by Karen Knops, MD
Those first three steps formed the foundation for what lies ahead: exploring the uncharted territory of options and treatments. Are there strong emotions, physical exam findings, or complexities of our history that need to be explored? As discussed under “Anticipation” did we have a decision aide or other tool for exploring options?
Questions to guide exploration:
- Considering HOW we make decisions:
- Do we prefer to take the lead, share or defer decisions to loved ones, or do we look to clinicians to direct us?
- Are we focused on the “big picture”, or do we feel comforted by detail and data?
- For those involved in decision-making, do they fully understand what our main problem or diagnosis is, and how it fits in with our health overall? Do the people involved in the decision understand our values?
- In addition to the impact on disease and our comfort, do we understand the impact on our short and long term function? What roles (parent, employee, spouse, etc) are we playing that matter most? Impact on our finances, faith, free-time, family and intimate relationships, feelings about ourselves, and future? These “Forgotten F’s of Exploring” are crucial and often overlooked.
- How do we feel about risk-taking?
- Are there specific “life landmarks” such as weddings, travel plans, etc., influencing how we make decisions in this specific moment?
- For major tests, treatments, or procedures:
- What are the risks? Are there are ways we can lower our risk of having a poor outcome?
- How likely are we, specifically to get the benefits mentioned? What is a best case, worst case, and most likely scenario for our specific situation? See the section on metaphors for more ways to weigh care options.
- For treatments with uncertain benefit, what would a “trial period” of treatment be like?
- What would alternatives, such as doing nothing or “watching and waiting,” look like in our specific case?
- How much variation is there between clinicians in how this diagnosis is made, or what treatments are offered? Is this something where there is a standard?
- Are there options that are not being mentioned by this clinician but might be available elsewhere?
- Is there a strong recommendation? Or are there several acceptable options?
- What is at stake if the decision is delayed? Is it possible to change course later?
This may seem like a lot, but often patients agree to a treatment based on assumptions about the benefits, and only when major complications or side effects occur do they fully realize that the benefits they sought were unlikely. Even if the answers to the questions are “We don’t know” it is better to understand that before taking risks.
Could we tell a story about what is happening, possible options and benefits, and what the outcomes might look like?
If the answer is no, ask for the information to be explained in another way.
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 a clear understanding of how it helps them. Feeling that we know our options is key to finding peace amidst the complexity of illness.
Read the introduction and previous posts in the A-S-C-E-N-D series:
“A” for Anticipate
S” for Summarize
“C” for Concerns
Continue to “N” for Next Steps