34. CASE: To Tell or Not to Tell

The head pathologist of the regional hospital informs the head pathologist of the tertiary care centre that the post-mortem examination of a former patient, Mrs. Dempsey, has revealed that she suffered from a neurological infection called CJD (Creutzfeldt-Jakob Disease). The tertiary centre pathologist reports this to the VP of Acute Care who determines through investigation that Mrs. Dempsey had brain surgery at the tertiary care centre a year and a half ago. At that time, Mrs. Dempsey had a few symptoms consistent with CJD but this diagnostic possibility was not considered by the attending health care team. The surgical instruments used in the Mrs. Dempsey’s surgery were sterilized as per standard protocol and subsequently used in other neurological surgeries at the centre.

Some relevant CJD facts:

  • The involved infectious agent is a prion
  • Prions are transmitted only by neural tissue (brain/nerves) to neural tissue exposure
  • Unlike most infectious agents, prions can survive standard sterilization procedures
  • CJD is a progressive, devastating neurological infection that leads to disabling illness and premature death
  • The usual incubation period from a person’s exposure to CJD to symptomatic infection is 12 to 28 months
  • There is no way to conclusively determine that a person has CJD prior to post-mortem autopsy
  • There is no known treatment for CJD

An ad hoc disclosure working group is struck. In the course of using their hospital’s disclosure policy’s decision-making framework, a participating infectious disease specialist, Dr. Bugg, reports on the clinical literature (evidence) related to CJD disease and its transmission. He expresses his informed opinion that, in the particular circumstances under consideration, there is a theoretical, extremely low risk of past transmission of CJD to patients who had surgery utilizing the potentially contaminated instruments for the month after Mrs. Dempsey’s surgery. Dr. Bugg also comments that, in the last twenty-five years, there have been no reported cases of CJD (world-wide) resulting from patients’ exposure to contaminated surgical instruments.

  • Using your institution’s disclosure policy decision-making framework (or that provided on NSHEN’S website under the “Ethics Resources” tab at http://www.nshen.ca/docs/nshen_adverseevents.pdf), what do you think are the key issues to be considered?

As per Step 7 in NSHEN’s framework, the working group members collaboratively develop a list of benefits and burdens for each of three identified potential disclosure options, i.e., non-disclosure, disclosure to those who have been exposed, and external-public disclosure.

  • Given the facts as presented and using the framework indicated, what decision would you support and why?


Some Values and Ethics Issues to Consider

  • Accountability
  • Honesty, trust and truth-telling
  • Compliance with policy
  • Medical error
  • Disclosure of adverse events
  • Patient safety
  • Transparency

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