[Congressional Bills 114th Congress]
[From the U.S. Government Publishing Office]
[H.R. 5555 Introduced in House (IH)]

<DOC>






114th CONGRESS
  2d Session
                                H. R. 5555

  To amend titles XVIII and XIX of the Social Security Act to improve 
           end-of-life care and advanced illness management.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                             June 22, 2016

 Mr. Blumenauer (for himself and Mr. Roe of Tennessee) 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 amend titles XVIII and XIX of the Social Security Act to improve 
           end-of-life care and advanced illness management.

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

SECTION 1. SHORT TITLE; FINDINGS; TABLE OF CONTENTS.

    (a) Short Title.--This Act may be cited as the ``Personalize Your 
Care Act 2.0''.
    (b) Findings.--Congress finds the following:
            (1) All individuals should be afforded the opportunity to 
        fully participate in decisions related to their health care.
            (2) Care near the end of life should be person- and family-
        oriented and evidence-based.
            (3) To ensure high-quality, person-centered care near the 
        end of life, care must align with an individual's goals, 
        values, and stated preferences.
            (4) Advance care planning plays a valuable role in 
        achieving quality care by informing providers and family 
        members of an individual's treatment preferences.
            (5) All clinicians who care for people with advanced 
        serious illness should demonstrate competence in basic advance 
        care planning and palliative care, including communication 
        skills, inter-professional collaboration, and symptom 
        management.
            (6) More should be done to establish specific policies and 
        programs to assist people with sensory, mental, and other 
        disabilities in order to maximize the degree to which they are 
        active participants in the decisions related to their health 
        care, including training health care providers how to 
        communicate with people with developmental, psychiatric, 
        speech, and sensory disabilities.
            (7) Including completed advance care planning documents 
        within a patient's electronic health record can increase the 
        likelihood these documents are kept current and available at 
        the right place at the right time.
            (8) A decade of research has demonstrated that physician 
        orders for life-sustaining treatment effectively convey patient 
        preferences and guide medical personnel toward medical 
        treatment aligned with patient wishes.
            (9) Patients, caregivers, families, and health 
        professionals would benefit from an authoritative, validated 
        list of core components to the delivery high-quality end-of-
        life care.
            (10) Palliative care, hospice, and various care models that 
        integrate health care and supportive services provide high-
        quality end-of-life care and reduce the use of avoidable 
        hospital- and institution-based services that the patient does 
        not want.
    (c) Table of Contents.--The table of contents of this Act is as 
follows:

Sec. 1. Short title; findings; table of contents.
Sec. 2. Advanced illness management and choices care model 
                            demonstration program.
Sec. 3. Grants for programs for orders for life-sustaining treatment 
                            and similar provider or medical orders.
Sec. 4. Advance care planning standards for electronic health records.
Sec. 5. Portability of advance directives.
Sec. 6. Application of quality measures under Medicare relating to end-
                            of-life care.
Sec. 7. Annual report on Medicare decedents.
Sec. 8. Grants to increase public awareness of advance care planning.
Sec. 9. Advance care planning and palliative care education and 
                            training.
Sec. 10. Advance Care Planning Advisory Council.

SEC. 2. ADVANCED ILLNESS MANAGEMENT AND CHOICES CARE MODEL 
              DEMONSTRATION PROGRAM.

    (a) In General.--The Secretary of Health and Human Services (in 
this section referred to as the ``Secretary'') shall establish a 3-year 
demonstration program (in this section referred to as the 
``demonstration program'') to test the use of advanced illness 
management and early use of palliative care under the Medicare program. 
The Secretary may extend the program to a duration of 4 or 5 years, as 
determined necessary by the Secretary in coordination with the Centers 
for Medicare and Medicaid Innovation.
    (b) Demonstration Program Design.--Under the demonstration program 
the Secretary shall establish a capitated payment for the payment of 
advanced illness management services and the early use of palliative 
care consistent with the following:
            (1) The services and care are furnished to individuals 
        who--
                    (A) reside at home or in an institutional setting;
                    (B) have a documented medical prognosis that the 
                individual's life expectancy is 24 months or less; and
                    (C) have the need for assistance with two or more 
                activities of daily living or meet such other criteria 
                as the Secretary may specify.
            (2) The services and care are furnished concurrently with 
        the receipt of services related to the treatment of the 
        individual's condition with respect to which a diagnosis of 
        terminal illness has been made.
            (3) The services and care include at least hospice care (as 
        defined in section 1861(dd)(1) of the Social Security Act), a 
        functional assessment of the individual and of the family 
        caregiver (as appropriate), in-home services and supports, 24-
        hour, 7-day-a-week emergency supports, care coordination and 
        communication across settings and providers, and such other 
        palliative care services as the Secretary deems necessary.
            (4) The services and care are furnished by an 
        interdisciplinary team that includes primary care providers, 
        palliative medicine specialists, palliative nurses, social 
        workers, chaplains, pharmacists, dieticians, physical 
        therapists, occupational therapists, psychotherapists, and such 
        others as the Secretary deems necessary and appropriate.
    (c) Timely Implementation.--The Secretary of Health and Human 
Services shall implement a capitated payment model for the payment of 
advanced illness management services under subsection (a) not later 
than 2 years after the date of the enactment of this Act.

