[Congressional Bills 109th Congress]
[From the U.S. Government Publishing Office]
[H.R. 4249 Introduced in House (IH)]







109th CONGRESS
  1st Session
                                H. R. 4249

   To provide for programs within the Department of Health and Human 
  Services and Department of Veterans Affairs for patients with fatal 
                chronic illness, and for other purposes.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                            November 8, 2005

  Mr. Oberstar (for himself and Mr. Ramstad) introduced the following 
 bill; which was referred to the Committee on Energy and Commerce, and 
in addition to the Committees on Ways and Means and Veterans' Affairs, 
for a period to be subsequently determined by the Speaker, in each case 
for consideration of such provisions as fall within the jurisdiction of 
                        the committee concerned

_______________________________________________________________________

                                 A BILL


 
   To provide for programs within the Department of Health and Human 
  Services and Department of Veterans Affairs for patients with fatal 
                chronic illness, and for other purposes.

    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 ``Living Well with 
Fatal Chronic Illness Act of 2005''.
    (b) Table of Contents.--The table of contents of this Act is as 
follows:

Sec. 1. Short title; table of contents.
Sec. 2. Department of Health and Human Services programs for patients 
                            with fatal chronic illnesses.
Sec. 3. Programs through Department of Veterans Affairs regarding 
                            patients with fatal chronic illnesses.
Sec. 4. Study by Institute of Medicine.

SEC. 2. DEPARTMENT OF HEALTH AND HUMAN SERVICES PROGRAMS FOR PATIENTS 
              WITH FATAL CHRONIC ILLNESSES.

