Now We’re Talkin’: The Power of Patient Participation

Jun 25, 2024 | Uncategorized

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Mother and Daugter

The Situation 

Pam, the Adult Child of an aging parent, has just been in the doctor’s office with her mother. Pam and her mother had gone in response to her mother’s struggle to remember things. Her mother is complaining of pain in her hip area and stiffness when walking or dressing, resulting in lessened activities. Some days, her mother does not dress, preferring a housecoat, and does not go out as much. She is declining opportunities to be with friends and opting to watch church on TV. 

Pam and her mother witness many of the same things but feel differently about them. Mother believes this is her lot in life; it is simply the result of aging, and things are just “hard.” Pam is concerned about the pain and resulting isolation. She worries that her mother’s world is getting smaller and that her independence is, or has already changed into one of dependence—upon her.

Pam had to get off work to pick up her mother, get her to the appointment, be with her during it, drive her mother back home, and get her in and settled. There was a stop for groceries since Mother is running low on several items, and there went 3.5 hours and pay. 


Pam feels that the appointment was “a waste of time.” 

All in all, Pam feels the concern for her mother but that the appointment was “a waste of time.” The waste of time was more like not a good use of time and opportunity: Pam had to take time away from work (and she will tell you time off from the job she hates and working for the boss from Hades, but that is her own doing). 

Pam remembers the provider’s arrival into the room, the standard greeting, and his reviewing notes on his laptop. He asks her mother a few questions, and the mother’s responses are nearly all “Fine. OK.” Pam wanted to respect her mother’s dignity and did not challenge her or offer the provider much additional information. The conversation goes nowhere except for the writing of a PRN pain medication and a “See You Back Here” invitation for 90 days. 

Mom tries to manage the pain and still avoids dressing or venturing out. Now Pam is feeling (and telling everyone)   that the physician did her mother no good and she must repeat the whole scenario in three months. The concern for Mother and Pam’s feelings of frustration are there and real, as are her thoughts about their changing worlds and roles.

Sadly, this is an encounter that is all too common. The good news is that we, as patients and s, can fix much of that. We will, beginning right now.


We as patients and s can fix much of that. We will, beginning right now.

There are a couple of “at faults” or rather “at play” ’s here because their scenario is a classic case of, well, a couple of things: “You don’t know what you don’t know.” and lack of patient participation. 

That’s right, patient participation.

Patient participation, or being what is nowadays referred to as “an activated patient.” Patients and their s have a lot of power and opportunity within their care. They can take steps to better communicate and understand how to manage their health instead of showing up in the provider’s office and expecting them to “fix things.” This shift in intellectual and emotional ownership is significant to the outcome of care. 


Communication is a two-way street.

We’ve all heard that phrase: communication is a two-way street. In this case, maybe three, but we can do some fundamental things to enhance the communication at hand and make the encounter more fruitful.

Pam and her mother did nothing to prepare for the appointment. Pam expected to show up and have the provider fix things. But how was the provider to know what was going on? 

In Pam’s defense and in her mother’s, too, the changes had just begun to occur. Mom was adapting, in some pain, and maybe a little fearful;  such things were rarely talked about. Pam was just becoming aware of the changes and challenges that had (and might) occur, and she was just learning to look for them. From that observation would come the ability to communicate them to a provider, however the two of them were simply not there yet.

Let’s look at advantageous preparation: what can be done before the appointment, and using that prep during it. In our next segment will get more in the weeds about the “during” part and where you can go with those conversations, and knowing what to do after the fact. 

Welcome to your Two-Part series. Some of this you know, and some of this you’ll need. 


Preparation for a medical appointment

It is time for a little thought and preparation. These are not vexing ideas, and the payoff will be great.

You (and Pam and perhaps her mother) can communicate with the provider ahead of time. Let the provider and team know about changes and concerns, whether you’re the patient or the patient’s. Tell them that you’d like to discuss this in your appointment on (state of the date). You can do this by sending a message in the portal or getting someone to help you with that if needed. (Patient Advocates often assist here, as do relatives and persons designated as Health Care Power of Attorney and with consent from the patient). 

Or, you might call and leave a message for the RN on your team stating your desire to discuss and even inviting a callback in response to your message if they think that would help facilitate things. 

Generate a list of concerns as topics for discussion for the patient,  like “We’re going to talk to Doctor Whozit about the pain you are experiencing and when it gives you trouble, Mom.” Or, there may be times when a mindful person conveys to the provider that the patient may be reticent to discuss the changes. 

To take it a step further, plenty of times a proxy with Healthcare Power of Attorney and communicating with patient or HIPAA consent might ask for an assessment toward and referral to a specialist. For example, Joyce, who lives across the county from her father Jamal, may communicate to the provider that her father is coming in on the 20th with his and Joyce noticed behavioral and memory changes during her visit last month; she wishes to communicate such to the physician in a heads-up sort of way. She wonders if her father needs further evaluation.


A dad at 10:30 AM can be a very different dad by 3:30 PM

What they see at home is often different from what the physician can observe in the office early in the day when Dad is fresh. I often say that when cognitive decline is present, “A dad at 10:30 AM can be a very different dad by 3:30 PM.”

