[Congressional Record Volume 143, Number 149 (Thursday, October 30, 1997)]
[Senate]
[Pages S11451-S11456]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. ROCKEFELLER (for himself and Ms. Collins):
  S. 1345. A bill to amend titles XVIII and XIX of the Social Security 
Act to expand and clarify 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.


        the advance planning and compassionate care act of 1997

  Mr. ROCKEFELLER. Mr. President, I am extremely pleased to be 
introducing the Advance Planning and Compassionate Care Act of 1997 
with my colleague from Maine, Senator Collins. I have already had the 
great pleasure of working with Senator Collins on legislation earlier 
this year to improve the portability of Medigap insurance policies. We 
were successful in getting a good portion of that legislation enacted 
this year, so I am very pleased to have another opportunity to work 
with Senator Collins on another set of issues that are so important to 
millions of Medicare beneficiaries and the rest of America.

  We introduce this legislation to ask Congress to take action that 
responds directly and humanely to the needs of elderly and others 
during some of their most difficult and often traumatic time of their 
lives. The United States deserves to be extremely proud of the medical 
advances and efforts that have extended our people's life expectancy 
and our ability to overcome disease and medical setbacks. But we need 
to take some additional, tangible steps to also make progress in the 
practices and care that affect our citizens when they ultimately face 
death or the real possibility of death. Our bill provides some of those 
steps.
  While this is a difficult area to discuss, it is a very real area for 
Americans year in and year out. This is legislation designed to respond 
to pressing needs of patients, their family members, and their health 
care providers, and I hope that Congress will adopt these steps in the 
next year.
  In view of the debate this year on physician assisted suicide and 
from my own personal experiences, I have spent considerable time 
delving into the concerns and dilemmas that face patients, their family 
members, and their physicians when confronted with death or the 
possibility of dying. In almost all such difficult situations, people 
are not thinking about physician-assisted suicide. The needs and 
dilemmas that confront them have much more to do with the kind of care 
and information that they need, often desperately.
  The legislation we are introducing today builds on bipartisan 
legislation enacted in 1990, called the Patient Self-Determination Act. 
That legislation was championed by my former colleague from Missouri, 
Senator Danforth. I held a subcommittee hearing on Senator Danforth's 
legislation and it became very clear that the lack of a national policy 
on advance directives was not acceptable. As a result of that bill, 
hospitals, skilled nursing facilities, home health agencies, hospice 
programs, and HMO's participating in the Medicaid and Medicare programs 
must provide every adult receiving medical care with written 
information concerning patient involvement in their own treatment 
decisions. The health care institutions must also document in the 
medical record whether the patient has an advance directive. In 
addition, States were required to write description of their State laws 
concerning advance directives.
  Mr. President, at the time of that bill's enactment, we realized that 
it was only the first step toward increasing public awareness and 
addressing

[[Page S11452]]

some very difficult issues related to end-of-life care. As a result of 
that legislation, a growing number of Americans do have advance 
directives. But recent studies have found that the majority of 
Americans have not discussed end-of-life issues with their families or 
their physicians and have not relayed their treatment preferences 
either verbally or in writing.
  There is also an increasing awareness that physicians and many other 
health care providers are uncomfortable addressing end-of-life issues 
and are even apparently unwilling to respect their patient's 
preferences in some cases. Another complicating factor is the great 
variation that exists among State laws, and the lack of a legal 
requirement that an advance directive written in one State be respected 
in another State.
  Mr. President, the legislation we are introducing today focuses on 
the need to improve end-of-life care for Medicare beneficiaries. It 
addresses the need to develop models of compassionate care and quality 
measures for end-of-life care in the Medicare Program, and it will 
encourage individuals to have more open communication with family 
members and health care providers concerning their preferences for end-
of-life care.
  The first section of the Advance Planning and Compassionate Care Act 
strengthens the previously enacted Patient Self Determination Act in 
the following ways.
  First, it requires that every Medicare beneficiary have the 
opportunity to discuss health care decisionmaking issues with an 
appropriately trained professional, when he or she makes a request. 
This measure would help make sure that patients and their families have 
the ability to discuss and address concerns and issues relating to 
their care, including end-of-life care, with a trained professional. 
Many health care institutions already have teams of providers to 
address difficult health care decisions and some even mediate among 
patients, families, and providers. In smaller institutions, social 
workers, chaplains, nurses, or other trained professional could be made 
available for consultation.
  Second, our bill requires that a person's advance directive be placed 
in a prominent part of the medical record. Often advance directives can 
not even be found in the medical record, making it more difficult for 
providers to respect patients' wishes. It is essential that an 
individual's advance directive be readily available and visible to 
anyone involved in their health care.
  Third, it will assure that an advance directive valid in one State 
will be valid in another State. At present, portability of advance 
directives from State to State is not assured. Such portability can 
only be guaranteed through Federal legislation.

