Managing uncertainty is a hot topic in survivorship. Research clinicians and academics are designing taxonomies and testing theories, hoping to develop interventions to help patients deal with uncertainty. This is good.
Many patients struggle with uncertainty about what's happening now, what will happen in the future, and what they should do. They seek relief from their unsettling feelings of uncertainty.
One of my top priorities as a patient has been finding healthy ways to deal with my heightened sense of uncertainty. And I'm happy to say I found an approach that helps me. But first, some background.
In 1990 I was diagnosed with Stage III indolent lymphoma. All the textbooks described inevitable recurrence, with successively shorter remissions leading to death. At the time, the median life expectancy of patients with this lymphoma was about seven years. A second recurrence within two and a half years dropped my prognosis to two years. Since entering a clinical trial to treat my third recurrence, no statistics have been available for patients like me.
I've received nine separate courses of various therapies, the last of which ended in November 2007. My disease is currently in remission.
The Problem of Uncertainty
Before my diagnosis, I cared for patients in my solo practice of internal medicine. Intellectually I knew my white coat did not protect me in some magical way from illness or injury. Yet I enjoyed a comforting sense of confidence about the future and control over my personal world. When subscription notices arrived for my medical journals, I renewed each for three years without hesitation. At the conclusion of every new-patient visit, I promised to provide care until I turned 80 years old and retired.
Cancer changed everything. During the early years of my survivorship, uncertainty permeated my days and nights, rarely in life-enhancing ways. I was flummoxed by journal renewal cards and agitated before checkups. The uncertainty accompanying each recurrence rattled my confidence about the future, creating distress exceeded only by that of trying to make the right treatment decision.
The medical community and associated disciplines often talk about “managing uncertainty.” As a patient, I could never manage the uncertainty of my survivorship—at least not the way I'd managed my office staff or my money. No amount of knowledge, empowerment, or discipline could enable me to know the unknowable or predict the unpredictable.
Rather, my challenge was learning how to manage my reactions to uncertainty. I needed to resolve or rein in the distressing thoughts and feelings—anxiety, nightmares, confusion, vulnerability, and helplessness.
In my survivorship work, I focus on “managing patients' reactions to uncertainty” instead of “managing uncertainty.” Adding these three words is not trivial semantics. It shifts the locus of concern from uncertainty to patients. And instead of singling out the sensation of feeling uncertain, it casts a wider net that captures the spectrum of patients' emotions, preconceptions, and beliefs that come into play when faced with uncertainty.
For ease of discussion I'll use “managing patients' reactions to uncertainty” and “managing uncertainty” interchangeably. But unless otherwise specified, I'm referring to the former.
Two Types of Uncertainty
To create order among the countless issues of uncertainty in survivorship, I use a well-known distinction between two types of uncertainty in the world. The first is uncertainty due to lack of information. This lack can be due to incomplete acquisition of available information or to persistent mysteries.
So, for example, let's say your patient reports a new symptom. You respond to the uncertainty about what's happening by orchestrating an evaluation. After making a diagnosis, you respond to the uncertainty about what to do by comparing treatment options in the context of your particular patient's situation.
High-tech diagnostics and therapeutics have made tremendous progress in minimizing this type of uncertainty. Yet every time you can't nail down a diagnosis—because you can't obtain a proper history or some aspect of the disease process remains unexplained—you deal with uncertainty due to lack of information.
The second type of uncertainty relates to probability, namely the statistical chance of something being what you think it is or happening the way you expect it to happen. Every time you write a prescription or offer a prognosis, you have to settle for doing your best within the limits of probabilistic uncertainty.
Two Categories of Patient Issues
Along with distinguishing two types of uncertainty, I frame all issues of survivorship in terms of two overlapping categories: decision-making and quality of life. This construct lends itself well to developing interventions, because patients' decisions and quality of life define every sphere of survivorship.
In your efforts to guide patients toward wise decisions, ask: How are my patients' reactions to uncertainty shaping their decisions about treatment? About lifestyle and behavior modification? About work or school? About home life and relationships?
In your efforts to fulfill Osler's directive to “relieve as often as possible and comfort always,” ask yourself: How are my patients' reactions to uncertainty affecting their ability to tolerate treatment? To eat and sleep? To relate to others? To fulfill roles? And to engage in meaningful, sexual or joyful endeavors?”
Compassionate care depends on understanding how patients' reactions to uncertainty impact their decisions and quality of life.
In my next column, I'll outline the approach to uncertainty that has helped me get good care and live as fully as possible after cancer.