Case and Commentary
Jan 2006

Informed Refusal, Commentary 1

Howard Brody, MD, PhD
Virtual Mentor. 2006;8(1):24-26. doi: 10.1001/virtualmentor.2006.8.1.ccas4-0601.

Case

Dr. Michaels looked at his clinic schedule for the day and immediately felt uneasy. The first person on his roster was Mr. Elgie, a 56-year-old man coming in for his annual physical. Mr. Elgie is generally healthy and only takes one medication for hypertension and several vitamins.

Dr. Michaels keeps up with the medical literature, has an MPH, and thinks that screening tests help to improve outcomes for individual patients as well as society by decreasing costs and the burden of disease. Dr. Michaels recommends screening tests to his patients based on a combination of their medical history, age, risk factors, and clinical indication. As he stares at his patient list, he remembers his last visit with Mr. Elgie a year ago because of their heated argument that upset Dr. Michaels for days.

Last year, Dr. Michaels told Mr. Elgie that he needed a prostate-specific antigen (PSA) test, a colonoscopy, and several other screening tests. Mr. Elgie responded by saying, "I'm not going through that. Besides, I'm not at risk. No one in my family's ever had cancer." Dr. Michaels tried to explain to Mr. Elgie that the colonoscopy would be done with sedation so that the discomfort would be minimal. More importantly, Dr. Michaels stressed that colon cancer was common enough in those without a family history to warrant screening. Mr. Elgie said "Look, doc, I know my body and I'll know if I have a problem." Frustrated and reaching the end of his patience, Dr. Michaels reprimanded Mr. Elgie for not taking his health seriously enough. He even went so far as to ask Mr. Elgie why he came to the doctor if he didn't intend to follow professional advice. Mr. Elgie had not returned the rest of the year, but now he was back for his annual visit.

Dr. Michaels does not want to get into another debate, but he believes that screening is important. As he enters the exam room, he is still contemplating whether or not to mention any screening tests to Mr. Elgie.

Commentary 1

Dr. Michaels should take 2 aspirin, lie down, and call me in the morning.

Dr. Michaels has experienced the unfortunate shift that has occurred for many in our society (both physicians and the general public)—the turning of "preventive screening" from science into religion. The shift from science to religion may have resulted in part from the zealous overselling of screening by patient advocacy groups, but I suspect it is due, at least in part, to the pervasive death phobia in our culture and the desire to convince ourselves that we can become immortal through the proper application of medical technology. Dr. Michaels is now concerned because he cannot convert Mr. Elgie to his own religious sect. But that is not his job. As a physician he should ensure that Mr. Elgie is well informed about the pros and cons of all screening tests. He should also attempt to dissuade Mr. Elgie whenever it appears that ill-founded fears or concerns might be swaying him toward a decision that he would later regret. Once Mr. Elgie has understood Dr. Michaels' point of view and has made up his mind, and Dr. Michaels has documented the conversation in the record, Dr. Michaels' job is done until the following year when he can ask Mr. Elgie if he would like to re-open the conversation. Perhaps in the intervening year a good friend of Mr. Elgie's will have been diagnosed with colon cancer, and he will then be in a totally different frame of mind. An important "law" from the novel, The House of God, states: "The patient is the one with the disease" [1]. The patient is also the one with the risks. Dr. Michaels should never allow Mr. Elgie's risks or decisions to make him, Dr. Michaels, feel ill.

Since Dr. Michaels has both a medical and an MPH degree, he presumably knows that it is now common to view a medical journal article as seriously lacking unless it reports its findings in terms of number needed to treat (NNT). Reporting the statistics as NNT is the best way to introduce healthy skepticism among readers when a new therapy is being recommended on relatively weak grounds. For example, imagine that after 10 years, 2 percent of subjects die in the control group, while 1 percent dies in the treatment group. These results would often be reported as a "50 percent reduction in mortality." It is much less impressive to report the NNT—that 100 patients would have to be treated with this drug for 10 years to prevent 1 death.