    (a) Establishment of Programs.--The Secretary of Health and Human 
Services shall carry out research, demonstration, and education 
programs with respect to fatal chronic illness through the Public 
Health Service.
    (b) Studies on End-of-Life Care.--The Secretary shall conduct 
studies on end-of-life care through all relevant agencies and through 
the Assistant Secretary for Planning and Evaluation. Such studies shall 
include an examination of the development of practice parameters 
applicable to such care as well as research regarding such care. Such 
studies shall also include an annual report from the Secretary to the 
appropriate committees for oversight in Congress and to the Special 
Committee on Aging in the Senate on service delivery and quality of 
life for persons living through fatal chronic illness and their 
families and professional caregivers.
    (c) Health Resources and Services Administration.--
            (1) In general.--In carrying out subsection (a), the 
        Secretary, acting through the Administrator of the Health 
        Resources and Services Administration, shall carry out 
        research, demonstration, and education programs toward 
        improving the delivery of appropriate health and support 
        services for patients with fatal chronic illnesses.
            (2) Health centers.--As determined appropriate by the 
        Secretary, paragraph (1) may be carried out through the program 
        under section 330 of the Public Health Service Act (relating to 
        community and migrant health centers and health centers 
        regarding homeless individuals and residents of public 
        housing), including by designating individuals with fatal 
        chronic illnesses as medically underserved populations.
            (3) Caregivers.--Programs under paragraph (1) shall include 
        activities regarding appropriate support services for 
        caregivers for patients with fatal chronic illness, including 
        respite care.
            (4) Health professions training.--Programs under paragraph 
        (1) shall include making awards of grants or contracts to 
        public and nonprofit private entities for the purpose of 
        training health professionals, including students attending 
        health professions schools, in the care of patients with fatal 
        chronic illnesses. Such training shall include training in the 
        provision of appropriate palliative care and appropriate 
        referral to hospices, and training provided as continuing 
        education.
            (5) Initiative.--Programs under paragraph (1) shall include 
        an initiative to coordinate innovation, evaluation, and service 
        delivery relating to fatal chronic illnesses.
    (d) Agency for Healthcare Research and Quality.--
            (1) In general.--In carrying out section 912(c) of the 
        Public Health Service Act, the Secretary, acting through the 
        Director of the Agency for Healthcare Research and Quality, 
        shall, with respect to patients with fatal chronic illnesses--
                    (A) identify the causes of preventable health care 
                errors and patient injury in health care delivery, 
                including errors of inadequate mobilization of services 
                to the home, inadequate continuity of caregivers, 
                inadequate symptom prevention, management, and relief, 
                or inadequate advance care planning;
                    (B) develop, demonstrate, and evaluate strategies 
                for reliable performance of the care system, including 
                reducing errors and improving patient safety and health 
                outcomes; and
                    (C) disseminate such effective strategies 
                throughout the health care industry.
            (2) Grants.--In carrying out paragraph (1)(A), the 
        Secretary shall make grants for the purpose of developing 
        reliable and current data and insight as to the merits and 
        efficiencies of various strategies for providing health care, 
        including palliative and hospice care, and social services for 
        patients with fatal chronic illnesses.
    (e) Centers for Disease Control and Prevention.--The Director of 
the Centers for Disease Control and Prevention shall expand activities 
with respect to epidemiology and public health in fatal chronic 
illness. Such activities may include contracting with the Institute of 
Medicine or another national interest non-profit organization to 
provide a review of the status of care for the end of life, which 
review shall be included by the Secretary in the annual reports to 
Congress under subsection (h).
    (f) National Institutes of Health.--
            (1) Expansion of activities.--The Director of the National 
        Institutes of Health (in this subsection referred to as the 
        ``Director'') shall expand, intensify, and coordinate the 
        activities of the National Institutes of Health with respect to 
        research on fatal chronic illness. Such activities shall 
        include programs, requests for proposals, study section 
        membership, advisory council membership, and training programs 
        to support rapid and substantial improvements in 
        understanding--
                    (A) mechanisms of disability and suffering in fatal 
                chronic illness and the relief and management of that 
                disability and suffering through to end of life; and
                    (B) human resources, service delivery arrangements, 
                technology, and financing that would be most useful in 
                ensuring comfort and dignity for individuals with fatal 
                chronic illness, and in relieving the burden for family 
                and professional caregivers.
            (2) Administration.--The Director shall carry out this 
        subsection acting through the Directors of every Institute 
        within the National Institutes of Health that has at least one 
        fatal chronic illness in its purview.
            (3) Collaboration.--In carrying out this subsection, the 
        Director of the National Institutes of Health shall collaborate 
        with the Department of Veterans Affairs, the Agency for 
        Healthcare Research and Quality, and any other agency that the 
        Director determines appropriate. The Secretary of Veterans 
        Affairs and the Director of the Agency for Healthcare Research 
        and Quality shall assist in such collaboration.
            (4) Responsibilities of institutes.--Each Institute within 
        the National Institutes of Health that has fatal chronic 
        illness in its purview shall establish a plan for improving 
        understanding of the mechanisms of disability and suffering in 
        fatal chronic illness and the relief and management of that 
        disability and suffering through to end of life. Since most 
        Americans now die of chronic heart or lung failure, cancer, 
        stroke, dementia, or multifactorial frailty, each such 
        Institute shall develop and implement a strategic plan and a 
        set of projects that aim primarily to ensure that affected 
        patients and their families can live through advanced illness 
        and death comfortably and meaningfully.
            (5) Centers of excellence.--
                    (A) In general.--In carrying out paragraph (1), the 
                Director shall make awards of grants and contracts to 
                public or nonprofit private entities for the 
                establishment and operation of centers of excellence to 
