Two bipartisan members of Congress have introduced legislation designed to help ensure that individuals’ end-of-life wishes are honored.

Reps. Tom Suozzi (D-N.Y.) and Dr. Greg Murphy (R-N.C.) have drafted the Legacy Act to foster greater adherence to patients’ medical, personal and religious directives by health care providers, including access to hospice care.

If enacted, the bill would create pathways and encourage Medicare-certified health care organizations to join an existing standardized, centralized depository to securely store and easily retrieve advance care plans and other medical decision-making documents. 

“Too often, families face confusion and emotional distress because essential health care directives or medical proxy forms cannot be easily located or verified. The Legacy Act would help patients, families and health care providers make timely, informed decisions — honoring personal choice, preserving dignity and reducing unnecessary conflict when it matters most,” said Suozzi in a statement. “This is about clarity, compassion and common sense in health care. Every person deserves the peace of mind that their voice will be heard, and their decisions respected.”

A growing number of families will face end-of-life decisions as aging populations swell nationwide. Roughly 82 million people in the United States will be 65 or older by 2050, a 47% rise from 58 million in 2022, according to projections from the U.S. Census Bureau.

However, a large proportion of families nationwide have not held advance care planning discussions. Only 10.9% of 955, 777 Medicare decedents who died between 2017 and 2018 utilized these services, a JAMA Health Forum study found.

However, even when these documents are in place, providers may deliver care that is not goal-concordant because they haven’t seen or are unable to locate or access the documents.

Researchers from the Regenstrief Institute and Indiana University School of Nursing recently conducted a meta-analysis of studies involving more than 33,000 cancer patients to evaluate the relationship between advance care planning and utilization of aggressive versus comfort-focused care.

They found that patients with these plans in place were less likely to seek aggressive care. However, an effective planning process had to involve more than just filling out forms. It requires careful communication designed to identify what is most important to patients.

“End-of-life care and the death of a loved one is a very difficult time for families and all those involved,” Murphy said in a statement. “Improving the storage of and access to last-wish documents is essential to honoring those who cannot speak for themselves. I’m proud to lead this meaningful, bipartisan legislation to make commonsense reforms to ensure individuals can pass with dignity and their last wishes can be executed seamlessly.”

Hospice industry and serious illness care organizations were quick to endorse the bill, including the National Partnership for Healthcare and Hospice Innovation (NPHI) and the Coalition to Transform Advanced Care (C-TAC).

“Too often, families and care teams struggle to locate critical documents that express a person’s preferences for care and decision-making,” said Tom Koutsoumpas, founder and CEO of NPHI. “A secure, national system for storing last wish documents will help health care providers uphold patients’ values and choices, reduce stress for families, and honor the deeply human desire to be known, heard and respected during life’s final chapter.”