[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[S. 4949 Introduced in Senate (IS)]

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118th CONGRESS
  2d Session
                                S. 4949

                      To improve end-of-life care.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                             August 1, 2024

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, 2024, 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, 2026, 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, 2025, 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. 3002 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, 2024, 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, 2026, 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, 2024, 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 December 31, 2024'' 
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, 2024, 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, 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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