Compassionate Care Act

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[S. 5219 Introduced in Senate (IS)]

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119th CONGRESS
  2d Session
                                S. 5219

                      To improve end-of-life care.

_______________________________________________________________________

                   IN THE SENATE OF THE UNITED STATES

                             August 3, 2026

Mr. Blumenthal introduced the following bill; which was read twice and
  referred to the Committee on Health, Education, Labor, and Pensions

_______________________________________________________________________

                                 A BILL

                      To improve end-of-life care.

    Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    (a) Short Title.--This Act may be cited as the ``Compassionate Care
Act''.
    (b) Table of Contents.--The table of contents of this Act is as
follows:

Sec. 1. Short title.
Sec. 2. Definitions.
                     TITLE I--ADVANCE CARE PLANNING

                     Subtitle A--Consumer Education

Sec. 101. Advance care planning guidelines.
Sec. 102. National public education campaign.
                     Subtitle B--Provider Education

Sec. 111. Public provider advance care planning website.
Sec. 112. Advance care curricula pilot program.
Sec. 113. Development of core end-of-life care quality measures across
                            each relevant provider setting.
Sec. 114. Continuing education for qualified health care providers.
                    Subtitle C--Medicare Amendments

Sec. 121. Permanent extension of authorization for use of telehealth to
                            conduct face-to-face encounter prior to
                            recertification of eligibility for hospice
                            care.
Sec. 122. Improvements to advance care planning through telehealth.
              TITLE II--REPORTS, RESEARCH, AND EVALUATIONS

Sec. 201. Study and report by the Secretary regarding the establishment
                            and implementation of a national uniform
                            policy on advance directives.
Sec. 202. GAO study and report on establishment of national advance
                            directive registry; other studies.

SEC. 2. DEFINITIONS.

    In this Act:
            (1) Advance care planning.--The term ``advance care
        planning'' means the process of discussion of care in the event
        that an individual is unable to make treatment decisions on
        their own behalf, clarification of related values and goals,
        and embodiment of preferences and decision-making through
        written documents and medical orders.
            (2) Advance directive.--The term ``advance directive''
        means a written or otherwise recorded instruction, such as a
        living will or durable power of attorney for health care,
        recognized under the law of the State in which it was executed
        (whether statutory or as recognized by the courts of the State)
        and relating to the provision of such care when the individual
        is incapacitated.
            (3) Certified chaplain.--The term ``certified chaplain''
        means a member of clergy who has met the requirements under the
        Common Qualifications and Competencies for Professional
        Chaplains and is board certified by a national chaplaincy
        organization.
            (4) CHIP.--The term ``CHIP'' means the State Children's
        Health Insurance Program under title XXI of the Social Security
        Act (42 U.S.C. 1397aa et seq.).
            (5) End-of-life-care.--The term ``end-of-life care'' means
        all aspects of care of a patient with a potentially fatal
        condition, and includes care that is focused on preparations
        for an impending death.
            (6) Health care agent.--The term ``health care agent''
        means the person, designated in a health care power of
        attorney, who is selected to make medical decisions on behalf
        of the person who executed such power of attorney, in the case
        of incapacity of such person who executed the power of
        attorney.
            (7) Health care power of attorney.--The term ``health care
        power of attorney'' means a legal document that identifies the
        health care agent of the person executing such document.
            (8) Living will.--The term ``living will'' means a written
        document or a video statement about the kinds of medical care
        or other care a person does or does not want under certain
        specific conditions, in the event that such person no longer is
        able to express those wishes.
            (9) Medicaid.--The term ``Medicaid'' means the program
        established under title XIX of the Social Security Act (42
        U.S.C. 1396 et seq.).
            (10) Medicare.--The term ``Medicare'' means the program
        established under title XVIII of the Social Security Act (42
        U.S.C. 1395 et seq.).
            (11) Orders for life-sustaining treatment.--The term
        ``orders for life-sustaining treatment'' means a set of
        portable medical orders (such as physician orders for life-
        sustaining treatment or similar portable medical orders) that
        address key medical decisions consistent with the patient's
        goals of care and results from a clinical process designed to
        facilitate shared, informed medical decisionmaking and
        communication between qualified health care professionals and
        patients with serious, progressive illness or frailty.
            (12) Qualified health care provider.--The term ``qualified
        health care provider'' means a medical doctor, doctor of
        osteopathy, nurse, physician assistant, nurse practitioner,
        social worker, home health aide, palliative care professional,
        community health worker, community health educator, or
        individual in a similar position, as designated by the
        Secretary.
            (13) Secretary.--The term ``Secretary'' means the Secretary
        of Health and Human Services.