                carry out research, demonstration, and education 
                programs regarding fatal chronic illness, including 
                programs regarding palliative care.
                    (B) Designation.--In carrying out this subsection, 
                the Director shall designate at least 2 Claude D. 
                Pepper Older Americans Independence Centers (supported 
                by the National Institute on Aging), 2 program projects 
                of the National, Heart, Lung, and Blood Institute, and 
                2 comprehensive cancer centers (supported by the 
                National Cancer Institute) to provide education and 
                information support and research data and methods 
                leadership for substantial and rapid improvements in 
                the understanding of the mechanisms of disability and 
                suffering in fatal chronic illness and the relief and 
                management of that disability and suffering through to 
                the end of life.
                    (C) Research.--Each center established or operated 
                under subparagraph (A) or designated under subparagraph 
                (B) shall conduct basic and clinical research into 
                fatal chronic illness.
                    (D) Certain activities.--The Secretary shall ensure 
                that, with respect to the geographic area in which a 
                center of excellence under subparagraph (A) is located, 
                the activities of the center include--
                            (i) providing information and education 
                        regarding fatal chronic illness to health 
                        professionals and the public;
                            (ii) serving as a resource through which 
                        health professionals, and patients and their 
                        caregivers, can plan and coordinate the 
                        provision of health and support services 
                        regarding fatal chronic illness; and
                            (iii) providing training and support of 
                        implementation of quality improvement.
    (g) Medicare Pilot Programs for Treatment of Fatal Chronic 
Illnesses.--
            (1) Establishment.--The Secretary, in all relevant parts of 
        the Department of Health and Human Services, including the 
        Centers for Medicare & Medicaid Services and the Office of the 
        Assistant Secretary for Planning and Evaluation, shall provide 
        for pilot programs under this subsection. The pilot programs 
        shall be developed under a coordinated national effort in order 
        to demonstrate innovative, effective means of delivering care 
        to Medicare beneficiaries with fatal chronic illnesses under 
        the Medicare program. The pilot programs shall be completed 
        within 5 years after the date that funds are first appropriated 
        under this subsection.
            (2) Design.--The pilot programs under this subsection shall 
        be designed to learn how--
                    (A) to effectively and efficiently deliver quality 
                care to the fatally chronically ill;
                    (B) to provide and maintain continuity of care for 
                the fatally chronically ill;
                    (C) to provide advance care planning to the fatally 
                chronically ill;
                    (D) to determine what rate and strategies for 
                payment are most appropriate;
                    (E) to deliver emergency care for the fatally 
                chronically ill;
                    (F) to facilitate access to hospice care when the 
                Medicare beneficiary becomes eligible for such care;
                    (G) to develop and estimate the effect of potential 
                alternative severity criteria for eligibility of 
                specially tailored programs;
                    (H) to test the effectiveness and costs of new 
                strategies for family caregivers support;
                    (I) to implement a clinical services and payment 
                program that uses thresholds of severity to define the 
                onset of the need for comprehensive end-of-life 
                services;
                    (J) to test the merits of using severity criteria 
                (relating to fatal chronic illness) in determining 
                eligibility for the Medicare hospice program, but only 
                when use of such criteria expands access to hospice 
                care to individuals who are not yet terminally ill (as 
                that term is defined at section 1861(dd)(3)(A) of the 
                Social Security Act); and
                    (K) to arrange financial incentives so that 
                substantially diminished payments arise when care 
                providers fail to ensure timely advance care planning, 
                symptom prevention, management, and relief, or 
                continuity of care across time and settings.
            (3) Conduct of pilot programs.--The Secretary shall conduct 
        pilot programs in at least 6 sites and in at least 3 States.
            (4) Report to congress.--The Secretary shall submit to 
        Congress a report on the pilot programs under this subsection. 
        Such report shall include recommendations regarding whether the 
        pilot programs should become a permanent part of the Medicare 
        program.
    (h) Annual Reports.--The Secretary, in consultation with the 
Secretary of Veterans Affairs and other appropriate Federal agencies, 
shall submit an annual report to Congress on end-of-life care and on 
the research, demonstration, and education programs and studies 
conducted under this section. The Centers for Disease Control and 
Prevention shall be the lead agency for integrating and preparing the 
annual reports under this subsection unless the Secretary designates 
otherwise.
    (i) Definitions.--For purposes of this section:
            (1) The term ``fatal chronic illness'' means a disease (or 
        diseases), condition (or conditions), or disorder (or 
        disorders) that ordinarily worsens and causes death and that 
        causes a physical or mental disability or periodic episodes of 
        significant loss of functional capacity.
            (2) The term ``Secretary'' means the Secretary of Health 
        and Human Services.
    (j) Authorization of Appropriations.--There are authorized to be 
appropriated--
            (1) such sums as may be necessary to carry out subsections 
        (a), (b), (e), and (f);
            (2) $50,000,000 for the 5-fiscal-year period (beginning 
        with fiscal year 2006) to carry out subsection (c), excluding 
        paragraph (5) of that subsection;
            (3) $100,000,000 for the 3-fiscal-year period (beginning 
        with fiscal year 2006) to carry out subsection (c)(5);
            (4) $20,000,000 for the 5-fiscal-year period (beginning 
        with fiscal year 2006) to carry out subsection (d);
            (5) to carry out subsection (g) for each of fiscal years 
        2006 through 2010--
                    (A) $50,000,000 for the purposes of conducting 
                evaluations of pilot programs; and
                    (B) $50,000,000 for the purpose of providing 
                clinical services under pilot programs; and
            (6) $500,000 for each fiscal year during the 5-fiscal-year 
        period beginning with fiscal year 2006 to carry out subsection 
        (h).

