Terrible, cruel visit @ MDA

[hannahw]

There's a book called "The Anatomy of Hope" by Dr. Jerome Groopman which is a series of short stories about Groopman's experiences, particularly his failings, as a doctor. It's interesting because he clearly tries to do right and yet it doesn't always turn out as he hoped. There are two stories that sort of book end the complexity.

Early in his career he had an experience with a patient where he was following the lead of a more experienced physician. When the patient achieved remission, the doctor chose to emphasize the remission and not discuss the likelihood of recurrence. The patient asked, "Am I cured?" and the doctor said "You're on your way to remission." Without further discussion, the patient took it to mean she was out of the woods. Groopman didn't choose what info was communicated, but he admits that not discussing the differences between remission and cure made the visit easier. Groopman had his doubts about what they were communicating, but he went with it anyway. The physician in charge told him "sustained ignorance is a form of bliss." When the cancer returned, the patient and her daughter were devastated. The daughter spoke to Groopman and said "I guess he didn't think people like us are smart enough or strong enough to handle the truth." And Groopman responded, "It wasn't a question of smart enough. And it wasn't specific to your mom and you. We were trying to spare you the worry." The daughter then said, "Well, you were both wrong."

Groopman felt ashamed and guilty. He knew he had failed the patient and her daughter. He vowed not to make the same mistake again and began to be direct with his patients about their disease and prognosis. He told one woman that a remission would likely last between three and six months and that a person could expect to survive one to two years. Groopman felt he was communicating in the right way because he was clearly and completely informing his patient. The patient had an excellent response to chemo. Groopman later learned from the patient's husband, after the patient had died, that the months of remission were not months that were enjoyed. The patient was consumed with thoughts of her presumed expiration date.

As Groopman laments, these two patients were not the only two to suffer from his "ineptitude" as he struggled to find a balance. He also notes that the doctor who had been overseeing him was later diagnosed with cancer and that his experience as a patient changed him profoundly. He had come to realize that ignorance is not bliss. That truth and hope can coexist. But it took being a patient himself before he really understood the consequences of his communication.

Anyway, it just seems like there are no easy answers when it comes to communication. If anyone is looking for an interesting read, "The Anatomy of Hope" is fascinating.

[Hapa]

Had to Edit - meant to save to draft before sending....

It is a shame that your Dr. had such a turn around of attitude. I hope you find a new Dr. soon!

a little off topic - Has anybody seen the moving called " The Doctor"? It's from 1991. William Hurt plays a rich successful Doctor and then he gets throat cancer. All of a sudden he is treated the way he treated people. It's loosely based on a true story.

[concernedrelative]

Hannahw-- What a profoundly wonderful note and book ref! Ordered it right away. Thank you 1000 times. Concerned Relative

[juliej]

Another interesting book is "The Emperor of All Maladies." The author, Siddhartha Mukherjee, decided to write a history of cancer when a terminal cancer patient asked him a simple question: could he explain exactly "what it is I'm battling?" It worries me when patients have a poor understanding of their disease, their treatment, their prognosis, etc.

Another interesting thing is how doctors change when they are diagnosed with cancer and the role is reversed. I remember the story of Dr. Desiree Pardi, who was a leading practitioner in palliative care (Medical Director at Weill Cornell Palliative Care). After years of encouraging patients to confront their illness and "accept death," she refused palliative care, demanded aggressive treatments, had doctors communicate with her husband so she wouldn't know the extent of her cancer, and in the end, even refused hospice. Even those who preach the gospel of palliative care aren't immune to the fear of dying.

http://www.nytimes.com/2010/04/04/health/04doctor.html?pagewanted=all

[janeandrea]

a little off topic - Has anybody seen the moving called " The Doctor"? It's from 1991. William Hurt plays a rich successful Doctor and then he gets throat cancer. All of a sudden he is treated the way he treated people. It's loosely based on a true story.

This movie was required watching for our 2nd year med students at UIC College of Medicine. I think it should be required of ALL med students and doctors!

[hannahw]

Hannahw-- What a profoundly wonderful note and book ref! Ordered it right away. Thank you 1000 times. Concerned Relative

I hope it will be as meaningful to you as it has been to me. It doesn't excuse the failures, it puts some perspective around them. I think maybe, at first, I expected the doctor to be infallible and when that didn't happen it was scary. Made me feel like everything about our situation was wrong. If this doc couldn't get it right, how could our family get it right?

I feel like I communicate better with my Dad's doctors, and understand more what they're trying to say to us (even when they don't actually say it). It also helped me figure out and appreciate what we're trying to achieve and why we're trying to achieve it.

[janeandrea]

Earlier in this thread (I think it was this one), I mentioned what I did for a living before I ultimately had to retire due to this cancer. Somewhere later, someone mentioned that doctors should be trained in Giving Bad News...I don't remember now (CHEMO-BRAIN!! ) if I specifically responded to that post, but I definitely thought to. Anyway, on another thread, someone had posted a link to a great NYTimes article, and when reading that article, I came across this link for this video.

THIS is what I used to do. I started out as a Standardized Patient (like the 'actor' in this clip) when I was a full-time (read: held lots of part time jobs ) actor, needing to make money. Long story short, I eventually went on staff full-time, and retired as the Assistant Director of the department.

Below is the link to a video looking at one type of Standardized Patient scenario, luckily for us, about Giving Bad News. This is not my medical school. I worked for the University of Illinois at Chicago (UIC). A little plug for UIC, though: we were one of the pioneers of Standardized Patient education).

http://www.nytimes.com/video/2009/08/19/nyregion/1247463600312/delivering-bad-news.html?ref=monthstolive