                     TITLE I--ADVANCE CARE PLANNING

                     Subtitle A--Consumer Education

SEC. 101. ADVANCE CARE PLANNING GUIDELINES.

    It is the sense of the Senate that, to the extent practicable,
advance care planning should--
            (1) occur with an individual and such individual's health
        care agent, primary clinician, other authorized decisionmaker,
        or members of the entire interdisciplinary health care team;
            (2) be recorded and updated as needed; and
            (3) allow for flexible decisionmaking in the context of the
        patient's medical situation, in accordance with best practice
        guidelines provided by the Secretary.

SEC. 102. NATIONAL PUBLIC EDUCATION CAMPAIGN.

    (a) National Public Education Campaign.--
            (1) In general.--Not later than January 1, 2026, the
        Secretary, acting through the Director of the Centers for
        Disease Control and Prevention and in consultation with public
        and private entities, shall, directly or through grants,
        contracts, or interagency agreements, develop and implement a
        national campaign to inform the public of the importance of
        advance care planning and of an individual's right to direct
        and participate in health care decisions affecting such
        individual.
            (2) Content of educational campaign.--The national public
        education campaign established under paragraph (1) shall--
                    (A) employ the use of various media, including
                social media platforms and televised public service
                announcements;
                    (B) provide culturally and linguistically
                appropriate information;
                    (C) be conducted continuously over a period of not
                less than 5 years;
                    (D) identify and promote the advance care planning
                information available on the internet websites of the
                Department of Health and Human Service's National
                Clearinghouse for Long-Term Care Information, the
                Administration for Children and Families, the
                Administration for Community Living, and the Centers
                for Medicare & Medicaid Services;
                    (E) address the importance of individuals speaking
                to family members, health care proxies, and qualified
                health care providers as part of an ongoing dialogue
                regarding health care choices;
                    (F) address the need for individuals to use
                portable, interoperable, and accessible methods to
                communicate their health care decisions through a
                variety of means, using legally effectuated documents
                that express their health care decisions in the form of
                advance directives (including living wills, orders for
                life-sustaining treatment, and durable powers of
                attorney for health care);
                    (G) raise public awareness regarding the
                availability of hospice and palliative care and the
                quality of life benefits of early use of such services;
                    (H) encourage individuals to speak with qualified
                health care professionals about their options and
                intentions for end-of-life care; and
                    (I) adhere to evidence-based research on the most
                effective ways to communicate the necessity and
                benefits of advance care planning.
            (3) Evaluation.--Not later than July 1, 2028, the Secretary
        shall report to the appropriate committees of Congress on the
        effectiveness of the public education campaign under this
        section, and include in such report any recommendations that
        the Secretary determines appropriate regarding the need for
        continuation of legislative or administrative changes to
        facilitate changing public awareness, attitudes, and behaviors
        regarding advance care planning.
            (4) Authorization of appropriations.--There are authorized
        to be appropriated such sums as may be necessary to carry out
        this section.
    (b) Repeal.--Section 4751(d) of the Omnibus Budget Reconciliation
Act of 1990 (42 U.S.C. 1396a note; Public Law 101-508) is repealed.

                     Subtitle B--Provider Education

SEC. 111. PUBLIC PROVIDER ADVANCE CARE PLANNING WEBSITE.

