[Congressional Record Volume 148, Number 108 (Thursday, August 1, 2002)]
[Senate]
[Pages S7920-S7926]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. ROCKEFELLER (for himself, Ms. Collins, and Mr. Wyden):
  S. 2857. A bill to amend titles XVIII and XIX of the Social Security 
Act to improve the requirements regarding advance directives in order 
to ensure that an individual's health care decisions are complied with, 
and for other purposes; to the Committee on Finance.
  Mr. ROCKEFELLER. Mr President, I am extremely pleased to be joined by 
my colleagues, Senator Collins and Senator Wyden, in introducing the 
Advanced Directives and Compassionate Care Act of 2002.
  The end of life is a difficult time for individuals and their 
families. A complex web of emotional, legal, medical, and spiritual 
demands magnify the pain and turmoil already being experienced. Loss of 
control can result in depression and confusion, sometimes even 
hastening death. And, too often, a lifetime's dignity can be stripped 
away in a person's final months, leaving their survivors an inheritance 
of sadness and regret.
  The Advanced Directives and Compassionate Care Act will help families 
and individuals avoid this bitter legacy, by helping maintain greater 
control of their final months. It gives patients greater information 
and power in determining treatment and hospice options. The legislation 
addresses legal issues that often arise at the end-of-life, and makes 
it more certain that advanced directives, such as ``living wills'' will 
be followed. It promotes the hospice-based care that most terminally 
ill patients prefer. Most important, it gives people a better chance to 
maintain their dignity in their final hours. I urge that the Senate 
take up this vital and compassionate legislation this year, and that we 
ensure it's passage before we return home this fall.
  According to a 1999 National Hospice and Palliative Care Organization 
survey, Americans are hesitant to talk with their elderly parents about 
how they would like to be cared for at the end of life. This same study 
showed that less than twenty-five percent of Americans have put into 
writing instructions for how we'd like to be cared for personally at 
the end of our lives. Many health care providers overlook the equally 
important issue of providing adequate and appropriate care such as 
relief of pain, or family support services to those who are at the end 
of life. In addition, there is great variation among State laws with 
respect to advanced directives.
  Our legislation takes real and tangible steps toward improving the 
practices and care that affect our citizens when they are facing death 
or the real possibility of death.
  First, and perhaps most important, the Compassionate Care Act gives 
patients greater power to control their

[[Page S7921]]

final days, by directly addressing the improvement of advanced 
directives. In my home state, a 2000 survey showed that three-quarters 
of West Virginians would prefer to die at home, yet nearly 60 percent 
of all deaths occur in a hospital. West Virginia has perhaps the most 
progressive state laws with regard to living wills and power of 
attorney, yet only one-third of those surveyed have either. These 
figures are unacceptable--people need to have a greater say in their 
own destiny.
  Currently, state laws on the execution of advance directives vary 
greatly. Too often, this means a serious problem when the patient's 
wishes about their medical care are ignored--even when family members 
attest to their validity--because they moved to another state after 
creating the directive, but before or at the time that care is needed. 
Most of the differences that cause one state not to honor an advance 
directive created in another state are technical in nature--for 
example, one state requires two witnesses while another only one. This 
variance should not deny a person the type of care desired. Only a 
federal portability statute can address this problem.
  Under our legislation, an advance directive valid in the state in 
which it is executed would be honored in any other state in which it 
may be presented. In addition, the Secretary of Health and Human 
Services would be required to gather information and consult with 
experts about the feasibility and desirability of creating a uniform 
advance directive for all Medicare and Medicaid beneficiaries, and 
possibly others, in the United States, as well as study such issues as 
the provision of adequate palliative care. A uniform advance directive 
would enable people to designate the kind of care they wish to receive 
at the end of their lives in a way that is easily recognizable and 
understood by everyone.
  In 1990, this body passed bipartisan legislation entitled the Patient 
Self-Determination Act. That legislation required hospitals, and other 
health care facilities participating in the Medicare and Medicaid 
programs to provide every adult receiving medical care with written 
information regarding the patient's involvement with their own 
treatment decisions. The Compassionate Care Act builds on this Act, and 
the thinking behind it, to improve the quality of care and the quality 
of life for terminally ill patients.
  Our bill builds on the Patient Self-Determination Act, improving the 
type and amount of information available by ensuring that a person 
entering a hospital, nursing home, or other health care facility is 
helped by a knowledgeable person to create a new advance directive or 
discuss an existing one. The patient's own needs, desires, and values 
must be the basis of decision-making and, whenever possible, the 
patient's family and/or friends should be part of the conversation. 
Further, the bill requires that if a person has an advance directive it 
be placed prominently in the medical record where all doctors and 
nurses involved in the patient's care can clearly see it. Finally, 
under the Compassionate Care Act, a 24-hour, toll-free hotline that 
provides consumers with information on advance directives, end-of-life 
care decision-making, and hospice care would be established.
  Second, our legislation would require the Secretary of Health and 
Human Services to develop outcome standards and other measures for 
evaluating the quality of end-of-life care including the 
appropriateness of care and ease of access to high quality care. There 
are currently too few measures or standards available to assess the 
quality of care provided to Medicare, Medicaid and S-CHIP beneficiaries 
with terminal conditions. There are also significant variations in 
available medical care for patients at the end-of-life based on 
geographic area, ethnic group and alternative models of care.
  Third, this legislation would authorize demonstration projects to 
develop new and innovative approaches to improving end-of-life care and 
pain management for Medicare, Medicaid and S-CHIP beneficiaries. At 
least one demonstration would focus particularly on pediatric end-of-
life care. Priorities include adequate pain management for terminally 
ill patients--40-80 percent of terminally ill patients say they do not 
receive adequate treatment for their pain; treatment of pediatric 
illnesses--28 thousand children die of chronic illness each year, but 
fewer than 10 percent receive hospice care; and treatment of Medicare 
beneficiaries in hospice care.
  Finally, to help improve communication between federal agencies and 
experts in the fields of hospice, end-of-life, and palliative care, the 
legislation establishes a 15 member End-of-Life Care Advisory Board 
consisting of end-of-life care providers, consumers, professional and 
resource-based groups, and policy/advocacy organizations. Recently, the 
Centers for Medicare and Medicaid Services has made a concerted effort 
to improve its involvement in the area of end-of-life care. The 
Advisory Board is designed to further assist the Secretary and the 
Centers for Medicare and Medicaid Services in the evaluation of and 
decisions relating to adequate end-of-life care. In addition, it would 
utilize the reports mandated in this bill to create its own evaluation 
of the field and propose recommendations for legislative and 
administrative actions to improve end-of-life care in America.
  Mr. President, death is a hard subject to talk about. It's hard to 
think about--and especially hard to plan for. I know this personally, 
as many of my colleagues may as well, from dealing with the loss of a 
family member to a prolonged illness. Too often discussion about end-
of-life care and adequate pain management focuses around physician 
assisted suicide. The fact is that this quality end-of-life care--
helping the dying and their families who want better, more 
compassionate care--is what we should be talking about, and what our 
legislation does.
  This legislation has been endorsed by the National Hospice and 
Palliative Care Association, Partnership for Caring, The American Bar 
Association, Americans for Better Care of the Dying, and the American 
Academy of Pediatrics. I ask unanimous consent that several of the 
letters of support from these organizations and the full text of the 
legislation be included in the Record at the conclusion of my remarks.
  There being no objection, the additional material was ordered to be 
printed in the Record, as follows:

