Medicare patients get a say: new federal advance directive registry

What it does

This bill creates a Medicare program requiring the federal government to establish a national registry where Medicare beneficiaries can voluntarily store and share advance directives (living wills and healthcare power-of-attorney documents) electronically. The program certifies vendors who store these directives, ensures they comply with state law and federal privacy rules, and makes directives accessible to doctors, family members, and healthcare proxies in emergencies—aiming to ensure patients' end-of-life wishes are known and followed.

Why we flagged it

The bill's core function is to establish infrastructure for patients to document and communicate their end-of-life medical preferences. It is fundamentally about patient agency and transparency in healthcare decision-making, not about cost control, reimbursement, or industry regulation.

What the text implies

• Vendors accredited under this program may accumulate detailed health preference data on millions of Medicare beneficiaries, creating a valuable dataset for research, product development, or secondary uses if privacy safeguards weaken over time.
• The bill requires vendors to pass 'rigorous independent testing' and 'real-time load tests' but does not specify who conducts these tests or how results are disclosed, potentially creating a compliance theater where vendors self-certify or use friendly auditors.
• State-by-state advance directive form variation is preserved, but the federal website becomes the de facto national clearinghouse—states with weak advance directive laws or no statutory forms may see their residents adopt federal 'alternative forms' instead, subtly shifting power toward federal standards.
• The 'interested individual' access provision in cases of treatment disputes (subsection (f)) may create litigation risk if family members or third parties use the directive registry to challenge medical decisions, potentially slowing end-of-life care in contested cases.

Who it affects

Ordinary citizens gain clearer control over their own medical care at end of life, improved access to their own documents, and reduced family conflict during medical crises. The program is voluntary, protects privacy under HIPAA, and costs nothing to beneficiaries. The main public benefit is transparency and patient autonomy in healthcare decision-making.

Who stands to gain

• Electronic health records vendors
• Healthcare IT companies specializing in advance directive management
• Cloud storage and data security firms
• Legal document preparation software companies

Named in the bill

Centers for Medicare & Medicaid Services (CMS), Secretary of Health and Human Services, Medicare Part A and Part B beneficiaries, Advance directive vendors, State attorneys general, Health Insurance Portability and Accountability Act (HIPAA), Comptroller General of the US

Where it stands

3 cosponsors: 2 Democrats, 1 Republicans.

• Dec 15, 2025 — Introduced · Congress.gov: “Introduced in Senate”
• Dec 15, 2025 — Referred to Senate Committee on Finance · Congress.gov: “Read twice and referred to the Committee on Finance”

Dates and quoted wording are Congress.gov's action record; the timeline shows status changes, not every procedural step.

Money around this bill

1 lobbying clients named this bill on 1 disclosure filings across 1 quarter, Jun 2026 to Jun 2026. Those filings disclosed $20,000 in lobbying spend. A filing names 7 bills on average, so that figure is what each filing reported, not a share belonging to this bill.

More lobbying clients named this bill than 0% of bills with at least one filing.

Bill Cassidy, the sponsor, reported $1,329,254 in PAC receipts in the 2026 cycle.

• Compassion & Choices — $20,000 on 1 filing

Lobbying Disclosure Act filings through Jul 20, 2026. A filing shows who paid to lobby on a bill it names, not what changed.