We live in an era where a tap on a smartphone can summon a car or transfer funds across continents. Yet when a patient arrives unconscious in a hospital emergency department, his or her documented wishes about the extent of life-sustaining treatment to be received—often the product of careful, emotionally difficult consultations and conversations—may be sitting in a filing cabinet miles away or, in the best case, waiting to be faxed.
This incongruity between our technological capabilities and our healthcare infrastructure carries profound consequences. Spending on Medicare beneficiaries in their last year of life accounts for around 25 percent of total traditional Medicare spending. Studies consistently demonstrate gaps between patients' expressed treatment preferences and the care they actually receive.
Where robust POLST (Physician Orders for Life-Sustaining Treatment) programs and electronic registries are maintained, treatment preferences are respected up to 98 percent of the time. Where such infrastructure is absent, patients face a troubling possibility: receiving aggressive interventions they explicitly declined.
The Current Landscape
Unlike general advance directives, POLST forms are portable physician orders that translate treatment preferences into actionable medical instructions. Forty-six states now have some form of POLST program. Yet the mechanism for ensuring these forms reach the right hands remains remarkably antiquated.
In most jurisdictions, the “state-of-the-art” involves faxing completed POLST forms to area hospitals. Even Oregon, which pioneered POLST in 1991 and operates perhaps the nation's most sophisticated registry, relies heavily on a 24/7 call center where providers request forms that are then faxed to receiving facilities.
Each state has developed its own approach: some integrate with Health Information Exchanges, others maintain standalone registries, and many have no centralized system at all. A patient's documented wishes might be instantly accessible in one state and virtually inaccessible in another.
The Legal and Economic Stakes
The consequences of this fragmentation extend beyond inconvenience. Administering medical treatment to a patient without his or her consent, even if intended to help, constitutes battery under long-established legal principles. As Justice Cardozo articulated in his landmark 1914 opinion in Schloendorff v. Society of New York Hospital, "Every human being of adult years and sound mind has a right to determine what shall be done with his own body."
When emergency providers cannot access a patient's treatment preferences, the default protocol is aggressive intervention. This presumption makes sense when wishes are genuinely unknowable. But when a patient has engaged in the difficult work of clarifying their preferences and documenting their choices, in an age where information can flow as freely as it does in ours, the administration of unwanted treatment represents a legal wrong and an unwarranted impingement on human autonomy and dignity. That impingement requires significant expenditure, particularly for Medicare, the healthcare payor for most elderly Americans. End-of-life treatment costs Medicare hundreds of billions of dollars annually and, because end-of-life wishes are not readily available in all exigent situations, some portion of that is for undesired emergency hospitalizations, intensive care admissions and aggressive interventions.
The Case for Federal Infrastructure
Healthcare regulation has traditionally been a state domain, and advance care planning touches sensitive questions about life, death, and individual autonomy where local norms historically have held sway. Yet our federalist structure increasingly conflicts with the realities of modern healthcare delivery.
A patient who has a heart attack while visiting grandchildren in another state should not receive unwanted resuscitation because their documented wishes exist only in a registry that doesn't communicate across state lines. The information economy has rendered geographic boundaries largely irrelevant for data transmission; our regulatory frameworks should reflect this reality.
A Modest Proposal
We propose the creation of a national POLST registry—a centralized, cloud-based infrastructure that would make documented treatment preferences immediately accessible to authorized healthcare providers anywhere in the country. Such a system would require standardized data formats, robust authentication protocols, and clear governance structures to address privacy concerns.
The risk of centralized health data is real. Consolidated information presents a more attractive target for malicious actors, and breaches could expose highly sensitive information about patients' end-of-life wishes at a larger scale than breaches of state systems alone. These concerns warrant serious attention in system design and security protocols.
Beyond POLST
The deeper question is whether federalism, as applied to health information infrastructure in other contexts, serves patients' interests in the modern era. For instance, physician licensure that prevents a Massachusetts doctor from prescribing medication to a patient in Florida reflects a regulatory framework designed for a world of physical proximity in healthcare relationships that no longer necessarily exists.
We do not address where the boundary between federal and state authority should lie in all healthcare matters. Standards of care, scope of practice, and local community values may appropriately remain subject to state variation. But facilitating the transmission of information, including information as consequential as a patient's documented wishes about life-sustaining treatment, does not involve a significant realignment of federal and state power.
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