Planning for an Unpredictable Cancer

A diagnosis of incurable cancer leaves many patients and families grappling with confusion, grief and other intense emotions. It’s important to let those feelings happen, says Margaret Bevans, a clinical nurse scientist at the National Institutes of Health Clinical Center in Bethesda, Md. And, at some point, it will be important to find some calm amid the storm, a time in which the patient and family can make careful, informed decisions and consider how to live.

She and other experts can list issues that patients diagnosed with incurable cancer might think about or discuss with loved ones or doctors. But it’s important to recognize that individual medical situations and personal values make each case unique, they say. A “one-size-fits-all approach” won’t work.

Consider:

Time. The minute a patient receives bad medical news is not always the best time to make a decision about next steps. Take the time necessary to absorb the news before considering options.

Information. Patients should bring a friend or family member to appointments, for emotional and practical support. Ask them to take notes. Ask doctors to repeat unclear information and to speak in plain language. Ask about possible outcomes vs. probable ones, chances of response to therapy and average time of response, side effects, clinical trials. Prepare two lists of questions: One with questions to ask if the news is good; another if it’s not.

Therapy. Talking with a psychotherapist may help reduce anxiety, which can improve quality of life.

Practical affairs. Basics to consider: an advanced directive, a will, a financial plan, guardianship, hospice services, funeral details.

Life matters. As important as it is for patients to let loved ones know where and how they want to die, it’s also important to let them know where and how they want to live. Do they want to visit friends or family across the country? Would travel plans influence the timing of chemotherapy or other treatments? What about planting next year’s garden?

“When people are told they are not going to be able to be cured, it sometimes makes them think they’re going to die tomorrow,” Bevans says. “It doesn’t mean that there aren’t ways for them to live.”