  The second part of our bill directs the Secretary of Health and Human 
Services to advise Congress on an approach to adopting the provisions 
of the Uniform Health Care Decisions Act for Medicare beneficiaries. 
The Uniform Health Care Decisions Act was developed by the Uniform Law 
Commissioners, a group with representation from all States that has 
been in existence for over 100 years. The Uniform Health Care Decisions 
Act includes all the important components of model advance directive 
legislation. A great deal of legal effort went into its development, 
with input by all the States and approval by the American Bar 
Association. Medicare beneficiaries deserve a uniform approach to 
advance directives, especially since many move from one State to 
another while in the Medicare Program. The tremendous variation in 
State laws that currently exists only adds to the confusion of health 
care professionals and their patients.
  Just this month, a study done by Dr. Jack Wennberg at Dartmouth 
University documented the tremendous variation that exists in the 
medical care that Medicare beneficiaries receive in the last few months 
of their lives. This sort of analysis highlights that patient 
preferences have little to do with the sort of care patients receive in 
their final months of life. Where you live determines the sort of 
medical care you will receive more so than what you might prefer.
  The third part of this legislation would encourage the development of 
models for end-of-life care for Medicare beneficiaries who do not 
qualify for the Medicare hospice benefit but still have chronic, 
debilitating and ultimately fatal illnesses. The tremendous advances in 
medicine and medical technology over the past 30 to 50 years have 
resulted in a greatly lengthened life expectancy for Americans, as well 
as vastly improved functioning and quality of life for the elderly and 
those with chronic disease. Many of these advances have been made 
possible by federally financed health care programs, such as the 
Medicare Program that assures access to high quality health care for 
all elderly Americans. Medicare has also funded much of the development 
of technology and a highly skilled physician workforce through support 
of medical education and academic medical centers. These advances have 
also created major dilemmas in addressing terminal or potentially 
terminal disease, as well as a sense of loss of control by many with 
terminal illness.
  I believe it is time for Medicare to help seniors have access to 
compassionate, supportive, and pain free care during prolonged 
illnesses and at the end of life. As we begin to discuss restructuring 
the Medicare Program for the long term, this will be one of my primary 
goals. Our legislation instructs the Department of Health and Human 
Services to develop appropriate quality measures and models of care for 
persons with chronic, debilitating disease, including the very frail 
elderly who will comprise an increasing number of Medicare 
beneficiaries. Our bill also sets up a consumer hotline that can 
provide the American public with information on the legal, medical, and 
ethical issues related to advance directives and medical 
decisionmaking.
  Mr. President, I am learning more and more about the importance of 
educating health care providers and the public that chronic, 
debilitating, terminal disease need not be associated with pain, major 
discomfort, and loss of control. We can control pain and treat 
depression, as well as the other causes of suffering during the dying 
process. We must now apply this knowledge to assure all Americans 
appropriate end-of-life care. And to make sure that Medicare 
beneficiaries are able to receive the most effective medicine to 
control their pain, Medicare's coverage rules would be expanded under 
our bill to include coverage for self-administered pain medications.
  Under current law, Medicare generally does not pay for any outpatient 
prescription drugs. The only pain medication paid for by the Medicare 
Program are those drugs that are administered by a portable pump. The 
pump is covered by Medicare as durable medical equipment and the drugs 
used with that pump are also covered. Our bill would expand coverage to 
include self-administered pain medications, for example oral drugs or 
transdermal patches. These alternatives are as effective in pain relief 
and, most obviously, a much more comfortable way for patients to 
receive their pain medication.
  Mr. President, much also needs to be done to assure that all health 
care providers have the appropriate training to use what is already 
known about supportive care. The public must be educated and empowered 
to discuss these issues with family members as well as their own 
physicians so that each individual's wishes can be respected. More 
research is needed to develop appropriate measures of quality end-of-
life care and incorporate these measures into medical practice in all 
health care settings. And finally, appropriate financial incentives 
must be present within Medicare, especially, to allow the elderly and 
disabled their choice of appropriate care at the end of life. 
Medicare's coverage policy should not be the sole determinate of the 
route that pain medication is administered.
  To conclude, I am proud to offer this legislation with Senator 
Collins. We hope consideration of this bill will be an opportunity to 
take notice of the many constructive steps that can be taken to address 
the needs of patients and family members grappling with great pain and 
medical difficulties. During this time when physician assisted suicide 
obtains so many headlines, we are eager to call on Congress to turn to 
the alternative ways of providing help and relief to seniors and other 
Americans who only are interested in such alternatives.

