[Congressional Record Volume 149, Number 128 (Wednesday, September 17, 2003)]
[Senate]
[Pages S11680-S11685]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. DeWINE (for himself and Mr. Dodd):
  S. 1629. A bill to improve the palliative and end-of-life care 
provided to children with life-threatening conditions, and for other 
purposes; to the Committee on Health, Education, Labor, and Pensions.
  Mr. DeWINE. Mr. President, I would like to take a few moments to talk 
about a bill I will be introducing today, along with Senator Chris 
Dodd, a bill that has to do with children. It is an issue that is 
difficult to think about or talk about but one that is critical to many 
children and their families in our Nation.
  What I am taking about is what we do, or what we can do, when a child 
develops a life-threatening or terminal illness. What I am talking 
about is we need to make sure we do everything in our power to make 
sick children as comfortable as possible and as happy as possible--
everything in our power to ease their suffering. What I am talking 
about is the pressing need for comprehensive, compassionate, continuous 
care for children who are facing death as a result of serious illness; 
the need

[[Page S11681]]

to make palliative care available to any child who is seriously ill and 
who might possibly be facing death.
  No parent or family member ever expects a child to die. With today's 
modern medicine and research advances, it is easy to think that only 
older people die, but, tragically, we all know that is not the case. 
That is why today, along with Senator Dodd and Congresswoman Pryce and 
Congressman Murtha, we are introducing a bill, the Compassionate Care 
for Children Act, 2003, in an effort to help ensure that very sick 
children receive a continuum of care and that young lives do not end in 
preventable pain or fear or sadness.
  Every year, over 55,000 children die in the United States. Some 
children will die suddenly and unexpectedly, in a car accident, by 
drowning, or fire, or by choking. Some may even be murdered.
  Others, though, thousands of children, will be diagnosed with life-
threatening illnesses or disease that might eventually, over a period 
of time, take away their lives. Children with these kinds of illnesses 
are in and out of hospitals and clinics. They receive chemotherapy and 
radiation treatments. They might undergo multiple surgeries.
  They might have nurses and doctors poking and prodding at them nearly 
all the time. Some of these children are old enough to realize that 
they might die if the treatments for their diseases might not work. 
Others are too young to understand that reality.
  One poor girl--Liza--knew she was going to die. Shortly after her 
fourth birthday, she was diagnosed with a form of leukemia. For the 
next year, Liza's parents explored every possible medical option for 
her, and every possible treatment. They took her to doctor after doctor 
after doctor, and they had access to the most cutting-edge therapies 
available to treat Liza's disease. But nothing seemed to work. At the 
age of 5, Liza began to ask her mother about what would come next, and 
whether she would soon die after her bone marrow transplant--her last 
chance for a cure--had failed.
  Once the medical treatments had failed, hospitals has little else to 
offer Liza. There was no discussion, tragically, about end-of-life care 
at the hospital for this little child. No one wanted to admit that they 
were out of treatment options, that there was no cure, that she wasn't 
going to get better, have her life restored and her health restored, 
and that she wasn't going to grow up and become an adult and have her 
own children someday. There was no discussion of that. No one in that 
hospital wanted to talk with Liza about death, even though this little 
girl pleaded with them to do so.
  Liza's mother told the Washington Post that Liza asked her oncologist 
to tell her when death was near. This little 5-year-old girl asked her 
doctor to tell her when she was going to die. Yet on the final night of 
her life, as this little child lay dying in her mother's arms, near her 
father and her older sister, Liza asked, ``Why didn't the doctor call 
to tell me.''

