Is it acceptable for doctors to
withhold information from their patients? Some claim that it is not only
acceptable; it is desirable. Hope, they argue, is critical to aid
recovery, and a bleak diagnosis should not be allowed to kill it.
In his influential 1803 text, Medical
Ethics, the English physician, Thomas Percival, described the doctor’s
role as “the minister of hope and comfort to the sick,” noting that at
times they should conceal alarming information from their patients. A
patient’s life, Percival wrote, can be shortened not only by a doctor’s
acts, but also by his words and manner.
The Canadian physician, William Osler
(whose patients included Walt Whitman), was another fervent believer in
the healing power of hope. Indeed, his “unfailing but occasionally
unwarranted optimism,” a biographer noted, was one of his most
outstanding characteristics. In a 1958 textbook on medical ethics and
law, another eminent doctor stated that it is “often clinically wise and
in the patient’s interest to withhold certain matters.”
A few years ago, I interviewed a family
doctor on the same subject. He described his first “house call” in the
1960s, when he and a senior colleague visited a jovial protestant
minister who had no idea that he only had weeks to live, owing to
aggressive colon cancer. The senior doctor suggested giving the patient
large doses of painkillers, which they would tell the patient were
antibiotics to treat an “infection.”
The junior doctor, uncomfortable with
this deceit, asked the minister’s wife for permission to tell the truth,
and after much hesitation, she agreed. When the minister heard the
news, he fell into a state of such despair that he refused all
painkillers. He was sure he would end up in hell. More than 40 years
later, that doctor told me: “To this day, I can see his face. It was the
biggest mistake of my medical career.”
Nowadays, this kind of medical
paternalism is no longer the rule in many countries. To avoid exposing
themselves to claims of negligence or even, in rare cases, criminal
assault, doctors must disclose an ever increasing amount of information,
however bleak, about treatment risks, benefits, and alternatives,
enabling the patient to give “informed consent.”
Maintaining a patient’s hope while
fulfilling the obligation of disclosure is one of the most difficult
tasks doctors face. It requires a deep knowledge of the human heart; a
single word, a gesture, or a look can lift or wreck a patient’s spirits.
Many doctors struggle to obtain proper consent.
One problem is that doctors receive
little formal training in obtaining consent, with medical schools
teaching only the basics. As a result, many doctors are unaware of the
subtleties of what constitutes valid consent in the eyes of the law and
their professional body – a task made more difficult by the evolving
rules on consent.
Another problem is that many doctors
consider obtaining consent to be a tedious obligation, with senior
doctors sometimes delegating the task to less experienced colleagues.
Moreover, doctors often obtain consent hastily, in a way that sounds
almost rehearsed, as if unaware that the patient is receiving the
information for the first time. This haughty attitude is reflected in
the jargon of “consenting a patient” – as though it were something done
to a patient, like drawing blood or administering an injection: “Dr.
Smith, please go consent Mr. Jones.”
Instead, consent should be viewed as a
patient’s cherished possession, which he or she may choose to
relinquish, if presented with a sufficiently compelling case. Consent
should not be snatched away, like a train ticket held out for the
conductor.
The problem is compounded when consent is
obtained just hours before a major operation, and months after the last
consultation with the surgeon. This can lead patients to consent to
procedures that they do not understand – or want.
A colleague shared the story of a patient
who told the porter pushing her on a trolley to the operating theater
that she had been looking forward to the operation. Once she was
“cured,” she said, she could start a family. She was just a few feet
away from a hysterectomy. The porter immediately called the medical
team, and the operation was postponed. Either the patient was not given
the information, or she did not fully understand it.
As patients, future patients, or
relatives, we all have an interest in raising the standards of consent.
Of course, some may prefer the paternalism of old. But we should be able
to make that choice, letting doctors know if we would prefer to be well
informed or minimally informed.
Likewise, if we want more information, we
should ask more questions. We can ask for additional details about the
procedure and other options. We can ask for the doctor’s own
complication rates. If we are dissatisfied with an answer, we can seek a
second opinion. We can ask the doctor what she would do in our
position, or what advice she would give if the patient was her own child
or parent. And, if we still are not sure, we can request more time to
consider our options.
Obtaining consent is a vital but often
overlooked skill for doctors. Understanding why so many doctors struggle
with it is the first step toward raising the standards of consent.
Daniel Sokol
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