A bill to amend titles XVIII and XIX of the Social Security Act and title III of the Public Health Service Act to improve access to information about individuals' health care options and legal rights for care near the end of life, to promote advance care planning and decisionmaking so that individuals' wishes are known should they become unable to speak for themselves, to engage health care providers in disseminating information about and assisting in the preparation of advance directives, which include living wills and durable powers of attorney for health care, and for other purposes.

Summary: Advance Directives Improvement and Education Act of 2004 - Amends title XVIII (Medicare) of the Social Security Act, as amended by the Medicare Prescription Drug, Improvement, and Modernization Act of 2003, to provide for Medicare coverage of end-of-life planning consultations. Requires a service provider, Medicare Advantage organization, or prepaid or eligible organization to give effect to an advance directive executed outside the State in which it is presented, even one that does not appear to meet the formalities of execution, form, or language required by the State in which it is presented, to the same extent as such provider or organization would give effect to an advanced directive that meets such requirements. Permits a provider or organization to decline to honor such a directive if the provider or organization can reasonably demonstrate that it is not an authentic expression of the individual's wishes concerning his or her health care. Makes such advance directive requirements applicable under Medicaid, title XIX of the Social Security Act.

Amends the Public Health Service Act to provide for grant programs to increase awareness of advance directive planning issues. Directs the Secretary to conduct a national public education campaign to: (1) raise public awareness of the importance of planning for care near the end of life; (2) improve the public's understanding of the various situations in which individuals may find themselves if they become unable to express their health care wishes; (3) explain the need for readily available legal documents that express an individual's wishes, through advance directives (including living wills, comfort care orders, and durable powers of attorney for health care); and (4) educate the public about the availability of hospice care and palliative care.

Directs the Secretary to provide for the establishment of a national, toll-free, information clearinghouse as well as clearinghouses that the public may access to find out about State-specific information regarding advance directive and end-of-life decisions.



Requires General Accounting Office studies and reports on end-of-life planning issues.

SECTION 1. SHORT TITLE; TABLE OF CONTENTS.

    (a) Short Title.--This Act may be cited as the ``Advance Directives 
Improvement and Education Act of 2004''.
    (b) Table of Contents.--The table of contents of this Act is as 
follows:

Sec. 1. Short title; table of contents.
Sec. 2. Findings and purposes.
Sec. 3. Medicare coverage of end-of-life planning consultations.
Sec. 4. Improvement of policies related to the use and portability of 
                            advance directives.
Sec. 5. Increasing awareness of the importance of end-of-life planning.
Sec. 6. GAO studies and reports on end-of-life planning issues.

SEC. 2. FINDINGS AND PURPOSES.

    (a) Findings.--Congress makes the following findings:
            (1) Every year 2,500,000 people die in the United States. 
        Eighty percent of those people die in institutions such as 
        hospitals, nursing homes, and other facilities. Chronic 
        illnesses, such as cancer and heart disease, account for 2 out 
        of every 3 deaths.
            (2) In January 2004, a study published in the Journal of 
        the American Medical Association concluded that many people 
        dying in institutions have unmet medical, psychological, and 
        spiritual needs. Moreover, family members of decedents who 
        received care at home with hospice services were more likely to 
        report a favorable dying experience.
            (3) In 1997, the Supreme Court of the United States, in its 
        decisions in Washington v. Glucksberg and Vacco v. Quill, 
        reaffirmed the constitutional right of competent adults to 
        refuse unwanted medical treatment. In those cases, the Court 
        stressed the use of advance directives as a means of 
        safeguarding that right should those adults become incapable of 
        deciding for themselves.
            (4) A study published in 2002 estimated that the overall 
        prevalence of advance directives is between 15 and 20 percent 
        of the general population, despite the passage of the Patient 
        Self-Determination Act in 1990, which requires that health care 
        providers tell patients about advance directives.
            (5) Competent adults should complete advance care plans 
        stipulating their health care decisions in the event that they 
        become unable to speak for themselves. Through the execution of 
        advance directives, including living wills and durable powers 
        of attorney for health care according to the laws of the State 
        in which they reside, individuals can protect their right to 
        express their wishes and have them respected.
    (b) Purposes.--The purposes of this Act are to improve access to 
information about individuals' health care options and legal rights for 
care near the end of life, to promote advance care planning and 
decisionmaking so that individuals' wishes are known should they become 
unable to speak for themselves, to engage health care providers in 
disseminating information about and assisting in the preparation of 
advance directives, which include living wills and durable powers of 
attorney for health care, and for other purposes.

