For a 2012 study, Harvard Medical School professor Lisa Lezzioni surveyed 1,891 physicians about their views on disclosing information to patients. Roughly one-third indicated they might not always divulge medical errors. Nearly 40 percent wavered when asked if they’d lay bare their relationships with drug and medical device companies. Almost 20 percent didn’t agree that they should never tell a patient something untrue. In fact, 10 percent admitted they’d done exactly that within the past year.
Doctors often become arbiters of what a patient knows about their own health. They break down complex diagnoses into relatable terms, walk patients through treatment options and answer questions about recovery outcomes. In deciding which details to share and when, doctors are always performing a balancing act between equipping patients with enough knowledge and burdening them with too much.
To better understand how, why and when physicians choose to withhold information from patients — even if only temporarily — we spoke with four doctors and one medical ethics expert. Here’s what they had to say.
Arthur Kaplan, PhD
Professor of bioethics, Department of Population Health, New York University Langone Health
New York City
The general principle is to never shield patients from information. Patients have a right to know. But there are a lot of ways to share information, and what you don’t want to do is boggle someone’s mind with the ins and outs. You’re not withholding, but you’re making things more comprehensible. Sometimes it’s bad news. You’re sharing it, but you may not want to do it until a spouse comes or you can do it in person. You want to be able to support a patient better. That’s ethically defensible because you’re not withholding the information forever.
The other instance would be doctors who feel that they shouldn’t share information because it might harm someone’s ability to remain in the country. You might not tell someone the results of a test because you don’t think they’re the person they’re claiming to be.
Another major issue is comprehension. The first time you tell someone they have cancer, they don’t hear anything after that. Sometimes you need to discuss things with them over a few visits until it sinks in.
Dr. Sandeep Jauhar, MD, PhD
Author of Doctored: The Disillusionment of the American Physician and Heart: A History
New York City
There was a situation where a patient of mine appeared very upset about a diagnosis of having congestive heart failure, and his father said it would mean a lot to him if I didn’t tell his son everything up front. I approached it in a way where I conveyed information over several days. This wasn’t misleading or withholding information, but presenting it in a way that a sick patient was best able to process.
The paternalistic approach that worked in the 1950s is not something we do now. In the case of risks, I recently recommended a scan to a patient and she asked about side effects. I told her that there were minimal side effects based on my experience. I didn’t go through every potential idiosyncratic side effect the scan’s [injected] tracer dye might have. Most patients don’t want an exhaustive compendium of potential side effects of treatments they’ve adopted.
If a patient has dementia, cognitive impairment or depression, you have to take that into consideration as well. Sometimes patients lack the capacity to fully understand and refer you to their healthcare proxy.
If they have something concerning, like a testicular lump, even if I think it might be cancer, I’ll say, “Let’s wait and see.” I might be wrong and there’s no point in worrying the patient, especially when no treatment is offered until the diagnosis is made.
Dr. Ronald Epstein, MD
Medical school professor and director of the Center for Communication and Disparities Research, University of Rochester School of Medicine and Dentistry
Rochester, NY
For any symptom, there can be several dozen possible explanations. Some of them are pretty ordinary and some are frightening. For every person who has a headache, I don’t necessarily mention the possibility of a brain tumor if the symptoms don’t add up to it.
Sometimes families of patients will ask you not to say anything. That can be cultural. There are stereotypes about that, like some of them not wanting you to disclose a cancer diagnosis, but that’s changing. If that happens, I’ll ask them why, or something like, “Don’t you think your loved one would want to be involved in this decision?” Or a family member might ask me to talk about the diagnosis but not about how bad it is. I’ll say, “Well, I don’t know how bad it will be, but I need to be honest about what I know and what I don’t.”
I’ll ask patients how much they want to know. I do palliative care, and if someone has four metastases or five, the outcome is not going to be any different. Then I might wait for the patient’s cue if they want more information. It varies from person to person.
For side effects, if they’re likely to be present in 10 percent of people or more, I’ll disclose. That 1 to 10 percent is often a very long list. If it’s under 1 percent, I’ll mention it only if it’s a rare and life-threatening complication.
Dr. Linda Girgis, MD
Family medicine physician and author of The Healthcare Apocalypse
South River, New Jersey
If an adult is cognitively impaired, a responsible adult should pursue a legal document making them medical proxy before a serious healthcare condition arises. But if that didn’t happen, the physician needs to assess the patient’s cognitive state. If they are able to comprehend the information, we must tell them everything, no matter what others request of us. The patient always has the authority and right to know.
It is never acceptable to withhold or delay giving a patient medical information. That information belongs to them. As doctors, we must learn how to give information with compassion and respond to any concerns or questions that may arise. Patients may become distressed, but we must know how to handle that distress. Also, how do we know how anyone will respond to disturbing news? It is not right to predict this from our own senses and biases. I have often been amazed at how patients face devastating news with great courage. It is not the doctor’s right to make the decision of how much information to release on behalf of the patient.
Dr. Timothy Quill, MD
Professor of medicine and palliative care, University of Rochester Medical Center
Rochester, New York
These judgments are made all the time. One cannot possibly discuss every possible approach and bit of information because it would take too much time and be confusing. Critical information should never be unilaterally withheld.
If a family member requests to withhold information, my answer would always be that I will be honest if a patient asks directly or seems to want to know, provided they’re able to think clearly and are not actively suicidal or have a major cognitive impairment. You might need a psychiatrist to help in difficult cases. Emotional and cognitive fragility needs to be considered. I would keep it simple and perhaps not even [share information] if they did not have the ability to comprehend. That would be after a discussion with the family and with others on the treatment team.
Responses have been condensed and lightly edited.
The FACT is that it is rare, if ever, when a doctor will take direction from a proxy. I had the strongest HCPOA known, with every possible loophole covered, and still when my Mom was sent to the ER from a memory care unit the attendings would NOT— under ANY circumstance LISTEN to me. They all said “As long as she can give or refuse consent based on MY observations, she is capable of making all of her decisions.” We need a HCPOA that protects patients from doctors who are terrified of legal action which ain’t coming from the POA or from being managed by the HC conglomerate they work for. Doctors must put the patient first but they simply do not.
I too have been shut out of the whole picture. 4 the stage prostate cancer. Before the testing I knew nothing at all about prostate cancer. I have come to know that what I have is not good. But honesty to me is the best policy so that you know what I can deal with and how to make things the right way for my family for myself. It makes it hard because I don’t know what my future would become from this disease. They have you going to five different doctors and every one of them push it off to the other one nothing is getting done and what does it get done would be with another one ordered in the next one’s going to give me. I feel like they’re just putting me down the production line but leaving out ingredients. Is there any answers for this or will it continue on being like this until I’m not around anymore?