"There's always hope". This is a statement I have used many times when discussing the care of a patient with a terminal illness, but I have to admit it always felt a bit pablum. I think it ends up being short hand for "none of us are ready to accept reality so here we are". A few years ago I stopped saying that when I believe a patient is terminally ill. Instead I state that the patient has reached the end of his or her life, and its time to plan for that.
For the video version of this post, click here.
Because hope can harm dying patients. Hope leads to unnecessary medical interventions, invasive treatments, and delayed palliative care. Up until now, we haven't had great data on how physicians and caregivers perceptions of a patient's prognosis line up, and why they differ. Appearing in the Journal of the American Medical Association, a well-designed trial finally sheds some light on this issue.
Researchers at UCSF enrolled 227 surrogates of patients who were mechanically ventilated for at least 5 days in the ICU. Overall, 43% of these patients would die during their hospitalization. On that fifth day, the surrogate and the physician were asked, independently, what they thought the patient's chances of surviving the hospitalization were. A margin of 20% difference was classified as "discordant".
And 53% of the estimates were discordant. In the vast majority, 80%, of discordant cases, the surrogate caregiver was more optimistic than the physician.
What sets the study apart for me is that it didn't end with this fact. Rather, using structured interviews, the researchers identified factors that led to this overly optimistic view. They fell in several broad categories. Most commonly cited was the sense that holding out hope – or thinking positively – would directly benefit the patient. One participant for instance stated "I almost feel like if I circle 50%, then it may come true. If I circle 50%... I'm not putting all my positive energy towards my dad".
The other explanations for discordance included a feeling that the patient has secret strengths unknown to the physician. And finally, religious beliefs – the idea that ultimately God would intervene on behalf of the patient, were also frequently cited.
As I mentioned, some surrogates were more pessimistic than the providers, and typically cited self-preservation for that outlook. As one individual put it "Maybe I'm just trying to protect myself… I'm trying not to get too excited or… optimistic about anything".
Physician's prognoses were statistically better than surrogates at predicting the eventual outcome, but pride in this fact would be misplaced. "Doctor" comes from the latin word for teacher, and we need to do a better job educating patient's families about their loved-one's prognosis. Those conversations are hard, and offering some hope is what every empathetic human would do, but maybe it's time that, in some cases, we offer hope for a noble and peaceful death as opposed to a miraculous return to life.