[Congressional Record (Bound Edition), Volume 145 (1999), Part 4]
[Extensions of Remarks]
[Pages 5044-5045]
[From the U.S. Government Publishing Office, www.gpo.gov]




          ADVANCE PLANNING AND COMPASSIONATE CARE ACT OF 1999

                                 ______
                                 

                          HON. SANDER M. LEVIN

                              of michigan

                    in the house of representatives

                        Thursday, March 18, 1999

  Mr. LEVIN. Mr. Speaker, on March 17, 1999 I reintroduced the Advance 
Planning and Compassionate Care Act of 1999, along with my colleagues 
Representatives James Greenwood and Darlene Hooley. This legislation 
intends to respond to the critical needs of the elderly and their 
families during often difficult times in their lives. As advancements 
in health care provide better care and extend life expectancy, we must 
also be cognizant of the care we provide in the last stages of an 
individual's life.
  It is my hope that by addressing the needs of patients and families 
dealing with pain and medical difficulties at the end of life, we can 
focus attention on the constructive steps that can be taken to provide 
help and assistance to seniors and other Americans during this critical 
period. We should not allow end of life care to be eclipsed by the 
debate over physician assisted suicide. In my discussions with families 
and physicians, people are concerned with the quality of care and the 
type of information available during this difficult period of one's 
life.
  The Advance Planning and Compassionate Care Act builds on the Patient 
Self-Determination Act enacted in 1990, which I sponsored, by 
strengthening many of its provisions. The Patient Self-Determination 
Act requires health care facilities to distribute information to 
patients regarding existing State laws on living wills, medical powers-
of-attorney, and other advance directives so that individuals can 
document the type of care they would like to receive at the end of 
their lives. Since passage of that legislation, there has been an 
increase in the number of individuals who have advance directives. 
However, a Robert Wood Johnson study found that less than half of 
hospitalized patients who had advanced directives had even talked with 
any of their doctors about having a directive and only about one-third 
of the patients with advanced directives had their wishes documented in 
their medical records.
  This legislation seeks to address these problems and improve the 
quality of information provided to individuals in hospitals, nursing 
homes and other health care facilities. It will encourage seniors and 
families to have more open and informed communication with health care 
providers concerning their preferences for end-of-life care.
  Specifically, the bill requires that a trained professional be 
available, when requested, to discuss end-of-life care. It also 
requires that if a patient has an advance directive, it must be placed 
in a prominent part of the medical record where all doctors and nurses 
can clearly see it. In addition, the bill establishes a 24-hour hotline 
and information clearinghouse to provide consumers, patients and their 
families with information about advance directives and end-of-life 
decision making.
  Included in this legislation is a provision designed to ensure that 
an advance directive which is 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 other State. In addition, the bill 
requires the Secretary of Health and Human Services to gather 
information and consult with experts on the possibility of a uniform 
advance directive for all Medicare and Medicaid beneficiaries, 
regardless of where they live. A 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.
  The Advance Planning and Compassionate Care Act also addresses 
quality end-of-life care by responding to the national need for end-of-
life standards. It requires the Secretary of Health and Human Services, 
in conjunction with the Health Care Financing Administration, National 
Institutes of Health, and the Agency

[[Page 5045]]

for Care Policy and Research, to develop outcome standards and other 
measures to evaluate the quality of care provided to patients at the 
end of their lives.
  This legislation also responds to the serious crisis in pain care. As 
documented by the Institute of Medicine, studies have shown that a 
significant proportion of dying patients experience serious pain 
despite the availability of effective pain treatment. In addition, the 
aggressive use of ineffectual and intrusive interventions at the end of 
life may actually increase pain and eliminate the possibility for a 
peaceful and meaningful end-of-life experience with family and friends. 
This bill will improve the treatment of pain for Medicare patients with 
life threatening diseases.
  Currently, 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. 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, are alternatives that are equally effective at 
controlling pain, less costly and more comfortable for the patient. To 
address this inadequacy in coverage, the bill requires Medicare 
coverage for self-administered pain medications prescribed for 
outpatient use for patients with life-threatening disease and chronic 
pain.
  The bill also focuses on the need to develop models to improve end-
of-life care. The bill provides funding for demonstration projects to 
develop new and innovative approaches to improving end-of-life care 
provided to Medicare beneficiaries. It also includes funding to 
evaluate existing pilot programs that are providing innovative 
approaches to end-of-life care.
  Mr. Speaker, the legislation we are proposing seeks to improve the 
quality of care for individuals and their families experiencing the 
last stages of life so they may do so together with dignity, 
independence and compassion.

          Summary: Advance Planning and Compassionate Care Act


                            Section 1. Title

       Sec. 2. Development of Standards to Assess End-of-Life Care
       The HHS Secretary, through HCFA, NIH, and AHPR, shall 
     develop outcome standards and measures to evaluate the 
     performance and quality of health care programs and projects 
     that provide end-of-life care to individuals.
       Sec. 3. Study and Recommendation to Congress on Issues 
     Relating to Advance Directive Expansion
       HHS will study and report to Congress on ways to improve 
     the uniformity of advance directives.
       Sec. 4. Study and Legislative Proposal to Congress
       HHS shall study and report to Congress on all matters 
     relating to the creation of a national, uniform policy on 
     advance directives.
       Sec. 5. Expansion of Advance Directives
       Individuals in hospitals, nursing homes and health care 
     facilities will have an opportunity to discuss issues 
     relating to advance directives with an appropriately trained 
     individual. Advance directives must be placed prominently in 
     a patient's medical record.
       This section also ensures portability of advance 
     directives, so 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 
     other state.
       Sec. 6. National Information Hotline for End-of-Life 
     Decision-making
       HHS, through HCFA, shall establish and operate directly, or 
     by grant, contract, or interagency agreement, a clearinghouse 
     and 24-hour hot-line to provide consumer information about 
     advance directives and end-of-life decision-making.
       Sec. 7. Evaluation of and Demonstration Projects for 
     Medicare Beneficiaries
       HHS, through HCFA, will evaluate existing innovative 
     programs and also administer demonstration projects to 
     develop new and innovative approaches to providing end-of-
     life care to Medicare beneficiaries. Also, 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.
       Sec. 8. Medicare Coverage of Self-Administered Medication 
     for Certain Patients with Chronic Pain
       Medicare will provide coverage for self-administered pain 
     medications prescribed for outpatients with life-threatening 
     disease and chronic pain. (These medications are currently 
     covered by Medicare only when administered by portable pump).

     

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