    (a) Development.--Not later than January 1, 2027, the Secretary,
acting through the Administrator of the Centers for Medicare & Medicaid
Services and the Director of the Agency for Healthcare Research and
Quality, shall establish an, or expand upon an existing, internet
website for providers under Medicare, Medicaid, CHIP, the Indian Health
Service (including contract providers), and other qualified health care
providers, including qualified health care providers receiving
assistance under the Older Americans Act of 1965 (42 U.S.C. 3001 et
seq.) to serve older individuals, on each individual's right to make
decisions concerning medical care, including the right to accept or
refuse medical or surgical treatment, and engage in advance care
planning.
    (b) Maintenance.--The internet website described in subsection (a)
shall be maintained and publicized by the Secretary on an ongoing
basis.
    (c) Content.--The internet website shall include content, tools,
and resources necessary to do the following:
            (1) Inform qualified health care providers and certified
        chaplains about the advance directive requirements under the
        health care programs described in subsection (a) and State and
        Federal laws and regulations related to advance care planning.
            (2) Educate qualified health care providers and certified
        chaplains about advance care planning quality improvement
        activities.
            (3) Provide assistance to qualified health care providers
        to--
                    (A) integrate advance care planning documents into
                electronic health records; and
                    (B) develop and disseminate advance care planning
                informational materials for patients.
            (4) Inform qualified health care providers about advance
        care planning continuing education requirements and
        opportunities.
            (5) Encourage qualified health care providers to discuss
        advance care planning with patients of all ages, as
        appropriate.
            (6) Assist qualified health care providers and certified
        chaplains in understanding the continuum of end-of-life care
        services and supports available to patients, including
        palliative care and hospice.
            (7) Inform qualified health care providers of best
        practices for discussing end-of-life care with patients who
        have a serious or terminal diagnosis or prognosis and their
        loved ones.

SEC. 112. ADVANCE CARE CURRICULA PILOT PROGRAM.

    (a) In General.--The Secretary, in consultation with appropriate
professional associations, shall establish a pilot program by which the
Secretary awards grants to eligible entities for purposes of supporting
such entities in establishing end-of-life training requirements in the
entities' applicable degree programs.
    (b) Eligibility.--To be eligible to participate in the pilot
program under this section, an entity shall--
            (1) be a school of medicine, school of osteopathic
        medicine, a physician assistant education program (as defined
        in section 799B(3) of the Public Health Service Act (42 U.S.C.
        295p(3))), a school of allied health (as defined in section
        799B(4) of the Public Health Service Act (42 U.S.C. 295p(4))),
        a school of nursing, a school of social work, a graduate
        medical education program accredited by the Accreditation
        Council for Graduate Medical Education or the American
        Osteopathic Association, or other school, as the Secretary
        determines appropriate;
            (2) be staffed by teaching health professionals who have
        experience or training in palliative medicine;
            (3) provide training in palliative medicine through a
        variety of service rotations, such as consultation services,
        acute care services, extended care facilities, ambulatory care
        and comprehensive evaluation units, hospice, home health, and
        community care programs;
            (4) develop specific performance-based measures to evaluate
        the competency of trainees; and
            (5) ensure that by not later than the end of the 2-year
        period beginning on the date of enactment of this Act,
        professionals who are applicable faculty at the entity, or
        others as determined appropriate by the Secretary, shall be
        offered retraining in hospice and palliative medicine.
    (c) Training.--Eligible entities participating in the pilot program
under this section shall require minimum training for trainees that
includes--
            (1) training in how to discuss and help patients and their
        loved ones with advance care planning;
            (2) with respect to trainees who will work with children,
        specialized pediatric training;
            (3) training in the continuum of end-of-life services and
        supports, including palliative care and hospice;
            (4) training in how to discuss end-of-life care with dying
        patients and their loved ones;
            (5) medical and legal issues training associated with end
        of life care;
            (6) training in linguistic and cultural competency; and
            (7) in the case of a graduate medical education program
        accredited by the Accreditation Council for Graduate Medical
        Education or the American Osteopathic Association, a
        longitudinal component of at least 6 months.
    (d) Reports.--Each recipient of a grant under this section shall
report to the Secretary on the outcomes of the program within 18 months
of receipt of the final allotment of grant funds. Not later than 1 year
after receipt of all such reports, the Secretary shall submit to
Congress a report compiling such results from all grant recipients.
    (e) Authorization of Appropriations.--There are authorized to be
appropriated such sums as may be necessary to carry out this section.

