Learning of ALS diagnosis a trying experience

Editor's note: This is part of our continuing series of stories about Bruce Kramer, the former dean of the College of Education, Leadership and Counseling at the University of St. Thomas, as he copes with life after being diagnosed with ALS, also known as Lou Gehrig's Disease. You can read all the stories in the series by clicking here.

No one wants to hear bad news, especially from a doctor. The diagnosis of a terminal illness can be high drama in the movies, as in this old scene with Jimmy Stewart and John Wayne.

John Wayne: Why don't you just say it? Flat out!

Jimmy Stewart: All right. You have a cancer! Advanced.

Being John Wayne, the patient takes the news stoically. But in real life, a medical verdict so grim and blunt would send shock waves of fear and disbelief through a patient. In December 2010, Bruce Kramer heard such a diagnosis -- and the way it was delivered would go on to haunt him.

The diagnosis itself was bad enough: Kramer was suffering from ALS, a progressive, ultimately fatal neurodegenerative disease. But the manner of the doctor who gave him the news made hearing it harder than it had to be.

Sitting across a large desk from his patient, the neurologist was terse and businesslike. He never looked directly at Bruce or his wife, Ev, who was relegated to a chair in the corner of the room. The doctor delivered the news quickly, without feeling.

"A lot of our physicians are not trained to be vulnerable. They're trained to be objective and to see their patients as objects to be dealt with."

"I've written about it a number of times in my blog," Kramer recalled recently, "just how violent and how harmful the experience was. But it really wasn't until this past December, when I marked the third anniversary of my diagnosis, that I kind of got my head around why it continued to haunt me so much."

Kramer said he realized that the "moment when you tell someone that their lives are going to change forever is a holy moment ... I think it's a moment where vulnerability is meant to be shared.

"And I recognize that a lot of our physicians are not trained to be vulnerable. They're trained to be objective and to see their patients as objects to be dealt with. ...

"I'm not sure if that kind of objectivity is really appropriate. And so, for three years, I've noodled on that."

Finally, Kramer made a decision: He would go back to the physician who made the original ALS diagnosis. He saw it as "the opportunity to close a circle."

"From the point of view of my own peace of mind, I felt I had to try to go back and at least share as truthfully as I could ... this is how it felt, this is what it was like, and this is what it did," he said. And what it did not only to him, but to Ev.

"I allowed something to take place that I knew was wrong," he reflected. "I knew it was wrong from the minute I got there, and I allowed it to take place in a way that hurt the person that I love more life itself. And that part is a regret, deep regret."

Kramer is circumspect about the doctor's reaction to his visit.

"I'll just say this," he said. "If someone like me came into your office — and you haven't seen them in three years — and laid this out pretty carefully, I would think that this would take you by surprise." He went on to acknowledge that the doctor was "a little" defensive, "and I think rightfully so, but in the end I think we parted cordially.

"He asked me to take his apology to my wife."

To help others avoid the kind of pain he and Ev felt, Kramer has spoken several times to medical students about his experience. He thinks students are beginning to receive better training, he said, judging from "the concern that I have seen from so many young doctors."

Dr. James Nixon, vice chair for education at the University of Minnesota Medical School, suggested that some doctors may not be as uninvolved as they appear.

"There's a way to do it and there's a way not to do it."

"I think sometimes it's our own anxiety around the subject," he said. "It's the fact that it's really hard to deliver bad news. You know there's the patient's side, but then it takes a toll on the physician as well. And it's hard, and I think that some physicians may just kind of, almost as a defense mechanism, be overly insensitive in how they're delivering it." He said such doctors may be "stepping back almost into a bubble of clinical-ness, rather than feeling emotion."

Medical students at the university engage in simulations that not only test their skills at diagnosing a virtual patient but also let them practice delivering bad news. Students get real-life experience by watching doctors talk to their patients about a life-changing diagnosis.

"I think over the years we've appreciated that this is actually a skill set, delivering bad news, and there is a best practice," Nixon said. "There's a way to do it and there's a way not to do it."

Medical student Alyssa Larish said she's benefited from the instruction. "I have gotten to see several of these discussions before, and I've learned tips for how you need to walk into a room and take the temperature and assess where everyone's understanding is," she said.

And she needed that knowledge sooner than she expected, when a patient asked that she be the one to deliver a difficult diagnosis.

"To be honest with you, I cried afterwards," Larish said. "I sat in the call room and I took a minute to compose myself. I cared quite a bit about the patient, and I know it was going to be a difficult challenge for them over the next several months."

Kramer is glad to see young doctors develop their sensitivity skills, and he's eager to help.

"What doctors say is like the Ten Commandments," he said. "It's from God on high. And I know that they are struggling with the same kinds of decisions that I would be struggling with."

He said he hopes that doctors will come to see their patients as equal partners, and that they will remember to use care when giving those partners a difficult diagnosis.

"Even the people that say, 'Just tell me what I've got. Just tell me what to do.' They're not really saying that," Kramer said. "They want the bottom line because the bottom line at least gets them a sense of surety, but there is no surety.

"I also think it gets us out of the falseness of being diagnosed with a mortal disease, and rather allows us to see that you have been given a life sentence — not a death sentence — for how are you going to choose to live the rest of your life, with the help of some very talented people."