SEC. 3. GRANTS FOR PROGRAMS FOR ORDERS FOR LIFE-SUSTAINING TREATMENT 
              AND SIMILAR PROVIDER OR MEDICAL ORDERS.

    (a) In General.--The Secretary of Health and Human Services shall 
make grants to eligible entities for the purpose of developing, 
expanding, and enhancing programs for orders for life-sustaining 
treatment (as defined in subsection (c)(2)).
    (b) Authorized Activities.--Activities funded through a grant under 
this section for an area may include--
            (1) developing such a program for the area that includes 
        hospitals, home care, hospice, long-term care, community and 
        assisted living residences, skilled nursing facilities, and 
        emergency medical services within a State;
            (2) expanding an existing program for orders regarding 
        life-sustaining treatment to serve more patients or enhance the 
        quality of services, including educational services for 
        patients and patients' families, training of health care 
        professionals, or establishing an orders for life-sustaining 
        treatment registry; and
            (3) technical assistance and professional training.
    (c) Definitions.--In this section:
            (1) The term ``eligible entity'' includes--
                    (A) an academic medical center, a medical school, a 
                State health department, a State medical association, a 
                multistate task force, a hospital, or a health system 
                capable of administering a program for physician orders 
                regarding life-sustaining treatment for a State; or
                    (B) any other health care agency or entity as the 
                Secretary determines appropriate.
            (2) The term ``program for orders for life-sustaining 
        treatment'' means a program that, regardless of its name--
                    (A) implements a clinical process designed to 
                facilitate shared, informed medical decisionmaking and 
                communication between health care professionals and 
                patients with serious, progressive illness or frailty 
                and results in a set of medical orders that are 
                substantially consistent with the national standard and 
                that--
                            (i) are portable and honored across care 
                        settings; and
                            (ii) address key medical decisions 
                        consistent with the patient's goals of care; 
                        and
                    (B) is guided by a coalition of stakeholders, such 
                as patient advocacy groups and representatives from 
                across the continuum of health care services, 
                disability rights advocates, senior advocates, 
                emergency medical services, long-term care, medical 
                associations, hospitals, home health, hospice, nursing 
                associations, the State agency responsible for senior 
                and disability services, faith-based groups, and the 
                State department of health.
            (3) The term ``Secretary'' means the Secretary of Health 
        and Human Services.
    (d) Authorization of Appropriations.--To carry out this section, 
there are authorized to be appropriated $35,000,000 for the 5-fiscal-
year period beginning with fiscal year 2017, to remain available until 
expended.

SEC. 4. ADVANCE CARE PLANNING STANDARDS FOR ELECTRONIC HEALTH RECORDS.

    (a) In General.--Notwithstanding section 3004(b)(3) of the Public 
Health Service Act (42 U.S.C. 300jj-14(b)(3)), not later than 4 years 
after the date of the enactment of this Act, the Secretary of Health 
and Human Services shall adopt, by rule, standards for a qualified 
electronic health record (as defined in section 3000(13) of such Act 
(42 U.S.C. 300jj(13)), with respect to organizing patient 
communications with health care providers about care goals and to 
provide one-click access to the following:
            (1) The patient's current advance directive (as defined in 
        section 1866(f)(3) of the Social Security Act (42 U.S.C. 
        1395cc(f)(3)), as applicable.
            (2) The patient's current order for life-sustaining 
        treatment (described in section 3(c)(2)(A)), as applicable.
            (3) Documentation of advance care planning discussion 
        between the patient and the provider.
    (b) Treatment of Standards.--A standard adopted under subsection 
(a) shall be treated as a standard adopted under section 3004 of the 
Public Health Service Act (42 U.S.C. 300jj-14) for purposes of 
certifying qualified electronic health records pursuant to section 
3001(c)(5) of such Act (42 U.S.C. 300jj-11(c)(5)).

SEC. 5. PORTABILITY OF ADVANCE DIRECTIVES.

