[Congressional Record (Bound Edition), Volume 149 (2003), Part 14]
[Extensions of Remarks]
[Pages 19849-19850]
[From the U.S. Government Publishing Office, www.gpo.gov]




           LIVING WELL WITH FATAL CHRONIC ILLNESS ACT OF 2003

                                 ______
                                 

                         HON. JAMES L. OBERSTAR

                              of minnesota

                    in the house of representatives

                        Thursday, July 24, 2003

  Mr. OBERSTAR. Mr. Speaker, I rise today to introduce the ``Living 
Well with Fatal Chronic Illness Act of 2003'', 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 colleague, Representative Jim Ramstad.
  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.
  Problems associated with end-of-life care are deeply rooted 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

[[Page 19850]]

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% of the overall Medicare 
budget. It is estimated that half of Medicare costs--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.
  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 2003'' 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 three key initiatives--one affects caregivers, 
two relate to improving end-of-life care.
  First, the legislation proposes a $3,000 per year refundable tax 
credit for the primary caregiver of a spouse or those they can claim as 
dependents, and certain other low income individuals, who have 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 caregivers' 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.
  In order to begin laying the foundation for evidence-based reforms to 
health care, the second section of 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.
  Third, 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.

                          ____________________