Why Making Treatment Decisions Can Be Hard

In recent years an emphasis on patient autonomy has increased individuals’ involvement in their health care decisions.

For instance, in the area of cancer, men diagnosed with prostate cancer may be given the choice to engage in simple surveillance, or “watchful waiting,” versus more invasive procedures like surgery or radiation, based on their personal preferences for more versus less aggressive treatment and concerns related to quality of life, like sexual functioning, and urinary continence.

Similarly, many women with early-stage breast cancer can be offered the choice of breast-conservation surgery, which removes just the tumor and a margin of normal tissue, paired with radiation therapy versus mastectomy (removal of the breast) with or without breast reconstruction. Women with a family history of breast and/or ovarian cancer can choose to be tested for a genetic susceptibility that confers a higher likelihood of eventually developing it. And, if they test positive for this susceptibility, they can decide whether to engage in increased surveillance or prophylactic measures, such as surgical removal of their breasts/and or ovaries or taking chemopreventive drugs like tamoxifen or raloxifene.¹ They also have the opportunity decide whether to share their genetic test results with other members of their family, particularly first-degree relatives like siblings or children, for whom this information would be relevant to their own personal health history. Women who are aged 40-49 are recommended by some organizations to work out, in consultation with their health care provider, a schedule of mammograms that squares with their feelings regarding the balance of the advantages of early detection with the drawbacks of possible false positive results and unnecessary biopsies.²

Choice is valued in our culture, and changes in health care practice are partly due to activist efforts that promoted more freedom for patients in their own care and management of risk. There are, however, a few downsides of this level of choice.

We may not make our decisions as soundly as we might hope. Research on affective forecasting, or our ability to anticipate our feelings should certain future events transpire, suggests that we overestimate how poorly we may feel in response to negative outcomes and how elated we may feel in response to positive outcomes. This so-called psychological immune system helps us cope well with the slings and arrows of life, but also may drive us to make choices rooted in unfounded fear or zeal.³

We may be subject to optimistic biases, particularly when we interpret a poor prognosis. When we hear a prognosis that indicates a low likelihood of survival, we can be subject to interpreting it in a rosier light, often invoking the particulars of the situation, like a person’s specific strengths, to justify these judgments.⁴ While this relates to our ability to stay hopeful in the face of bad news, it is possible that this type of interpretation could also color treatment decisions.

The freedom to choose can have unanticipated negative psychological consequences. Although this is most likely to be the case when we have a large array of options to choose from, having choice can be paralyzing in that it is makes it more difficult for us to arrive at a decision we feel is right; the lost opportunity costs of the options we didn’t choose may lead us to regret our choices; and, if we end up with an unfavorable outcome, having had the opportunity to choose a course of action means we may feel more responsible for its results.⁵

People have different degrees of preference for decisional control. While autonomy resonates with values of freedom and may be welcome by some people, others may not want to be so in charge of their decisions. A recent study of advanced cancer patients found that individuals varied with respect to whether they wished to make decisions themselves, share the decision making with their doctor and family, or have decisions made on their behalf by their doctor and family.⁶ In addition, there was a mismatch between patients' wishes and the actual process in a significant proportion (35%) of the sample. Despite this, a majority of patients were still satisfied with the decision making process itself.

For patients who find themselves facing a treatment decision, there are some sources of support. Decision aids are available for various topics related to cancer risk management and decision making as well as other health conditions.⁷ Decision aids are essentially tools that help people clarify their own values and become knowledgeable about the options at hand and their respective outcomes. They can take different forms, including brochures, informational scripts, counseling, software programs, audiotapes, videos, and workbooks. In general, these have been shown to increase knowledge in people with cancer or at increased risk for cancer, and show limited support for reducing decisional conflict.⁸ In terms of making sound decisions, decision aids seem to help patients make choices that reduce risk in those who are high risk (such as increasing preference for prophylactic mastectomy) and decrease the likelihood of preferences for extensive treatment for patients who are at relatively low risk.