A 78-year-old man at a California medical center was told that he was going to die within a few days. This was unusual in that he was informed of this news by a doctor utilizing a robot and a video screen. A robot came to the door, outfitted with a video screen in which the doctor appeared to be sitting in a chair in a room somewhere else. The patient was told that he has no lungs left and the only option was comfort care. They would remove the mask that helped him breathe and put him on a morphine drip until he died. A social media post said that this was “not the way to show value and compassion to a patient.” The hospital expressed regret for falling short of the family’s expectations.
Being informed by a robot lacks sensitivity. But there was a time when patients would not be told at all. As late as the 1970’s many physicians in North America would avoid telling patients they had a potentially lethal disease. Ninety percent of doctors in Chicago opted against divulging a cancer diagnosis in a 1961 survey. The tide has changed in favor of patient autonomy. Patients now have a right to be fully informed and make healthcare decisions free of undue influence from medical professionals. Most doctors walk a fine line between upholding hope and being realistic.
Telling someone they are likely to die soon is one of the hardest parts of being a doctor. My niece, a physician assistant, was recently in a quandary of whether to call a patient with the news that lab results indicate they have cancer. Should she wait to call on a Monday, and let the patient enjoy a pleasant weekend, or call immediately? Should she tell the patient over the phone, or ask them to come to the office for a follow-up consultation? In fact, she did wait a few days until she had more information, then told the patient the news over the phone. The patient’s wife objected to the insensitivity of a phone conversation. Other patients have complained that they would’ve wanted to be told via the phone rather than take a day off work. She feels that she can’t get it right.
Hearing the bad news is not easy either. Some patients say they don’t want to know anything, when asked. Forcing others to know what they don’t want to know can be harmful. Others want all the information the doctor has. Typical reactions to the news of imminent death may be shock, denial, anger, depression, bargaining, or acceptance. These reactions may cycle from one to the other.
Personally, I will want the truth of my medical condition and its progression when the time comes for my death. I will not likely face death bravely, but will appreciate relief from uncertainty and the possibility of time for reflection and discussion of the course of events with those close to me. I will want the opportunity to take stock, mend bridges, make farewells, rehome my pets, and get my affairs in order. And I prefer to be told sooner than later, particularly if I am expected to have a short time to live. For the record, I prefer to be immediately informed by a robot, or over the phone, if the alternative is to wait for an available appointment with the doctor.
Here’s what I don’t want. I don’t want my end of life process to be determined by the comfort level of my physician. If they can’t have awkward conversations, they may rob me of my choices. Instead, I hope for a trusting relationship with my physician in which I will know what she knows, when she knows it.
So, what is the proper way to tell someone they may die soon? Palliative care specialists have expertise when it comes to these difficult conversations. The first step is asking the patient their understanding of their health status. Ask “What do you know?” And “What do you want to know?” If they do want to know the prognosis of their condition, include a spouse, friend or relative for support. The conversation may shift from finding a cure to managing illness. Janet Abrahm, a Harvard Medical School professor who trains physicians, says doctors should avoid phrases like “nothing more can be done”. Instead, convey the message that there are no more options for cures. And then you have to shut up. Abrahm coaches people to count to 20 before speaking again. This may be a very uncomfortable silence. Then ask, “How are you doing?” And, “What can I do for you?” Then say, “We have work to do. There are many effective treatments to prevent pain and suffering.” Then, realize that this is not a once and done conversation, but the beginning of ongoing communication.
My niece made the decision to ask her patients how they would like to be informed of bad news. She will then act accordingly. My question to you is, how do you want to be informed of bad news?