Essays

Essays December 2009

A Patient's Right to be Believed

Neil Seeman

If you are caught with crack cocaine in your pockets, the drugs will not be admitted as evidence and you will not go to jail if the arresting officer fails to read you your rights - notably, the right to be presumed innocent until proven guilty in a court of law.

So entrenched is this principle that it is embedded into our Charter of Rights and Freedoms.

When I taught law to health professionals I would ask the class why this principle is so important. The answer is well-known to every student, whatever their legal training: it is better that ten guilty people escape jail than one innocent person suffer, the rule expressed by William Blackstone in his Commentaries on the Laws of England, published over two centuries ago.

The right to be presumed innocent preserves a higher ethic - the rule of law. Similarly, in business, the "customer is always right" is an axiom of quality service. In healthcare, things are a little bit different.

As you are reading this essay, many thousands of patients and caregivers in every region of every country in the world - in coffee shops, at cocktail parties, and, increasingly, online - are talking about how their own, or their loved ones' patient experience could be improved.

Sometimes people taking part in these conversations gripe unfairly about their care providers. Yet most patients' online ratings of their doctor are, in fact, positive. Unfortunately, patients' stories are too often disregarded; the patient is presumed guilty of exaggeration or falsehood. Despite much rhetoric around patient-centredness, there is skepticism among many in the healthcare sector over the validity, reliability and value of patient stories. 

When I speak at public events about the power of online patient stories for healthcare decision-making, some in the healthcare industry (clinicians and non-clinicians) dismiss these millions of narratives as meaningless chatter with no validity. Interestingly, they're more often accepted as truth when they praise healthcare providers; they're harder to accept when they're critical.

Allow me here to suggest that a patient - just like the person caught with cocaine in his pockets or blood on his hands - should enjoy the right to be presumed innocent. In other words, the patient's story should be acknowledged as valid; the patient should be presumed honest and earnest.

The Canadian Medical Association, now developing a "Patient Quality Charter," should consider the adoption of the presumption of honesty as a fundamental right to be enjoyed by all patients. It has been a bedrock principle for centuries in law and business; so too should it be in healthcare.

Reconsidering Evidence

You don't have to be a scholar of post-modern literature to appreciate that there is a difference between subjective and objective truth. The two do not always agree and the healthcare profession tends to place more value in objectivity than it does in lived experience. Although the medical examination consists of eliciting symptoms (the history) and signs (the physical examination), many healthcare professionals today pay most attention to the lab data, the blood tests and the imaging results. Little seems to matter unless there is some "objective" evidence of pathology. This may be appropriate for some diseases but there are others for which no test can vouch. Pain disorders fit this category, as do psychiatric problems. Without objective evidence and, frequently, without demonstrable signs of illness, what matters singularly are the patient's words.

How do patients describe what they experience? What words do they use? What is the chronology of events leading up to their experience of symptoms? What else was happening at the time in the patient's life? What is the emotion behind the words? All of this matters to experienced clinicians. So how can one not trust the patient's story? In many instances, that's all there is to go on and paying careful attention is what leads to effective decision-making.

Patients today increasingly talk about their needs, wants, preferences and (fast-rising) expectations outside of the hospital encounter. We need to listen.

It is true that patient stories, online and offline, can be biased by outside factors - fatigue, worry, hunger, bitterness, to name a few. But the default position, what should be the right of every patient, is that his or her story and life experience be respected. This is so even if it is expressed in anger online or in grief after a loved one's death. We need always to assume that patients' stories and complaints are valid. We need to respect the dignity of the persons making the judgment by believing in them. It is better that one million patient grievances be believed, even if incorrect, than that one serious life-threatening concern be dismissed, in error, as meaningless.

About the Author

Neil Seeman is a writer, and Director and Primary Investigator of the Health Strategy Innovation Cell at Massey College at the University of Toronto.

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