SEC. 3. PROGRAMS THROUGH DEPARTMENT OF VETERANS AFFAIRS REGARDING 
              PATIENTS WITH FATAL CHRONIC ILLNESSES.

    (a) In General.--
            (1) Veterans programs.--Chapter 73 of title 38, United 
        States Code, is amended by adding at the end of subchapter II 
        the following new section:
``Sec. 7329. Programs for patients with fatal chronic illnesses
    ``(a) Establishment of Programs.--The Secretary shall develop and 
carry out programs to improve the delivery of appropriate health and 
support services for patients with fatal chronic illnesses. As part of 
those programs, the Secretary shall seek to develop services in 
collaboration with community service providers serving populations of 
persons other than veterans, especially those populations that use the 
Medicare program.
    ``(b) Community Service Providers.--For purposes of this section, a 
community service provider is an entity outside the Department that 
provides health care services to persons in the community in which it 
is located.
    ``(c) Role of GRECCs and Health Services Research.--The Secretary 
shall take appropriate steps to involve in programs under this section 
both geriatric research, education, and clinical centers under section 
7314 of this title and activities of health services research and 
quality improvement initiatives of the Department. As part of those 
steps, the Secretary shall seek to target the work of such centers and 
initiatives to improve care for veterans with fatal chronic illnesses.
    ``(d) Training.--In conducting programs of professional training 
and staff development for health-care personnel of the Department and 
persons being trained through health-care programs conducted by the 
Secretary, the Secretary shall ensure that those programs include 
training in pain relief and end-of-life care for persons with fatal 
chronic illnesses. Such training shall address symptoms, advance care 
planning, and quality improvement for those with fatal chronic 
illnesses.
    ``(e) Annual Report.--The Secretary shall prepare an annual report 
on care for veterans with fatal chronic illnesses and the activities of 
the Secretary under this section. The Secretary shall furnish such 
report to the Secretary of Health and Human Services each year in 
sufficient time for inclusion in the annual report of that Secretary 
under section 2(h) of the Living Well with Fatal Chronic Illness Act of 
2005.
    ``(f) Cooperation With Community Service Providers.--(1) In 
carrying out this section, the Secretary shall, to the extent 
practicable, take appropriate steps, through collaborative agreements 
or otherwise, to cooperate with community service providers that 
provide home and hospice care.
    ``(2) Such steps shall, to the extent practicable, include--
            ``(A) developing documentation of advance care plans for 
        persons with fatal chronic illnesses that are acceptable to all 
        providers of care for those persons;
            ``(B) developing service programs for persons with fatal 
        chronic illnesses under which Department facilities or 
        personnel may be used for part of the array of services 
        provided to such persons; and
            ``(C) developing protocols that facilitate the placement 
        with community service providers supported by the medicare or 
        medicaid programs of veterans with fatal chronic illnesses when 
        such a placement would be more efficient or effective for the 
        timely provision of services for the community in which the 
        facilities are located and for such veterans than the provision 
        of those services directly through Department facilities.
    ``(3) When the Secretary, as part of service programs authorized by 
this subsection, provides services to a person with a fatal chronic 
illness who is not a veteran, the Secretary shall, as a condition of 
providing such services, be reimbursed by appropriate community service 
providers for the costs of such services.
    ``(g) Support for Volunteer and Community Support of Veterans 
Living at Home.--The Secretary shall make grants to support volunteer 
and community support of veterans living at home who have fatal chronic 
illnesses. The Secretary may establish the minimum number of volunteers 
an entity must have in order to be eligible for a grant under this 
subsection.
    ``(h) Fatal Chronic Illness Defined.--For purposes of this section, 
the term `fatal chronic illness' means a disease (or diseases), 
condition (or conditions), or disorder (or disorders) that ordinarily 
worsens and causes death and that causes a physical or mental 
disability or periodic episodes of significant loss of functional 
capacity.''.
            (2) Clerical amendment.--The table of sections at the 
        beginning of such chapter is amended by inserting after the 
        item relating to section 7328 the following new item:

``7329. Programs for patients with fatal chronic illnesses.''.
    (b) Authorization of Appropriations.--There are authorized to be 
appropriated to the Secretary of Veterans Affairs to carry out section 
7329 of title 38, United States Code, as added by subsection (a), the 
amount of $5,000,000 for each of fiscal years 2006 through 2010.

SEC. 4. STUDY BY INSTITUTE OF MEDICINE.

    (a) Study.--The Secretary of Health and Human Services shall 
request the Institute of Medicine of the National Academy of Sciences 
to enter into an agreement under which the Institute agrees to conduct 
a study on the following:
            (1) The level of care for the elderly provided by family 
        members.
            (2) The coordination of care for the elderly provided by 
        family members with more formal care provided by health care 
        providers.
    (b) Report.--The Secretary of Health and Human Services shall 
ensure that the agreement under subsection (a) provides for the 
submission of a report to the Congress, not later than one year after 
the date of the enactment of this Act, on the results of the study 
conducted under this section.
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