                                S. 2857

       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 
     Planning and Compassionate Care Act of 2002''.
       (b) Table of Contents.--The table of contents of this Act 
     is as follows:

Sec. 1. Short title; table of contents.
Sec. 2. Development of standards to assess end-of-life care.
Sec. 3. Study and report by the Secretary of Health and Human Services 
              regarding the establishment and implementation of a 
              national uniform policy on advance directives.
Sec. 4. Improvement of policies related to the use of advance 
              directives.
Sec. 5. National information hotline for end-of-life decisionmaking and 
              hospice care.
Sec. 6. Demonstration project for innovative and new approaches to end-
              of-life care for medicare, medicaid, and SCHIP 
              beneficiaries.
Sec. 7. Establishment of End-of-Life Care Advisory Board.

     SEC. 2. DEVELOPMENT OF STANDARDS TO ASSESS END-OF-LIFE CARE.

       (a) In General.--The Secretary of Health and Human 
     Services, in consultation with the Administrator of the 
     Centers for Medicare & Medicaid Services, the Director of the 
     National Institutes of Health, the Administrator of the 
     Agency for Health Care Policy and Research, and the End-of-
     Life Care Advisory Board (established under section 7), shall 
     develop outcome standards and measures to--
       (1) evaluate the performance of health care programs and 
     projects that provide end-of-life care to individuals, 
     including the quality of the care provided by such programs 
     and projects; and
       (2) assess the access to, and utilization of, such programs 
     and projects, including differences in such access and 
     utilization in rural and urban areas and for minority 
     populations.
       (b) Report to Congress.--Not later than 2 years after the 
     date of enactment of this Act, the Secretary of Health and 
     Human Services shall submit to Congress a report on the 
     outcome standards and measures developed under subsection 
     (a), together with recommendations for such legislation and 
     administrative actions as the Secretary considers 
     appropriate.

[[Page S7922]]

     SEC. 3. STUDY AND REPORT BY THE SECRETARY OF HEALTH AND HUMAN 
                   SERVICES REGARDING THE ESTABLISHMENT AND 
                   IMPLEMENTATION OF A NATIONAL UNIFORM POLICY ON 
                   ADVANCE DIRECTIVES.