One could logically argue that information that helps physicians is also good for patients [2]. One systematic review concluded that we would have to screen 1173 people a year for colon cancer for 10 years to prevent 1 death [3]. If we told Mr. Elgie these statistics, would he be more or less likely to accept the recommended screening? If we do not tell him these statistics, are we adequately informing him? The unfortunate fact is that the number of people who need to be screened for many commonly recommended tests in order to save 1 life runs into the thousands and tens of thousands. It is very likely that if patients were informed and truly understood the meaning of these statistics, enthusiasm for screening would wane rather than grow.

Being adequately informed about preventive screening requires that one know the disadvantages as well as the advantages of the tests. Did Dr. Michaels, in his enthusiasm to convince Mr. Elgie to have a colonoscopy, frankly discuss the risks of perforation and death from the procedure? Did he disclose the rate of false positive and false negative results?

It is also rather odd that Dr. Michaels is ready to go to the mat with Mr. Elgie over a colonoscopy, when he ought to know that the US Preventive Services Task Force (UPSTF) has been unable to discover compelling evidence that colonoscopy is superior to other alternatives for colon cancer screening. Indeed, the USPSTF found "good" evidence that fecal occult blood testing is effective, but "did not find direct evidence" that screening colonoscopy is effective [4]. Did Dr. Michaels offer Mr. Elgie an annual fecal occult blood test instead of demanding the colonoscopy? It is possible that Dr. Michaels may have become confused when the different specialty societies produced practice guidelines with different recommendations, making it very difficult for the well-intentioned physician to sort out the evidence.

The ethical model for preventive screening, as for most other encounters in medical practice, ought to be shared decision making. According to this model, Mr. Elgie and Dr. Michaels should be partners in deciding whether and how to screen for colon cancer. Different partnerships work differently; some are 50-50 and some are 80-20. Mr. Elgie should have a say in the extent to which he wishes to meet Dr. Michaels; will it be half way? Will he defer to Dr. Michaels' well-informed clinical recommendations? Or will Mr. Elgie demand veto rights over any and all decisions? Whatever level of participation Mr. Elgie chooses, he should emerge from the encounter feeling that he has been as involved as he wished to be in whatever decisions have been made. Dr. Michaels should also recall that there is nothing about "shared decision making" that makes it wrong for him to try to persuade Mr. Elgie that he might be making a mistake. This is especially true if Mr. Elgie's refusal seems to be based on a misunderstanding of his actual level of risk because he has had no relatives with colon cancer. The persuasion should be grounded, however, in genuine respect for Mr. Elgie and his right to make his own decision and not in fervor to "tick off" another colonoscopy referral on the scoreboard.

If Dr. Michaels remembers that the goal of this encounter ought to be shared decision making and not religious conversion, it is much less likely that either he or Mr. Elgie will emerge from the visit with dyspepsia.

References

  1. Shem S. The House of God. New York, NY: Dell; 1978.
  2. Halvorsen PA, Kristiansen IS. Decisions on drug therapies by numbers needed to treat: a randomized trial. Arch Intern Med. 2005;165(10):1140-1146.
  3. Towler B, Irwig L, Glasziou P, Kewenter J, Weller D, Silagy C. A systematic review of the effects of screening for colorectal cancer using the faecal occult blood test, hemoccult. BMJ. 1998;317(7158):559-565.
  4. US Preventive Services Task Force. Screening for Colorectal Cancer. July, 2002. Available at: http://www.ahrq.gov/clinic/uspstf/uspscolo.htm. Accessed December 6, 2005.

Citation

Virtual Mentor. 2006;8(1):24-26.

DOI

10.1001/virtualmentor.2006.8.1.ccas4-0601.

The people and events in this case are fictional. Resemblance to real events or to names of people, living or dead, is entirely coincidental. The viewpoints expressed in this article are those of the author(s) and do not necessarily reflect the views and policies of the AMA.