04 August 2010

The Cliff

I finally got a chance to read Atul Gawande's recent piece in the New Yorker, titled "Letting go," on hospice care and the medical profession's systematic failure in managing the dying process. It's an amazing article, and Gawande is an amazing writer. One graf jumped out at me:

One Saturday morning last winter, I met with a woman I had operated on the night before. She had been undergoing a procedure for the removal of an ovarian cyst when the gynecologist who was operating on her discovered that she had metastatic colon cancer. I was summoned, as a general surgeon, to see what could be done. I removed a section of her colon that had a large cancerous mass, but the cancer had already spread widely. I had not been able to get it all. Now I introduced myself. She said a resident had told her that a tumor was found and part of her colon had been excised.

Yes, I said. I’d been able to take out “the main area of involvement.” I explained how much bowel was removed, what the recovery would be like—everything except how much cancer there was. But then I remembered how timid I’d been with Sara Monopoli, and all those studies about how much doctors beat around the bush. So when she asked me to tell her more about the cancer, I explained that it had spread not only to her ovaries but also to her lymph nodes. I said that it had not been possible to remove all the disease. But I found myself almost immediately minimizing what I’d said. “We’ll bring in an oncologist,” I hastened to add.

“Chemotherapy can be very effective in these situations.”

She absorbed the news in silence, looking down at the blankets drawn over her mutinous body. Then she looked up at me. “Am I going to die?”

I flinched. “No, no,” I said. “Of course not.”

A few days later, I tried again. “We don’t have a cure,” I explained. “But treatment can hold the disease down for a long time.” The goal, I said, was to “prolong your life” as much as possible.

I’ve seen her regularly in the months since, as she embarked on chemotherapy. She has done well. So far, the cancer is in check. Once, I asked her and her husband about our initial conversations. They don’t remember them very fondly.

“That one phrase that you used—‘prolong your life’—it just . . .” She didn’t want to sound critical.

“It was kind of blunt,” her husband said.

“It sounded harsh,” she echoed. She felt as if I’d dropped her off a cliff.

This was striking in part because I have had to have this conversation many times over the last few months. This is not exactly a normal part of the practice of Emergency Medicine. In fact, I had this conversation just yesterday, and it went badly.

This was not a subtle diagnosis -- a sixtyish year old man with back pain and a huge, lumpy liver on exam. I got the CT and it showed innumerable nodular mets in the liver (probably colon primary but not certain). I sat own to tell him and broke the news as I usually do, along the lines of "Well, I got the scan results, and it gives us an explanation for the symptoms you have been having, but unfortunately, it's not very good news." (Pause here for the patient and family to brace themselves.) "We saw a number of spots on your liver. Based on the way they looked on the scan and based on what we have seen in the past with similar images I can tell you that this is almost certainly cancer."

This is generally where we go off-script. Once you drop the C-bomb, the reactions are all over the map. From tears to hysterics to calm questions, you never know where the conversation is going to go.

In this case, the wife reacted fairly typically with a gasp and tears, but the patient just kind of stared at me and said "OK, then." I thought, either he didn't hear me or he's in denial. I'd better emphasize the point a bit. So I added that while we didn't know the primary site of the cancer, it probably came from somewhere else and once cancer spreads to the liver, it is much more serious. Still no reaction.

"Do you understand?" I asked, and finally he responded.

"Yup," he said, "It's about what I figured. I've had a pretty good run. Thanks, though. I guess I'll be on my way." I tried to engage him in the next step -- seeing his doctor, an oncologist, chemo, etc, but he was uninterested. "No, I'm just gonna let this thing run its course."

Ah hell, I thought, I overdid it. Now he's already being fatalistic. Eventually I got him to agree to meet with his doctor and the oncologist (his wife was my ally in getting him to concede even that much). Lord alone knows whether he'll follow through with anything more.

He was probably shocked and maybe depressed, too, but I felt a little bad about dropping him off of the proverbial cliff.

11 comments:

Bongi said...

whenever i break the news of cancer i sort of hope they don't ask the relevant questions because in principle i answer truthfully.

"doctor, is this going to kill me?" for instance is not one of my favourite questions to answer.

but it's all part of the job.

Anonymous said...

I'm confused. Isn't that the better reaction for a patient to have, rather than hanging on to some false hopes and never coming to terms with death? What options does he have if he doesn't want to fight this off, and how would the oncologist enter the picture?

Anonymous said...

