[Congressional Record Volume 151, Number 14 (Thursday, February 10, 2005)]
[Senate]
[Pages S1274-S1277]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. NELSON of Florida (for himself, Mr. Lugar, and Mr. 
        Rockefeller):
  S. 347. 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 operations 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

[[Page S1275]]

purposes; to the Committee on Finance.
  Mr. NELSON of Florida. Mr. President, I am pleased to be joined by my 
colleagues and cosponsors Senators Jay Rockefeller and Richard Lugar as 
we introduce the Advance Directives Improvement and Education Act of 
2005. Senators Rockefeller and Collins, along with Senator Wyden, 
sponsored legislation with similar goals in the past and have provided 
invaluable support and counsel in drafting the bill we introduce today.
  The Advance Directives Improvement and Education Act of 2005 has a 
simple purpose: to encourage all adults in America, especially those 65 
and older, to think about, talk about and write down their wishes for 
medical care near the end of life should they become unable to make 
decisions for themselves. Advance directives, which include a living 
will stating the individual's preferences for care, and a power of 
attorney for health care, are critical documents that each of us should 
have. The goal is clear, but reaching it requires that we educate the 
public about the importance of advance directives, offer opportunities 
for discussion of the issues, and reinforce the requirement that health 
care providers honor patients' wishes. This bill is designed to do just 
that.
  Americans are afraid of death. We don't like to think about it, talk 
about it, or plan for it. And yet, we will all face it. Not only our 
own deaths, but our parents, siblings, friends, and sometimes, 
tragically, children. Today, most Americans face death unprepared. 
Family members frequently end up making critical medical decisions for 
incapacitated patients, yet they, too, are unprepared. Only 15-20 
percent of adults have advance directives. Among this group, many have 
not discussed the contents of these important documents with their 
families or even the person named as the health care proxy.
  It is time to bring this discussion into the mainstream. Too much is 
at stake to continue to deny our mortality. You all know about the 
tragic situation going on in Florida with Terri Schiavo. Here is a 
young woman in a persistent vegetative state who is the subject of a 
debate about her treatment between her husband and her parents, a 
debate that has been a court case and a legislative quagmire. Why? 
Because she didn't write down what type of care she would want in the 
event an accident, illness or other medical condition caused her to be 
in an incapacitated state. She is young and didn't think about death or 
dying. If she had an advance directive that made her wishes clear and 
named a health care proxy to make decisions for her should she be 
unable to do so for herself, the treatment debate might continue, but 
there would be no question as to who could decide. The Supreme Court 
has clearly affirmed that competent adults have the right to refuse 
unwanted medical treatment, Washington v. Glucksburg and Vacco v. 
Quill, 1997, but it also stressed that advance directives are a means 
of safeguarding that right should adults become incapable of deciding 
for themselves.
  Fortunately, situations like Ms. Schiavo's are rare. Of the 2.5 
million people who die each year 83 percent are Medicare beneficiaries. 
In fact, 27 percent of Medicare expenditures cover care in the last 
year of life. Remember, everyone who enrolls in Medicare will die on 
Medicare. The Advance Directives Improvement and Education Act 
encourages all Medicare beneficiaries to prepare advance directives by 
providing a free physician office visit for the purpose of discussing 
end-of-life care choices and other issues around medical decision-
making in a time of incapacitation. Physicians will be reimbursed for 
spending time with their patients to help them understand situations in 
which an advance directive would be useful, medical options, the 
Medicare hospice benefit and other concerns. The conversation will also 
enable physicians to learn about their patients' wishes, fears, 
religious beliefs, and life experiences that might influence their 
medical care wishes. These are important aspects of a physician-patient 
relationship that are too often unaddressed.
  Another part of our bill will provide funds for the Department of 
Health and Human Services to conduct a public education campaign to 
raise awareness of the importance of planning for care near the end of 
life. This campaign would explain what advance directives are, where 
they are available, what questions need to be asked and answered, and 
what to do with the executed documents. HHS, directly or through 
grants, would also establish an information clearinghouse where 
consumers could receive state-specific information and consumer-
friendly documents and publications.
  State-specific information is needed because in addition to the 
federal Patients Self Determination Act passed in 1990, most states 
also have enacted advance directive laws. Because the state laws 
differ, some states may be reluctant to honor advance directives that 
were executed in another state. The bill we introduce today contains 
language that would make all advance directives ``portable,'' that is, 
useful from one state to another. As long as the documents were 
lawfully executed in the state of origin, they must be accepted and 
honored in the state in which they are presented, unless to do so would 
violate state law.
  All of the provisions in the Advance Directives Improvement and 
Education Act of 2005 are there for one reason: to increase the number 
of people in the United States who have advance directives, who have 
discussed their wishes with their physicians and families, and who have 
given copies of the directives to their loved ones, health care 
providers, and legal representatives.
  This new Medicare benefit and education campaign will also lead to a 
reduction in litigation costs. By encouraging advance directives, cases 
like Ms. Schiavo's would be less frequent; therefore the long and 
costly litigation surrounding these unfortunate situations would be 
reduced.
  Senators Rockefeller, Lugar and I all believe that as our Medicare 
population grows and life expectancy lengthens, improving care near the 
end of life must be a priority. Helping people complete these critical 
documents is an essential part of making the final journey as 
meaningful and peaceful as possible. In addition, there are growing 
numbers of health care providers, nonprofit organizations and consumer 
advocates who recognize the need for change. New palliative care 
programs, pain protocols and hospice services are being instituted in 
facilities around the country.
  This body is a legislative institution not a medical one--with the 
exceptions of the distinguished Majority Leader and Senator Coburn, of 
course. We cannot legislate good medical care or compassion. What we 
can do, what I hope we will do, is to enact this bill so that the 
American public can participate in improving end-of-life care--first, 
by filling out their own advance directives and talking to their 
families about them; and by raising their voices to demand that our 
health care systems honor their wishes and improve the way they care 
for people who are near the end of life. If we can do that, we will 
have done a great deal.
  I ask unanimous consent that the text of the bill be printed in the 
Record.
  There being no objection, the bill was ordered to be printed in the 
Record, as follows:

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

     SECTION 1. SHORT TITLE; TABLE OF CONTENTS.

       (a) Short Title.--This Act may be cited as the ``Advance 
     Directives Improvement and Education Act of 2005''.
       (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

[[Page S1276]]

     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. 1395 l(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. 1395 l(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, 
     2006.

     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.''.

[[Page S1277]]

       (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 (42 U.S.C. 241 
     et seq.) 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 of the United States shall submit to Congress a 
     report on the study conducted under paragraph (1) together 
     with recommendations for such legislation and administrative 
     action as the Comptroller General of the United States 
     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 of the United 
     States shall submit to Congress a report on the study 
     conducted under paragraph (1) together with recommendations 
     for such legislation and administrative action as the 
     Comptroller General of the United States 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 of the United 
     States shall submit to Congress a report on the study 
     conducted under paragraph (1) together with recommendations 
     for such legislation and administrative action as the 
     Comptroller General of the United States determines to be 
     appropriate.
                                 ______