[[Page S11453]]

  I ask unanimous consent that a summary and a copy of the bill be 
printed in its entirety in the Record.
  There being no objection, the material was ordered to be printed in 
the Record, as follows:

                                S. 1345

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

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Advance Planning and 
     Compassionate Care Act of 1997''.

     SEC. 2. EXPANSION OF ADVANCE DIRECTIVES.

       (a) Medicare.--Section 1866(f) of the Social Security Act 
     (42 U.S.C. 1395cc(f)) (as amended by section 4641 of the 
     Balanced Budget Act of 1997 (Public Law 105-33; 111 Stat. 
     487)) 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;
       (B) in subparagraph (D), by striking ``and'' at the end;
       (C) in subparagraph (E), by striking the period and 
     inserting ``; and''; and
       (D) by inserting after subparagraph (E) the following:
       ``(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.''; and
       (2) by adding at the end the following:
       ``(4)(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 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) Nothing in this paragraph shall be construed to 
     authorize the administration, withholding, or withdrawal of 
     health care unless it is consistent with the laws of the 
     State in which an advance directive is presented.
       ``(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;
       (B) in subparagraph (D), by striking ``and'' at the end;
       (C) in subparagraph (E), by striking the period and 
     inserting ``; and''; and
       (D) by inserting after subparagraph (E) the following:
       ``(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.''; and
       (2) by adding at the end the following:
       ``(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 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) Nothing in this paragraph shall be construed to 
     authorize the administration, withholding, or withdrawal of 
     health care otherwise prohibited by the laws of the State in 
     which an advance directive is presented.
       ``(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) Effective Dates.--
       (1) In general.--Subject to paragraph (2), the amendments 
     made by subsections (a) and (b) shall apply to provider 
     agreements entered into, renewed, or extended under title 
     XVIII of the Social Security Act, and to State plans under 
     title XIX of such Act, on or after such date (not later than 
     1 year after the date of the enactment of this Act) as the 
     Secretary of Health and Human Services specifies.
       (2) Extension of effective date for state law amendment.--
     In the case of a State plan under title XIX of the Social 
     Security Act 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 the 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. 3. STUDY AND RECOMMENDATIONS TO CONGRESS ON ISSUES 
                   RELATING TO ADVANCE DIRECTIVE EXPANSION.

       (a) Study.--The Secretary of Health and Human Services 
     shall conduct a thorough study regarding the implementation 
     of the amendments made by section 2 of this Act.
       (b) Report.--Not later than 18 months after the date of 
     enactment of this Act, the Secretary of Health and Human 
     Services shall submit a report to Congress that contains a 
     detailed statement of the findings and conclusions of the 
     Secretary regarding the study conducted pursuant to 
     subsection (a), together with the Secretary's recommendations 
     for such legislation and administrative actions as the 
     Secretary considers appropriate.

