Case and Commentary
Jan 2006

Informed Refusal, Commentary 2

Ruth Jepson, PhD
Virtual Mentor. 2006;8(1):26-29. doi: 10.1001/virtualmentor.2006.8.1.ccas4-0601.


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 2

Doctors have an obligation to disclose relevant information (particularly with regard to risk), so that patients can make autonomous decisions; that is, decisions that are neither controlled nor coerced. Because of Dr. Michaels' enthusiasm for screening, he is (wittingly or unwittingly) failing to disclose all of the known limitations and negative consequences of screening. Current clinical practice emphasizes shared decision making in which doctor and patient reveal treatment (or screening) preferences and agree on how to proceed [1]. In this case, it appears that Dr. Michaels is not adhering to the principles of shared decision making and is failing to respect both Mr. Elgie's wishes and his right to make an autonomous choice.

Dr. Michaels and Mr. Elgie need to find a way to move forward so that each believes his views are respected, patient autonomy is protected, and the patient-physician relationship remains strong. Dr. Michaels may wish to consider alternative ways of improving Mr. Elgie's health outcomes that are acceptable to both.

Benefits and Risk of Screening

Screening stands apart from traditional medicine in that it seeks to detect disease in individuals before they present with symptoms. Benefits of screening include improved prognosis for some illnesses because of early diagnosis, the possibility that less radical treatment is needed to cure the early-stage case, resource savings, and reassurance for those with negative test results. Unintended adverse effects of screening include longer morbidity for cases where the prognosis is unaltered by the early diagnosis, overtreatment of questionable abnormalities, resource costs, false reassurance for those with false-negative results, anxiety and sometimes morbidity for those with false-positive results, and the process hazards of screening tests [2].

Information Needed for Informed Decisions about Colorectal Screening

Dr. Michaels is convinced of the benefits of screening, but has failed to disclose all of the unintended consequences and limitations of colonoscopy. A Cochrane review concluded that harmful effects of colorectal screening include the physical complications of colonoscopy, such as perforation and haemorrhage, disruption to lifestyle, and stress and discomfort from testing and follow up investigations [3–5]. In addition, whilst colonoscopies will only detect a few cancers, they will detect and remove a large number of polyps. This detection can be seen as a part of the benefit of screening or part of the harm. Part of the benefit of screening will come from removal of the small proportion of polyps that would have progressed to invasive cancer. Part of the harm of screening will come from regular colonoscopies that are recommended for people who have benign or inconsequential polyps removed [6].

Patient Autonomy within the Medical Encounter

Over the last few decades, the public in general, and bioethicists in particular, have become concerned about the rights of patients, including the right to give informed consent and the right to control one's health care choices [7]. It has been argued that whether or not the benefits of screening outweigh harmful consequences is essentially a value judgment, and one which until now has been made by "paternalistic agents of the state" (physicians) rather than by those invited for screening (the patients) [8]. The patients' rights model seeks to give patients information about the risks and consequences so that they can then make informed choices and judgments themselves.

The goal of enhancing choice—eg, by providing evidence-based information—should not be to encourage a specific choice [9]. Approaches to communication of risk information are based on the assumption that individuals will review the evidence rationally and choose the course of action that will maximise benefit to their health. However, rationality is not the only component in decision making; irrational influences and considerations can also exert strong pressures [10]. Whilst information provided by the physician may contribute to more rational decision making, its primary aim is to enhance patient choice and autonomy. In this case, Dr. Michaels is convinced that the "right" choice is for Mr. Elgie to be screened, but he is not taking into account Mr. Elgie's preferences and what the "right" choice is for him based on these preferences.