       (a) Study.--
       (1) In general.--The Secretary of Health and Human Services 
     shall conduct a thorough study of all matters relating to the 
     establishment and implementation of a national uniform policy 
     on advance directives for individuals receiving items and 
     services under titles XVIII and XIX of the Social Security 
     Act (42 U.S.C. 1395 et seq.; 1396 et seq.).
       (2) Matters studied.--The matters studied by the Secretary 
     of Health and Human Services under paragraph (1) shall 
     include issues concerning--
       (A) family satisfaction that a patient's wishes, as stated 
     in the patient's advance directive, were carried out;
       (B) the portability of advance directives, including cases 
     involving the transfer of an individual from 1 health care 
     setting to another;
       (C) immunity from civil liability and criminal 
     responsibility for health care providers that follow the 
     instructions in an individual's advance directive that was 
     validly executed in, and consistent with the laws of, the 
     State in which it was executed;
       (D) conditions under which an advance directive is 
     operative;
       (E) revocation of an advance directive by an individual;
       (F) the criteria used by States for determining that an 
     individual has a terminal condition;
       (G) surrogate decisionmaking regarding end-of-life care;
       (H) the provision of adequate palliative care (as defined 
     in paragraph (3)), including pain management; and
       (I) adequate and timely referrals to hospice care programs.
       (3) Palliative care.--For purposes of paragraph (2)(H), the 
     term ``palliative care'' means interdisciplinary care for 
     individuals with a life-threatening illness or injury 
     relating to pain and symptom management and psychological, 
     social, and spiritual needs and that seeks to improve the 
     quality of life for the individual and the individual's 
     family.
       (b) Report to Congress.--Not later than 18 months after the 
     date of enactment of this Act, the Secretary of Health and 
     Human Services 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 of Health and 
     Human Services shall consult with the End-of-Life Care 
     Advisory Board (established under section 7), the Uniform Law 
     Commissioners, and other interested parties.

     SEC. 4. IMPROVEMENT OF POLICIES RELATED TO THE USE 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, 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) An advance directive validly executed outside of 
     the State in which such advance directive is presented by an 
     adult individual to a provider of services, a Medicare+Choice 
     organization, or a prepaid or eligible organization shall be 
     given the same effect by that provider or organization as an 
     advance directive validly executed under the law of the State 
     in which it is presented would be given effect.
       ``(B)(i) The definition of an advanced directive shall also 
     include actual knowledge of instructions made while an 
     individual was able to express the wishes of such individual 
     with regard to health care.
       ``(ii) For purposes of clause (i), the term ``actual 
     knowledge'' means the possession of information of an 
     individual's wishes communicated to the health care provider 
     orally or in writing by the individual, the individual's 
     medical power of attorney representative, the individual's 
     health care surrogate, or other individuals resulting in the 
     health care provider's personal cognizance of these wishes. 
     Other forms of imputed knowledge are not actual knowledge.
       ``(C) 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, 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) An advance directive validly executed outside of 
     the State in which such advance directive is presented by an 
     adult individual to a provider or organization shall be given 
     the same effect by that provider or organization as an 
     advance directive validly executed under the law of the State 
     in which it is presented would be given effect.
       ``(B)(i) The definition of an advanced directive shall also 
     include actual knowledge of instructions made while an 
     individual was able to express the wishes of such individual 
     with regard to health care.
       ``(ii) For purposes of clause (i), the term ``actual 
     knowledge'' means the possession of information of an 
     individual's wishes communicated to the health care provider 
     orally or in writing by the individual, the individual's 
     medical power of attorney representative, the individual's 
     health care surrogate, or other individuals resulting in the 
     health care provider's personal cognizance of these wishes. 
     Other forms of imputed knowledge are not actual knowledge.
       ``(C) 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) Study and Report Regarding Implementation.--
       (1) Study.--The Secretary of Health and Human Services 
     shall conduct a study regarding the implementation of the 
     amendments made by subsections (a) and (b).
       (2) Report.--Not later than 18 months after the date of 
     enactment of this Act, the Secretary of Health and Human 
     Services shall submit to Congress a report on the study 
     conducted under paragraph (1), together with recommendations 
     for such legislation and administrative actions as the 
     Secretary considers appropriate.
       (d) 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. NATIONAL INFORMATION HOTLINE FOR END-OF-LIFE 
                   DECISIONMAKING AND HOSPICE CARE.

       The Secretary of Health and Human Services, acting through 
     the Administrator of the Centers for Medicare & Medicaid 
     Services, shall operate directly, or by grant, contract, or 
     interagency agreement, out of funds otherwise appropriated to 
     the Secretary, a clearinghouse and a 24-hour toll-free 
     telephone hotline in order to provide consumer information 
     about advance directives (as defined in section 1866(f)(3) of 
     the Social Security Act (42 U.S.C. 1395cc(f)(3)), as amended 
     by section 4(a)), end-of-life decisionmaking, and available 
     end-of-life and hospice care services. In carrying out the 
     preceding sentence, the Administrator may designate an 
     existing clearinghouse and 24-hour toll-free telephone 
     hotline or, if no such entity is appropriate, may establish a 
     new clearinghouse and a 24-hour toll-free telephone hotline.

[[Page S7923]]

     SEC. 6. DEMONSTRATION PROJECT FOR INNOVATIVE AND NEW 
                   APPROACHES TO END-OF-LIFE CARE FOR MEDICARE, 
                   MEDICAID, AND SCHIP BENEFICIARIES.