SEC. 113. DEVELOPMENT OF CORE END-OF-LIFE CARE QUALITY MEASURES ACROSS
              EACH RELEVANT PROVIDER SETTING.

    (a) In General.--The Secretary, acting through the Director of the
Agency for Healthcare Research and Quality (in this section referred to
as the ``Director'') and in consultation with the Administrator of the
Centers for Medicare & Medicaid Services, shall require the development
of specific end-of-life quality measures for each relevant qualified
health care provider setting, as identified by the Director, in
accordance with the requirements of subsection (b).
    (b) Requirements.--For purposes of subsection (a), the requirements
specified in this subsection are the following:
            (1) Selection of the specific measure or measures for an
        identified provider setting shall be based on an assessment of
        what is likely to have the greatest positive impact on quality
        of end-of-life care in that setting, and made in consultation
        with affected providers, patients, and private organizations,
        that have developed such measures.
            (2) The measures may be structure-oriented, process-
        oriented, or outcome-oriented, as determined appropriate by the
        Director, and shall be patient-oriented.
            (3) The Director shall ensure that reporting requirements
        related to such measures--
                    (A) are imposed consistently with other applicable
                laws and regulations, and in a manner that takes into
                account existing measures, the needs of patient
                populations, the specific services provided, and the
                potential administrative burden to providers; and
                    (B) include demographic information to account for
                race, ethnicity, age, and gender, and other appropriate
                categories.
            (4) Not later than--
                    (A) January 1, 2026, the Secretary shall
                disseminate the reporting requirements to all affected
                providers and provide for a 60-day period for public
                comment; and
                    (B) January 1, 2028, initial reporting by health
                care providers relating to the measures shall begin.

SEC. 114. CONTINUING EDUCATION FOR QUALIFIED HEALTH CARE PROVIDERS.

    (a) In General.--Not later than January 1, 2026, the Secretary,
acting through the Administrator of the Health Resources and Services
Administration, shall develop or enhance new and existing curricula on
advance care planning and end-of-life care for continuing education
that States may adopt for qualified health care providers.
    (b) Consultation.--In carrying out subsection (a), the Secretary,
acting through the Administrator of the Health Resources and Services
Administration, may consult with qualified health care providers,
applicable professional clinician associations, institutions of higher
education, State boards of medicine and nursing, and other
professionals, as the Secretary determines appropriate.
    (c) Content.--The continuing education curriculum developed or
enhanced under subsection (a) shall, at a minimum, include--
            (1) a description of the meaning and importance of advance
        care planning;
            (2) a description of advance care planning documents,
        including living wills and durable powers of attorney, and the
        use of such directives;
            (3) the appropriate use of orders for scope of treatment;
            (4) counseling skills for when and how to introduce and
        engage in advance care planning with patients and their loved
        ones;
            (5) palliative care principles and approaches to care;
            (6) the continuum of end-of-life services and supports,
        including palliative care and hospice; and
            (7) the importance of introducing palliative care and
        hospice early in illness in order to improve quality of life.

                    Subtitle C--Medicare Amendments

SEC. 121. PERMANENT EXTENSION OF AUTHORIZATION FOR USE OF TELEHEALTH TO
              CONDUCT FACE-TO-FACE ENCOUNTER PRIOR TO RECERTIFICATION
              OF ELIGIBILITY FOR HOSPICE CARE.

    Section 1814(a)(7)(D)(i)(II) of the Social Security Act (42 U.S.C.
1395f(a)(7)(D)(i)(II)) is amended by striking ``during the emergency
period'' and all that follows through ``ending on March 31, 2025'' and
inserting the following: ``during and after the emergency period
described in section 1135(g)(1)(B)''.

SEC. 122. IMPROVEMENTS TO ADVANCE CARE PLANNING THROUGH TELEHEALTH.