  Liza's parents were able to get some hospice care for their daughter 
during the last 3 months of her life. Tragically, fewer than 10 percent 
of children who die in the United States ever receive any sort of 
hospice care. When children like Liza are terminally ill, parents are 
forced to make decisions for their children under extremely emotional 
and stressful conditions. The decisions that confront these parents are 
ones that they never, of course, expected to have to make. Parents want 
what is best for their children. They want their children to get better 
and be healthy. They want their children to be pain free. They want 
their children to receive comfort and care when they are sick.
  God forbid that parents find out their children are very sick--so 
sick they are never going to get better, so sick there are no more 
treatments and no more cures, and so sick they know their children are 
going to die. Those parents will try to do everything imaginable and 
everything possible in their power to help their children and make them 
comfortable, pain-free, and happy in their remaining days.
  We have an obligation to help those parents achieve those goals.
  Children with life-threatening diseases and illnesses require special 
medical attention to make their shortened lives more comfortable. We 
know that. Yet despite that knowledge, the fact is, current Federal law 
and regulations do not take into consideration the special care needs 
of a gravely ill or dying child. In fact, these Federal laws and 
regulations get in the way of taking care of these children.
  The legislation we are introducing today would help correct the 
deficiencies in current law and help sick children facing possible 
death live more comfortably and live with dignity and would help them 
receive the comprehensive care they deserve and the comprehensive care 
we would expect for our own children.
  Let me take a few moments to explain what our bill actually does.
  First, it offers grants so doctors and nurses can receive training 
and education to enable them to better understand these issues and to 
help them provide end-of-life care for these kids. The goal of these 
grants is to improve the quality of care terminally ill children 
receive. One of the ways we do this is to make sure doctors and nurses 
truly understand these issues so they can provide the care and be 
better informed.
  Our bill also provides money for the National Institutes of Health to 
conduct research in pain and symptom management in children. This 
research is critically important to improve the type of care dying 
children receive.
  A recent article in the New England Journal of Medicine stated that 
89 percent of children dying of cancer die experiencing ``a lot or a 
great deal'' of pain and suffering.
  This does not have to happen. We can change that, and we must. This 
is simply not acceptable. Research has to be done so that children will 
not suffer needlessly.
  In addition to grants, the second piece of our bill changes the way 
care is delivered to children with life-threatening illnesses. Right 
now, doctors, hospitals, and parents have to overcome significant 
insurance and eligibility barriers to enroll a dying child in hospice. 
First, to qualify for hospice, a doctor must certify that a child has 6 
months or less to live. The problem with this ``6-month rule'' is that 
it is harder for a doctor to determine the life expectancy of a sick 
child than it is to determine the life expectancy of a sick adult or 
elderly person. A child dying of cancer, for example, may die in 6 
months or 6 years, making that child ineligible for hospice care that 
would ensure a comfortable life while that child is alive. It is very 
difficult many times to estimate how long that child is going to live. 
This very rigid 6-month predictability rule which denies care is very 
inhumane for these kids. It is wrong, and we have to change that rule.
  According to Dr. Joanne Hilden and Dr. Dan Tobin, ``Sick children are 
still growing, which is a biological process very much like healing. So 
when a child is diagnosed with illness such as cancer or heart disease, 
he is much more likely to be cured than an adult.''
  Simply put, diseases progress differently in children than adults, 
and children with terminal diseases get lost in the health care system 
designed for adults--a health care system that does not take into 
consideration the special needs of children.
  Furthermore, the current system does not allow a patient to receive 
curative and palliative care simultaneously. In other words, current 
law does not allow doctors to continue trying life-prolonging 
treatments--treatments that could cure an illness or extend their life, 
and also at the same time provide palliative care to that patient. In 
other words, current law does not allow the assistance, the doctors to 
go in to try to provide typical hospice care where you make that child 
comfortable and do all the things to alleviate the pain and at the same 
time you are still trying to save the child's life.

  That is wrong. That is simply wrong. That presents a parent with a 
horrible choice, a choice that no parent should have.
  That is tragic. Palliative care offers a continuum of care, care that 
involves counseling to families and patients about how to confront 
death, care that involves making the patient comfortable in his or her 
sickest hours, care that acknowledges that death is a real possibility.

