[Congressional Bills 114th Congress]
[From the U.S. Government Publishing Office]
[S. 2961 Introduced in Senate (IS)]

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114th CONGRESS
  2d Session
                                S. 2961

                      To improve end-of-life care.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                              May 19, 2016

 Mr. Blumenthal (for himself and Mrs. Capito) 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.
              TITLE II--REPORTS, RESEARCH, AND EVALUATIONS

Sec. 201. Demonstration projects for use of telemedicine services in 
                            advance care planning.
Sec. 202. Study and report by the Secretary regarding the establishment 
                            and implementation of a national uniform 
                            policy on advance directives.
Sec. 203. 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 end-of-life care, 
        clarification of related values and goals, and embodiment of 
        preferences 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) 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.)
            (4) 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.
            (5) 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.
            (6) 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.
            (7) 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.
            (8) Medicaid.--The term ``Medicaid'' means the program 
        established under title XIX of the Social Security Act (42 
        U.S.C. 1396 et seq.).
            (9) Medicare.--The term ``Medicare'' means the program 
        established under title XVIII of the Social Security Act (42 
        U.S.C. 1395 et seq.).
            (10) 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.
            (11) 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, 
        or individual in a similar position, as designated by the 
        Secretary.
            (12) 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 guidelines 
        provided by the Secretary.

SEC. 102. NATIONAL PUBLIC EDUCATION CAMPAIGN.

    (a) National Public Education Campaign.--
            (1) In general.--Not later than January 1, 2017, the 
        Secretary, acting through the Director of the Centers for 
        Disease Control and Prevention and in consultation with public 
        and private entities, as the Secretary determines appropriate, 
        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) may--
                    (A) employ the use of various media, including 
                regularly 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 communicate 
                their health care goals and wishes through a variety of 
                means, including the use of readily available legal and 
                medical 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; 
                and
                    (H) encourage individuals to speak with qualified 
                health care professionals about their options and 
                intentions for end-of-life care.
            (3) Evaluation.--Not later than July 1 2019, 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.
    (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, 2018, 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 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 may include content, tools, and 
resources necessary to do the following:
            (1) Inform qualified health care providers about the 
        advance directive requirements under the health care programs 
        described in subsection (a) and other State and Federal laws 
        and regulations related to advance care planning.
            (2) Educate providers 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, including oral directives; 
                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.
            (6) Assist qualified health care providers' understanding 
        of 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 dying patients 
        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 that require a minimum 
amount of end-of-life training as a requirement for obtaining a degree 
from such entity.
    (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 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.

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

    (a) In General.--The Secretary, acting through the Administrator of 
the Agency for Healthcare Research and Quality (in this section 
referred to as the ``Administrator'') 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 Administrator, 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 
        Administrator, and shall be patient-oriented.
            (3) The Administrator shall ensure that reporting 
        requirements related to such measures 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.
            (4) Not later than--
                    (A) April 1, 2017, the Secretary shall disseminate 
                the reporting requirements to all affected providers 
                and provide for a 60-day period for public comment; and
                    (B) April 1, 2018, 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, 2018, the Secretary, 
acting through the Director of Health Resources and Services 
Administration, shall approve existing and develop, in consultation 
with qualified health care providers, other professionals as the 
Secretary determines appropriate, and State boards of medicine and 
nursing, new curricula on advance care planning and end-of-life care 
for continuing education that States may adopt for qualified health 
care providers.
    (b) Content.--The continuing education curriculum developed 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.

              TITLE II--REPORTS, RESEARCH, AND EVALUATIONS

SEC. 201. DEMONSTRATION PROJECTS FOR USE OF TELEMEDICINE SERVICES IN 
              ADVANCE CARE PLANNING.

    (a) In General.--Not later than July 1, 2019, the Secretary shall 
establish a demonstration program to reimburse eligible entities for 
costs associated with the use of telemedicine services (including 
equipment and connection costs) to provide advance care planning 
through telemedicine consultations with geographically distant 
providers and their patients.
    (b) Duration.--The demonstration project under this section shall 
be conducted for at least a 3-year period.
    (c) Report.--Not later than March 15, 2017, the Secretary shall, 
using quantitative and qualitative research methods, submit a report to 
Congress on the status of telemedicine programs, including information 
that identifies--
            (1) the telehealth services for which payment can be made, 
        as of the date of the enactment of this Act, under the fee-for-
        service program under parts A and B of title XVIII of the 
        Social Security Act;
            (2) the telehealth services for which payment can be made, 
        as of such date, under private health insurance plans;
            (3) with respect to services identified under paragraph (2) 
        but not under paragraph (1), ways in which payment for such 
        services might be incorporated into such fee-for-service 
        program (including any recommendations for ways to accomplish 
        this incorporation); and
            (4) any legal or regulatory challenges to expanding 
        telehealth services, and any promising solutions to such 
        challenges.
    (d) Definitions.--For purposes of this section:
            (1) The term ``eligible entity'' means an academic medical 
        center, a medical school, a State health department, a State 
        medical association, a multi-State taskforce, a hospital, a 
        home health agency, or a health system or coalition of 
        stakeholders capable of administering a program for orders 
        regarding life-sustaining treatment for a State or locality.
            (2) The term ``geographically distant'' has the meaning 
        given that term by the Secretary for purposes of conducting the 
        demonstration program established under this section.
            (3) The term ``telemedicine services'' means a service or 
        consultation provided via telecommunication equipment that 
        allows an eligible entity to exchange or discuss medical 
        information with a patient (including the family caregiver of 
        the patient if the patient agrees) or a qualified health care 
        provider at a separate location through real-time 
        videoconferencing, or a similar format, for the purpose of 
        providing health care diagnosis and treatment.
    (e) Authorization of Appropriations.--There are authorized to be 
appropriated to the Secretary such sums as may be necessary to carry 
out this section. Any funds made available under this section shall be 
used to supplement, not supplant, other Federal, State, and local 
funding provided for telemedicine services.

SEC. 202. 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) may include issues concerning--
                    (A) family satisfaction that a patient's wishes, as 
                stated in the patient's advance directive, were carried 
                out;
                    (B) the 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 the Uniform 
Law Commissioners, and other interested parties.

SEC. 203. 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) 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 unwanted by the patient or 
family of the patient.
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