Trying to effectively manage high-cost episodes is critical to controlling overall health spending. Yet in many cases, that task is made much more difficult by the patient’s inability to function as a decision-maker regarding their care. A New England Journal of Medicine article describes various state laws on surrogate decision-makers. (NEJM Article) Decisional incapacity is estimated to affect around 40% of adult medical inpatients and hospice patients, and over 90% of those in intensive care units. That is a lot of medical spending. Some of these patients, but not many, only around 25%, have created advance directives, but even these may not provide adequate guidance for all decisions. So most states have laws that provide some direction on who may make decisions when the patient can’t. The lack of uniformity among states, however, complicates guidance for providers, as they and the patient may be in one state and the decision-maker in another. The patient may reside in one state but be treated in another.
Some states require that the person be capable of engaging in complex medical decision-making. That doesn’t cover many of us, including, unfortunately, some clinicians. And if the state law says a particular person might qualify as an alternative decision-maker, they have to willing to do so. 41 states allow for appointment of a surrogate decision-maker if there is no person qualified and willing under the statue. The confusion and uncertainty inherent in these situations leaves providers vulnerable and may even create liability concerns for them. It also likely means that in most cases a lot of care, often expensive care, is delivered that the patient might not really need, not want and that is futile. Looks like an area ripe for federal uniformity, especially since most of this care is probably paid for under Medicare and Medicaid. The federal law should not only relate to how surrogates are selected, but should require that only care clearly supported by evidence be delivered and that care likely to be futile must be avoided. Policymakers need to empower clinicians to not deliver care they know isn’t going to make a difference.