       (a) Establishment.--
       (1) In general.--The Secretary, acting through the 
     Administrator of the Centers for Medicare & Medicaid 
     Services, shall conduct a demonstration project under which 
     the Secretary contracts with entities operating programs in 
     order to develop new and innovative approaches to providing 
     end-of-life care to medicare beneficiaries, medicaid 
     beneficiaries, and SCHIP beneficiaries.
       (2) Application.--Any entity seeking to participate in the 
     demonstration project shall submit to the Secretary an 
     application in such form and manner as the Secretary may 
     require.
       (3) Duration.--The authority of the Secretary to conduct 
     the demonstration project shall terminate at the end of the 
     5-year period beginning on the date the Secretary implements 
     the demonstration project.
       (b) Selection Criteria.--
       (1) In general.--Subject to paragraphs (2) and (3), in 
     selecting entities to participate in the demonstration 
     project, the Secretary shall select entities that will allow 
     for programs to be conducted in a variety of States, in an 
     array of care settings, and that reflect--
       (A) a balance between urban and rural settings;
       (B) cultural diversity; and
       (C) various modes of medical care and insurance, such as 
     fee-for-service, preferred provider organizations, health 
     maintenance organizations, hospice care, home care services, 
     long-term care, pediatric care, and integrated delivery 
     systems.
       (2) Preferences.--The Secretary shall give preference to 
     entities operating programs that--
       (A) will serve medicare beneficiaries, medicaid 
     beneficiaries, or SCHIP beneficiaries who are dying of 
     illnesses that are most prevalent under the medicare program, 
     the medicaid program, or SCHIP, respectively; and
       (B) appear capable of sustained service and broad 
     replication at a reasonable cost within commonly available 
     organizational structures.
       (3) Selection of program that provides pediatric end-of-
     life care.--The Secretary shall ensure that at least 1 of the 
     entities selected to participate in the demonstration project 
     operates a program that provides pediatric end-of-life care.
       (c) Evaluation of Programs.--
       (1) In general.--Each program operated by an entity under 
     the demonstration project shall be evaluated at such regular 
     intervals as the Secretary determines are appropriate.
       (2) Use of private entities to conduct evaluations.--The 
     Secretary, in consultation with the End-of-Life Care Advisory 
     Board (established under section 7), shall contract with 1 or 
     more private entities to coordinate and conduct the 
     evaluations under paragraph (1). Such a contract may not be 
     awarded to an entity selected to participate in the 
     demonstration project.
       (3) Requirements for evaluations.--
       (A) Use of outcome measures and standards.--In coordinating 
     and conducting an evaluation of a program conducted under the 
     demonstration project, an entity shall use the outcome 
     standards and measures required to be developed under section 
     2 as soon as those standards and measures are available.
       (B) Elements of evaluation.--In addition to the use of the 
     outcome standards and measures under subparagraph (A), an 
     evaluation of a program conducted under the demonstration 
     project shall include the following:
       (i) A comparison of the quality of care provided by, and of 
     the outcomes for medicare beneficiaries, medicaid 
     beneficiaries, and SCHIP beneficiaries, and the families of 
     such beneficiaries enrolled in, the program being evaluated 
     to the quality of care and outcomes for such individuals that 
     would have resulted if care had been provided under existing 
     delivery systems.
       (ii) An analysis of how ongoing measures of quality and 
     accountability for improvement and excellence could be 
     incorporated into the program being evaluated.
       (iii) A comparison of the costs of the care provided to 
     medicare beneficiaries, medicaid beneficiaries, and SCHIP 
     beneficiaries under the program being evaluated to the costs 
     of such care that would have been incurred under the medicare 
     program, the medicaid program, and SCHIP if such program had 
     not been conducted.
       (iv) An analysis of whether the program being evaluated 
     implements practices or procedures that result in improved 
     patient outcomes, resource utilization, or both.
       (v) An analysis of--

       (I) the population served by the program being evaluated; 
     and
       (II) how accurately that population reflects the total 
     number of medicare beneficiaries, medicaid beneficiaries, and 
     SCHIP beneficiaries residing in the area who are in need of 
     services offered by such program.

       (vi) An analysis of the eligibility requirements and 
     enrollment procedures for the program being evaluated.
       (vii) An analysis of the services provided to beneficiaries 
     enrolled in the program being evaluated and the utilization 
     rates for such services.
       (viii) An analysis of the structure for the provision of 
     specific services under the program being evaluated.
       (ix) An analysis of the costs of providing specific 
     services under the program being evaluated.
       (x) An analysis of any procedures for offering medicare 
     beneficiaries, medicaid beneficiaries, and SCHIP 
     beneficiaries enrolled in the program being evaluated a 
     choice of services and how the program responds to the 
     preferences of such beneficiaries.
       (xi) An analysis of the quality of care provided to, and of 
     the outcomes for, medicare beneficiaries, medicaid 
     beneficiaries, and SCHIP beneficiaries, and the families of 
     such beneficiaries, that are enrolled in the program being 
     evaluated.
       (xii) An analysis of any ethical, cultural, or legal 
     concerns--

       (I) regarding the program being evaluated; and
       (II) with the replication of such program in other 
     settings.