[[Page S11682]]

  Federal law requires a person who wishes to receive end-of-life care 
to discontinue receiving curative or life-prolonging treatment. When a 
child is involved, this means a parent must agree to no longer provide 
curative treatment, treatment that could cure the child--that is 
wrong--in order for their child to receive care and support for the 
possible end of life.
  This should not be an either/or decision for parents. I don't know of 
any parent who would give up trying to cure a sick child when there was 
any chance that child might be saved. They should not be put in this 
position.
  Current law places parents in impossible positions. We simply must 
fix this. End-of-life care should be integrated with curative care so 
that parents, children, and doctors have access to a range of benefits 
and services. As I said earlier, palliative care should not be confined 
to the dying. It should be available to any child who is seriously ill.
  That is why our bill creates Medicare and private market 
demonstration programs to remove these barriers, making it simpler and 
easier for doctors and parents to make end-of-life decisions for 
children. the demonstration program will allow children to receive 
curative and palliative care concurrently. This means children can 
continue to receive treatment and life-prolonging care while receiving 
palliative care at the same time. The demonstration program also 
removes the 6-month rule so children can receive palliative care 
benefit at the time of diagnosis.
  I take a moment to tell my colleagues about another girl, Rachel Ann. 
Rachel Ann was a little girl who did receive palliative care from the 
time she was diagnosed with a grave heart problem. Rachel Ann had a 
heart that doctors describe as ``incompatible with life.'' Most babies 
with heart malformations like Rachel Ann die within a matter of days 
after birth. Rachel Ann's parents were devastated and distraught to see 
their tiny baby connected to a sea of wire and tubes, clinging to life.
  Rachel Ann's parents were referred to a pediatric hospice and decided 
to bring their daughter home from the hospital so she could experience 
life with her family, surrounded by parents, brothers, relatives and 
church community at home. Rachel Ann's parents say she seemed truly 
happy at home. She smiled and wiggled in response to voices and being 
held. Her brothers doted on their baby sister.
  Rachel Ann was able to spend her life at home in comfort with her 
family. She lived for 42 days and her family was able to make every 
single moment count. On Christmas day, after spending the morning with 
her family, Rachel Ann passed away.
  This is truly a tragic story. Fortunately, Rachel Ann and her family 
were able to spend as much time together as possible with Rachel Ann as 
comfortable as possible. Her brothers were able to know their sister 
and to talk with hospice professionals about what was happening to her. 
Rachel Ann's parents and grandparents also were able to talk about her 
condition with hospice professionals and maintained an active role in 
her care. There was a support system in place for this family.
  The terminal illness of a child must be an incredibly difficult thing 
to confront for a parent and a family. No one wants to think about 
children dying. No one wants to believe that children suffer, 
especially in this age of great medical advances. It is a horrible 
situation. But it is one that we must face. We can always do more to 
improve the care that our children receive. We should continue to 
support research and finding cures for the diseases and illnesses from 
which children suffer. But until those cures are found, and as long as 
children die from these diseases, we must provide care and support for 
a dying child. We have an obligation to provide that care and that 
support.
  The bill we will introduce later today will be an important step in 
this direction. It will provide tools and support networks to help 
grieving families in their time of need. It is the right thing to do. I 
encourage my colleagues to join us in cosponsoring this important piece 
of legislation.
  Mr. President, I ask unanimous consent that the text of the bill be 
printed in the Record.
  There being no objection, the bill was ordered to be printed in the 
Record, as follows:

                                S. 1629

       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 ``Children's 
     Compassionate Care Act of 2003''.
       (b) Table of Contents.--The table of contents of this Act 
     is as follows:

Sec. 1. Short title; table of contents.

   TITLE I--GRANTS TO EXPAND PEDIATRIC PALLIATIVE CARE SERVICES AND 
                                RESEARCH

Sec. 101. Education and training.
Sec. 102. Grants to expand pediatric palliative care.
Sec. 103. Health professions fellowships and residency grants.
Sec. 104. Model program grants.
Sec. 105. Research.

       TITLE II--PEDIATRIC PALLIATIVE CARE DEMONSTRATION PROJECTS

Sec. 201. Medicare pediatric palliative care demonstration projects.
Sec. 202. Private sector pediatric palliative care demonstration 
              projects.
Sec. 203. Authorization of appropriations.

   TITLE I--GRANTS TO EXPAND PEDIATRIC PALLIATIVE CARE SERVICES AND 
                                RESEARCH

     SEC. 101. EDUCATION AND TRAINING.

