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).

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:

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.