    (a) In General.--Section 1866(f) of the Social Security Act (42 
U.S.C. 1395cc(f)) is amended by adding at the end the following new 
paragraph:
    ``(5)(A) An advance directive validly executed outside the State in 
which such directive is presented must be given effect by a provider of 
services or organization to the same extent as an advance directive 
validly executed under the law of the State in which it is presented.
    ``(B) In the absence of knowledge to the contrary, a physician or 
other health care provider or organization may presume that a written 
advance health care directive or similar instrument, regardless of 
where executed, is valid.
    ``(C) In the absence of a validly executed advance directive, any 
authentic expression of a person's wishes with respect to health care 
shall be honored.
    ``(D) The provisions of this paragraph shall preempt any State law 
on advance directive portability to the extent such law is inconsistent 
with such provisions. Nothing in the paragraph shall be construed to 
authorize the administration of health care treatment otherwise 
prohibited by the laws of the State in which the directive is 
presented.''.
    (b) GAO Study on Health Care Decisionmaking Laws and Barriers to 
the Use of Advance Directives.--
            (1) Study.--The Comptroller General of the United States 
        shall conduct a study that examines the use, portability, and 
        electronic storage of advance directives and that identifies 
        barriers towards adopting, using, and following advance 
        directives in the clinical setting. Such examination shall 
        include issues that remain unresolved after the Stage 3 
        Meaningful Use final rule, including barriers and solutions to 
        finding and accessing advance care planning documents, best 
        practices for alerting eligible providers to the presence of an 
        advance care plan, and best practices for transmitting advance 
        care plans across sites of care.
            (2) Report.--Not later than 1 year after the date of the 
        enactment of this Act, the Comptroller General shall submit to 
        Congress a report on the study conducted under paragraph (1) 
        and shall include in the report such recommendations regarding 
        improving advance health care planning as the Comptroller 
        General deems appropriate.

SEC. 6. APPLICATION OF QUALITY MEASURES UNDER MEDICARE RELATING TO END-
              OF-LIFE CARE.

    (a) Incorporating End-of-Life Care Subdomains Within Quality 
Domains Under Medicare Physician Fee Schedule.--Section 1848(s)(1) of 
the Social Security Act (42 U.S.C. 1395w-4(s)(1)) is amended by adding 
at the end the following new subparagraph:
                    ``(G) End-of-life subdomains relating to quality 
                domains.--Within one or more appropriate quality 
                domains, the Secretary shall establish subdomains 
                relating to end-of-life care, including subdomains 
                relating to each of the following:
                            ``(i) The process of eliciting and 
                        documenting goals, preferences, and values of 
                        the patient (and, where relevant and 
                        appropriate, family caregiver) regarding end-
                        of-life care from the patient or from a legally 
                        authorized representative, including the 
                        articulation of goals that accurately reflect 
                        how the patient wants to live.
                            ``(ii) The effectiveness, patient-
                        centeredness (and, where relevant, family 
                        caregiver-centeredness), and accuracy of end-
                        of-life care plans, including documentation of 
                        individual goals, preferences, and values.
                            ``(iii) Agreement and consistency with 
                        respect to end-of-life care among--
                                    ``(I) patient's goals, values, and 
                                preferences;
                                    ``(II) any documented care plan; 
                                and
                                    ``(III) the care delivered.''.
    (b) Incorporating Quality Measures on End-of-Life Care for Post-
Acute Care (PAC).--Section 1899B of the Social Security Act (42 U.S.C. 
1395lll) is amended--
            (1) in subsection (a)(2)(E)(i)--
                    (A) by striking ``and'' at the end of subclause 
                (IV);
                    (B) by striking the period at the end of subclause 
                (V) and inserting ``; and''; and
                    (C) by adding at the end the following new 
                subclause:
                                    ``(VI) with respect to the domain 
                                described in subsection (c)(1)(F) 
                                (relating to end-of-life care)--
                                            ``(aa) for PAC providers 
                                        described in clauses (ii), 
                                        (iii), and (iv) of paragraph 
                                        (2)(A), October 1, 2018; and
                                            ``(bb) for PAC providers 
                                        described in clauses (i) of 
                                        such paragraph, January 1, 
                                        2019.''; and
            (2) in subsection (c)(1), by adding at the end the 
        following new subparagraph:
                    ``(F) The effectiveness, patient-centeredness (and, 
                where relevant, family caregiver-centeredness), and 
                accuracy of end-of-life care plans and communications 
                relating to such plans, including--
                            ``(i) documentation of a patient's goals, 
                        preferences, and values; and
                            ``(ii) agreement and consistency with 
                        respect to end-of-life care among--
                                    ``(I) patient's goals, values, and 
                                preferences;
                                    ``(II) any documented care plan; 
                                and
                                    ``(III) the care delivered.''.

SEC. 7. ANNUAL REPORT ON MEDICARE DECEDENTS.