       Subpart 2 of part E of title VII of the Public Health 
     Service Act (42 U.S.C. 295 et seq.) is amended--
       (1) in section 770(a) by inserting ``except for section 
     771,'' after ``carrying out this subpart''; and
       (2) by adding at the end the following:

     ``SEC. 771. PEDIATRIC PALLIATIVE CARE SERVICES EDUCATION AND 
                   TRAINING.

       ``(a) Establishment.--The Secretary may award grants to 
     eligible entities to provide training in pediatric palliative 
     care and related services.
       ``(b) Eligible Entity Defined.--
       ``(1) In general.--In this section the term `eligible 
     entity' means a health care provider that is affiliated with 
     an academic institution, that is providing comprehensive 
     pediatric palliative care services, alone or through an 
     arrangement with another entity, and that has demonstrated 
     experience in providing training and consultative services in 
     pediatric palliative care including--
       ``(A) children's hospitals or other hospitals or medical 
     centers with significant capacity in caring for children with 
     life-threatening conditions;
       ``(B) pediatric hospices or hospices with significant 
     pediatric palliative care programs;
       ``(C) home health agencies with a demonstrated capacity to 
     serve children with life-threatening conditions and that 
     provide pediatric palliative care; and
       ``(D) any other entity that the Secretary determines is 
     appropriate.
       ``(2) Life-threatening condition defined.--In this 
     subsection, the term `life-threatening condition' has the 
     meaning given such term by the Secretary (in consultation 
     with hospice programs (as defined in section 1861(dd)(2) of 
     the Social Security Act (42 U.S.C. 1395x(dd)(2))) and 
     academic experts in end-of-life care), except that the 
     Secretary may not limit such term to individuals who are 
     terminally ill (as defined in section 1861(dd)(3) of the 
     Social Security Act (42 U.S.C. 1395x(dd)(3))).
       ``(c) Authorized Activities.--Grant funds awarded under 
     subsection (a) shall be used to--
       ``(1) provide short-term training and education programs in 
     pediatric palliative care for the range of interdisciplinary 
     health professionals and others providing such care;
       ``(2) provide consultative services and guidance to health 
     care providers that are developing and building comprehensive 
     pediatric palliative care programs;
       ``(3) develop regional information outreach and other 
     resources to assist clinicians and families in local and 
     outlying communities and rural areas;
       ``(4) develop or evaluate current curricula and educational 
     materials being used in providing such education and guidance 
     relating to pediatric palliative care;
       ``(5) facilitate the development, assessment, and 
     implementation of clinical practice guidelines and 
     institutional protocols and procedures for pediatric 
     palliative, end-of-life, and bereavement care; and
       ``(6) assure that families of children with life-
     threatening conditions are an integral part of these 
     processes.
       ``(d) Authorization of Appropriations.--There are 
     authorized to be appropriated to carry out this section 
     $5,000,000 for each of fiscal years 2004 through 2008.''.

     SEC. 102. GRANTS TO EXPAND PEDIATRIC PALLIATIVE CARE.

       Part Q of title III of the Public Health Service Act (42 
     U.S.C. 280h et seq.) is amended by adding at the end the 
     following:

     ``SEC. 399Z-1. GRANTS TO EXPAND PEDIATRIC PALLIATIVE CARE.

       ``(a) Establishment.--The Secretary, acting through the 
     Administrator of the Health Resources and Services 
     Administration may award grants to eligible entities to 
     implement or expand pediatric palliative care programs for 
     children with life-threatening conditions.

[[Page S11683]]

       ``(b) Eligible Entity Defined.--In this section, the term 
     `eligible entity' means--
       ``(1) children's hospitals or other hospitals with a 
     capacity and ability to care for children with life-
     threatening conditions;
       ``(2) hospices with a demonstrated capacity and ability to 
     care for children with life-threatening conditions and their 
     families; and
       ``(3) home health agencies with--
       ``(A) a demonstrated capacity and ability to care for 
     children with life-threatening conditions; and
       ``(B) expertise in providing palliative care.
       ``(c) Authorized Activities.--Grant funds awarded under 
     subsection (a) shall be used to--
       ``(1) create new pediatric palliative care programs;
       ``(2) start or expand needed additional care settings, such 
     as respite, hospice, inpatient day services, or other care 
     settings to provide a continuum of care across inpatient, 
     home, and community-based settings;
       ``(3) expand comprehensive pediatric palliative care 
     services, including care coordination services, to greater 
     numbers of children and broader service areas, including 
     regional and rural outreach; and
       ``(4) support communication linkages and care coordination, 
     telemedicine and teleconferencing, and measures to improve 
     patient safety.
       ``(d) Application.--Each eligible entity desiring a grant 
     under this section shall submit an application to the 
     Administrator at such time, in such manner, and containing 
     such information as the Administrator may require.
       ``(e) Authorization of Appropriations.--There are 
     authorized to be appropriated to carry out this section 
     $10,000,000 for each of fiscal years 2004 through 2008.''.