SEC. 3. MEDICARE COVERAGE OF END-OF-LIFE PLANNING CONSULTATIONS.

    (a) Coverage.--Section 1861(s)(2) of the Social Security Act (42 
U.S.C. 1395x(s)(2)), as amended by section 642(a) of the Medicare 
Prescription Drug, Improvement, and Modernization Act of 2003 (Public 
Law 108-173; 117 Stat. 2322), is amended--
            (1) in subparagraph (Y), by striking ``and'' at the end;
            (2) in subparagraph (Z), by inserting ``and'' at the end; 
        and
            (3) by adding at the end the following new subparagraph:
            ``(AA) end-of-life planning consultations (as defined in 
        subsection (bbb));''.
    (b) Services Described.--Section 1861 of the Social Security Act 
(42 U.S.C. 1395x), as amended by section 706(b) of the Medicare 
Prescription Drug, Improvement, and Modernization Act of 2003 (Public 
Law 108-173; 117 Stat. 2339), is amended by adding at the end the 
following new subsection:

                  ``End-of-Life Planning Consultation

    ``(bbb) The term `end-of-life planning consultation' means 
physicians' services--
            ``(1) consisting of a consultation between the physician 
        and an individual regarding--
                    ``(A) the importance of preparing advance 
                directives in case an injury or illness causes the 
                individual to be unable to make health care decisions;
                    ``(B) the situations in which an advance directive 
                is likely to be relied upon;
                    ``(C) the reasons that the development of a 
                comprehensive end-of-life plan is beneficial and the 
                reasons that such a plan should be updated periodically 
                as the health of the individual changes;
                    ``(D) the identification of resources that an 
                individual may use to determine the requirements of the 
                State in which such individual resides so that the 
                treatment wishes of that individual will be carried out 
                if the individual is unable to communicate those 
                wishes, including requirements regarding the 
                designation of a surrogate decision maker (health care 
                proxy); and
                    ``(E) whether or not the physician is willing to 
                follow the individual's wishes as expressed in an 
                advance directive; and
            ``(2) that are furnished to an individual on an annual 
        basis or immediately following any major change in an 
        individual's health condition that would warrant such a 
        consultation (whichever comes first).''.
    (c) Waiver of Deductible and Coinsurance.--
            (1) Deductible.--The first sentence of section 1833(b) of 
        the Social Security Act (42 U.S.C. 1395l(b)) is amended--
                    (A) by striking ``and'' before ``(6)''; and
                    (B) by inserting before the period at the end the 
                following: ``, and (7) such deductible shall not apply 
                with respect to an end-of-life planning consultation 
                (as defined in section 1861(bbb))''.
            (2) Coinsurance.--Section 1833(a)(1) of the Social Security 
        Act (42 U.S.C. 1395l(a)(1)) is amended--
                    (A) in clause (N), by inserting ``(or 100 percent 
                in the case of an end-of-life planning consultation, as 
                defined in section 1861(bbb))'' after ``80 percent''; 
                and
                    (B) in clause (O), by inserting ``(or 100 percent 
                in the case of an end-of-life planning consultation, as 
                defined in section 1861(bbb))'' after ``80 percent''.
    (d) Payment for Physicians' Services.--Section 1848(j)(3) of the 
Social Security Act (42 U.S.C. 1395w-4(j)(3)), as amended by section 
611(c) of the Medicare Prescription Drug, Improvement, and 
Modernization Act of 2003 (Public Law 108-173; 117 Stat. 2304), is 
amended by inserting ``(2)(AA),'' after ``(2)(W),''.
    (e) Frequency Limitation.--Section 1862(a)(1) of the Social 
Security Act (42 U.S.C. 1395y(a)(1)), as amended by section 613(c) of 
the Medicare Prescription Drug, Improvement, and Modernization Act of 
2003 (Public Law 108-173; 117 Stat. 2306), is amended--
            (1) by striking ``and'' at the end of subparagraph (L);
            (2) by striking the semicolon at the end of subparagraph 
        (M) and inserting ``, and''; and
            (3) by adding at the end the following new subparagraph:
            ``(N) in the case of end-of-life planning consultations (as 
        defined in section 1861(bbb)), which are performed more 
        frequently than is covered under paragraph (2) of such 
        section;''.
    (f) Effective Date.--The amendments made by this section shall 
apply to services furnished on or after January 1, 2005.