     SEC. 4. STUDY AND LEGISLATIVE PROPOSAL TO CONGRESS.

       (a) Study.--
       (1) In general.--The Secretary of Health and Human Services 
     shall conduct a thorough study of all matters relating to the 
     creation 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 shall include issues 
     concerning--
       (A) the election or refusal of life-sustaining treatment;
       (B) the provision of adequate palliative care including 
     pain management;
       (C) the portability of advance directives, including the 
     cases involving the transfer of an individual from one health 
     care setting to another;
       (D) immunity for health care providers that follow the 
     instructions in an individual's advance directive;
       (E) exemptions for health care providers from following the 
     instructions in an individual's advance directive;
       (F) conditions under which an advance directive is 
     operative;
       (G) revocation of an advance directive by an individual;
       (H) the criteria for determining that an individual is in 
     terminal status; and
       (I) surrogate decision making regarding end of life care.
       (b) Report to Congress.--Not later than 1 year after the 
     date of enactment of this Act, the Secretary of Health and 
     Human Services shall submit a report to Congress that 
     contains a detailed description of the results of the study 
     conducted pursuant to subsection (a).
       (c) Consultation.--In conducting the study and developing 
     the report under this section, the Secretary of Health and 
     Human Services shall consult with physicians and other health 
     care provider groups, consumer groups, the Uniform Law 
     Commissioners, and other interested parties.

     SEC. 5. DEVELOPMENT OF STANDARDS TO ASSESS END-OF-LIFE CARE.

       The Secretary of Health and Human Services, through the 
     Administrator of the Health Care Financing Administration, 
     the Director of the National Institutes of Health, and the 
     Administrator of the Agency for Health Care Policy and 
     Research, shall develop outcome standards and measures to 
     evaluate the performance of health care programs and projects 
     that provide end-of-life care to individuals and the quality 
     of such care.

     SEC. 6. NATIONAL INFORMATION HOTLINE FOR END-OF-LIFE 
                   DECISIONMAKING.

       The Secretary of Health and Human Services, through the 
     Administrator of the Health Care Financing Administration, 
     shall establish and operate directly, or by grant, contract, 
     or interagency agreement, out of funds otherwise appropriated 
     to the Secretary, a clearinghouse and 24-hour toll-free 
     telephone hotline, 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)), and end-of-life 
     decisionmaking.

     SEC. 7. EVALUATION OF AND DEMONSTRATION PROJECTS FOR 
                   INNOVATIVE AND NEW APPROACHES TO END-OF-LIFE 
                   CARE FOR MEDICARE BENEFICIARIES.

       (a) Definitions.--In this section:
       (1) Medicare beneficiaries.--The term ``medicare 
     beneficiaries'' means individuals who are entitled to 
     benefits under part A or eligible for benefits under part B 
     of the medicare program.
       (2) 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.).
       (3) Secretary.--The term ``Secretary'' means the Secretary 
     of Health and Human Services.
       (b) Evaluation of Existing Programs.--
       (1) In general.--The Secretary, through the Administrator 
     of the Health Care Financing Administration, shall conduct 
     ongoing evaluations of innovative health care programs that 
     provide end-of-life care to medicare beneficiaries who are 
     seriously ill or who suffer from a medical condition that is 
     likely to be fatal.
       (2) Requirements.--Evaluations conducted under this 
     subsection shall include the following:

[[Page S11454]]

