We've known for years that cancer patients think their life expectancy is considerably greater than it really is--and that their oncologists think it is. This kind of wishful thinking has serious consequences: patients who believe they have years to live are likely to want their doctors to do everything possible to prolong their lives, even if the treatment is painful and risky. Patients who believe their time is very limited tend to want their doctors to provide treatment geared to promoting quality of life. This past week, a new study published in JAMA Internal Medicine by Melissa Wachterman and colleagues reports a similar gap between dialysis patients and their nephrologists.
A small group of dialysis patients (half of whom were over age 70) were interviewed along with their kidney doctors. The patients were significantly more likely than the doctors to believe they would be alive in one year or in five years, and were almost twice as likely as their doctors to think they were candidates for a kidney transplant. As with cancer patients, the majority of kidney failure patients who were pretty sure they would be alive in a year wanted medical treatment focused on extending life (though just under half did not) but fewer than ten percent of those patients who were not so sure they would live a year wanted a focus on life prolongation.
This study confirms how important it is for patients to understand the nature of their illness. All too often, physicians try to determine their patients' goals of care and corresponding treatment preferences without first making sure patients know their prognosis. But people rarely have fixed views about what is best for them--whether living longer or being comfortable or remaining independent is paramount depends on their situation. Physicians need to be clear with their patients about what they can expect and patients should push their doctors to tell them.
What is not addressed in the Wachterman study--and what may be even more important for patients to grasp if they are to make informed decisions about treatment--is the overall trajectory of their illness, not just prognosis in the narrow sense of survival time. Patients need to know in general terms what they are likely to experience in the coming weeks, months, or years: will they be able to stay at home or will they need extensive personal assistance, perhaps living in a nursing home? Will they need to spend a lot of time in the hospital? Are they likely to experience frequent relapses followed by improvement or should they anticipate a slow downward slide? Planning for future care is tremendously important for every person with a serious illness. And gaining a good understanding of one's general medical condition is the crucial first step in advance care planning.