The hardest words

Last in a series

When a Twin Cities hospital made the headlines a year ago after the wrong kidney was removed from a patient, one of the most newsworthy aspects of the story was that the error was even publicly disclosed, let alone explained and discussed.

As recently as five years ago, this might not have happened. Increasingly, however, health care providers are recognizing the value of disclosure – being honest with patients and families when something goes wrong. More than that, they’re starting to learn the value of saying, "I’m sorry."

Disclosure. Honesty. Apology. These are some of the hardest words in medicine.

After a medical injury or error, most patients and families want to know what happened, how and why, writes Dr. Lucian Leape, one of the American gurus of the patient safety movement. Patients and families want someone to take responsibility, and if an error was involved, they want someone to admit it and apologize. They also want the hospital to undertake an investigation and corrective action to make sure it doesn’t happen again.

Historically, however, there’s often been "a big difference between the care patients expect and what they receive after a medical error occurs," Leape says.

For too many patients, a clear acknowledgment that a mishap has occurred is not forthcoming; no one seems to be responsible for what happened or for explaining it, and no one apologizes. There is a sort of charade of pretending either that nothing very important happened, or that the causes are mysterious and unknowable. Patients meet a wall of silence.

Why is this so? The reasons are "many and complex," Leape said. For one thing, most health care providers have not been trained to have these kinds of conversations. For another, there’s an ever-present fear of lawsuits and damage to one’s professional reputation; in fact lawyers and hospital risk managers have usually advised physicians not to admit responsibility or apologize after a patient is harmed.

There’s now a general consensus that being truthful with patients and families is the right, ethical thing to do. Indeed, one of the earliest studies on the issue maintains that "extreme honesty may be the best policy." And the Joint Commission, the main accrediting body for hospitals in the U.S., now requires hospitals to have written policies on disclosing unexpected outcomes to patients and families.

One of the leading advocacy groups for disclosure and apology is the Sorry Works! Coalition whose founder, Doug Wojcieszak, lost a brother to medical error. In a white paper for the Joint Commission, the coalition describes its mission this way:

Sorry Works! entails changing the culture of medicine, medical risk management, and the associated insurance and legal support structure, which requires leaders and decision makers to implement a multi-pronged educational effort in their respective fields. Practicing health care professionals and students must be taught that Sorry Works!-type disclosure is the new way and that covering up errors and bad outcomes is no longer acceptable. This culture shift will not happen overnight, but the anticipated economic and ethical benefits make the long journey worthwhile.

The coalition believes that when patients and families receive a truthful and compassionate explanation of what went wrong, they are less likely to sue, and the relationship between doctor and patient is less likely to be shattered.

Apology is "the first step" in healing for everyone involved, Leape says.

It helps us deal with the normal shame and guilt we feel and provides an expression of the normal empathic concern we have for those we have harmed. By restoring the balance – we’re both hurting – it begins to restore the relationship, which is important to both parties.

Conversely, failure to apologize, or even accept responsibility, is incredibly damaging for the patient and for the relationship. Failing to acknowledge that something went wrong is incredibly disrespectful. It is also dishonest. That dishonesty is corrosive not only to the patient’s trust, but to the physician’s integrity.

Apologizing, in fact, "may be the most important thing we do after a serious event, both to help the patient heal and to heal ourselves," Leape said.

And how do patients feel when someone says, "I’m sorry"?

Trisha Torrey became a patient advocate after being mistakenly diagnosed with a rare and deadly form of lymphoma when in fact she didn’t have cancer at all.

To have a pathologist apologize for the mistake was intensely moving, she writes.

I wept, all the way home.

It’s like this huge elephant has exited the room, a weight has been lifted from my shoulders. You choose the cliche. The emotion is overwhelming.

For anyone who’s ever been harmed by a health care provider or wronged by the system, said Torrey, "know how important it will be to hear that apology from him/her."