       (A) Evidence that the evaluated program implements 
     practices or procedures that result in improved patient 
     outcomes, resource utilization, or both.
       (B) A definition of the population served by the program 
     and a determination as to how accurately that population 
     reflects the total medicare beneficiaries in the area who are 
     in need of services offered by the program.
       (C) A description of the eligibility requirements and 
     enrollment procedures for the program.
       (D) A detailed description of the services provided to 
     medicare beneficiaries served by the program and the 
     utilization rates for such services.
       (E) A description of the structure for the provision of 
     specific services.
       (F) A detailed accounting of the costs of providing 
     specific services under the program.
       (G) A description of any procedures for offering medicare 
     beneficiaries a choice of services and how the program 
     responds to the preferences of the medicare beneficiaries 
     served by the program.
       (H) An assessment of the quality of care and of the 
     outcomes for medicare beneficiaries and the families of such 
     beneficiaries served by the program.
       (I) An assessment of any ethical, cultural, or legal 
     concerns regarding the evaluated program and with the 
     replication of such program in other settings.
       (J) Identification of any changes to regulations, or of any 
     additional funding, that would result in more efficient 
     procedures or improved outcomes, for the program.
       (3) External evaluators.--The Secretary shall contract with 
     1 or more external evaluators to coordinate and conduct the 
     evaluations required under this subsection and under 
     subsection (c)(4).
       (4) Use of outcome measures and standards.--An evaluation 
     conducted under this subsection and subsection (c)(4) shall 
     use the outcome standards and measures required to be 
     developed under section 5 as soon as those standards and 
     measures are available.
       (c) Demonstration Projects.--
       (1) Authority.--The Secretary, through the Administrator of 
     the Health Care Financing Administration, shall conduct 
     demonstration projects to develop new and innovative 
     approaches to providing end-of-life care to medicare 
     beneficiaries who are seriously ill or who suffer from a 
     medical condition that is likely to be fatal.
       (2) Application.--Any entity seeking to conduct a 
     demonstration project under this subsection shall submit to 
     the Secretary an application in such form and manner as the 
     Secretary may require.
       (3) Selection criteria.--
       (A) In general.--In selecting entities to conduct 
     demonstration projects under this subsection, the Secretary 
     shall select entities that will allow for demonstration 
     projects to be conducted in a variety of States, in an array 
     of care settings, and that reflect--
       (i) a balance between urban and rural settings;
       (ii) cultural diversity; and
       (iii) 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, and integrated delivery systems.
       (B) Preferences.--The Secretary shall give preference to 
     applications for demonstration projects that--
       (i) will serve medicare beneficiaries who are dying of 
     illnesses that are most prevalent under the medicare program, 
     including cancer, heart failure, chronic obstructive 
     respiratory disease, dementia, stroke, and progressive 
     multifactorial frailty associated with advanced age; and
       (ii) appear capable of sustained service and broad 
     replication at a reasonable cost within commonly available 
     organizational structures.
       (4) Evaluations.--Each demonstration project conducted 
     under this subsection shall be evaluated at such regular 
     intervals as the Secretary determines are appropriate. An 
     evaluation of a project conducted under this subsection shall 
     include the items described in subsection (b)(2) and the 
     following:
       (A) A comparison of the quality of care and of the outcomes 
     for medicare beneficiaries and the families of such 
     beneficiaries served by the demonstration project to the 
     quality of care and outcomes for such individuals that would 
     have resulted if care had been provided under existing 
     delivery systems.
       (B) An analysis of how ongoing measures of quality and 
     accountability for improvement and excellence could be 
     incorporated into the demonstration project.
       (C) A comparison of the costs of the care provided to 
     medicare beneficiaries under the demonstration project to the 
     costs of that care if it had been provided under the medicare 
     program.
       (5) Waiver authority.--The Secretary may waive compliance 
     with any requirement of titles XI, XVIII, and XIX of the 
     Social Security Act (42 U.S.C. 1301 et seq., 1395 et seq., 
     1396 et seq.) which, if applied, would prevent a 
     demonstration project carried out under this subsection from 
     effectively achieving the purpose of such a project.
       (d) Annual Reports to Congress.--
       (1) 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 quality of end-of-
     life care under the medicare program, together with any 
     suggestions for legislation to improve the quality of such 
     care under that program.
       (2) Summary of recent studies.--A report submitted under 
     this subsection 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 fatal 
     illnesses.
       (3) Continuation or replication of demonstration 
     projects.--Beginning 3 years after the date of enactment of 
     this Act, the report required under this subsection shall 
     include recommendations regarding whether the demonstration 
     projects conducted under subsection (c) should be continued 
     and whether broad replication of any of those projects should 
     be initiated.
       (e) Funding.--The Secretary shall provide for the transfer 
     from the Federal Hospital Insurance Trust Fund established 
     under section 1817 of the Social Security Act (42 U.S.C. 
     1395i) of such sums as are necessary for the costs of 
     conducting evaluations under subsection (b), conducting 
     demonstration projects under subsection (c), and preparing 
     and submitting the annual reports required under subsection 
     (d). Amounts may be transferred under the preceding sentence 
     without regard to amounts appropriated in advance in 
     appropriations Acts.

