Compassionate Care Act

Summary#

This bill, called the Compassionate Care Act, aims to increase advance care planning and improve end-of-life care. It creates a national public education campaign, new provider tools and training, changes some Medicare telehealth rules for hospice and advance care planning, and orders several federal studies on advance directives and registries. The broad goal is to make it easier for people to record and share their care wishes and for providers to use those wishes in treatment.

• Public campaign: CDC must run a continuous public education campaign about advance care planning for at least 5 years and report on its effectiveness by July 1, 2029. Funding is authorized as needed.
• Provider resources and training: HHS must create or expand a public website for providers, fund pilot programs to add end-of-life curricula in health professional schools, and develop continuing education materials by set dates.
• Quality measures and reporting: AHRQ (with CMS) must develop core end-of-life quality measures for relevant provider settings; initial reporting would begin January 1, 2029.
• Medicare telehealth changes: The bill makes permanent an expanded use of telehealth for the face-to-face hospice recertification encounter and removes certain geographic limits for telehealth advance care planning services beginning January 1, 2027.
• Studies and demonstrations: HHS must study how to create a national uniform policy on advance directives. GAO must study a national advance directive registry. The Office of the National Coordinator for Health IT (ONC) must study EHR changes and run two demonstration programs on interoperability and electronic execution of directives.

What it means for you#

• Patients and families

  • More public information about advance directives and hospice/palliative care may make it easier to learn about and use these tools.
  • Telehealth may be a more available way to have advance care planning conversations and to meet hospice recertification face-to-face requirements.
  • The bill directs studies that could lead to more portable and interoperable advance directive systems in the future.

• Health care providers (doctors, nurses, social workers, chaplains, others)

  • New online resources and continuing education options will be created or expanded to help providers discuss and document advance care plans.
  • Providers may need to start reporting new end-of-life quality measures beginning in 2029.
  • Medicare rules will allow telehealth for advance care planning and hospice recertification in more cases, changing how some visits are delivered.

• Medical and health professional schools

  • Schools can apply for grants to add or strengthen end-of-life and palliative care training in degree programs and must meet specific training requirements if they receive grants.

• Hospitals, clinics, long-term care facilities, and EHR vendors

  • The bill encourages or requires better ways to integrate advance directives into electronic health records and funds demonstrations of standards to make documents portable.
  • Facilities may need to adopt changes to store and share advance care planning documents more visibly.

• Federal agencies

  • CDC, CMS, AHRQ, HRSA, ONC, and HHS offices have new duties and deadlines to run campaigns, create tools, develop measures, award grants, and conduct studies.

Expenses#

No clear, itemized cost estimate is included in the bill text or the supplied material.

• The bill repeatedly authorizes “such sums as may be necessary” for the public education campaign and the pilot grants, but it does not give dollar amounts.
• Likely areas of government spending include the CDC campaign, grant funding for educational pilots, development and maintenance of websites and toolkits, agency staff time to develop quality measures and curricula, and the various studies and demonstration programs.
• Possible costs to providers and schools could include time and resources to meet new training, reporting, and electronic record requirements; the bill does not provide estimates for these.
• The GAO and HHS studies may identify additional costs or savings; those are not yet available.

Proponents' View#

• The bill appears intended to increase public awareness and use of advance care planning so patients’ wishes guide care near the end of life.
• It could be seen as improving provider skills and consistency by funding training, continuing education, and curriculum changes about palliative and end-of-life care.
• Making telehealth options permanent for certain hospice encounters and removing geographic limits for advance care planning could increase access to conversations and services, especially for people in remote or underserved areas.
• Creating common quality measures and improving EHR handling of advance directives could help track and improve care across settings.
• Studies and demonstrations could lay the groundwork for interoperable, portable advance directive systems and for clearer national guidance.

Opponents' View#

• One concern is the bill does not include specific cost estimates or funding amounts for most activities, so the total federal cost is unclear.
• The bill requires new reporting and quality measures but gives limited detail about the administrative burden on providers or the costs to comply.
• It directs studies on a national uniform policy and a national registry for advance directives but does not resolve legal differences among State laws. The bill itself notes State variations and asks HHS to study barriers.
• The text authorizes a public education campaign and repeals a prior statutory provision, but the practical effect of that repeal is not explained in the bill language provided.
• It is unclear what standards or safeguards will be required for telehealth advance care planning to ensure quality, privacy, or proper verification of documents when electronic signatures, authentication, or notarization are used; the bill tasks ONC with demonstrations but leaves specifics to future work.