SEC. 4. IMPROVEMENT OF POLICIES RELATED TO THE USE AND PORTABILITY OF 
              ADVANCE DIRECTIVES.

    (a) Medicare.--Section 1866(f) of the Social Security Act (42 
U.S.C. 1395cc(f)) is amended--
            (1) in paragraph (1)--
                    (A) in subparagraph (B), by inserting ``and if 
                presented by the individual (or on behalf of the 
                individual), to include the content of such advance 
                directive in a prominent part of such record'' before 
                the semicolon at the end;
                    (B) in subparagraph (D), by striking ``and'' after 
                the semicolon at the end;
                    (C) in subparagraph (E), by striking the period at 
                the end and inserting ``; and''; and
                    (D) by inserting after subparagraph (E) the 
                following new subparagraph:
            ``(F) to provide each individual with the opportunity to 
        discuss issues relating to the information provided to that 
individual pursuant to subparagraph (A) with an appropriately trained 
professional.'';
            (2) in paragraph (3), by striking ``a written'' and 
        inserting ``an''; and
            (3) by adding at the end the following new paragraph:
    ``(5)(A) In addition to the requirements of paragraph (1), a 
provider of services, Medicare Advantage organization, or prepaid or 
eligible organization (as the case may be) shall give effect to an 
advance directive executed outside the State in which such directive is 
presented, even one that does not appear to meet the formalities of 
execution, form, or language required by the State in which it is 
presented to the same extent as such provider or organization would 
give effect to an advance directive that meets such requirements, 
except that a provider or organization may decline to honor such a 
directive if the provider or organization can reasonably demonstrate 
that it is not an authentic expression of the individual's wishes 
concerning his or her health care. Nothing in this paragraph shall be 
construed to authorize the administration of medical treatment 
otherwise prohibited by the laws of the State in which the directive is 
presented.
    ``(B) The provisions of this paragraph shall preempt any State law 
to the extent such law is inconsistent with such provisions. The 
provisions of this paragraph shall not preempt any State law that 
provides for greater portability, more deference to a patient's wishes, 
or more latitude in determining a patient's wishes.''.
    (b) Medicaid.--Section 1902(w) of the Social Security Act (42 
U.S.C. 1396a(w)) is amended--
            (1) in paragraph (1)--
                    (A) in subparagraph (B)--
                            (i) by striking ``in the individual's 
                        medical record'' and inserting ``in a prominent 
                        part of the individual's current medical 
                        record''; and
                            (ii) by inserting ``and if presented by the 
                        individual (or on behalf of the individual), to 
                        include the content of such advance directive 
                        in a prominent part of such record'' before the 
                        semicolon at the end;
                    (B) in subparagraph (D), by striking ``and'' after 
                the semicolon at the end;
                    (C) in subparagraph (E), by striking the period at 
                the end and inserting ``; and''; and
                    (D) by inserting after subparagraph (E) the 
                following new subparagraph:
            ``(F) to provide each individual with the opportunity to 
        discuss issues relating to the information provided to that 
        individual pursuant to subparagraph (A) with an appropriately 
        trained professional.'';
            (2) in paragraph (4), by striking ``a written'' and 
        inserting ``an''; and
            (3) by adding at the end the following paragraph:
    ``(6)(A) In addition to the requirements of paragraph (1), a 
provider or organization (as the case may be) shall give effect to an 
advance directive executed outside the State in which such directive is 
presented, even one that does not appear to meet the formalities of 
execution, form, or language required by the State in which it is 
presented to the same extent as such provider or organization would 
give effect to an advance directive that meets such requirements, 
except that a provider or organization may decline to honor such a 
directive if the provider or organization can reasonably demonstrate 
that it is not an authentic expression of the individual's wishes 
concerning his or her health care. Nothing in this paragraph shall be 
construed to authorize the administration of medical treatment 
otherwise prohibited by the laws of the State in which the directive is 
presented.
    ``(B) The provisions of this paragraph shall preempt any State law 
to the extent such law is inconsistent with such provisions. The 
provisions of this paragraph shall not preempt any State law that 
provides for greater portability, more deference to a patient's wishes, 
or more latitude in determining a patient's wishes.''.
    (c) Effective Dates.--
            (1) In general.--Subject to paragraph (2), the amendments 
        made by subsections (a) and (b) shall apply to provider 
        agreements and contracts entered into, renewed, or extended 
        under title XVIII of the Social Security Act (42 U.S.C. 1395 et 
        seq.), and to State plans under title XIX of such Act (42 
        U.S.C. 1396 et seq.), on or after such date as the Secretary of 
        Health and Human Services specifies, but in no case may such 
        date be later than 1 year after the date of enactment of this 
        Act.
            (2) Extension of effective date for state law amendment.--
        In the case of a State plan under title XIX of the Social 
        Security Act (42 U.S.C. 1396 et seq.) which the Secretary of 
        Health and Human Services determines requires State legislation 
        in order for the plan to meet the additional requirements 
        imposed by the amendments made by subsection (b), the State 
        plan shall not be regarded as failing to comply with the 
        requirements of such title solely on the basis of its failure 
        to meet these additional requirements before the first day of 
        the first calendar quarter beginning after the close of the 
        first regular session of the State legislature that begins 
        after the date of enactment of this Act. For purposes of the 
        previous sentence, in the case of a State that has a 2-year 
        legislative session, each year of the session is considered to 
        be a separate regular session of the State legislature.