    The Secretary of Health and Human Services shall issue for each 
fiscal year (beginning no later than fiscal year 2018) an annual report 
that analyzes the circumstances of Medicare beneficiaries who died 
during the fiscal year covered by such report. Such analysis shall 
include at least the following with respect to such decedents:
            (1) Information on the care or payor settings (such as 
        under part A or part C of Medicare) at the time of death.
            (2) Information on the demographic characteristics of such 
        decedents.
            (3) Information on the geographic distribution of such 
        decedents.
            (4) An evaluation of the Medicare claims data for such 
        decedents for services furnished in the last year of life, 
        including an analysis of the setting of care for decedents who 
        had more than one chronic illness at the time of death.
            (5) Such other information as the Secretary deems 
        appropriate.

SEC. 8. GRANTS TO INCREASE PUBLIC AWARENESS OF ADVANCE CARE PLANNING.

    (a) In General.--The Secretary of Health and Human Services shall 
award grants to increase public awareness of advance care planning. 
Such grants shall be awarded under such terms and conditions as the 
Secretary shall specify.
    (b) Types of Grants.--Grants under this section may provide for the 
development of--
            (1) decision support tools and instructional materials for 
        individuals, family caregivers, and health care providers that 
        include the importance of planning for treatment decisions, 
        discussing values and goals related to catastrophic injury or 
        illness, and completing an advance directive; and
            (2) materials for individuals that presents the importance 
        of articulating goals of care, understanding disease diagnosis 
        and prognosis, evaluating treatment options, and developing a 
        plan of care, and documenting the treatment plan.
    (c) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section for the 5-fiscal-year period 
beginning with fiscal year 2017 $20,000,000, to remain available until 
expended.

SEC. 9. ADVANCE CARE PLANNING AND PALLIATIVE CARE EDUCATION AND 
              TRAINING.

    (a) In General.--The Secretary of Health and Human Services shall 
award grants to eligible entities to develop and implement programs and 
initiatives to train and educate individuals to provide advance care 
planning, advance illness care, hospice care, and palliative care in 
hospital, hospice, home, community, and long-term care settings.
    (b) Eligible Entities.--For purposes of this section, eligible 
entities may be a medical school, a nursing school, a health care 
system, non-profit organization, or other entity the Secretary deems 
appropriate.
    (c) Use of Funds.--Funding under grants awarded under this section 
shall be used--
            (1) to provide training and continuing education to 
        individuals who will provide advance care planning services or 
        palliative care in the hospital, hospice, home, community, and 
        long-term care settings; and
            (2) to develop curricula or teaching materials related to 
        advance care planning or palliative care in such settings.
    (d) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section for the 5-fiscal-year period 
beginning with fiscal year 2017 $20,000,000, to remain available until 
expended.

SEC. 10. ADVANCE CARE PLANNING ADVISORY COUNCIL.

    (a) Establishment.--Not later than 180 days after the date of the 
enactment of this Act, the Secretary of Health and Human Services (in 
this section referred to as the ``Secretary'') shall establish within 
the Office of the Secretary an advisory committee to be known as the 
Advance Care Planning Advisory Council (in this section referred to as 
the ``Council'').
    (b) Duties.--
            (1) Mission.--The Council shall advise the Secretary 
        regarding the compilation, development, and dissemination of 
        resources for individuals facing advanced and terminal illness.
            (2) Responsibilities.--Responsibilities of the council 
        include the following:
                    (A) Ensuring that resources provided contain non-
                biased information about the range of options available 
                to individuals with advance and terminal illness, 
                including information about conventional, curative 
                treatments, palliative care, and hospice care.
                    (B) Developing strategies for increasing public 
                understanding about advanced illness and the important 
                role advance care planning can play in documenting an 
                individual's wishes for medical care for loved ones in 
                the event that individual cannot communicate the 
                individual's his or her wishes.
                    (C) Compiling information for dissemination 
                regarding existing advance care planning models 
                including POLST, MOLST, advance directives, and 
                healthcare proxies.
                    (D) Promoting interagency coordination and 
                minimizing overlap regarding advance care planning, 
                including opportunities to coordinate efforts between 
                the Federal agencies and external stakeholders.
                    (E) Identifying and evaluating cross-cutting issues 
                such as perinatal end-of-life care and advance care 
                planning access issues.
    (c) Membership.--
            (1) In general.--The Council shall be composed of up to 15 
        members appointed by the Secretary from among qualified 
        individuals who are not officers or employees of the Federal 
        Government.
            (2) Groups.--The members of the Council shall include the 
        following:
                    (A) At least 3 members with clinical training and 
                an expertise in advanced illness or end-of-life care.
                    (B) At least 3 members from patient and family 
                advocacy groups.
                    (C) At least 3 members from religious or spiritual 
                organizations.
                    (D) Other members from interested stakeholder 
                groups with a proven expertise in chronic, advanced, 
                and end-of-life care.
    (d) Applicability of FACA.--The Council shall be treated as an 
advisory committee subject to the Federal Advisory Committee Act (5 
U.S.C. App.).
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