       (xiii) An analysis of any changes to regulations or of any 
     additional funding that would result in more efficient 
     procedures or improved outcomes under the program being 
     evaluated.
       (d) Waiver Authority.--The Secretary may waive compliance 
     with any of the requirements of titles XI, XVIII, XIX, and 
     XXI of the Social Security Act (42 U.S.C. 1301 et seq.; 1395 
     et seq.; 1396 et seq.; 1397aa et seq.) which, if applied, 
     would prevent the demonstration project carried out under 
     this section from effectively achieving the purpose of such 
     project.
       (e) Reports to Congress.--
       (1) Annual reports by secretary.--
       (A) In general.--Beginning 1 year after the date of 
     enactment of this Act, and annually thereafter, the Secretary 
     shall submit to Congress a report on the demonstration 
     project and on the quality of end-of-life care under the 
     medicare program, the medicaid program, and SCHIP, together 
     with recommendations for such legislation and administrative 
     actions as the Secretary considers appropriate.
       (B) Summary of recent studies.--A report submitted under 
     subparagraph (A) shall include a summary of any recent 
     studies and advice from experts in the health care field 
     regarding the ethical, cultural, and legal issues that may 
     arise when attempting to improve the health care system to 
     meet the needs of individuals with serious and eventually 
     terminal conditions.
       (C) Continuation or replication of demonstration 
     projects.--The first report submitted under subparagraph (A) 
     after the 3-year anniversary of the date the Secretary 
     implements the demonstration project shall include 
     recommendations regarding whether such demonstration project 
     should be continued beyond the period described in subsection 
     (a)(3) and whether broad replication of any of the programs 
     conducted under the demonstration project should be 
     initiated.
       (2) Report by end-of-life care advisory board on 
     demonstration project.--
       (A) In general.--Not later than 2 years after the 
     conclusion of the demonstration project, the End-of-Life 
     Advisory Board shall submit a report to the Secretary and 
     Congress on such project.
       (B) Contents.--The report submitted under subparagraph (A) 
     shall contain--
       (i) an evaluation of the effectiveness of the demonstration 
     project; and
       (ii) recommendations for such legislation and 
     administrative actions as the Board considers appropriate.
       (f) Funding.--There are appropriated such sums as are 
     necessary for conducting the demonstration project and for 
     preparing and submitting the reports required under 
     subsection (e)(1).
       (g) Definitions.--In this section:
       (1) Demonstration project.--The term ``demonstration 
     project'' means the demonstration project conducted under 
     this section.
       (2) Medicaid beneficiaries.--The term ``medicaid 
     beneficiaries'' means individuals who are enrolled in the 
     State medicaid program.
       (3) Medicaid program.--The term ``medicaid program'' means 
     the health care program under title XIX of the Social 
     Security Act (42 U.S.C. 1395 et seq.).
       (4) Medicare beneficiaries.--The term ``medicare 
     beneficiaries'' means individuals who are entitled to 
     benefits under part A or enrolled for benefits under part B 
     of the medicare program.
       (5) Medicare program.--The term ``medicare program'' means 
     the health care program under title XVIII of the Social 
     Security Act (42 U.S.C. 1395 et seq.).
       (6) SCHIP beneficiary.--The term ``SCHIP beneficiary'' 
     means an individual who is enrolled in SCHIP.
       (7) SCHIP.--The term ``SCHIP'' means the State children's 
     health insurance program under title XXI of the Social 
     Security Act (42 U.S.C. 1397aa et seq.).
       (8) Secretary.--The term ``Secretary'' means the Secretary 
     of Health and Human Services.

     SEC. 7. ESTABLISHMENT OF END-OF-LIFE CARE ADVISORY BOARD.

       (a) Establishment.--There is established within the 
     Department of Health and Human Services an End-of-Life Care 
     Advisory Board (in this section referred to as the 
     ``Board'').
       (b) Structure and Membership.--
       (1) In general.--The Board shall be composed of 15 members 
     who shall be appointed by the Secretary of Health and Human 
     Services (in this section referred to as the ``Secretary'').

[[Page S7924]]