I am reminded of my patient, Mr. John, and “calling Raleigh.” I would accompany Mr. John to his GP, and he’d always fume about this provider as we waited, saying, “I remember this doctor. He’s the one who called Raleigh on me!” Mr. John had moderate to severe cognitive decline, and the physician had submitted the form to the state, in this case, Raleigh in NC, toward removal of Mr.’ John’s driving privileges. Upon learning of that, Mr. John was more than irritated and enjoyed telling the story of the doctor who “called Raleigh on him.” Mr. John lived in an assisted living community and transportation was provided for everywhere he needed to go, medically or for social outings. 


A 15 to 17-minute encounter

No matter what the changes, physical or cognitive, go into the visit prepared. Create a list of the top things to discuss. You would be realistic to prioritize your top three because that is likely all that may be addressed in your 15 to 17-minute encounter.

Think of that all-too-brief time together as the important opportunity it is, and be ready to have yourself a business meeting. It’s not a lot of time when you think about it. In 15 to 17 minutes, let us realize all that must occur:

  • Greetings 
  • Questions -follow up from previous appointment and bridging to this one
  • Looking up correlating data using their laptops
  • Physical and cognitive exams
  • Q&A
  • Assessment and recommendations
  • Instruction and setting up any return visits

Let’s give our appointment the respect that it deserves

Do you have your current medications list with you or updated in the portal the provider can see? Now, you may have a list, but any list is only as good as how it is maintained and updated. I and many others recommend you take a big bag with you, including medications, over-the-counter medicines, vitamins, herbs, and supplements. Take them all with you, along with the dosage. How some supplements react with medications is a picture that your provider needs to be able to formulate. 

It may seem like a no-brainer but have your insurance cards and the names and contact information of every provider you see. I have seen plenty of patients called upon for that.

Next are a couple of tried-and-true approaches to show your willingness to collaborate, demonstrate, and invite the provider to come alongside you in problem-solving. Say something like, “I have a few concerns to discuss today. I’ve prioritized the most important ones for today’s visit.” Providers love a prepared patient. That sets the stage, and the two of you can use the preparation to make the best use of your time together. If you don’t get through everything in this visit you should feel empowered to ask your doctor to fit you in soon for a follow-up visit. 

Fill in the details during the discussion, including a summary of any recent appointments or tests. The doctor may not have a clear picture of your onset, but related medical encounters such as an Urgent Care visit, a recent chest X-ray, or blood work can help them know where to look quickly to pull the clues together. 

You may be seeing a new doctor, or maybe it’s been a while. It’s helpful to have your medical history available. Plenty of people keep a folder or binder to help with their recall. Do have dates and information about past surgeries, procedures, and treatments. 

This would be a good place to mention a couple of free tools that could hold this information: the I.C.E. form and The Face Sheet Tool. Both are available for your review on my website and for FREE Download.

I recommend that we all have a  in the appointment with us. I may be a Patient Advocate and a good preparer, talker, and notetaker, however I want to focus on what the provider is asking and telling and not formulating what I am going to say or catching details of the exchange. 

Bring a friend, loved one, or even a Patient Advocate with you to serve as an extra set of ears. They can help you think of questions you may have forgotten and can take notes while you’re talking to the doctor. They may help with questions or ensure that the patient’s questions are addressed. They can speak up and ask for clarification. 

Be ready to answer questions like these: 

  • What is bothering you? 
  • When did it start? 
  • What makes it better or worse? 

‘Got those answers? Have you thought about it?


Make sure that you know what to do

Patients and their s can ask questions of the providers, like “I want to understand; will you say that again in layman’s terms?” Make sure you understand all that is going on.

When exiting your appointment, make sure you know what to do if you have a question later. Do you call the office or nurse and lodge the question that way, or might you use the portal messaging function? Is there a holiday coming up that may affect your ability to reach the office? 

Providers’ offices have made vast improvements in sending the patient out with an After Visit Summary (AVS). This is not the piece of paper to discard once you get in the car or throw away when you get home. 

  • You need to check it to make sure that your medications are properly captured. 
  • Look for the section on knowing what to do if you have a question. There are phone numbers and maybe email addresses to use in those communications. 
  • Your next follow-up visit has likely been made. Please make sure that those are on your calendars. 

I love it when I am handed an After Visit Summary, and stuff is highlighted for my attention. This function has improved so much in the last twenty years, and I am so relieved. It used to burn me up to ask my parents or another, “So, what happened at your appointment today?” and (I especially can hear my father here) the reply was, “She said I’m fine; come back in three months.” 

When you think about it, the way you made your questions in advance and maybe sent them ahead is akin to a provider’s After Visit Summary and sending you home. You did the “Pre,” and the providers did the “Post.” Full circle and a way to get information in between. 

Next time, we will enter in more detail about the actual appointment and tips to maximize that encounter within your “15 minutes of fame”. We’ll talk about referrals and specialists, touch on insurance, and become more aware of hidden fees such as facility fees. I will have a sampling of tools to help when “in the weeds’ of medical care.

An activated patient, one who is now participating in their own healthcare is the goal. There is much to be gained by being Eyes Wide Open and prepared. Whatever your impetus: using your time wisely, getting your money’s worth, gaining a response out of the doctor, meeting them halfway in their efforts to know and help you, it’s all good. And we can get better at it, all of us. 


Nancy Ruffner is a patient advocate whose focuses include aging strategy, healthcare navigation, and solo aging. Nancy consults with clients in a triage fashion, offering one-hour consultations to find a path, gain a deeper understanding of “how stuff works” in eldercare, or specifically problem-solve. Schedule your Power Hour now, without obligation of commitment or continuing costs.