by Karen Knops, MD
Good partnerships are built on clear communication. In our A-S-C-E-N-D framework, designed to help create strong and helpful communication during health appointments, our focus so far has been on the preparation and first minutes with a doctor or other health professional, including the all-important process of sharing concerns.
Those first three steps formed the foundation for what lies ahead: a deeper discussion of concerns, and the uncharted territory of options and treatments. Are there strong emotions, physical exam findings, or complexities of your history that need to be explored? Are future possibilities and choices on the horizon?
Just as the recovery from an illness can be nonlinear, the process of exploring options and deeper values can sometimes require circling back and trying different things. When we are exploring complex decisions, I like to think of this as switchbacks on a steep mountain trail. Rough terrain sometimes forces us to go back and forth before we get where we want to go.
Healthcare workers can be a bit like sherpas — we may have traveled the terrain many times, and yet the needs and experiences of the people we work with will determine what kind of journey is ahead. Some diagnoses and treatments present tortuous forks in the road. If information is complex or emotions run high, a more deliberate map for exploring options can help.
My basic guide for exploration:
- How do I manage information and make decisions? Do I prefer to take the lead, share or defer decisions to a loved one, or do I look to my doctor to direct me? Double check that you have the right people involved in the conversation.
- Am I a “big picture” person, or do I feel comforted by detail and data?
- Do I fully understand what my main problem or diagnosis is, and how it fits in with my health overall?
- For major tests, treatments, or procedures:
- Do I understand the potential risks? Are there are ways I can lower my risk of having a poor outcome?
- How likely am I, specifically, to benefit? What is a best case, worst case, and most likely scenario for my specific situation?
- For treatments with uncertain benefit, what would a “trial period” of treatment be like?
- What is the impact of each option on my finances, my short and long-term function, my family and intimate relationships, and my feelings about myself? These “Four Forgotten F’s of Exploring” are crucial and often overlooked. If patients don’t stop to consider the impact of these Four F’s, and ask the necessary related questions, providers often are not aware they are major concerns.
- What would alternatives, such as doing nothing or “watching and waiting,” look like in my specific case?
- How much variation is there between doctors in how this diagnosis is made, or how these treatments are offered? Is this something where there is a standard? How strongly is my doctor recommending a specific plan?
- How quickly are decisions needed? Is it possible to change course later?
This may seem like a lot, but I often talk to families of people who agreed to a treatment based on assumptions about the benefits, and only when major complications occurred did they fully realize that the benefits they sought were unlikely.
I use this simple test to determine whether I understand something:
Could I tell a story about what is happening, my possible options, and what the outcomes might look like?
If the answer is no, I ask for the information to be explained in another way.
Sometimes trying to draw out the options or use a picture to make things clearer. If there is no time pressure and you are still unsure, call a “timeout” — either to take a break in the discussion, or to ask if the exploration process could be extended to the next visit or a follow-up phone call.
No one should agree to treatment without clear understanding of what they are being asked to do. Explore your options and your feelings about them before moving ahead to Next Steps.
Read the introduction and previous posts in the A-S-C-E-N-D series:
Coming up: “D” for Document