Does Hope Hurt? Predicting Death at the End of Life


"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.

If you have pneumonia, you may be better off in an ICU.


For the video version of this post, click here. For the cost of a single night in a typical American intensive care unit, about $7500, you could stay for 10 days at the all-inclusive Overwater hotel in Bora Bora. For this reason, many health economists have looked at ICUs as something of a necessary evil. They are a requirement for the advanced care the US health system can deliver, and at the same time the embodiment of a system that directs way too many resources to care occurring at the end of life.

The problem when you study the effect of ICU admission is called confounding by indication. Sicker patients are more likely to get admitted to the ICU, and more likely to die, so observational studies tend to make ICU care look bad.

Thats what makes this study, appearing in JAMA, of pneumonia admissions by researchers from the University of Michigan so interesting.

They wanted to know if ICU admission improved outcomes for Medicare patients with pneumonia. Instead of relying on a traditional multivariable adjustment approach, they used a technique called instrumental variable analysis.

An instrumental variable is one that is associated with your exposure of interest, in this case, ICU admission, but not associated with the outcome of interest (in this case, death at 30 days) except via that exposure. The idea, then, is that the instrumental variable acts like a randomizer to one or another treatment, allowing us to fairly compare them. In this analysis, the researchers chose distance from a hospital that used their ICU a lot as the instrument.

To believe the results, you have to buy that the closer you live to a hospital with high ICU utilization, the more likely you are to be admitted to an ICU. Not exactly a stretch, and indeed, the data shows that people with pneumonia who live within about 3 miles of such a hospital get admitted to the ICU 36% of the time compared to 23% of the time among those living further away. You also have to buy that distance to such a hospital is not associated with death - this is quite a bit trickier to prove.

If you trust the instrumental variable, what you find is that ICU admission was associated with less mortality than ward admission, 15% versus 21%, and less medicare costs by about $1300 dollars.

Now, the results of an instrumental variable analysis should be interpreted as applying to the marginal patient. In other words, the benefit the researchers saw applies to those that could reasonably be admitted to the ward or the ICU.

While I have some concerns over the quality of the instrument, I tend to believe these results. The authors, prudently, call for a randomized trial to evaluate the effects of ICU admission on older patients with pneumonia, but for now, I hope their voice sticks in your head when youre seeing a patient with pneumonia in the ER and thinking should I send them to the unit? If youre asking the question, the answer seems to be yes.