SEC. 5. INCREASING AWARENESS OF THE IMPORTANCE OF END-OF-LIFE PLANNING.

    Title III of the Public Health Service Act is amended by adding at 
the end the following new part:

``PART R--PROGRAMS TO INCREASE AWARENESS OF ADVANCE DIRECTIVE PLANNING 
                                 ISSUES

``SEC. 399Z-1. ADVANCE DIRECTIVE EDUCATION CAMPAIGNS AND INFORMATION 
              CLEARINGHOUSES.

    ``(a) Advance Directive Education Campaign.--The Secretary shall, 
directly or through grants awarded under subsection (c), conduct a 
national public education campaign--
            ``(1) to raise public awareness of the importance of 
        planning for care near the end of life;
            ``(2) to improve the public's understanding of the various 
        situations in which individuals may find themselves if they 
        become unable to express their health care wishes;
            ``(3) to explain the need for readily available legal 
        documents that express an individual's wishes, through advance 
        directives (including living wills, comfort care orders, and 
        durable powers of attorney for health care); and
            ``(4) to educate the public about the availability of 
        hospice care and palliative care.
    ``(b) Information Clearinghouse.--The Secretary, directly or 
through grants awarded under subsection (c), shall provide for the 
establishment of a national, toll-free, information clearinghouse as 
well as clearinghouses that the public may access to find out about 
State-specific information regarding advance directive and end-of-life 
decisions.
    ``(c) Grants.--
            ``(1) In general.--The Secretary shall use at least 60 
        percent of the funds appropriated under subsection (d) for the 
        purpose of awarding grants to public or nonprofit private 
        entities (including States or political subdivisions of a 
        State), or a consortium of any of such entities, for the 
        purpose of conducting education campaigns under subsection (a) 
        and establishing information clearinghouses under subsection 
        (b).
            ``(2) Period.--Any grant awarded under paragraph (1) shall 
        be for a period of 3 years.
    ``(d) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section $25,000,000.''.

SEC. 6. GAO STUDIES AND REPORTS ON END-OF-LIFE PLANNING ISSUES.

    (a) Study and Report on Compliance With Advance Directives and 
Other Advance Planning Documents.--
            (1) Study.--The Comptroller General of the United States 
        shall conduct a study on the effectiveness of advance 
        directives in making patients' wishes known and honored by 
        health care providers.
            (2) Report.--Not later than the date that is 18 months 
        after the date of enactment of this Act, the Comptroller 
        General shall submit to Congress a report on this study 
        conducted under paragraph (1) together with recommendations for 
        such legislation and administrative action as the Comptroller 
        General determines to be appropriate.
    (b) 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 implementation of the amendments 
        made by section 3 (relating to medicare coverage of end-of-life 
        planning consultations).
            (2) Report.--Not later than 2 years after the date of 
        enactment of this Act, the Comptroller General shall submit to 
        Congress a report on this study conducted under paragraph (1) 
        together with recommendations for such legislation and 
        administrative action as the Comptroller General determines to 
        be appropriate.
    (c) 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.
            (2) Report.--Not later than 18 months after the date of 
        enactment of this Act, the Comptroller General shall submit to 
        Congress a report on this study conducted under paragraph (1) 
        together with recommendations for such legislation and 
        administrative action as the Comptroller General determines to 
        be appropriate.