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 to the operating room 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 is a barrister and bioethicist at 12 King’s Bench Walk Chambers, London. © Project Syndicate/Institute for Human Sciences, 2015. www.project-syndicate.org