     SEC. 8. MEDICARE COVERAGE OF SELF-ADMINISTERED MEDICATION FOR 
                   CERTAIN PATIENTS WITH CHRONIC PAIN.

       (a) In General.--Section 1861(s)(2) of the Social Security 
     Act (42 U.S.C. 1395x(s)(2)) (as amended by section 4557 of 
     the Balanced Budget Act (Public Law 105-33; 111 Stat. 463)) 
     is amended--
       (1) by striking ``and'' at the end of subparagraph (S);
       (2) in subparagraph (T), by striking the period at the end 
     and inserting ``; and''; and
       (3) by inserting after subparagraph (T) the following:
       ``(U) self-administered drugs which may be dispensed only 
     upon prescription and which are prescribed for the relief of 
     chronic pain in patients with a life-threatening disease or 
     condition;''.
       (b) Effective Date.--The amendments made by subsection (a) 
     shall apply to items and services furnished on or after June 
     1, 1998.
                                  ____


      Advance Planning and Compassionate Care Act of 1997--Summary

       More than 70 percent of the 2 million Americans expected to 
     die this year will be over the age of 65. The Medicare and 
     Medicaid programs pay for the majority of care at the end of 
     life. Dr. Jack Wennberg, health researcher at Dartmouth 
     University, recently documented the tremendous geographic 
     variation that exists in end of life care provided to 
     Medicare beneficiaries. The type of medical care a patient 
     received in their last month of life was driven more by where 
     a person lived than by personal preferences.


                 (1) Better Information and Counseling

       Current law: This bill builds on federal legislation 
     (Patient Self-Determination Act) enacted in 1990 that 
     requires health care facilities to distribute information on 
     advance directives to their patients. Since passage of that 
     legislation, there has been an increase in the number of 
     individuals who have an advance directive but a recent Robert 
     Wood Johnson study found that while 20 percent of 
     hospitalized patients had an advance directive less than half 
     had ever talked with any of their doctors about having a 
     directive and only about one-third had their wishes 
     documented in their medical record. Many people do not 
     understand the importance of discussing their advance 
     directives with family members and their health care 
     provider. In addition, a 1994 survey found that only 5 out of 
     126 medical schools offered a separate, required course in 
     end of life care. Other surveys of doctors and medical 
     residents found little or no experience in discussing care 
     for dying patients.
       Proposal: Improves the type and amount of information 
     available to consumers by making sure that when a person 
     enters a hospital, nursing home, or other health care 
     facility, there is a knowledgeable person available to 
     discuss end of life care planning if requested, so that good 
     decisions--decisions based on the patient's own needs and 
     values--can be made. Requires that if a person has an advance 
     directive it must be placed in a prominent part of the 
     medical record where all the doctors and nurses can clearly 
     see it. Establishes a 24-hour hotline and information 
     clearinghouse to provide consumers with information on end of 
     life decision making.


                 (2) Portability of Advance Directives

       Current law: The specifics of advance directive legislation 
     vary greatly from state to state. Portability from state to 
     state can only be assured through federal legislation.
       Proposal: Ensures that an advance directive valid in one 
     state will be honored in another state, as long as the 
     contents of the advance directive do not conflict with the 
     laws of the state. In addition, requires the Secretary of 
     Health and Human Services to gather information and consult 
     with experts on the possibility of an uniform advance 
     directive for all Medicare beneficiaries, regardless of where 
     they live. An uniform advance directive would enable people 
     to document the kind of care they wish to get at the end of 
     their lives in a way that is easily recognizable and 
     understood by everyone.

