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[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H.R. 9237 Introduced in House (IH)]
<DOC>
118th CONGRESS
2d Session
H. R. 9237
To improve end-of-life care.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
August 2, 2024
Ms. Barragan introduced the following bill; which was referred to the
Committee on Energy and Commerce, and in addition to the Committee on
Ways and Means, for a period to be subsequently determined by the
Speaker, in each case for consideration of such provisions as fall
within the jurisdiction of the committee concerned
_______________________________________________________________________
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 has 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.
<all>
Introduced in House
Introduced in House
Referred to the Committee on Energy and Commerce, and in addition to the Committee on Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
Referred to the Committee on Energy and Commerce, and in addition to the Committee on Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
Referred to the Subcommittee on Health.
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