Making health care decisions: Do we really understand our choices?

Recent Justmeans postings introduced two complex issues: Making  health care decisions at the end of life, and what constitutes informed consent in health care. Values and personal choice are especially significant with end-of-life care decisions, which is why it's so important to have a living will and health care proxy. But the very act of creating those documents raises issues of informed consent: Are you fully aware of the directives you are giving, generally when you are healthy and sitting in a lawyer's office? A new study in the Journal of Palliative Medicine suggests not.

Among the flaws in the current advanced-directive process: Health care decisions typically given in such documents are unrealistic, even illogical. Essentially they are based on the assumption that people know when they are dying, and when treatment is futile, asking: "If you knew you were dying, would you want futile treatment?" But we can only generally measure someone's "last days" retrospectively, after they've died. The real health care decisions that patients face are much more complex, with multiple unknown factors, and competing estimates of negative and positive outcomes. Even the manner in which such probabilities are expressed can influence decisions making. Hearing you have a 95% chance of living may seem better than having a 5% chance of dying, even though they are the same thing.

Deeper inquiry using more realistic decision scenarios found that the typical living will responses correlated with actual treatment preferences about a quarter of the time. And that was for an extreme example of a stroke-induced coma. Other less clear-cut scenarios had a correlation of 7% to 15%.

Students of patient decision making learn, among other things, about the importance of trade offs, and utility. In ordered to make an informed health care decision, you have to know what the options are: "Decision A has mild side effects, but low chance of success, while option B has high chance of treatment success, but also carries a risk of severe side effects." If you are treating acne, you might lean towards A, while B might make more sense if the condition in question is advanced cancer.

Utility is about the value you place on certain health states, especially as it relates to potential disability, or reduced function. For example, many men will gladly risk sexual side effects from treatment that resolves urinary symptoms from an enlarged prostate. Others place a higher value on maintaining their sexual abilities, and would rather put up with urinary symptoms.

All of this points to the importance of moving away from the old world of 'informed consent" towards a model based on "informed patient choice," something being championed by health care improvement experts at The Dartmouth Institute (my employer) and elsewhere. It's a small but growing movement based on the not-so-radical concept that high quality health care depends on having informed patients participating in the decision-making surrounding their own care.