       (2) Required representation.--The Secretary shall ensure 
     that the following groups, organizations, and associations 
     are represented in the membership of the Board:
       (A) An end-of-life consumer advocacy organization.
       (B) A senior citizen advocacy organization.
       (C) A physician-based hospice or palliative care 
     organization.
       (D) A nurse-based hospice or palliative care organization.
       (E) A hospice or palliative care provider organization.
       (F) A hospice or palliative care representative that serves 
     the veterans population.
       (G) A physician-based medical association.
       (H) A physician-based pediatric medical association.
       (I) A home health-based nurses association.
       (J) A hospital-based or health system-based palliative care 
     group.
       (K) A children-based or family-based hospice resource 
     group.
       (L) A cancer pain management resource group.
       (M) A cancer research and policy advocacy group.
       (N) An end-of-life care policy advocacy group.
       (O) An interdisciplinary end-of-life care academic 
     institution.
       (3) Ethnic diversity requirement.--The Secretary shall 
     ensure that the members of the Board appointed under 
     paragraph (1) represent the ethnic diversity of the United 
     States.
       (4) Prohibition.--No individual who is a Federal officer or 
     employee may serve as a member of the Board.
       (5) Terms of appointment.--Each member of the Board shall 
     serve for a term determined appropriate by the Secretary.
       (6) Chairperson.--The Secretary shall designate a member of 
     the Board as chairperson.
       (c) Meetings.--The Board shall meet at the call of the 
     chairperson but not less often than every 3 months.
       (d) Duties.--
       (1) In general.--The Board shall advise the Secretary on 
     all matters related to the furnishing of end-of-life care to 
     individuals.
       (2) Specific duties.--The specific duties of the Board are 
     as follows:
       (A) Consulting.--The Board shall consult with the Secretary 
     regarding--
       (i) the development of the outcome standards and measures 
     under section 2;
       (ii) conducting the study and submitting the report under 
     section 3; and
       (iii) the selection of private entities to conduct 
     evaluations pursuant to section 6(c)(2).
       (B) Report on demonstration project.--The Board shall 
     submit the report required under section 6(e)(2).
       (e) Members To Serve Without Compensation.--
       (1) In general.--All members of the Board shall serve on 
     the Board without compensation for such service.
       (2) Travel expenses.--The members of the Board shall be 
     allowed travel expenses, including per diem in lieu of 
     subsistence, at rates authorized for employees of agencies 
     under subchapter I of chapter 57 of title 5, United States 
     Code, while away from their homes or regular places of 
     business in the performance of services for the Board.
       (f) Staff.--
       (1) In general.--The chairperson of the Board may, without 
     regard to the civil service laws and regulations, appoint and 
     terminate an executive director and such other additional 
     personnel as may be necessary to enable the Board to perform 
     its duties. The employment of an executive director shall be 
     subject to confirmation by the Board.
       (2) Compensation.--The chairperson of the Board may fix the 
     compensation of the executive director and other personnel 
     without regard to chapter 51 and subchapter III of chapter 53 
     of title 5, United States Code, relating to classification of 
     positions and General Schedule pay rates, except that the 
     rate of pay for the executive director and other personnel 
     may not exceed the rate payable for level V of the Executive 
     Schedule under section 5316 of such title.
       (3) Personnel as federal employees.--
       (A) In general.--The executive director and any personnel 
     of the Board who are employees shall be employees under 
     section 2105 of title 5, United States Code, for purposes of 
     chapters 63, 81, 83, 84, 85, 87, 89, and 90 of that title.
       (B) Members of board.--Subparagraph (A) shall not be 
     construed to apply to members of the Board.
       (g) Detail of Government Employees.--Any Federal Government 
     employee may be detailed to the Board without additional 
     reimbursement (other than the employee' regular 
     compensation), and such detail shall be without interruption 
     or loss of civil service status or privilege.
       (h) Procurement of Temporary and Intermittent Services.--
     The chairperson of the Board may procure temporary and 
     intermittent services under section 3109(b) of title 5, 
     United States Code, at rates for individuals which do not 
     exceed the daily equivalent of the annual rate of basic pay 
     prescribed for level V of the Executive Schedule under 
     section 5316 of such title.
       (i) Federal Advisory Committee Act.--Section 14 of the 
     Federal Advisory Committee Act (5 U.S.C. App.) shall not 
     apply to the Board.
       (j) Termination.--The Board shall terminate 90 days after 
     the date on which the Board submits the report under section 
     6(e)(2).
       (k) Funding.--Funding for the operation of the Board shall 
     be from amounts otherwise appropriated to the Department of 
     Health and Human Services.
                                  ____

                                   National Hospice and Palliative


                                            Care Organization,

                                    Alexandria, VA, July 31, 2002.
     Hon. John D. Rockefeller,
     U.S. Senate,
     Washington, DC.
       Dear Senator Rockefeller: The National Hospice and 
     Palliative Care Organization (NHPCO), the nation's largest 
     and oldest organization dedicated to advancing the philosophy 
     and practice of hospice care, appreciates the opportunity to 
     continue to work with you on your proposed draft legislation, 
     ``Advance Planning and Compassionate Care Act of 2002''.
       We applaud your efforts to address an important health care 
     issue and appreciate your willingness to work with the NHPCO 
     to incorporate changes relative to hospice into the 
     legislation. Specifically, the NHPCO supports your efforts to 
     make advance directives portable among the states, to study 
     end of life care needs of the general population and to 
     authorize Medicare demonstration projects on end of life 
     care.
       We look forward to working with you on your legislation.
           Sincerely,
                                                     Galen Miller,
     Executive Vice President.
                                  ____