     SEC. 103. PEDIATRIC PALLIATIVE CARE TRAINING AND RESIDENCY 
                   GRANTS.

       Part A of title IV of the Public Health Service Act (42 
     U.S.C. 281 et seq.) is amended by adding at the end the 
     following:

     ``SEC. 404F. PEDIATRIC PALLIATIVE CARE TRAINING AND RESIDENCY 
                   GRANTS.

       ``(a) Establishment.--The Director of the National 
     Institutes of Health is authorized to award training grants 
     to eligible entities to expand the number of physicians, 
     nurses, mental health professionals, and appropriate allied 
     health professionals and specialists (as determined by the 
     Secretary) with pediatric palliative clinical training and 
     research experience.
       ``(b) Eligible Entity Defined.--In this section, the term 
     `eligible entity' means--
       ``(1) a pediatric department of a medical school and other 
     related departments including--
       ``(A) oncology;
       ``(B) virology;
       ``(C) neurology; and
       ``(D) psychiatry;
       ``(2) a school of nursing;
       ``(3) a school of psychology and social work; and
       ``(4) a children's hospital or other hospital with a 
     significant number of pediatric patients with life-
     threatening conditions.
       ``(c) Application.--Each eligible entity desiring a grant 
     under this section shall submit an application to the 
     Director at such time, in such manner, and containing such 
     information as the Director may require.
       ``(d) Authorization of Appropriations.--There are 
     authorized to be appropriated to carry out this section 
     $5,000,000 for each of fiscal years 2004 through 2008.''.

     SEC. 104. MODEL PROGRAM GRANTS.

       Part Q of title III of the Public Health Service Act (42 
     U.S.C. 280h et seq.), as amended by section 102, is further 
     amended by adding at the end the following:

     ``SEC. 399Z-2. MODEL PROGRAM GRANTS.

       ``(a) Establishment.--The Secretary may award grants to 
     eligible entities to enhance pediatric palliative care and 
     care for children with life-threatening conditions in general 
     pediatric or family practice residency training programs 
     through the development of model programs.
       ``(b) Eligible Entity Defined.--In this section the term 
     `eligible entity' means a pediatric department of--
       ``(1) a medical school;
       ``(2) a children's hospital; or
       ``(3) any other hospital with a general pediatric or family 
     practice residency program that serves a significant number 
     of pediatric patients with life-threatening conditions.
       ``(c) Application.--Each eligible entity desiring a grant 
     under this section shall submit an application to the 
     Administrator at such time, in such manner, and containing 
     such information as the Administrator may require.
       ``(d) Authorization of Appropriations.--There are 
     authorized to be appropriated to carry out this section 
     $5,000,000 for each of fiscal years 2004 through 2008.''.

     SEC. 105. RESEARCH.

       (a) Pain and Symptom Management.--The Director of the 
     National Institutes of Health (in this section referred to as 
     the ``Director'') shall provide translational research grants 
     to fund research in pediatric pain and symptom management 
     that will utilize existing facilities of the National 
     Institutes of Health including--
       (1) pediatric pharmacological research units;
       (2) the general clinical research centers; and
       (3) other centers providing infrastructure for patient 
     oriented research.
       (b) Eligible Entities.--In carrying out subsection (a), the 
     Director may award grants for the conduct of research to--
       (1) children's hospitals or other hospitals serving a 
     significant number of children with life-threatening 
     conditions;
       (2) pediatric departments of medical schools;
       (3) institutions currently participating in National 
     Institutes of Health network of pediatric pharmacological 
     research units; and
       (4) hospices with pediatric palliative care programs and 
     academic affiliations.
       (c) Authorization of Appropriations.--There are authorized 
     to be appropriated to carry out this section $10,000,000, to 
     remain available until expended.

