The Unbearable Burden of Truth

"If [the specialist] was much more blunt about it and said, 'You'll probably be dead in six months', it could be harmful. I don't think that information is necessarily helpful."
"It's very disconcerting to a medical professional; we really feel it's not ours to withhold information. [But] some people don't feel that that knowledge will help them in any way.... Forcing people to know what they don't want to know can be harmful."
"I think for all of us, our expectations, our psychological state certain influences how well we do from a purely bio-medical standpoint."
Dr. Karen Devon, surgeon, Women's College Hospital, Toronto

"When you offer someone a sliver of hope, they will jump on it. [But] hope can also be destructive as people seek out marginal treatments of whatever nature."
Dr. Andy McFadden, surgical oncologist, Vancouver General Hospital

"What you're getting in this article is push-back. The anxiety of giving someone bad news is very, very hard. And they're not supported in it. They're in there alone, telling people terrible things are going to happen to them. And it's painful."
Dr. Sholom Glouberman, founder, Patients Canada

Chris Hondros/Getty Images   A breast cancer patient receives a chemotherapy drip. About 60% of cancer patients now survive at least five years after diagnosis, compared with about 25% in the 1950s.

 

The new recognition of "patient autonomy" resulted from a push-back itself, of ordinary people requiring medical treatment, no longer thinking of doctors as being the next-of-kin to god himself, in whom all hope for survival is vested because of their medical knowledge, their diagnostic skills and their capacity to apply surgical techniques and accompanying drug protocols that will save and extend lives despite the misfortune of dread diseases.

Experience aligned with the enhanced transference of information both institutional in nature and casual in the recounting owes much to the Internet and the easy availability of information, both hopeful and dreaded, but accessible. Some of it reliably knowledgeable and some of it the worst excesses of quackery. But armed with new knowledge patients now present it in queries to their doctors who must then rely on their professionalism to either quash or confirm.

The process, however, giving people the illusion at the very least, that not everything is beyond their understanding, affirming for some the need to be involved in the decision-making respecting a desired course of action. Doctors no longer inform patients what they must now do in their professional opinion that is not open to question, but they provide information and consult with the patient recommending the best practise course of action.

But the diagnosis of the presence of a dread disease carries with it a dreadful burden for both the doctor and the patient. The doctor's most immediate reaction is that of regret and a squeamishness in delivering the acute prognosis he may feel is inevitable. The patient's instinctive reaction is no, they don't really want to hear it; if it isn't stated, it doesn't exist. And then each experiences their mind returning to reason; in for one the duty to explain, the other the obligation to know.

Dr. Devon has published, along with colleagues, a studied and compassionate commentary on the issue of whether and how doctors can or should deliver the truth and nothing but the truth to waiting patients in Tragic knowledge; truth telling and the maintenance of hope in surgery, just published in the World Journal of Surgery.

The danger in withholding the full impact of the patient's condition in a body afflicted with a dread disease whose prognosis looks very bad is that of proffering false hope when in fact there is little to be had. Conventional treatment can be used to prolong life and offer the patient the consolation that medical science will do what it can to give them a little more time.

If the information respecting the true nature of their medical condition is withheld to allow the patient the belief that there are other avenues to be pursued, that conventional treatment may be ignored in favour of either leaving people overly optimistic, or through stirring them to look around for other means of restoring themselves to optimum health through fraudulent formulae.

Cancer surgeon Alik Pathak, now practising in Winnipeg, came from a tradition in India where physicians obeyed a medical code leaving patients not fully informed about a cancer diagnosis under the belief that with full knowledge available to them of their health predicament, a sense of utter hopelessness will prevail and they will lose the will to live, succumbing to their illness swiftly as a result.

"I strongly feel the patient needs to know where they are" he said. "Sometimes, it is the lack of information that is very disheartening and perplexing." He much prefers the more open medical culture prevalent in Canada while acknowledging that he does come across families from minority cultures who prefer the patient be spared devastating medical diagnoses and prognoses.

He feels more confident in straight-out informing his patients what their reality represents, but leavening it with a ray of hope through the sensitivity of stressing to his patients that they may very well be represented in a minority group that can survive a poor diagnosis, however small that demographic may be.

Asian, South American and Mediterranean cultures appear more given to urging doctors not to reveal to the patient him/herself the grim level of the diagnosis. Irrespective of which Calgary surgical oncologist Oliver Blathe remains firm in the conviction that patients be given their diagnosis since it can be key to agreeing to a protocol particular to effectively treat their condition.

If the outcome happens to look particularly bleak, Dr. Blathe asks how much his patient is willing to know, and he emphasizes that in almost all cases most choose to know the details to be fully informed. "Maintaining hope is humane ... in terms of providing someone with the will to live. It's hard to say what the effect of hope is on survival, but I don't think that disclosing a prognosis removes hope."

Dr. McFadden feels an informed patient is capable of feeling empowered, to be part of the decision-making process. Avoidance of the raw truth could lead to patients choosing to undergo treatments where little benefit results, at high risk. The issue is a profoundly troubling one and there is no response that is universal.

Perhaps, Dr. Devon suggests, certain details can be withheld in respect of a patient's wishes, alternately revealing details gradually rather than overwhelming the capacity of a patient already traumatized, to take it all in.