ill he ever wake up?” my patient’s mother asked me, her face ashen and her eyes brimming with tears. “What are the chances he will talk again?”
I was a junior resident working in the intensive care unit and was caring for Mr. R, who had overdosed on an opioid cocktail in a nearby parking lot. He was unconscious and wasn’t breathing when he was found by a stranger, who performed CPR until an ambulance arrived.
In the hospital, Mr. R’s brain scan and heart tracing revealed possibly irreversible injury caused by a lack of oxygen. We began the days-long process of lowering his body temperature, then warming him up again, a last-ditch effort to boost his chances of recovery. It was a scenario I’d seen far too often because of how hard the opioid crisis has hit New England.
To the relatives who crowded the conference table near Mr. R’s hospital room, I tried to explain his injuries and prognosis. For what felt like the hundredth time during residency, I faced my trickiest task: balancing realism with hope.
I listed Mr. R’s possible outcomes: He might die. He might survive and remain forever in a coma. He might survive and regain the ability to live independently. Or he might end up somewhere in between. Based on what I’d seen in the past, he’d most likely be permanently disabled, I told his family members, but it was impossible to know. I chose my words carefully, trying not to be overly negative or falsely optimistic.
Conveying the right balance of hope and realism is largely learned through experience during medical training. Young doctors patch together a framework for navigating discussions that hinge on uncertainty, often pilfering mentors’ phrases and techniques. Most of all we learn from our own missteps, and from those of our colleagues.
I know that many patients prefer to hear realistic interpretations of their illness, and that these discussions are increasingly important as providers lean toward shared decision-making, which has been linked to greater patient satisfaction. Still, it’s sometimes a challenge to truthfully discuss a serious medical issue while leaving the door open to the hope that is so vital for patients and families.
Discussing an individual’s prognosis is difficult because doctors often simply don’t know what will happen next. One study, for example, showed that clinicians’ estimates of how long cancer patients had left to live were accurate just 20 percent of the time; their guesses tended to be overly optimistic. Another study revealed that doctors overestimated survival by a month in more than one-quarter of patients. Perhaps these data illustrate how much clinicians root for our patients. I yearn for advanced tumors to melt away with last-line chemotherapy, or for a patient with a severe stroke to walk again. Yet neither is very likely to happen, and reality must keep hope in check.
Although I wanted to estimate the chances that Mr. R would speak, sit up, or even open his eyes, I was cautious. The myriad variables that make each patient’s scenario and body unique also often make it impossible to predict his or her future.
What I’ve realized is that although this uncertainty is tough to convey, it doesn’t dictate what is also very important: giving patients and their families hope to hang onto. Even when death is rapidly approaching, there are things we can strive for. Whereas we may have initially hoped to prolong life — sometimes at the cost of discomfort in the moment, such as by administering chemotherapy or pushing through a grueling rehabilitation regimen — the focus shifts to making the time that’s left as comfortable, joyful, and dignified as possible.
When Mr. C, a patient of mine with advanced cancer and diabetes, decided he wanted a veritable swimming pool of sweetened iced coffee, that’s what he got. We prioritized his joy over the blood sugar control that wouldn’t meaningfully improve or prolong his life.
Whatever the future holds, figuring out what patients and caregivers hope for requires open communication to establish what’s most important. After all, unless I know what my patients want, I can’t be a part of helping them achieve those goals. When I spoke to Dr. Anthony Back, an oncologist at the University of Washington in Seattle who has examined balancing hope and realism in end-of-life discussions, he emphasized this as well.
“For patients and families, it’s OK to talk to the doctor about a lot of kinds of hope, which don’t have to be totally consistent,” Back told me. Patients may think doctors only want to hear about medically related goals — such as length of life or the ability to walk — but doctors want to know about all of them, from attending a family wedding to spending time outside on a sunny afternoon.
In light of a serious diagnosis, “most people are hoping for a whole bunch of things,” Back said. That doesn’t change as a person gets sicker.
I was ecstatic when Mr. R walked out of the hospital; his youth and the short time his brain had been starved for oxygen made him unexpectedly resilient. In fact, his family must have thought I’d been overly pessimistic in our early meetings.
Yet for every patient like Mr. R, I’ve seen many others who never wake up, or who are permanently and severely disabled. After all, so many young people have died from opioid overdoses in the past few years, there’s been a spike in organ donations.
I still struggle to balance hope and realism when I talk to patients and their families, and perhaps I always will. Yet I like to think that despite the uncertainty that permeates medicine, the most important thing to convey is that, realistically, there is always hope — it’s just up to us to find it.