       TITLE II--PEDIATRIC PALLIATIVE CARE DEMONSTRATION PROJECTS

     SEC. 201. MEDICARE PEDIATRIC PALLIATIVE CARE DEMONSTRATION 
                   PROJECTS.

       (a) Definitions.--In this section:
       (1) Care coordination services.--The term ``care 
     coordination services'' means services that provide for the 
     coordination of, and assistance with, referral for medical 
     and other services, including multidisciplinary care 
     conferences, coordination with other providers involved in 
     care of the eligible child, patient and family caregiver 
     education and counseling, and such other services as the 
     Secretary determines to be appropriate in order to facilitate 
     the coordination and continuity of care furnished to an 
     individual.
       (2) Demonstration project.--The term ``demonstration 
     project'' means a demonstration project established by the 
     Secretary under subsection (b)(1).
       (3) Eligible child.--The term ``eligible child'' means an 
     individual with a life-threatening condition who is entitled 
     to benefits under part A of the medicare program and who is 
     under 18 years of age.
       (4) Eligible provider.--The term ``eligible provider'' 
     means--
       (A) a pediatric palliative care program that is a public 
     agency or private organization (or a subdivision thereof) 
     which--
       (i)(I) is primarily engaged in providing the care and 
     services described in section 1861(dd)(1) of the Social 
     Security Act (42 U.S.C. 1395(dd)(1)) and makes such services 
     available (as needed) on a 24-hour basis and which also 
     provides counseling (including bereavement counseling) for 
     the immediate family of eligible children;
       (II) provides for such care and services in eligible 
     children's homes, on an outpatient basis, and on a short-term 
     inpatient basis, directly or under arrangements made by the 
     agency or organization, except that--

       (aa) the agency or organization must routinely provide 
     directly substantially all of each of the services described 
     in subparagraphs (A), (C), and (H) of such section 
     1861(dd)(1);
       (bb) in the case of other services described in such 
     section 1861(dd)(1) which are not provided directly by the 
     agency or organization, the agency or organization must 
     maintain professional management responsibility for all such 
     services furnished to an eligible child, regardless of the 
     location or facility in which such services are furnished; 
     and

       (III)(aa) identifies medical, community, and social service 
     needs;
       (bb) simplifies access to service;
       (cc) uses the full range of community resources, including 
     the friends and family of the eligible child; and
       (dd) provides educational opportunities relating to health 
     care; and
       (ii) has an interdisciplinary group of personnel which--

       (I) includes at least--

       (aa) 1 physician (as defined in section 1861(r)(1) of the 
     Social Security Act (42 U.S.C. 1395x(r)(1)));
       (bb) 1 registered professional nurse; and
       (cc) 1 social worker;

     employed by or, in the case of a physician described in item 
     (aa), under contract with the agency or organization, and 
     also includes at least 1 pastoral or other counselor;

       (II) provides (or supervises the provision of) the care and 
     services described in such section 1861(dd)(1); and
       (III) establishes the policies governing the provision of 
     such care and services;
       (iii) maintains central clinical records on all patients;
       (iv) does not discontinue the palliative care it provides 
     with respect to an eligible child because of the inability of 
     the eligible child to pay for such care;
       (v)(I) uses volunteers in its provision of care and 
     services in accordance with standards set by the Secretary, 
     which standards shall ensure a continuing level of effort to 
     use such volunteers; and
       (II) maintains records on the use of these volunteers and 
     the cost savings and expansion of care and services achieved 
     through the use of these volunteers;
       (vi) in the case of an agency or organization in any State 
     in which State or applicable local law provides for the 
     licensing of agencies or organizations of this nature, is 
     licensed pursuant to such law;
       (vii) seeks to ensure that children and families receive 
     complete, timely, understandable information about diagnosis, 
     prognosis, treatments, and palliative care options;
       (viii) ensures that children and families participate in 
     effective and timely prevention, assessment, and treatment of 
     physical and psychological symptoms of distress; and
       (ix) meets such other requirements as the Secretary may 
     find necessary in the interest of the health and safety of 
     the eligible children who are provided with palliative care 
     by such agency or organization; and