[[Page S11455]]

        (3) Measures to Improve the Quality of End of Life Care

       Current Law: There are few quality measures or standards 
     available to assess the quality of care provided to Medicare 
     beneficiaries at the end of their life. The tremendous 
     geographic variation in medical care that currently exists on 
     end of life care reinforces the notion that most people do 
     not receive care driven by quality concerns but rather by the 
     availability of medical resources in the community and other 
     factors not related to quality care.
       Proposal: Requires the Secretary of Health and Human 
     Services, in conjunction with the Health Care Financing 
     Administration, National Institutes of Health, and the Agency 
     for Health Care Policy and Research, to develop outcome 
     standards and other measures to evaluate the quality care 
     provided to dying patients.


     (4) Pilot Project Funding to Improve End of Life Care Services

       Current Law: The only Medicare benefit aimed at improving 
     end of life care for Medicare beneficiaries is hospice care 
     which only serves a small minority of beneficiaries. In 1994, 
     the Medicare hospice benefit was provided to 340,000 dying 
     patients for the last few weeks of their lives. The hospice 
     benefit is limited to beneficiaries who have a terminal 
     illness with a life expectancy of 6 months or less. Cancer 
     and AIDS are virtually the only diseases that follow a 
     predictable course of decline near death. Cancer patients are 
     usually referred to hospice care when the individual's 
     functioning declines, usually 3-6 weeks before death. 
     Medicare beneficiaries with other diseases generally do not 
     have access to hospice care because the 6 month life 
     expectancy requirement is often difficult to determine.
       A review of studies done by an Institute of Medicine study 
     panel found that 40 to 80 percent of patients with a terminal 
     illness were inadequately treated for pain ``despite the 
     availability of effective pharmacological and other options 
     for relieving pain.''
       Proposal: Provides funding for demonstration projects to 
     develop new and innovative approaches to improving end of 
     life care provided to Medicare beneficiaries, in particular 
     those individuals who do not qualify for, or select, hospice 
     care. Also, includes funding to evaluate existing pilot 
     programs that are providing innovative approaches to end of 
     life care.


               (5) Improved Coverage of Pain Medications

       Current Law: With a few exceptions, Medicare does not 
     generally pay the cost of self-administered drugs prescribed 
     for outpatient use. The only outpatient pain medications 
     currently covered by Medicare are those that are administered 
     by a portable pump. The pump is covered by Medicare as 
     durable medical equipment, and the drugs associated with that 
     pump are also covered. It is widely recognized among 
     physicians treating patients with cancer and other life-
     threatening diseases that self-administered pain medications, 
     including oral drug and transdermal patches, offer 
     alternatives that are equally effective at controlling pain, 
     more comfortable for the patient, and much less costly than 
     the pump.
       Proposal: Requires Medicare coverage for self-administered 
     pain medications prescribed for outpatient use for patients 
     with life-threatening disease and chronic pain.