My 55 yr old otherwise healthy sister was dx'd last Monday with a malignant mullerian tumor of the uterus. The path report says it's a high grade leiomyosarcoma. With a week before the next visit we had time to research. It sucks. So when she was sitting in front of the oncologist every time he was vague & tried to rephrase the obvious she said it made her feel distrusting of him to tell her the truth. I think I am the same way tell me it's bad, give me the black & white & if I want to go home & die or be the guinea pig for everything you can throw at me, that is my choice. But please tell me the truth.

BC Cook said...

I'm in agreement with both Anonymous postings.
I also just read Gatawande's article and I yield to no one in my admiration of him. But gee wilikers!
Anyone who complains about the phrase "prolong your life" is way out there in CloudCookoo land.
I am stunned by Gatawande's (and your) reluctance to be honest with your patients.
The man with liver cancer was being true to himself and honestly, referring him to an oncologist so he can have treatment of dubious efficacy is just weak. Maybe he doesn't want to be poisoned and fried so he can have an extra few months of misery.
I am 68-years-old and I don't want my doctor pussy-footing around the facts. Just tell me the truth. Tell me my options. But don't treat me like a child -- and a dim-witted child at that.

Celeste said...

I'm in agreement with each of your posters above. I think most people understand that cancer that has spread to the liver is the thing you will die of, and probably soon. I know I do. For one thing it means an aggressive cancer that might be in your bones or brain too, and for another you can't survive without a liver.

I for one would not want my life "prolonged". It's not the good times that will be prolonged, it's the crappy ones. I wouldn't blame that man for not going to see the oncologist. Why waste precious time in a doctor's office if there is nothing you want him to do for your fatal disease? Go fishing or spend some time with your people or see if there's something on your bucket list you can manage. Do all you can, as long as you can. But don't prolong your time as a cancer patient. That's something nobody wants to be.

Anonymous said...

It's a daily occurrence for every hopsitalist in this country. It's usually when the patient is comatose and some family who have had no interaction with the patient are making the decisions.

"Your relative is dying, will never leave the hospital, and is suffereing."

But we want everything done; maybe a miracle will occur.

Why does our system allow and even encourage doctors and nurses to harm dying people while calling it "doing everything?"

Anonymous said...

Easy for all who have never been diagnosed with cancer to "know" what they will do when it's their turn. As someone who has had cancer and worked in the cancer field for over 35 years, no one ever really knows what they'll do...they just think they do! A consulting opinion with an oncologist isn't a commitment to do treatment...it's is what is considered the standard of care to give people the pertinent information, all the treatment options and supportive and end of life options and then to support them in whatever decision THEY make. And...it is not unusual for patients to change their mind when faced with the facts. Also important to mention...chemo and radiation frequently actually enhance quality of life if there is bulky tumor by managing difficult symptoms as well as for pain management. Unfortunately, for those of us who are in cancer care, Gawande is not telling us anything new. As a medical practioner and surgeon he should be ashamed that he is just now finding out what Hospice care offers patients and families!

Anonymous said...

To Anon @ 9:05

Tell families who are hoping for miracles that miracles can happen at home just as easily as in the hospital.

Kipper said...

This topic has struck very close to my heart lately. Thank you for this post.

Stacey said...

I don't think your liver cancer patient was being necessarily fatalistic - it all depends on his previous experiences on how much he's interacted with other cancer patients etc. My parents have lost many friends in the past decade to a variety of cancers, and in every case, there was only a short period of time in which any therapy actually improved quality of life - therefore, they've fairly well decided they'd prefer not to go to extreme lengths to "prolong life".

For the most part doctors and patients both want the same thing and that is something that involves the word cure. However, when dealing with any sort of recurring disease, be it cancer, autoimmunity, etc, trying to provide that hope will only result in a bigger depression and fatalism when the inevitable relapse and retreatment occurs, IMO

shadowfax said...

Thanks to all for the responses. A couple of follow-up thoughts:

1. I think a lot of doctors (especially myself) hedge on the "You're dying" question because of genuine uncertainty. Yes, this cancer has a five year survival rate of 5%, but I don't know where you personally will fall out on the curve, and I really don't want to be definitive and tell you that you're as good as dead. Some patients may hear that and simply give up, some may be encouraged by that 5% chance, but most of the time an accurate estimate is really ard to come by.

2. On Gawande: He graduated medical school in 1992 when hospice was far less developed as a service line, and only finished his surgical training in 2003 (he was in politics and public health in between). So he's been pretty insulated from the areas of medicine where one would interact with hospice. I'm not gonna harsh on hom for coming late to this game.

3. On my patient's fatalism. My read is that it was a reflex reaction, not a considered decision. It was more akin to denial than an informed choice. He may ultimately choose to forego treatment, of course, but as an initial response it's more suggestive of a psychologic defense mechanism.