- Jeanne Lee
Post 67: The Difference Between "Potential" and "Likely"
Updated: Oct 23, 2022
Doctors often provide best case scenarios. The best case is what they are hoping for, and it is what they feel most comfortable relaying to patients. No one wants to be the bearer of bad news - doctors, being human, are included in this group - and so often worst case scenarios are not brought up in a discussion about expectations and prognosis.
After all, when we embark on a medical treatment journey together, we are all hoping for the very best outcomes.
"His cholesterol and blood pressure numbers are fantastic! Other than his dementia, he's healthy! He's probably healthier than both of us!"
"The LVAD can last up to ten years!" (LVAD stands for Left Ventricular Assist Device. If a patient with end stage heart failure is a good candidate and willing, the LVAD is surgically attached to the patient's heart to act like a portable life support machine. LVAD as "destination therapy" refers to placing the LVAD in a person who has end stage heart failure but is not a candidate for heart transplant. Often the potential life of the device is discussed as opposed to the average life expectancy of the person who undergoes LVAD implantation.)
As a palliative care physician (read Post 1: What Exactly Does a Palliative Care Specialist Do?), I once saw a patient who shared that her oncologist had told her "I have a 90 year old patient who's been living with her pancreatic cancer for five years!" This one statement gave her motivation to remain positive and push forward at a time when she would otherwise have been too overwhelmed to take the next step (read Post 65: Optimism and Hope).
So I can see the value of doctors relaying only the best case scenario to certain patients who are at a place to hear only the best case scenario. Sometimes we are at a place in our lives when we need to hear only about the "potential" (read Post 13: Sometimes It's Denial, and Sometimes It's Just Really Bad Timing).
When there comes a time when one wants to hear about best and worst case scenarios and to learn about the "likely" trajectories moreso than the "potential" trajectories - for whatever reason, to know how to prioritize their waking hours, to complete important documents, to prepare themselves and their loved ones to say good bye - they may have to recognize that their doctor may only be discussing best case scenarios with them.
They may have to initiate the process of obtaining the information that they are seeking, which may begin with reassuring their doctor that they are ready to discuss realistic expectations as well as giving their doctor permission to do so (read Post 15: What's My Heaven ETA? - The Who, What, Where, When, Why, and How in Asking About Prognosis).
"Things are very different this year compared to last year. Breathing is much more of a struggle. I've lived a full life. I've accepted the inevitable. I need your help to tell me what to expect."
"I'm not going to stop hoping that this is it, that the cancer responds to this treatment. But I really do want to prepare for what if's so I can plan ahead and get everything I need to get done done and talk about everything I need to talk about with my family. I would like for you to give me a realistic prognosis of how long I might live if this treatment doesn't work."
In Post 16: Medical Decision Making 101, I talk about the value of asking about potential risks, potential burdens, and potential benefits of each major medical or surgical treatment, especially for those already living with serious illness, declining health, or shortened prognosis. I want to suggest in this post that we also ask about likely risks, likely burdens, and likely benefits, which may yield different answers.
"The day I was supposed to get dialysis training, the instructor was out sick so they cancelled the class. Then I got started on dialysis, and I never got the education. I really didn't want to know the details. I was hoping dialysis would cure my kidney failure and that it'd be temporary. Having gone through some of the issues I've had, I feel like I want to know details. I know now dialysis is not a cure, and I have questions like what really is the average life expectancy once you start dialysis. I mean, I met a patient who's been on dialysis for twelve years, but based on what I've seen and heard, I don't think that's the average..."
When it comes time to making major medical decisions, asking about the "average" or "common" scenarios - which may be difficult for some doctors to bring up, especially if the "average" scenario may be what they consider "bad news" - may be just as helpful to you as learning about the "best case" and "worst case" scenarios.
Recognizing that "potential" medical expectations could differ greatly from "likely" expectations may help you drive the conversation so that you obtain the information you are seeking.