                                  Partnership for Caring Inc.,

                                    Washington, DC, July 24, 2002.
     Senator John D. Rockefeller IV,
     U.S. Senate,
     Washington, DC.
       Dear Senator Rockefeller: On behalf of Partnership for 
     Caring: America's Voices for the Dying I am writing to 
     endorse and support the passage of the ``Compassionate Care 
     and Advance Planning Act of 2002'' Our Board of Directors, 
     staff and membership are grateful for and applaud your 
     continuing leadership and deep commitment to improving care 
     for people nearing the end of their lives.
       Partnership for Caring is a national, nonprofit 
     organization representing consumers of end-of-life care and 
     their families. Our mission is to encourage individuals to 
     think about and plan for the type of care they would like to 
     receive at the end of their journey and to discuss those 
     plans with their families, friends and physicians. 
     Partnership makes available to the public Advance Directives 
     specific to each state's law and educational materials on 
     many aspects of end-of-life care and conversation. We also 
     provide assistance via our 24 hour, toll-free help line, as 
     well as advocacy to improve palliative and end-of-life care.
       The health care systems and reimbursement mechanisms in 
     America today are the focus of a great deal of scrutiny, 
     especially the Medicare, Medicaid and S-CHIP programs. 
     Unfortunately, the critically important health care 
     components of palliative and end-of-life care too often are 
     overlooked. We thank you and the cosponsors of the 
     legislation for raising the visibility of this essential 
     aspect of care and for proposing immediate improvements in 
     our health systems as well as research and demonstration 
     projects that will inform us about better ways to care for 
     people in the last phase of their lives.
       We are particularly pleased about the proposal to create an 
     End-of-Life Care Advisory Board to work with CMS and HHS. 
     This provision alone will help make certain that any federal 
     government proposals to reform Medicare, Medicaid or S-CHIP 
     will have the informed contributions of experts in the fields 
     of palliative and hospice medicine. Such a Board is vitally 
     important if these programs and other health care laws and 
     regulations are to adequately address the needs of people who 
     are dying. The Board's diversity will help assure that the 
     unique concerns of minorities, children and young adults, 
     various religious and ethnic groups are heard. Consumers and 
     providers of end-of-life care will both have a voice.
       The inclusion of the S-CHIP program in legislation dealing 
     with end-of-life care deserves special thanks. While no one 
     likes to think about children dying, about 53,000 children 
     die each year. Research on caring for terminally ill 
     pediatric patients is minimal and dying children have been 
     woefully underserved in the areas of pain management and 
     hospice care. Mandating that at least one demonstration 
     project focus on pediatric issues is step in the right 
     direction and will benefit thousands of children whose young 
     lives will end too soon.
       Medicare beneficiaries have a compelling reason to seek 
     improvements in end-of-life care: everyone who becomes a 
     Medicare beneficiary will die a Medicare beneficiary. Today 
     27% of all Medicare expenditures are spent caring for people 
     in the last year of their lives, frequently on costly, 
     unnecessary procedures in hospitals and nursing homes. 
     Although hospice care currently accounts for only 1.3% of all 
     Medicare expenditures that percentage will grow as the baby-
     boomers age and seek a qualitatively different end-of-life 
     scenario than the ones many of them watched their parents and 
     grandparents endure. The demonstration projects authorized by 
     your legislation will allow us to learn more about our 
     choices and become better educated consumers of care.
       As you will know, caring for an elderly parent, a sick 
     spouse, or a dying child, can

[[Page S7925]]

     be emotionally, economically, and physically draining under 
     any circumstance. As a consumer based organization, 
     Partnership for Caring knows first hand how much worse it is 
     for those who have never discussed with their loved ones 
     their wishes for end-of-life care, who do not know what 
     resources are available, or who are unaware of palliative and 
     hospice care and how to access these services. Health care 
     providers, too, are often caught having to make decisions or 
     talk to family members without benefit of knowing their 
     patients' wishes or alternative services in their 
     communities. ``The Compassionate Care and Advance Planning 
     Act of 2002'' will help educate the pubic and providers as 
     well as encourage conversations and advance planning. 
     Insuring that each of us can receive the kind of care we 
     would want for ourselves and our loved ones as we near death 
     should be a priority concern as these programs look to the 
     future.
       Again, our thanks to you and all of the senators who join 
     in supporting this bill. Insuring that each of us can receive 
     the kind of care we want for ourselves and our loved ones as 
     we near death should be a national priority as we look to the 
     future of health care. We at Partnership for Caring will be 
     working with you and our partner organizations to assure 
     passage of the ``Compassionate Care Act'' and, more 
     importantly, to assure better quality care for all our loved 
     ones and for ourselves.
           Sincerely,
                                              Karen Orloff Kaplan,
     President and CEO.
                                  ____

