[Congressional Record Volume 148, Number 96 (Tuesday, July 16, 2002)]
[Extensions of Remarks]
[Pages E1272-E1273]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




  INTRODUCTION OF THE ``LIVING WELL WITH FATAL CHRONIC ILLNESS ACT OF 
                                 2002''

                                 ______
                                 

                         HON. JAMES L. OBERSTAR

                              of minnesota

                    in the house of representatives

                         Tuesday, July 16, 2002

  Mr. OBERSTAR. Mr. Speaker, I rise today to introduce the ``Living 
Well with Fatal Chronic Illness Act of 2002,'' a bill to build the 
capacity to meet the challenge of growing numbers of people living with 
serious chronic illness for some time before death. I am joined in 
introducing this bill by my colleagues Representative Stephanie Tubbs 
Jones, Representative Martin Frost, Representative Michael McNulty, and 
Representative Eleanor Holmes Norton.
  The early ideas for this legislative initiative came from 
conversations around the dinner table with my wife, Jean. We have both 
lost spouses, who succumbed at an unusually early age to cancer, and we 
have tended to disabled and frail parents.
  Many citizens have been personally touched by the experience of 
caring for disabled and frail parents or for spouses and children as 
they lived out their final days. My experience in these difficult 
situations has been that our health care system is a patchwork quilt of 
mismatched services that carry with them substantial expense. So, the 
challenges faced by those nearing the end of life, as well as by those 
caring for loved ones, are particularly meaningful to me.
  Just in the last half-century, the way that most Americans come to 
the end of life has changed dramatically. Today, most people live for 
many months with a serious chronic illness before they die. In fact, 
statistics show that, on average, Americans will be unable to care for 
themselves for the last two years of their lives. However, the services 
that our health care system makes readily available were designed to 
cope with short-term threats, such as accidental injuries and heart 
attacks. Our nation's health care system has not been adapted to meet 
the needs of people facing the final phase of life or the many 
challenges faced by their caregivers.
  Many of the shortcomings in the health care system related to care at 
the end of life arise from inherent shortcomings in federal policy. 
Unfortunately, we have been slow to see that these lapses are not just 
personal calamities and challenges, but rather, are built into federal 
policy. For example, while Medicare coverage makes operations and 
emergency services readily available to the elderly, services more 
appropriate for serious disability and dying are not easily found. 
Medicare, Medicaid, and Veteran's coverage do not provide for 
continuity in care, advance care planning, family support, or symptom 
relief for long-term fatal illnesses.
  Further, end of life care uses a large portion of funding allocated 
to health care services. Those last few years of life are tremendously 
expensive, with the last year alone using 28 percent of the overall 
Medicare budget. It is estimated that half of Medicare cost, and even 
more of Medicaid for the elderly and Veteran's health care, go toward 
care of those who are very sick and will die, rather than get well. 
Although taxpayers spend money on end of life care, they do not get 
reliability and quality from that care.
  And this is a problem that will only increase in the coming years. 
The numbers of people facing serious illness and death will double 
within a quarter century, as the Baby Boomer generation reaches old 
age. Our nation must not only arrange and pay for services that can 
support the unprecedented number of people who will need care, but we 
must also learn how to support family caregivers. Facts show that a 
family member will spend nearly as many years, seventeen, caring for an 
elderly parent, as raising children, eighteen years. Further, a family 
caregiver can expect to lose more than one-half million dollars in net 
worth, (from having a lower pension, more time not covered by health 
insurance, and lost wages.)
  The ``Living Well with Fatal Chronic Illness Act of 2002'' will meet 
the challenges faced by a growing number of people who must live with 
serious chronic illness for some time before death. This comprehensive 
legislation addresses four key initiatives--two affect caregivers, two 
points relate to improving end of life care.
  First, we establish an early Medicare buy-in program for otherwise 
uninsured caregivers aged 55 to 65. This provision would guarantee that 
those caregivers approaching Medicare age would not have to go without 
health insurance themselves when they are forced to leave work to care 
for a family member. For example, a 60-year-old woman who leaves her 
job to take care of her 85-year-old mother who has Alzheimer's disease 
often not only

[[Page E1273]]

loses her income and social role, but also her employer-sponsored 
health insurance. Age and pre-existing conditions make it unlikely that 
the daughter could purchase health insurance as an individual, so she 
may have to jeopardize her own medical care for that of her mother. By 
enabling family caregivers aged 55 or older to buy into Medicare at 
community rates, with no penalty for pre-existing conditions, we 
recognize the important contributions made by caregivers and support 
their valuable work in useful ways.
  Second, the legislation proposes a $3,000 per year tax credit for the 
primary caregiver of a low-income individual who has long-term care 
needs. This is important, because the United States is the only 
developed nation that does not support family caregivers. There is no 
federal government program to help improve skills, provide respite; 
indeed, we do not generally demonstrate that we honor their love and 
loyalty. The tax credit we propose is admittedly not enough to pay for 
the financial sacrifices of caregivers who provide long-term care, but 
it will demonstrate support and respect for the significant commitment 
and contributions made by those who help loved ones to live well 
despite serious illness.
  We have been so focused on learning how to prevent and cure diseases 
that we have all but abandoned interest in what occurs as those 
possibilities run out. Most people now die of long-term irreversible 
conditions like dementia, frailty, heart failure, emphysema, cancer, 
and stroke; yet there is very little reliable evidence about serious 
illness and the end of life. This legislation will help provide 
guidance that the medical community needs to respond more effectively 
to unique end of life challenges.
  Third, the bill authorizes the Department of Health and Human 
Services to establish research, demonstration, and education programs 
to improve the quality of end-of-life care across multiple federal 
agencies.
  Fourth, the bill authorizes the Department of Veterans Affairs to 
develop and implement programs to improve the delivery of appropriate 
health and support services for patients with fatal chronic illness. 
The Veterans Health Care System has been a leader in end of life care 
delivery and innovation, especially in advance care planning and pain 
management. This bill aims to support continued excellence through 
enhanced education and service delivery for this important care system 
that now serves so many disabled and elderly veterans.
  Our nation will face major challenges in the next quarter century as 
baby boomers approach old age. We must ensure that people suffering 
from fatal chronic illnesses live out their lives in a dignified, 
comfortable, and meaningful way, and we must support and honor the 
invaluable work of caregivers.

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