Dialysis Unplugged: Compassionate Witholding of Information, Damned if You Do, Damned if You Don’t.

The Doctor by Sir Samuel Luke Fildes, R. A. (1844-1927).

I can tell you right off the bat that I do not routinely tell my patients starting dialysis that, on average, they have a 20% chance of dying in the first year of starting dialysis. Nor, for that matter, do I tell my 70 year stage 5 CKD patient, who I am preparing for  initiation of dialysis, that she or he has, on average, 2 to 3 years longevity of dialysis. Of course I want to be truthful to my dialysis patients, but averages are misleading, and ESRD is not a terminal disease. Moreover, even two or three additional years of life - and in my experience it is frequently more than 2 or 3 years - isn’t something to shrug-off.

This dilemma brings me to a recent article published in the February issue of Health Affairs by Lisa Iezonni, a professor of medicine at Harvard Medical School and director of the Mongan Institute for Health Policy at Massachusetts General Hospital, in Boston. The paper reports the findings of a nationwide survey conducted in 2009 of 1,891 practicing physicians looking at physician-patient communication.

Iezonni et al identified their sample from a pool of all US physicians in primary care (internal medicine, family practice, and pediatrics) and four other specialties (cardiology, general surgery, psychiatry, and anes-thesiology).

The results of the survey are summarized in Table 1. One of the findings that has garnered a lot of press attention is that approximately one-fifth did not completely agree that physicians should never tell a patient something untrue.

Iezonni et al write “Some might argue that knowing when to breach or bend these rules—when individual patients require a different approach— constitutes clinical wisdom and true patient-centeredness. For instance, providing a patient with every detail about his or her case is rarely feasible, nor is it necessarily desirable. Physicians must sort through often contradictory and confusing information as their clinical assessments evolve and finally crystallize.”

However, medical ethicist Dr. Linda Emanuel from Northwestern University (Evanston, Illinois) argues that the survey results represent a "welcome wake-up call" for her profession. The study "is an indication that our medical culture needs a recess," Dr. Emanuel told Medscape Medical News. "We need to do some serious interventions to return to our ethical values. "I don't think there's any situation where a physician is justified in telling an untruth."

Here’s where I disagree. Linda Emanuel is taking what is often a complex situation and simplifying it. Worse still, she is arguing that deliberate withholding of information is unethical.  Of course we all agree that we need to provide a realistic assessment of prognosis to our patient’s and their families. However, there is a fine line between “realistic assessment” and “scaring people”. This is where knowing the patient and their family and applying the Oslerian “the art of medicine” comes into play. Compassion is important (read this story to know why). For example, I don’t tell all my dialysis patient’s that their prognosis is worse than if they had some forms of cancer. It might be on average, but it is certainly not true for everyone. Dr. Paul Beeson once said: “Our profession, after all, deals partly with guess work; we do not deal in absolutes.”