How Physicians Should and Shouldn’t Talk With Dying Patients
Hospitals should require patients to give explicit informed consent before physicians are authorized to discuss life-and-death matters with them offsite via technology
Co-authored with Arthur Caplan
On March 3, 78-year-old Ernest Quintana was admitted to Kaiser Permanente Medical Center’s emergency department in Fremont, California. Quintana was suffering from lung disease; it was the third time he had been admitted to the hospital in 15 days. As his granddaughter Annalisia Wilharm stood by his bedside, a machine on wheels with an attached digital screen rolled into Quintana’s room. A live-streaming image of a doctor in a remote location appeared on the screen to tell the pair that Quintana didn’t have long to live.
While Quintana’s family “knew he was dying of chronic lung disease,” they weren’t expecting him to die imminently and in the hospital. While repeating aloud what the remote physician was saying to her hard-of-hearing grandfather, Wilharm had to be corrected. She suggested the next step might be “going to hospice at home,” but the physician told them he didn’t think Quintana would make it that far. He died in the hospital the next day.
Quintana’s family was justifiably horrified by how this news — the worst medical update any family could receive — was conveyed. His daughter Catherine Quintana told news outlets, “I don’t want this to happen to anyone else. It just shouldn’t happen.” People expressed outrage on social media, calling the exchange not just underwhelming but unbearably cruel. Doctors chimed in, bemoaning the fact that they are given little time to talk to patients about anything, even a death sentence.
Video conferencing, or telemedicine, can play an important role in medical treatment, but what happened to Quintana and his family demonstrates that health care providers must set the right policies — especially policies for ensuring that remote clinical services provide vulnerable patients with the compassionate care they deserve. It should go without saying, but technology shouldn’t be used if it could undermine intimate conversations about death and dying. Patients and their families should never feel that talking about end-of-life care isn’t worthy of a face-to-face discussion.
Michelle Gaskill-Hames, the senior vice president of Kaiser Permanente Greater Southern Alameda County, issued a statement conveying regret at “falling short of the patient’s and family’s expectations.” She also vowed that the hospital “will use this as an opportunity to review our practices and standards with the care team.” Taking her at her word, we’re going to provide clear recommendations for what the policy should include.
Getting the facts right
As terrible as this story is, it has been marred by inaccurate reporting that has included headlines such as “Family horrified to learn loved one is dying as told by a robot not real doctor.” This wording wrongly suggests that a non-human robot conveyed the tragic medical update. In reality, it was a human physician who had the fraught conversation with Quintana via a video screen on a mobile robot.
We shouldn’t lose sight of the fact that the controversy is about a verbal interaction occurring between people that was mediated by video-conferencing technology enabled by a robot body. It has absolutely nothing to do with a human expert being taken out of the medical loop. A talking artificial intelligence didn’t replace a human doctor in judging Quintana’s condition or in discussing his dire medical circumstances.
But those clarifications don’t prove that good policy exists. Yes, the doctor who initiated the live video conversion was a “specialist physician”; per standard practice “a nurse was in the room to accompany the video conversation”; and the video conversations were “secure.” None of that, however, justifies subjecting Quintana and his family to the insensitive prognosis they received without their consent.
Informed consent should be required
Compassionate care requires that physicians discuss matters concerning death and dying with patients in a sufficiently empathetic manner. Otherwise, the enterprise of medicine fails to fulfill its most basic promise as an art and a science, and physicians themselves fail at one of their primary responsibilities: to respect a patient’s dignity.
As Quintana’s case demonstrates, the limitations of telemedicine can impede empathetic conversations about mortality by making them harder to understand and making it more difficult for patients to both ask immediate questions and, as they process a diagnosis, pose follow-up queries. Poor audio and image quality and the possible loss of an internet connection are intolerable problems that introduce more tension for patients in an already difficult situation.
So long as technology can’t capture the full bodily presence of face-to-face experience, patients will be justified in perceiving such conversations as utterly unempathetic, even when physicians feel they are doing everything they can to deal with people sensitively. One key reason is that reassuring body language is missing. The family has every right to believe that the video conference was marred by an empathy gap that trivialized the value of Quintana’s life and made his granddaughter’s role hellish.
We’re not so naïve to think every physician displays warmth even in person when interacting with terminal patients. To avoid burnout, some doctors keep an emotional distance, and that sometimes means robotically addressing the most intimate concerns of their patients. But just because this is sometimes the case doesn’t mean that it’s acceptable and that we shouldn’t expect better. Indeed, medical schools realize this a serious dilemma and are working to train resilient physicians to be better at “delivering bad news to patients.”
Only an ethical framework can provide an appropriate solution to the problem that Kaiser Permanente blundered into. But to propose a technical standard for face-to-face discussions is to keep going down the wrong path. Not only will people disagree about what the right standard should be, but some will find the very prospect of creating an engineering solution demeaning. Consensus doesn’t even exist about whether it’s ever okay to dump a romantic partner over text message, much less deliver unwanted medical information. The only justified policy, then, is to require informed consent.
Upon admission to hospital, patients should be given a form that explains that the hospital provides telemedicine for a variety of purposes, which could include discussing grim prognoses. The form should provide a clear and easy-to-read explanation of why this is the case, explain what follow-up options are available and what alternatives exist, and then seek consent only from patients who believe this approach matches up with their own values. This way, patient autonomy gets respected, and health care providers can avoid the charge of gross indifference.
Nobody should be forced into the situation Quintana found himself in. And everyone should have the unquestioned authority to tell the TV-bearing robot to get lost and that they require face-to-face conversations for life-and-death matters.
In rural areas or at small hospitals lacking specialists, some patients may consent to telemedicine. If so, it’s crucial that hospitals require doctors to undergo robust education on how to use telemedicine tools as empathetically as possible. And nurses and chaplains need to be involved in managing off-site communication as well.
The stakes of some situations in health care are high. The only ethical way to approach them is to give patients the guarantee of old-fashioned, face-to-face dialogue with a human being rather than have them react in horror at the fuzzy image of a stranger bearing bad news.