A few years ago I had surgery for a severed tendon. I felt like I was in a daze from the minute of the injury all the way to the beginning of physical therapy. My doctor was very easy to talk to, continually ensuring my comfort and trying to manage my expectations. I remember when I first met him, the first thing I asked was when I would be able to return to work. He laughed and told me that I shouldn’t worry about work right now. I admit that I initially felt relieved to not have to think about work but over time the uncertainty made me uneasy. I just wanted him to tell me that things would get back to the way they were.
My doctor and I had different perspectives of what a successful outcome would be. The consultations, treatments, and surgery were all to repair my tendon. I remember after the 90 days and still being unable to walk without crutches, and hearing him tell me that my recovery was exactly on schedule. This was news to me, I thought I’d be playing soccer again already.
Recently the New England Journal of Medicine conducted a study on patient expectations. The study shows that patients with metastatic cancer frequently misunderstand the goal or intention of chemotherapy. They surveyed almost 1200 patients who were diagnosed with Stage IV lung or colorectal cancer and found that the vast majority held hopes that they would eventually be cured. While chemotherapy under these circumstances can prolong life by weeks or months, it is not curative. Overall, 69% of patients with lung cancer and 81% of those with colorectal cancer said they didn’t understand that chemotherapy was not at all likely to cure their cancer.
These types of misunderstandings can compromise our ability to make informed treatment decisions. It was only after my 90-day evaluation that I realized my doctor and I had different expectations. It took an additional 2 months of physical therapy for me to comfortably walk on my own. In the end I didn’t regain a full range of motion, and still can’t sit in the lotus position, among other things. Understanding expectations is even more key in cancer patients, considering that any misconceptions can interfere with proper end of life planning.
One of the study’s conclusions is that doctors can play a key role in aligning patients’ expectations with reality. They can help us accept and cope with hard news so that we can truly minimize futile, costly, and possibly toxic treatments. It also helps to have a doctor that remains firm throughout the entire process. My doctor was saying the same thing to me from day one, I only chose to listen on day 90.