She was thin, white skin stretched over bones like worn parchment over old sticks being rhythmically blown in the wind as her chest rose and fell, each time with what seemed like a major effort. Incongruous with the rest of her body, her abdomen was distended, a balloon that looked dangerously close to popping, also rising and falling with each breath. She moaned softly and looked at me.
I introduced myself, told her I was a surgeon, and continued, “Your oncologist asked me to see you about your belly pain.”
“Go ahead,” she croaked, hardly acknowledging my presence in the way that patients who had become so utterly used to being poked and prodded multiple times a day by doctors that they no longer thought it odd or unusual anymore.
Before entering the room, I had perused the woman’s chart. She had been diagnosed with colon cancer three years ago and undergone an apparently successful resection. Unfortunately, she had had mesenteric lymph nodes that had been found to have tumor in them; so she then endured adjuvant chemotherapy and come out of it thinking that she was home free.
She wasn’t. A few months ago, she started losing weight, although she was also on a diet. She thought little of it initially but had been thinking of seeing her doctor because she was concerned that maybe she was losing more weight than she should have been when her nausea and vomiting struck.
Cancer is a patient and clever foe. Even after being cut out with steel and electrical fire and blasted with toxic chemicals, all too often a few cells remain, and a few cells are all it takes for the tumor to reassert itself, which is exactly what this woman’s tumor had couple of days prior, although she hadn’t known it yet, when persistent feelings of nausea, vague abdominal pain and bloating, and obstipation had led her to seek medical attention, as she noticed that she hadn’t had a bowel movement in several days and hadn’t passed flatus in at least a day. Her doctor admitted her, of course, as nausea had become more and more intractable as her abdomen had grown and grown She was hydrated with IV fluids, and a nasogastric tube was inserted to relief what had become incessant vomiting, and there had been some decrease in the size of her belly. A CT scan was ordered as soon she was adequately hydrated, and to no one’s surprise it showed a high grade bowel obstruction.
Would that were all it showed! I had thought as I had pulled up the images on the hospital computer system.
It also showed carcinomatosis, a feared way that colorectal cancer all too often recurs, in which tiny tumor deposits spread along the peritoneum, the membrane that covers the organs within the abdomen. The deposits had spread and grown and coalesced into masses ranging in size from golf balls to cannon balls. I exaggerate, but not by much. Worse, her liver was studded with dozens of tumor deposits that practically filled its entire substance, and there were several small masses in her lungs. Cancer, that disease that she thought that she had beaten, had had the last laugh.
I questioned her a bit more about her history and then examined her. Her abdomen was quite distended, but she had no signs of peritonitis. Not surprisingly, she had an Sister Mary Joseph lymph node on physical examination and Blumer’s shelf on rectal examination. She clearly had not only carcinomatosis but widespread metastases. As is all too often the case when a surgeon is called for these situations, there was little or nothing I could do for her. Certainly there was nothing I could to do relieve her obstruction enough that she could ever eat again. Wading into an abdomen of carcinomatosis is not something to be undertaken lightly, as even in the best of circumstances the chances of relieving the obstruction and getting the patient out of the hospital and back to eating regular food are not great, even worse if the carcinomatosis is widespread. It is definitely not something to be undertaken in a patient whose life expectancy due to widespread metastases will be slow short. It’s generally only to be done if there is no evidence of disease outside of the peritoneal cavity (because metastases in liver or lung portend such a poor prognosis) and if the surgeon, in his or her judgment, has a reasonable chance of doing some good with an acceptable rate of morbidity and mortality. Truly, few things drive home the limits of surgery more than a case like this. Still, her oncologist (or, more likely, the oncology fellow) had called to ask us to take a look, and I was obligated to discuss the patient’s situation with her honestly.
But first I had to know one thing. I sat down in the chair next to her bed, looked her in the eye, and leaned in as I said, “Has anyone discussed the issue of code status with you? What would you want done for you if things got really bad?”
“No,” she said. “What do you mean by code status?”
Then it hit me. No one had discussed with this patient just how dire her situation was; so, as used to happen all too often when I still took general surgical oncology call, it fell on me to break the news to her. Think about it. It was the first time I ever met this woman, and I had to explain to her that her disease was terminal, she didn’t have much time left, and that there was probably nothing I could do to relieve her bowel obstruction. The only thing I could do would be to suggest that a gastroenterologist try to place a percutaneous gastrostomy (PEG) tube, so that she wouldn’t have to die with a tube in her nose, or, if the GI doctor couldn’t do it because of abdominal wall tumor masses, to undertake a surgical placement of such a tube. Palliation, that’s all that could be offered. I had to explain that, if I were to operate, there would also be a not inconsiderable chance that she would never make it off the ventilator and would end up spending her last days in the ICU, hooked up to a ventilator and other machines. Was that the way she wanted to go out? Sometimes such discussions even happen in the emergency room when an acute deterioration leads the patient to seek emergency medical care, which is arguably last place on earth they should happen.
If the patient above were the only one presenting like that, I could write it off as a fluke, but she wasn’t. In fact, she’s an aggregate of several patients with terminal cancer whom I’ve been asked to see over the years for acute abdominal complaints. Others have included patients with even more extensive metastatic disease who developed signs of acute intra-abdominal infection, a situation that is in a way even more difficult to deal with. I intentionally constructed the hypothetical patient above as only having been diagnosed with metastatic disease in the last couple of days. One might be able to cut her doctors some slack for not yet having had “the talk” with her. Also, she probably did have some time left and could go into hospice and have a chance at a decent few weeks or months to get her affairs in order before her disease claimed her. However, I’ve been called to see patients with widespread metastatic disease whose dismal prognosis has been known for a months at the time they present with an intra-abdominal catastrophy of some sort: peritonitis or dead bowel, for example. For such patients, the decision not to operate is in essence a decision to let the patient die now rather than weeks or months from now. If the way hasn’t been prepared with a discussion beforehand with the patient about what she wanted her doctors to do in just such a life-threatening catastrophe, end-of-life issues are much more traumatic and difficult than they need to be for the patient and her family, as well as for her doctors. Moreover, if the doctor hasn’t discussed the issue with the patient, you can be sure that the family won’t be prepared for an acute deterioration in the patient’s condition and will flounder over what to do if the patient cannot voice her wishes for herself. Aggressive intervention may be undertaking, up to and including an operation, even though it would almost certainly achieve little.