                                          American Bar Association


                                  Governmental Affairs Office,

                                    Washington, DC, July 29, 2002.
     Hon. John D. Rockefeller IV,
     U.S. Senate, Hart Office Building,
     Washington, DC.
       Dear Senator Rockefeller: On behalf of the American Bar 
     Association, I am writing to commend you and your co-sponsors 
     for introducing the Advance Planning and Compassionate Care 
     Act of 2002. This legislation takes several important steps 
     beyond the 1990 Patient Self-Determination Act (PSDA) which 
     introduced the term ``Advance Directive'' to the American 
     vernacular. The American Bar Association supported the 
     enactment of the PSDA and has continued to encourage greater 
     access to the tools of advance planning, greater uniformity 
     and portability of advance directives, and greater 
     responsiveness to the needs of patients in health care 
     systems at all stages of life, including end-of-life care.
       The Advance Planning and Compassionate Care Act takes 
     several modest but vital steps towards these goals. Under its 
     provisions there will be an opportunity to discuss advance 
     directives with an appropriately trained individual upon 
     admission to a health care facility, which will help 
     transform the existing paper-disclosure requirement into a 
     meaningful vehicle for discussion and understanding. This 
     will do much to combat the misperception that advance 
     planning means merely signing a form. Good advance planning 
     is, in essence, good communication, not mere form-drafting.
       The portability and research mandates concerning advance 
     directives are seriously needed to move public policy beyond 
     the current Balkanization of legal formalities that 
     characterizes current advance-directive law. In addition, the 
     mandate to examine the feasibility and desirability of 
     creating a uniform advance directive will generate much-
     needed fresh thinking on the strategies that may best 
     encourage advance planning. Sadly, twelve years after the 
     PSDA, the majority of adults still avoid the necessary task 
     of planning for end-of-life decision-making.
       The National Information Hotline will provide a valuable 
     consumer tool for information about advance directives and 
     end-of-life care options. Finally, the mandates for standards 
     development, evaluation and demonstration projects, as well 
     as coverage provisions, will help fill the inexcusable chasm 
     in current knowledge, regulation, and financing of end-of-
     life care under Medicare and Medicaid. Historically, end-of-
     life decision-making and quality of care have been relegated 
     to the shadows of health and long-term care policy. This Act 
     will help the public and policy makers understand the issues 
     and options in the light of day.
       The ABA strongly supports this legislation. We commend your 
     leadership in seeking to enhance patient autonomy and end-of-
     life care, and we stand ready to be a resource in these 
     efforts.
           Sincerely,
                                                  Robert D. Evans.
  Ms. COLLINS. Mr. President, I am pleased to be joining my colleague 
from West Virginia, Senator Rockefeller, in introducing the Advance 
Planning and Compassionate Care Act, which is intended to improve the 
way we care for people at the end of their lives.
  Noted health economist, Uwe Reinhardt, once observed that ``Americans 
are the only people on earth who believe that death is negotiable.'' 
Advancements in medicine, public health, and technology have enabled 
more and more of us to live longer and healthier lives. However, when 
medical treatment can no longer promise a continuation of life, 
patients and their families should not have to fear that the process of 
dying will be marked by preventable pain, avoidable distress, or care 
that is inconsistent with their values or wishes.
  The fact is, dying is a universal experience, and it is time to re-
examine how we approach death and dying and how we care for people at 
the end of their lives. Clearly, there is more that we can do to 
relieve suffering, respect personal choice and dignity, and provide 
opportunities for people to find meaning and comfort at life's 
conclusion.
  Unfortunately, most Medicare patients and their physicians do not 
currently discuss death or routinely make advance plans for end-of-life 
care. As a result, about one-fourth of Medicare funds are now spent on 
care at the end of life that is geared toward expensive, high-
technology interventions and ``rescue'' care. While most Americans say 
they would prefer to die at home, studies show that almost 80 percent 
die in institutions where they may be in pain, and where they are 
subjected to high-tech treatments that merely prolong suffering.
  Moreover, according to a Dartmouth study conducted by Dr. Jack 
Wennberg, where a patient lives has a direct impact on how that patient 
dies. The study found that the amount of medical treatment Americans 
receive in their final months varies tremendously in the different 
parts of the country, and it concluded that the determination of 
whether or not an older patient dies in the hospital probably has more 
to do with the supply of hospital beds than the patient's needs or 
preference.
  The Advance Planning and Compassionate Care Act is intended to help 
us improve the way our health care system serves patients at the end of 
their lives. Among other provisions, the bill makes a number of changes 
to the Patient Self-Determination Act of 1990 to facilitate appropriate 
discussions and individual autonomy in making difficult discussions 
about end-of-life care. For instance, the legislation requires that 
every Medicare beneficiary receiving care in a hospital or nursing 
facility be given the opportunity to discuss end-of-life care and the 
preparation of an advanced directive with an appropriately trained 
professional within the institution. The legislation also requires that 
if a patient has an advanced directive, it must be displayed in a 
prominent place in the medical record so that all the doctors and 
nurses can clearly see it.
  In addition, the legislation authorizes the Department of Health and 
Human Services to study end-of-life issues and also to develop 
demonstration projects to develop models for end-of-life care for 
Medicare, Medicaid, and State Child Health Insurance Program, S-CHIP, 
patients. The Institute of Medicine recently released a report that 
concluded that we need to improve palliative and end-of-life care for 
children with terminal illnesses. According to the report, far too 
often children with fatal or potentially fatal conditions and their 
families fail to receive competent, compassionate, and consistent care 
that meets their physical, emotional, and spiritual needs. Our 
legislation therefore requires that at least one of these 
demonstrations focus particularly on pediatric end-of-life care.
  Finally, the legislation establishes a telephone hotline to provide 
consumer information and advice concerning advance directives, end-of-
life issues, and medical decisionmaking and also establishes an End-of-
Life Care Advisory Board to assist the Secretary of Health and Human 
Services in developing outcome standards and measures to evaluate end-
of-life care programs and projects.
  The legislation we are introducing today is particularly important in 
light of the debate on physician-assisted suicide. The desire for 
assisted suicide is generally driven by concerns about the quality of 
care for the terminally ill; by the fear of prolonged pain, loss of 
dignity and emotional strain on family members. Such worries would 
recede and support for assisted suicide would evaporate if better 
palliative care and more effective pain management were widely 
available.
  Patients and their families should be able to trust that the care 
they receive at the end of their lives is not only of high quality, but 
also that it respects their desires for peace, autonomy, and

[[Page S7926]]

dignity. The Advanced Planning and Compassionate Care Act that Senator 
Rockefeller and I are introducing today will give us some of the tools 
that we need to improve care of the dying in this country, and I urge 
all of my colleagues to join us as cosponsors.
                                 ______