trend is to self-advocacy. There is no doubt that patients who participate more actively in their healthcare—by asking questions and expressing concerns, for example—will achieve better outcomes and be more satisfied with their care. Thus, anyone who takes medications and caregivers of those individuals need to be confident to advocate for themselves regarding day-to-day decisions about medication use.  

In 2019, the Lown Institute published a report Medication Overload: America’s Other Drug Problem. It states that for most patients, there is no single healthcare professional that is assigned responsibility for a person’s overall healthcare, who can keep track of all of a person’s medications and protect them from medication overload. This means that patients must be prepared to step up to the plate and be the connector between the different settings where care is received, including doctor offices and pharmacies,.

While some people might feel intimidated to question if a medicine is needed, double check if one doctor has spoken with another doctor, or admit they are not following healthcare instructions at home (such as taking a medication every day or getting more physical activity), honest and open communication is a necessary step toward better health outcomes. In fact, physicians have expressed frustration that patients often are not honest about their lifestyle, perceptions about treatments, and preferences, for example (Wall Street Journal, 3/22/25 “Doctors are just as frustrated as you by our messed up healthcare system”).

In our efforts to reduce unnecessary and harmful medication use, why is communication so important? In many instances, if you do not bring it up, it may not be discussed at all. My focus here is on medication issues, but these principles apply to all aspects of your healthcare. How do you feel about taking medications? Are you a drug “minimalist” (you would prefer to try non-drug therapies first) or are you okay with trying a medication? Have you stopped taking a medication because it is too expensive or causing a side effect? Or perhaps you don’t think the medicine is helping, but the doctor never specifically asked about it and you didn’t think to bring it up. One of the barriers to “deprescribing” is that neither doctors nor patients make it a regular part of office visit conversations. 

Two related concepts that encourage you to advocate for yourself are person-centered care and shared decision making. Person-centered care is a healthcare approach that places the individual at the center of his or her own care. In a person-centered care model, healthcare providers and patients partner to develop care plans that are in line with the patient’s goals and priorities. What matters most to you regarding your health and life? How do your medications impact your day-to-day functioning and how you feel? Side effects, cost, and complex schedules for when and how to take your medications all impact your quality of life and ultimately how effective the medicines will be for you.

Shared decision making means that healthcare providers work with patients to make informed decisions about their care. These discussions take into account a person’s values, preferences, and goals. Shared decision making incorporates the patient’s perspective—that is, what matters most and person-centered care. Although experiencing person-centered care and using shared decision making to decide on treatment plans might sound more idealistic than realistic, I argue that it IS essential and patients DO need to speak up during each healthcare encounter, meaning every visit to a doctor’s office or the pharmacy. We all have to help ensure that person-centered care and shared decision making occur.

Tips and Suggestions to Advocate for Yourself and Communicate with Your Healthcare Team

Here are five ways to advocate for the principles of person-centered care and shared decision making.

1. Choose to become more engaged and an active participant in your healthcare and medical decisions.
2. Keep a current medication list—include over-the-counter medicines and dietary supplements. Share it with every healthcare professional you work with.
3. Make a list of your questions that come up in between office visits. This might include information about how your medications have affected you—any side effects? Symptom improvement? (Note: if you experience a serious side effect, you need to contact your doctor or pharmacist right away and not wait until the next doctor’s appointment.)
4. Prepare for each doctor visit to talk about what is most important to you regarding your medications, specific health conditions and overall health, and other parts of your life that impact your health and well-being (for example, emotional or financial issues; changes in relationships; successes; worries) Here are links to 2 resources to get you started:
   1. A checklist and worksheet developed by the Age-friendly Health Systems initiative to help patients prepare for doctor visits to discuss their priorities and what matters most to them.
   2. Material, including worksheets, from the Patient Priorities Care initiative to help people (and their caregivers) discover what matters most to them.
5. Ask questions as a way to be more engaged. Not sure where to start? Agency for Healthcare Research and Quality (AHRQ) has developed a handout on how to be more engaged in your healthcare (see also information on their website).

Summary

Actively participating in your health care means that you need to have conversations and speak up about your preferences, concerns, and successes. Advocating for yourself and communicating with your healthcare professionals are essential. Importantly, these conversations give you and your doctors the space to talk about your medications and explore ways to reduce unnecessary and harmful medications so that you can experience greater satisfaction and feel better.   

Written by Hedva Barenholtz Levy, PharmD, BCPS, BCGP       

April 27, 2025 

This material is intended to encourage discussion with your health care provider.  It is informational only and does not replace the guidance of your health care team.