Although most doctors say they believe in the immediate free flow of information from physician to patient, the reality is that many hospitalized patients don’t receive a full explanation of their condition(s) in a timely manner. I’ve seen patients go for days (and sometimes weeks) without knowing, for example, that their biopsy was positive for cancer when the entire medical staff was clear on the diagnosis and prognosis. So why are patients being kept in the dark about their medical conditions? I think there are several contributing factors:
1. Too many cooks in the kitchen. During the course of a hospital stay, patients are often cared for by multiple physicians. Sometimes it’s unclear who should be the first to give a patient bad news. Should the news come from their primary care physician (who presumably has a long standing, trusting relationship with the patient) or the surgeon who removed the mass but doesn’t know the patient well? In many cases each assumes/hopes the other will give the patient the unpleasant news, and so the patient remains in the dark.
2. Family blockades. It often happens that a patient’s spouse or family member will request that news of an unpleasant diagnosis be delayed. They argue that it would be best for the patient to feel better/get stronger before being emotionally devastated by a test result. In some cases the family may be right – grief and shock could impair their participation in recovery efforts, resulting in worse outcomes. Cultural differences remain regarding how patients like to receive information and how families expect to be involved in care. American-style, full, immediate disclosure directly to the patient may be considered rude and inappropriate.
3. Uncertainty of diagnosis. Sometimes a clear diagnosis only develops with time. Biopsy results can be equivocal, the exact type of tumor may be unclear, and radiology reports may be suggestive but not diagnostic. Some physicians decide not to say anything until all the results are in. They cringe at the prospect of explaining uncertainty to patients, and without all the answers they’d rather avoid the questions. What if it looks as if a patient has a certain disease but further inquiry proves that she has something else entirely? Is it right to frighten the patient with possibilities before probabilities have been established?
Although sensitivity must be applied to the nuances of individual care scenarios, my opinion is that patients should be immediately informed of their test results and their physician’s thought processes at every step along the diagnostic pathway. Family member preferences, however well-meaning they are, cannot trump the individual’s right to information about their health. If physicians are unclear regarding which of them should break the news to a patient then they should confer with one another and come up with a plan ASAP.
The right time to tell the patient the truth is: now. To my colleagues who avoid giving patients information because it is personally uncomfortable (often leaving me or other third party to be the messenger), I have two words: “man up.”