The doctrine of informed consent emerged in response to the perception that patients were not being given sufficient information and were thus powerless in health care (ie, without autonomy). One way to redress this imbalance was to better inform patients. Alongside the doctrine of informed consent evolved the complementary patient right to refuse treatment. The right to refuse, combined with the ethos of informed consent, enables patients to retain control over their lives and their health care [11]. Thus a shift took place from paternalism and beneficence in medicine (however benign) towards a partnership between patient and physician. In our case, Dr. Michaels is angry because he feels that his professional opinion is not respected by Mr. Elgie. But Dr. Michaels is not respecting Mr. Elgie's attitudes, beliefs and values, and right to autonomy. Patient autonomy is a relatively new concept and, as such, may be uncomfortable for physicians like Dr. Michaels who are used to having their professional views followed unquestioningly.

In shared decision making—described as "decisions that are shared by doctor and patient and informed by best evidence, not only about risks and benefits but also patient-specific characteristics and values" [12]—both the health professional and the patient are assumed to have a legitimate investment in the treatment decisions [13]. It is this model that Dr. Michaels needs to think about and adopt in his encounter with Mr. Elgie.


If Dr. Michaels decides to talk to Mr. Elgie about screening, he needs to give him more complete information, including the limitations and possible consequences of colonoscopy. It appears unlikely that Mr. Elgie will change his mind, but at least he will have made a more educated choice. If he continues to refuse screening, both men may wish to discuss other ways of improving Mr. Elgie's health outcomes. For example, Dr. Michaels could offer advice on the risks factors for colorectal cancer and provide information on how to modify such risk factors (eg, by diet and exercise). He will also need to provide information on the signs and symptoms of bowel cancer and encourage Mr. Elgie to come and see him if he is worried or changes his mind about having a colonoscopy. Mr. Elgie may choose to ignore this advice, but Dr. Michaels can be assured that he has performed his obligations to disclose, that there has been some element of shared decision making, and that Mr. Elgie has made an autonomous, informed choice.


  1. Charles C, Gafni A, Whelan T. Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model. Soc Sci Med. 1999;49(5):651-661.
  2. Chamberlain J, Moss S, eds. Evaluation of Cancer Screening (Focus on Cancer). United Kingdom: Springer-Verlag; 1995.

  3. Towler BP, Irwig L, Glasziou P, Weller D, Kewenter J. Screening for colorectal cancer using the faecal occult blood test, Hemoccult. The Cochrane Database of Systematic Reviews. 1998 (2). Available at: Accessed December 6, 2005.

  4. Winawer SJ, Fletcher RH, Miller L, et al. Colorectal cancer screening: clinical guidelines and rationale. Gastroenterology. 1997;112(2):594-642.
  5. Gatto NM, Frucht H, Sundararajan V, Jacobson JS, Grann VR, Neugut AI. Risk of perforation after colonoscopy and sigmoidoscopy: a population-based study. J Natl Cancer Inst. 2003;95(3):230-236.
  6. Barratt A, Irwig L, Glasziou P, et al. Users' guides to the medical literature: XVII. How to use guidelines and recommendations about screening. Evidence-Based Medicine Working Group. JAMA. 1999;281(21):2029-2034.
  7. Rogers W. The Moral Landscape of General Practice [PhD thesis]. Adelaide, South Australia: Flinders University; 1998.

  8. Thornton H, Edwards A, Baum M. Women need better information about routine mammography. BMJ. 2003;327(7406):101-103.
  9. Hope T. Evidence-Based Patient Choice. London: King's Fund; 1996.

  10. Thornton H. Patients' understanding of risk. BMJ. 2003;327(7417):693-694.
  11. Wear S. Informed Consent. 2nd ed. Washington, DC: Georgetown University Press; 1998.

  12. Towle A, Godolphin W, Greenhalgh T, Gambrill J. Framework for teaching and learning informed shared decision making. BMJ. 1999;319(7212):766-771.
  13. Elwyn G, Charles C. Shared decision making: the principles and the competences. In: Edwards A, Elwyn G, eds. Evidence-Based Patient Choice: Inevitable or Impossible? Oxford, England: Oxford University Press; 2001:119-143.


Virtual Mentor. 2006;8(1):26-29.



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