*Note – This is a guest post I did this week at the Amino.com. Amino “aims to connect everyone to the best health care possible. Powered by a comprehensive database that includes nearly every practicing doctor in America and experiences from more than 188 million patients, Amino’s service empowers people to make confident decisions about where to get care. Using Amino, everyone can find experienced doctors, estimate health care costs, and book appointments — all for free.”
Some of you may remember a post by the Green Swan on Pricing Health Care that introduced you to Amino. Amino is doing great work and they are growing every day. Here is the story of my shared medical decision…
I’m a really active person and I like to exercise. I was a year-round competitive swimmer growing up and I took up running as an adult (and even finished two marathons!) But during the summer of 2012, much of my activity came to a halt. I developed a persistent pain in my left hip that affected some of my daily activities and eventually caused me to lose sleep many nights.
When my lack of sleep started seriously affecting my life, I decided that it was time to visit my primary care physician to find out what was wrong. That appointment started a series of health care decisions that ended in arthroscopic hip surgery in February, 2013.
We all make hundreds of health care decisions in our lives. Deciding to go to your doctor for a really sore throat is a common decision. Determining whether to enter a clinical trial for a serious illness may be a life changing one. No matter the magnitude of the decision, it is important for you to be an active participant in the process.
Yet the traditional medical model places the physician in the role of decision maker. Treatment plans are often shared with little patient involvement in the process. Patients simply follow doctor’s orders. They may even be intimidated to ask questions about the treatment, even if they have concerns.
Shared health care decision making is a paradigm shift from the traditional model. Including the patient (and family members) in decisions shifts the “expert-led” focus to incorporate patient goals with suggested evidence-based treatments.
The Informed Medical Decisions Foundation (IMDF), which studies and advocates for shared decision making, says it should be used “when it comes to preference-sensitive care, where there is more than one clinically appropriate treatment option for the condition, each with benefits and drawbacks, and in which the patient’s values and preferences should be critical in determining the chosen intervention.”
Making informed health care decisions also requires patients to have direct access to reliable information about their medical situation. This progressive shared decision-making model requires more active patient participation in developing personal goals and managing information related to the treatment.
I learned a terrific decision tool in my doctoral program in Educational Leadership that helps with both of these important tasks. What’s great about this framework is that it can be used to make any important decision – not just those related to your health!
To introduce the framework, I’ll share some of the background that led me to making the informed health care decision to have surgery. I didn’t have to have surgery when I did, but I made the choice to move forward with it based on my goals and the information I had about my prognosis and the surgical procedure.
The first appointment to address my hip pain was with my primary care doctor in August, 2012. I explained the pain I was experiencing and how it was affecting my sleep. After discussing all of the treatments I had tried at home, my doctor suggested a referral to an orthopedic specialist.
I went to the orthopedist for an initial visit a week later. After reviewing my history and taking X-rays, I was given a prescription for a strong anti-inflammatory medicine and six weeks of physical therapy. The orthopedist explained that based on my symptoms he believed I had a tear in the cartilage in my hip, but physical therapy was suggested prior to any further tests or treatments.
The anti-inflammatory relieved the pain so I was able to sleep. The physical therapy (and home exercises) helped to strengthen muscles in my hips, legs, and lower back but some pain still persisted. After my last session, the physical therapist reported to the orthopedist that the treatment was unsuccessful and that he also suspected a tear in cartilage.
The next orthopedic appointment included more X-rays and scheduling an MRI. The MRI revealed a labral tear in my hip cartilage and the orthopedist referred me to a specialist in a different practice who could explain my options. One of this doctor’s specialties was arthroscopic hip surgery.
The specialist completed an exam and reviewed the MRI. He explained that the tear would not heal and that I would likely continue to have some level of pain. He described the benefits and drawbacks of the treatment options I could consider.
The first option was managing the pain with oral medications. Another option was trying a cortisone shot in my hip to relieve the pain. A third option was to go back to physical therapy and work to maximize hip range of motion, strength, and stability to minimize pain. Arthroscopic surgery to repair the tear was the last treatment option presented. I could also choose to just endure the pain and wait to make a decision.
Now that I understood my options, I had to make a decision on how to address my hip pain. I chose to use the decision tool I learned in my doctoral program.
The framework is a modified version of a process described by Hammond, Keeney, and Raiffa in their 2002 book, Smart Choices: A Practical Guide to Making Better Decisions. The steps in the framework include: developing the decision question, defining your goals, generating creative options, creating a results table, comparing options and determining the best option.
This is how I used the framework to make the decision to have surgery:
Step 1- Developing the Decision Question
It is important to make sure you are answering the right question when you make a decision. Narrow decision questions limit options that are considered and sometimes ignore the status quo as a viable option.
When we left the orthopedic specialist, I considered some important questions. What option would provide the longest lasting pain relief? What is the most affordable option to treat my pain? What is the best way to get immediate pain relief?
