This particular subject has come up recently in conversations with friends: when doctors are less than totally forthcoming with their patients. We would know - we are the medical students who silently observe behavior on both sides of the patient's door. It doesn't escape us when the doctor, by way of explaining a little about the patient's history and current problem, tells us that their tumor is inoperable, and then steps confidently into the examination room that holds the waiting patient, and tells them that "there might be something we can do." And then, after exiting the room and shutting the door, shakes his head and says to us, "No. There's no way he is going to make it."
I am not exaggerating at all about that story. I was the medical student. My peers and I all have multiple versions of our own, variations on the theme.
Not every doctor does this. I have observed physicians who truthfully and tactfully lay out everything they know for their patients and allow them to make truly informed decisions. But plenty of them fudge or obscure the truth. Maybe some of the difficulty lies in what the "truth" is in medicine... doctors certainly do not know everything, nor can they predict every outcome. Getting a second opinion is not necessarily mistrustful or naive. Then, too, there are surely patients who do not want to hear that their options have run out, just as there are patients who definitely do want to know, for whom a brutally honest prognosis will help them to prepare emotionally, spiritually and otherwise for what lies ahead.
If your doctor really believed there was nothing more he could do for you, would you want to know?
When Doctors Don’t Tell the Truth
By Pauline Chen, M.D.
March 1, 2012
New York Times
New York Times
Every spring, a former patient and his elderly parents
would drive two hours to the hospital carrying chocolates for the staff — an
epicurean celebration of the man’s successful liver transplant a few years
earlier. The patient, tall, in his 30s and with sandy-brown hair, handed out
the boxes, and his parents, their parched-earth faces beaming with joy, shook
everyone’s hands.
But each time the parents came over to me, there seemed to
be a moment of hesitation.
On the night of their son’s transplant, I was the doctor
who relayed the grim details of their son’s state. As he lay in the intensive
care unit waiting for the organ, I described to them his deep coma, his
complete dependence on a breathing machine, his blood, which had become as thin
as water, and his need for such high doses of an intravenous infusion to
support his blood pressure that if we couldn’t do the operation soon, it would
be impossible to move him even the few hundred feet to the operating room for a
lifesaving transplant.
Because I believed that it was my duty as their son’s
doctor to be truthful, I told them that their only child might die.
Fortunately, my dire prediction proved incorrect. And
while I never questioned the importance of a doctor’s honesty, every year that
couple and their son returned, I wondered again if my devotion to this professional
ideal had come at a significant cost: their hope.
According to a study published last month in the journal Health
Affairs, I am not the only doctor to have struggled with
transparency and honesty.
Researchers from the Mongan Institute for Health Policy at
Massachusetts General Hospital in Boston created a survey based on the Charter
on Medical Professionalism, a widely accepted code of professional
behavior that upholds patient autonomy and the crucial role of physician
honesty and transparency. Doctors who took the survey received $20 and were
asked about their attitudes and their behaviors in the past year.
While a majority of the nearly 2,000 doctors polled
believed that physicians should never lie to patients or fail to inform them of
the risks and benefits of a procedure or treatment, a large number also
revealed that they had not been completely honest or transparent over the past
year. More than half had described a patient’s prognosis more optimistically
than warranted. More than 10 percent had said something untrue. And even though
almost all the doctors said that they believed confidential health information
should be disclosed only with authorization, more than two-thirds had revealed
private health information to others without the patient’s explicit permission.
“These results reveal a breakdown in communication that
makes patient-centered care much more difficult,” said Eric G. Campbell, senior
author of the study and an associate professor of medicine at Harvard Medical
School, who directs research at the Mongan Institute.
The researchers were not able to assess why some doctors
might have been compelled to veil or avoid the truth, but “I don’t believe
doctors set out to be dishonest or have some kind of malicious or nefarious
intent,” said Dr. Lisa I. Iezzoni, the study’s lead author and a professor of
medicine at Harvard Medical School, who is director of the Mongan Institute.
Dr. Iezzoni noted that some doctors might have worried that talking about a
topic like weight loss could offend an overweight patient and even backfire.
She added that others might have glossed over a terminal diagnosis, fearing
that the patient and family members would never recover from a frank discussion
of such devastating news.
But however well-intentioned these assumptions about how
patients will react are, they are also often incorrect. Studies have shown that
even in the gravest of circumstances, patients
prefer accurate and honest information. Patients with a terminal
diagnosis, for example, may be grateful to have the chance to put their
personal affairs in order before it’s too late. “Patients need the truth so
they can best make decisions for themselves,” Dr. Iezzoni noted.
The best approach, for both doctors and patients, may be
to discuss preferences about communicating before difficult medical issues arise.
“Patients need to sit back and think about how they’d like to learn about
something related to their health,” Dr. Iezzoni said. These preliminary
discussions are especially important for patients who may not want or be able
to tolerate full disclosure, as in the case of children who are ill,
individuals with progressive conditions like Alzheimer’s or Lou Gehrig’s
disease, or those who come from cultures in which it may be acceptable to
disclose a terminal or difficult diagnosis to the family but not to the
patient.
Despite what some might consider dispiriting findings, the
researchers remain optimistic about ways to improve communication and the
future of the patient-doctor relationship. “I see patient-centered care as a
work in progress,” Dr. Iezzoni said. That work includes teaching young doctors
better communication skills, establishing reimbursement systems that allow time
for conversations and recognizing just how challenging honesty and transparency
can sometimes be.
The last time I saw the parents of my former patient, I
finally summoned up the courage to revisit our conversation on the night of his
transplant. I apologized for having been perhaps too honest.
As I spoke, I saw the parents’ smiles disappear, and once
again I sensed that painful moment of hesitation.
Then the patient’s mother stepped
forward and clasped my right hand. “That was a terrible time,” she said. “But,”
she added, looking at her son, “what if things had turned out differently and
we hadn’t even known?”
