For Randi Oster, patient advocate and Right Care Alliance member, the hardest part of her father’s cancer wasn’t getting him through treatment – it was getting his doctors to listen to what he wanted.
As Oster writes in a Washington Post op-ed, even though her father kept saying he did not want chemo and radiation to treat his terminal brain cancer, their family felt enormous pressure to do “everything they could” to prolong his life. It wasn’t until their family realized that he would live only six months longer with surgery, and have to endure chemo, radiation, and other side effects, that they realized that surgery was the wrong choice.
“He preferred eight weeks of being with his family over eight months of disability and unpleasant treatments,” writes Oster.
Oster is by no means the only family dealing with the difficult choice of what treatment to give their loved ones facing a limited life span. Her op-ed garnered hundreds of comments from families going through the same challenge. A recent Kaiser Health News article highlights the widespread practice of older patients undergoing surgery from which they are unlikely to benefit. Even patients who repeatedly voice their desire against more medical intervention, or sign a DNR, can find themselves in surgery or having a procedure without their informed consent.
When it comes to end-of-life care, we have a crisis of communication. Most older patients with limited life expectancy would decline surgery to prolong their life if the outcome were severe functional impairment. However, in the moment when we have to decide whether or not to have surgery, the decision becomes very stressful and information gets lost. Often patients and their families aren’t aware of the likelihood of functional impairment after surgery – they believe that a successful surgery would mean “going back to normal.” Doctors’ descriptions of what is likely to happen after surgery can be vague, or focus on the acute problem (“We can fix this”) rather than looking at how the intervention would affect the patient as a whole.
Fortunately, surgeons like Dr. Margaret Schwartze at the University of Wisconsin School of Medicine and Public Health are working on communication tools that make these difficult decisions more clear. Their team’s “Best Case/ Worst Case” decision tool uses stories, not statistics, to describe the best and worst possible outcomes of surgery. Breaking bad news is never easy, but it’s essential to communicate the options clearly, so patients and their families can make informed choices.