These were all important questions but they were also narrowly focused. The focus was on pain relief and costs. I asked myself – how is the hip pain affecting me now and how will it affect my future? This reflection helped me think more deeply and develop the broader question:
Which option will improve the quality of my life?
Step 2 – Defining My Goals
This is where it gets personal. You decide what matters most in this step by defining your goals. Prioritizing the goals by ranking them from most to least important is a critical step when the time comes to compare options. The level of importance you assign to each goal is subjective and based on your feelings about the goal.
My goals included minimizing pain, increasing physical activity levels, choosing a safe treatment, having long-term treatment success, and minimizing recovery time.
Here are my goals ranked (and labeled) in terms of importance:
- Safe treatment (Extremely important)
- Minimize pain (Very important)
- Increase physical activity (Very Important)
- Long-term treatment success (Important)
- Minimal recovery time (Somewhat important)
Step 3 – Generating (Creative) Options
The goal is to think broadly when generating options to address your decision question. But in a medical decision, you will likely be presented with options from your physician. My orthopedist offered the following options for me to consider:
- Managing the pain with oral medications
- Trying a cortisone shot in my hip to relieve the pain
- Returning to physical therapy to work on maximizing hip range of motion, strength, and stability to minimize pain
- Arthroscopic surgery to repair the labral tear
- Status quo* (no treatment)
*The status quo is an option that is sometimes ignored. Deciding to do nothing can be an important option for some medical situations. My hip pain had advanced to the point that the trouble I experienced sleeping was affecting my life. I listed the status quo as an option, but I will not include the status quo (no treatment) moving forward as it would not have met any of my goals. No treatment may sound like a safe option, but being sleep-deprived can cause many safety issues too.
Step 4 – Creating a Results Table
The results table shows how each option being considered meets the ranked goals I identified. The table is set up with the ranked goals on the side. Each goal is labeled – EI (extremely important), VI (very important), I (important), and SI (somewhat important). The possible options are listed across the top.
I determined the likelihood of the option meeting my goals by using information from my orthopedist, primary doctor, and physical therapist, along with my own research using recent peer-reviewed medical journals. (Right click on the image and open in a new tab to see a larger version of the table.)
Step 5 – Comparing Options
The results table includes both descriptive terms and numbers. This is a “mixed methods” approach to understanding how the options meet the ranked goals.
If you were to just use the terms (and ignore the numbers), you would begin by comparing the first two options – oral medications and a cortisone shot. If you went down the two columns, you would see that a cortisone shot “beats” or ties the oral medications in all but the final goal. Since this goal is only “somewhat important” – you would remove oral medications from consideration.
You would then compare a cortisone shot with more physical therapy. As you go down the columns, it is more difficult to see a clear “winner” with these options. Physical therapy is very safe, but it falls short in terms of meeting many goals. The cortisone shot is likely to meet a few goals, but the shot may not meet some very important goals. One option does not rise above the other, so it would be important to keep both options under consideration at this point.
Taking the cortisone shot and comparing it with arthroscopic surgery is the next step. They start out similar, but it becomes clear that surgery is more likely to meet two of the very important goals. At this point, you can eliminate the cortisone shot.
The final comparison is more physical therapy and the surgery. It is clear that physical therapy is a safer option, but the surgery is more likely to meet every other identified goal. Since surgery was also considered to be a generally safe option by my orthopedist (all surgical procedures have risk) – physical therapy is removed as an option.
The option that remains after these comparisons is arthroscopic surgery to repair the labral tear.
If you prefer to use numbers to represent the ranked goals and the likelihood of an option meeting the goal, you will see that the final results match the comparisons we just completed. The keys show that the extremely important goals that have the highest likelihood of being met by an option get the highest scores (4 x 4 = 16).
Step 6 – Determining My Best Option
After the comparisons are complete, it is important to reflect on each part of the decision-making process. Is the decision question still what you are really trying to answer?
I needed to ask myself – will arthroscopic surgery really improve the quality of my life?
I also reflected on my goals and the options I considered. I discussed the information in the results table with family members and close friends to see if they had other ideas. I knew it was better to alter my process at this point, then to make a poor decision and have regrets!
When I made the choice to have the surgery, I went back in to discuss it again with my orthopedist. I reviewed all of the information he gave me and we talked about the best and worst case scenarios. Incorporating my goals and the results I determined using the information my doctors and therapists provided shifted this to a shared medical decision, rather than an expert-patient exchange.
I wanted a safe, long-lasting treatment that would relieve the pain. I also understood it would take more time to recover if I was going to have the problem fixed, rather than simply continue treating the symptoms. As an active middle-aged woman, arthroscopic hip surgery made sense and it was a decision I have not regretted! The decision tool helped me to manage all of the information I had, while focusing on what mattered most to me.
Here is a blank copy of the results table that you could use for a medical decision or ANY other decision! (Right click for a better view!)