It’s hard to give bad news to people. When I worked as an attorney I had to give people bad legal or financial news, like the lawsuit you’ve made the center of your existence is probably a loser or in order to save your house from debt collectors you’ll need to turn your grandson to the police because he admitted to me he stole your identity and ran up your credit card bills. But this is nothing compared with the kind of bad news that doctors need to deliver to their patients all too often.
This came to mind after reading a piece on WHYY’s website about training of medical professionals on properly giving bad news to patients. It quotes Dr. Anthony Back, an oncologist at the University of Washington, describing a situation all too many cancer patients have endured at the hands of well meaning doctors who are clueless when it comes to communicating to patients,
“When I was doing my oncology training, I would sit through so many visits between expert oncologists and patients where the experts would talk in great, great detail about all the scientific breakthroughs that they were trying to deliver to them, and the patients would leave totally confused,” Back recalls. “Not only would they leave totally confused, but they would leave not making good decisions for themselves, and decisions that were not really matching what they wanted and needed from their health care.”
This kind of training is a small step away from how cancer patients have been traditionally cared for, pumping them with chemo, drilling them with radiation or putting them through surgery after surgery even if there was no realistic hope of a cure or even an extended remission. This is a move towards finding out what the patient wants, while being aware of their emotional as well as medical situations, informing patients of the realities they face and enabling patients to make the best decisions they can.
I’ve gotten a fair amount of bad news during my treatment. I was told over the phone that the reason I’d been chronically ill for two years probably was lymphoma, which type was unknown. When the call came I was literally on the toilet and was so eager to get any news about what was making me so ill that I didn’t do the polite thing and call back. I received life altering news sitting on the can with my pants around my ankles.
I remember also getting news of my surgical biopsy over the phone, confirming it was Hodgkin’s lymphoma. I was ironing at the time, with my pants on. At first I thought I should start calling loved ones, but decided that could wait until I finished ironing. It was one of the first points in my “cancer life” that I was going to live my life as best I could, that cancer didn’t have to be the focus of my life.
My first oncologist told me about my first relapse in person. He gave me the news pretty matter-of-factly then left the room to give me time and space to deal with it before coming back to talk to me again. I learned of my second relapse over the phone. I was at work and was told three tumors were spotted in a CT scan in my liver. I took the rest of the day off.
A couple months later I got a second opinion from a well respected doctor at a world famous cancer center who told me, as best as I can remember, “There’s no easy way to tell you this so I’ll just come out and say it. You’ll never get rid of this disease.” That is the easy way to say it. He could’ve said, “This disease will kill you and there’s nothing you can do about it.”
He said he’d never had a patient with relapsed Hodgkin’s lymphoma cured with an allogeneic bone marrow transplant and recommended I not have one. He said I might “get lucky” with a monoclonal antibody treatment study they were working on. I ignored his advice, had the transplant and it probably saved my life. I’ve been in remission for nearly twelve years.
During a conversation with one of my doctors, Peter Tutschka, I asked him about how he gave bad news. He said it was important to give patients options, to give them choices, about how they would be treated, even in the most bleak situation. That didn’t surprise me about Dr. Tutschka, because he was all about the patient.
As much as we may complain about doctors and how they relate to patients, it must be awesomely hard to give bad news to cancer patients. We all have different personalities, different priorities, different cultural backgrounds. Delivering bad news appropriately may vary from person to person and that requires doctors getting to get to know us well, above and beyond our treatment history and latest test results.
Without taking the time and energy needed to get to know patients, a doctor is doomed to being a bad bearer of bad news. In today’s health care system time with patients can be seen as a luxury, sacrificed to see as many patients as possible and generate as much revenue as possible. No amount of training will change that.