In the first three parts of this series, I explored the challenge of helping patients manage uncertainty. To wrap up, here is a patient handout with insights and tips based on the approach that has helped me and many other patients. Feel free to edit and use this template in whatever way works well in your practice.
Managing Uncertainty
Dear Patient,
One of the challenges of life after cancer is uncertainty-uncertainty about what is happening now, what will happen in the future, and what we can do.
Problems arise if your normal reactions to uncertainty interfere with your ability to make wise decisions. Or if your thoughts and feelings make it difficult for you to feel hopeful, communicate with family and friends, enjoy celebrations, or pursue pleasurable activities.
This handout offers insights and tips on healthy ways to manage your reactions to uncertainty.
Changing the Things We Can Change
When faced with uncertainty, the key question is: Can we do anything to decrease the uncertainty? If the answer is "yes," we'll take action: Together we'll strive to change what can be changed-and lessen the uncertainty.
For example, let's say you develop a cough or pain. We can do some tests to decrease the uncertainty about what's causing your symptom. After we make a diagnosis, we can discuss all treatment options to decrease the uncertainty about the best way to treat you.
Decreasing this kind of uncertainty-i.e., changing the things we can-requires a team effort. My job is to tailor evaluations and therapies to you as a unique individual. Your job is to tell me about your symptom(s) or concern(s), as well as to proceed with needed blood tests or scans, take your medications properly, and follow my recommendations regarding diet, exercise, and sleep-or tell me why you can't.
At any time, feel free to ask me, "Can we do anything to lessen the uncertainty?"
Accepting the Things We Cannot Change
Sometimes my answer will be "No, we can't decrease the uncertainty." For example, if a thorough evaluation doesn't pin down a diagnosis, we have to accept not knowing the cause of your symptom-at least for now. Even with a precise diagnosis, every treatment decision involves uncertainty. No doctor can guarantee a treatment will work or result in a good outcome.
Accepting the things we cannot change requires a team effort, too. My job begins with clarifying which things we can-and cannot-change. Then I'll do what I can to help you adjust to ongoing uncertainty. If needed, I may recommend counseling and/or prescribe medications until the uncertainty of survivorship no longer interferes with your decision-making or quality of life.
Meanwhile, your job is to be candid if I ask "How are you doing?" I want and need to know if uncertainty is making it difficult for you to eat, sleep, relate to others, or find any happiness at all.
Distraction
During times that you feel distressed by uncertainty, try distracting yourself. If watching TV sitcoms or organizing your sock drawers helps, that's great. But only as a short-term fix. For you to get good care and live fully, you need to find ways to face the uncertainty associated with life after cancer.
Redirection
If you feel anxious (or angry, aggravated, or other unpleasant emotion), try channeling the negative energy into efforts to change the things you can change. Ideally this initiates a healing loop: You take effective action that reduces your distress, which, in turn, further helps you take proper action and so on until the anxiety dissipates.
Healing Hope
After cancer, a key ingredient for dealing with uncertainty is hope. But not just any hope. What you need is hope that helps you get good care and/or live as fully as possible today.
Imagine you develop a worrisome symptom. Naturally you hope it's nothing serious and that it will go away by itself. In general, these two hopes are fine. But not if they keep you from reporting the symptom to your doctors. And not if they delay your receiving proper medical care.
If you are undergoing treatment, let's nourish hope[horizontal ellipsis]
* Your treatments will go smoothly and work well.
* Together, we will recognize and respond to problems quickly.
* You will see and embrace what joys are still possible.
If you develop a worrisome symptom or complication, let's nourish hope[horizontal ellipsis]
* Together, we will respond to problems quickly.
* Our evaluation will go smoothly and yield accurate results.
* The underlying problem turns out to be treatable.
* You will see and embrace what joys are still possible.
If you are diagnosed with recurrent cancer, let's nourish hope[horizontal ellipsis]
* Our evaluation will go smoothly and yield accurate results.
* Together, we will make wise treatment decisions together.
* A different treatment will work well.
* You will see and embrace what joys are still possible.
If you are dealing with post-treatment recovery, let's hope[horizontal ellipsis]
* Your body will continue to heal and you will feel better.
* Together, we will help you pursue a healthy lifestyle.
* Together, we will recognize and respond to problems quickly.
* You will see and embrace what joys are still possible.
If treatment options run out, let's nourish hope[horizontal ellipsis]
* We will avoid treatments that can't help-and would cause harm.
* You will feel better off the anti-cancer treatments.
* You will find safe places to grieve your losses.
* You will see and embrace what joys are still possible.
Whatever happens, keep in mind that cancer didn't make life uncertain. Cancer merely exposed the uncertainty of life.
Every step of the way, let's work together to change what can be changed and to accept the things we cannot change. Let's find and nourish the many hopes that can help you get good care and live as fully as possible today, tomorrow, and every day.
This is the conclusion of a four-part series on Managing Uncertainty:
* Part 1 ("Background") was in the 10/10/11 issue;
* Part 2 ("Serenity") was in the 11/10/11 issue; and
* Part 3 ("Hope") was in the 11/25/11 issue.