  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 
reexamine 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 four out of five 
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-technology treatments that merely 
prolong suffering.
  Moreover, according to a Dartmouth study released earlier this month, 
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.
  The legislation will expand access to effective and appropriate pain 
medications for Medicare beneficiaries at the end of their lives. 
Severe pain, including breakthrough pain that defies usual methods of 
pain control, is one of the most debilitating aspects of terminal 
illness. However, the only pain medication currently covered by 
Medicare in an outpatient setting is that which is administered by a 
portable pump.
  It is widely recognized among physicians treating patients with 
cancer and other life-threatening diseases that self-administered pain 
medications, including oral drugs and transdermal patches, offer 
alternatives that are equally effective in controlling pain, more 
comfortable for the patient, and much less costly than the pump. 
Therefore, the Advance Planning and Compassionate Care Act would expand 
Medicare to cover self-administered pain medications prescribed for the 
relief of chronic pain in life-threatening diseases or conditions.
  In addition, the legislation authorizes the Department of Health and 
Human Services to study end-of-life issues for Medicare and Medicaid 
patients and also to develop demonstration projects to develop models 
for end-of-life care for Medicare beneficiaries who do not qualify for 
the hospice benefit, but who still have chronic debilitating and 
ultimately fatal illnesses. Currently, in order for a Medicare 
beneficiary to qualify for the hospice benefit, a physician must 
document that the person has a life expectancy of 6 months or less. 
With some conditions--like congestive heart failure--it is difficult to 
project life expectancy with any certainty. However, these patients 
still need hospice-like services, including advance planning, support 
services, symptom management, and other services that are not currently 
available.
  Finally, the legislation establishes a telephone hotline to provide 
consumer information and advice concerning advance directives, end-of-
life issues and medical decisionmaking and directs the Agency for 
Health Care Policy and Research to develop a research agenda for the 
development of quality measures for end-of-life care.
  The legislation we are introducing today is particularly important in 
light of the current debate on physician-assisted suicide. As the 
Bangor Daily News pointed out in an editorial published earlier this 
year, 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, and I ask unanimous consent that this 
editorial be included in the Record.
  Mr. President, 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,

[[Page S11456]]

but also that it respects their desires for peace, autonomy, and 
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.
  There being no objection, the material was ordered to be printed in 
the Record, as follows:

                      Life and Death With Dignity

       When Maine legislators consider a bill this session on 
     physician-assisted suicide, they will face a question that 
     the nation's medical community has been unable to settle 
     after long debate. Legislators should respect the enormity of 
     what they are being asked to consider, recognizing that there 
     are many steps between the current state of caring for the 
     terminally ill and hastening their deaths.
       Even as the Supreme Court last week was considering 
     constitutional questions surrounding doctor-assisted suicide, 
     a coalition of 40 health care, religious and retiree groups 
     gathered in Washington to find a middle ground to this 
     debate. The coalition--including the American Medical 
     Association, the American Association of Retired Persons, 
     B'nai B'rith and the American Cancer Society--argues that the 
     desire for assisted suicide often is driven by concerns about 
     the quality of care for the terminally ill. Thoughts of 
     doctor-assisted suicide, these groups maintain, are brought 
     about by the fear of prolonged pain, loss of dignity and the 
     emotional strain on family members, among other reasons.
       The coalition suggests that the nation's medical system has 
     failed to meet the physical and emotional needs of dying 
     patients. One study from Memorial Sloan-Kettering in New York 
     estimated that 1.6 million terminally ill people a year would 
     be good candidates for hospice care but only about 350,000 
     receive it. Why not try to solve these problems before 
     codifying doctor-assisted suicide?
       The Maine legislation, called the Death With Dignity Act, 
     is narrowly drawn, based on legislative work on a similar 
     bill from last session. It would allow physicians to assist 
     in the suicide of a terminally ill person who makes three 
     oral and one written request to die and has satisfied a 
     counselor that he or she is capable of making the decision. 
     The act goes to some lengths to prevent coercion and to allow 
     the person to back out of the suicide. It is well-crafted and 
     sensitive legislation. But absent advances in the quality of 
     care for the terminally ill, it also may be premature.
       And despite the safeguards, doubts about who will be 
     allowed to pursue this process remain. In a friend-of-the-
     court brief addressed to the cases being considered by the 
     Supreme Court, the America Geriatric Society explains the 
     source of some of these doubts: ``The image of an 
     independent, capable person thoughtfully evaluating his or 
     her options, unaffected by biased third parties or other 
     circumstances . . . is so far from the experience of dying as 
     to be fanciful. Dying persons are often very weak, prone to 
     strong emotions and vulnerable to the suggestions, 
     expectations and guidance of others.''
       The medical community has developed wondrous means for 
     keeping bodies functioning long beyond what could have been 
     expected even a few years ago, perhaps even longer than is 
     desirable. The debate over assisted suicide in state after 
     state demands that physicians go beyond that now in 
     respecting the humanity and mortality that resides within 
     those bodies by providing the terminally ill with the 
     opportunity for less painful, more dignified deaths.
                                 ______