I don’t mean to be criticizing oncologists. Many are incredibly good about discussing frankly end-of-life with their patients. However, all too many are not, and now there’s hard evidence that shows just how bad we as a profession do at dealing with these critical issues in oncology. A study presented at the ASCO Meeting a couple of weeks ago showed:
CHICAGO, Illinois (AP) — One look at Eileen Mulligan lying soberly on the exam table and Dr. John Marshall knew the time for the Big Talk had arrived.
Eileen Mulligan’s doctor told her upfront that there are no good treatment options left to try for her cancer.
He began gently. The chemotherapy is not helping. The cancer is advanced. There are no good options left to try. It would be good to look into hospice care.
“At first I was really shocked. But after, I thought it was a really good way of handling a situation like that,” said Mulligan, who now is making a “bucket list” — things to do before she dies. Top priority: getting her busy sons to come for a weekend at her Washington, D.C., home.
Many people do not get such straight talk from doctors, who often think they are doing patients a favor by keeping hope alive.
New research shows they are wrong.
Only one-third of terminally ill cancer patients in a new, federally funded study said their doctors had discussed end-of-life care.
Like Gruntdoc, I had always suspected as much, ever since I first started specializing in cancer surgery and getting called to see patients like the ones I discussed above. Why do we physicians fail to have frank talks with terminal illnesses about their true prognosis, choosing instead to couch our discussions in euphemisms and vagueness often designed to avoid a direct discussion of the uncomfortable issues involved? Why do we surgeons sometimes offer patients with stage IV cancer big operations to try to reverse only temporarily terminal progression of their disease? We’re not talking aggressive tour de force operations intended to cure, which can sometimes be justified, either. I tend to think it’s because, despite all our training, we are human and fear death as much as anyone else. We fool ourselves into thinking otherwise because we see it so often and tell ourselves we’ve become inured to it. Also, even in 2008, we still appear to labor under a myth that discussing these issues with patients will hurt them somehow, perhaps by crushing their hope or inducing intractable depression. This study suggests that such fears are indeed myths:
Surprisingly, patients who had these talks were no more likely to become depressed than those who did not, the study found. They were less likely to spend their final days in hospitals, tethered to machines. They avoided costly, futile care. And their loved ones were more at peace after they died.
If this study is correct (and in my heart I strongly suspect that it is, although I won’t be able to evaluate it fully until it is published), we are doing our patients a grave disservice. One thing that I wonder about is how the authors may have taken into account the deadly power of denial. It is quite possible that the percentage of patients who actually did have “the talk” is much higher than 1/3 but that some patients did not recognize or accept what they were being told. Even if it’s two-thirds who have had “the talk,” it is far too low a number. Unfortunately, there is still a strong belief among some physicians that talking about death with terminally ill patients will somehow harm them by taking away their hope or inducing depression as part of the steps of grief described by Kübler-Ross. If this study is correct, such fears are overblown:
Doctors mistakenly fear that frank conversations will harm patients, said Barbara Coombs Lee, president of the advocacy group Compassionate Choices.
“Boiled down, it’s ‘Talking about dying will kill you,’ ” she said. In reality, “people crave these conversations, because without a full and candid discussion of what they’re up against and what their options are, they feel abandoned and forlorn, as though they have to face this alone. No one is willing to talk about it.”
It’s even worse than that. Showing just how entrenched these myths are, physicians in California are resisting a state law being discussed that would mandate such discussions:
Some doctors’ groups are fighting the bill, saying it interferes with medical practice. But at an American Society of Clinical Oncology conference in Chicago earlier this month, where the federally funded study was presented, the society’s president said she was upset at its finding that most doctors were not having honest talks.
“That is distressing if it’s true. It says we have a lot of homework to do,” said Dr. Nancy Davidson, a cancer specialist at Johns Hopkins University in Baltimore.
No law should be necessary to compel physicians to do what they should just be doing as a matter of compassionate care based on humanistic values that respectfully and honestly inform the patient of what medical science tells us to be true of their prognosis. Indeed, as the article points out, nearly all patients with cancer want these conversations. They crave them and often express relief when the topic is finally faced squarely. I’ve only rarely had this experience, unfortunately, because usually when I have to have this sort of converasation with a patient it is as a stranger with whom neither they nor their family have a prior relationship at a time they are in dire straits, like the case described above. Sometimes the family even perceives me as the one who is taking away the patient’s last hope by suggesting that an operation would not be in the patient’s best interest.
We all die. There’s no getting around it, and as I have passed out of my youth and firmly into middle age I can no longer pretend that I’m somehow exempt from that immutable fact of nature. For patients with a terminal illness for whom time is short often the greatest gift we can give them, if not hope, is the gift of truth: To tell them, with all the compassion and understanding that we can muster, that we have run out of potentially curative therapies and that all that’s left that we can offer is palliation. Doing so not only shows respect for their autonomy but allows them to plan for what little time they have left and to take steps to make sure that they do not die in an ICU, hooked up to a ventilator, doctors futilely trying to hold back the inevitable.