    Section 1834(m) of the Social Security Act (42 U.S.C. 1395m(m)) is
amended--
            (1) in paragraph (4)(C)--
                    (A) in clause (i), in the matter preceding
                subclause (I), by striking ``and (7)'' and inserting
                ``(7), and (10)''; and
                    (B) in clause (ii)(X), by inserting ``or paragraph
                (10)'' before the period; and
            (2) by adding at the end the following new paragraph:
            ``(10) Treatment of advance care planning services.--The
        geographic requirements described in paragraph (4)(C)(i) shall
        not apply with respect to telehealth services furnished on or
        after January 1, 2026, for purposes of furnishing advance care
        planning services, as determined by the Secretary.''.

              TITLE II--REPORTS, RESEARCH, AND EVALUATIONS

SEC. 201. STUDY AND REPORT BY THE SECRETARY REGARDING THE ESTABLISHMENT
              AND IMPLEMENTATION OF A NATIONAL UNIFORM POLICY ON
              ADVANCE DIRECTIVES.

    (a) Study.--
            (1) In general.--The Secretary, acting through the Office
        of the Assistant Secretary for Planning and Evaluation, shall
        conduct a study to evaluate the barriers to establishing and
        implementing a national uniform policy on advance directives
        and what needs to be done to overcome those barriers.
            (2) Matters studied.--The matters studied by the Secretary
        under paragraph (1) shall include issues concerning--
                    (A) family satisfaction that a patient's wishes, as
                stated in the patient's advance directive, were carried
                out;
                    (B) the usability, accessibility, interoperability,
                and portability of advance directives, including cases
                involving the transfer of an individual from one health
                care setting to another;
                    (C) the feasibility of establishing an optional,
                national advance directive form deemed valid by any
                health care entity or qualified health care provider
                participating in Medicare, Medicaid, or CHIP,
                regardless of State law; and
                    (D) State variations in advance directive laws that
                are relevant to the establishment and implementation of
                a national uniform policy of advance directives.
    (b) Report to Congress.--Not later than 2 years after the date of
enactment of this Act, the Secretary shall submit to Congress a report
on the study conducted under subsection (a), together with
recommendations for such legislation and administrative actions as the
Secretary considers appropriate.
    (c) Consultation.--In conducting the study and developing the
report under this section, the Secretary shall consult with relevant
stakeholders and other interested parties.

SEC. 202. GAO STUDY AND REPORT ON ESTABLISHMENT OF NATIONAL ADVANCE
              DIRECTIVE REGISTRY; OTHER STUDIES.

    (a) Study and Report on Establishment of National Advance Directive
Registry.--
            (1) Study.--The Comptroller General of the United States
        shall conduct a study on the feasibility of a national registry
        for advance directives, taking into consideration the
        constraints created by the privacy provisions enacted as a
        result of the Health Insurance Portability and Accountability
        Act of 1996 (Public Law 104-191).
            (2) Report.--Not later than 18 months after the date of
        enactment of this Act, the Comptroller General of the United
        States shall submit to Congress a report on the study conducted
        under subsection (a) together with recommendations for such
        legislation and administrative action as the Comptroller
        General of the United States determines to be appropriate.
    (b) ONC Study.--The National Coordinator of the Office of the
National Coordinator for Health Information Technology shall conduct a
study on the feasibility and impact on advance care planning of
requiring that electronic health record vendors seeking certification
have a prominent and easily visible field for storing and sharing
advance care planning documents and related clinical notes.
    (c) ONC Demonstration Programs.--The National Coordinator for
Health Information Technology, in collaboration with the Director of
the National Institute of Standards and Technology, shall initiate 2
demonstration programs to establish best practices and recommended
standards to support--
            (1) usability, portability and interoperability of advance
        directives that are accessible to individuals, clinicians, and
        other authorized individuals; and
            (2) the use of electronic signatures (as defined in section
        106 of the Electronic Signatures in Global and National
        Commerce Act (15 U.S.C. 7006)), electronic authentication of
        witnesses, and electronic notarization to effectuate advance
        directives.
    (d) Additional Study.--The Comptroller General of the United States
shall conduct a study and submit a report to Congress on the incidence
of health care, tests, surgeries, drugs, and other services paid
provided by qualified health care providers and paid for by the Federal
Government or the patient and that were not the preference of the
patient or the authorized health care agent of the patient.
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