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.

The US spends an appropriate amount on end of life care, if you massage the numbers a bit.

For the video version of this post, click here. I think it's fair to say that there is a certain narrative regarding costs of health care in the United States. It goes like this:  "The US spends more on healthcare than any other nation, and gets less for it".

Is that really true?

Moreover, how do we even compare costs between nations? Well, given that around 25% of Medicare expenditures are accrued in the last year of life, researchers from the University of Pennsylvania examined how 7 different countries – all large, western democracies, including the US, treat individuals who died with cancer. The research appears in the Journal of the American Medical Association. Using national registries in each of the countries, Zeke Emanuel and colleagues were able to look at questions like what percentage of individuals died in the hospital and, importantly, how much money did each country spend on them.

These types of studies can be difficult to interpret, so I'll give you the party line first, and then some criticisms. First off, the good news, the US had lower rates of death in the hospital than any of the 6 other countries at 22%. Compare that to 52% in Canada.  That 22% figure is WAY down from rates in the 1970's where more than 70% of individuals with cancer in the US died in the hospital.

What about costs? Well, the standard narrative didn't hold up that well. In the last 6 months of life, the average American with cancer accrued around $27,000 worth of hospital costs. That's a lot more than those in The Netherlands ($13,000), but pretty similar to those in Canada and Germany.

I wouldn't be surprised if we see certain press outlets, or, perish the thought, politicians crowing about how American health care costs seem pretty manageable.  But here are some things to consider.  First, this study only examined cancer patients.  What's more, they only examined cancer patients who died. This says nothing about the myriad other costs our highly-medicalized society accrues on the day to day. Second, the study looked only at inpatient hospital costs. Americans spend less time in the hospital at the end of life thanks to a fairly robust nursing facility and hospice system. None of those costs were included.  Third, in the US physician fees are billed separately from hospital fees. Not so in the other six countries, and physician fees were NOT included in the US calculus.

Finally, a bit of a technical issue. How do you convert from, say, Euros to dollars in a study like this? The intuitive answer would be to use some average exchange rate over the time period studied. The authors actually used the health-specific purchasing power parity conversion rate. That's a mouthful, but basically it's a number that reflects the relative costs of purchasing a market-basket of health related goods in each country and adjusts for that.  In other words, countries where healthcare is cheaper (relative to the true exchange rate) would have their end-of-life costs adjusted upwards, making them look more expensive. I suspect this could move the final numbers by as much as 20% in either direction.

So there you go. We're doing OK here in the US, at least when it comes to caring for patients with cancer. But remember that complacency can be costly.