[[Page S11684]]

       (B) any other individual or entity with an agreement under 
     section 1866 of the Social Security Act (42 U.S.C. 1395cc) 
     that--
       (i) has demonstrated experience in providing 
     interdisciplinary team-based palliative care and care 
     coordination services (as defined in paragraph (1)) to 
     pediatric populations; and
       (ii) the Secretary determines is appropriate.
       (5) Life-threatening condition.--The term ``life-
     threatening condition'' has the meaning given such term by 
     the Secretary (in consultation with hospice programs (as 
     defined in section 1861(dd)(2) of the Social Security Act (42 
     U.S.C. 1395x(dd)(2))) and academic experts in end-of-life 
     care), except that the Secretary may not limit such term to 
     individuals who are terminally ill (as defined in section 
     1861(dd)(3) of the Social Security Act (42 U.S.C. 
     1395x(dd)(3))).
       (6) Medicare program.--The term ``medicare program'' means 
     the health benefits program under title XVIII of the Social 
     Security Act (42 U.S.C. 1395 et seq.).
       (7) Secretary.--The term ``Secretary'' means the Secretary 
     of Health and Human Services.
       (b) Pediatric Palliative Care Demonstration Projects.--
       (1) Establishment.--The Secretary shall establish 
     demonstration projects in accordance with the provisions of 
     this subsection to provide pediatric palliative care to 
     eligible children.
       (2) Participation.--
       (A) Eligible providers.--Any eligible provider may furnish 
     items or services covered under the pediatric palliative care 
     benefit.
       (B) Eligible children.--The Secretary shall permit any 
     eligible child residing in the service area of an eligible 
     provider participating in a demonstration project to 
     participate in such project on a voluntary basis.
       (c) Services Under Demonstration Projects.--
       (1) In general.--Except as otherwise provided in this 
     subsection, the provisions of section 1814(i) of the Social 
     Security Act (42 U.S.C. 1395f(i)) shall apply to the payment 
     for pediatric palliative care provided under the 
     demonstration projects in the same manner in which such 
     section applies to the payment for hospice care (as defined 
     in section 1861(dd)(1) of the Social Security Act (42 U.S.C. 
     1395x(dd)(1))) provided under the medicare program.
       (2) Coverage of pediatric palliative care.--
       (A) In general.--Notwithstanding section 1862(a)(1)(C) of 
     the Social Security Act (42 U.S.C. 1395y(a)(1)(C)), the 
     Secretary shall provide for reimbursement for items and 
     services provided under the pediatric palliative care benefit 
     made available under the demonstration projects in a manner 
     that is consistent with the requirements of subparagraph (B).
       (B) Benefit.--Under the pediatric palliative care benefit, 
     the following requirements shall apply:
       (i) Waiver of requirement to elect hospice care.--Each 
     eligible child may receive benefits without an election under 
     section 1812(d)(1) of the Social Security Act (42 U.S.C. 
     1395d(d)(1)) to receive hospice care (as defined in section 
     1861(dd)(1) of such Act (42 U.S.C. 1395x(dd)(1))) having been 
     made with respect to the eligible child.
       (ii) Authorization for curative treatment.--Each eligible 
     child may continue to receive benefits for disease and 
     symptom modifying treatment under the medicare program.
       (iii) Provision of care coordination services.--Each 
     eligible child shall receive care coordination services (as 
     defined in subsection (a)(1)) and hospice care (as so 
     defined) through an eligible provider participating in a 
     demonstration project, regardless of whether such individual 
     has been determined to be terminally ill (as defined in 
     section 1861(dd)(3) of the Social Security Act (42 U.S.C. 
     1395x(dd)(3))).
       (iv) Availability of information on pediatric palliative 
     care.--Each eligible child and the family of such child shall 
     receive information and education in order to better 
     understand the utility of pediatric palliative care.
       (v) Availability of bereavement counseling.--Each family of 
     an eligible child shall receive bereavement counseling, if 
     appropriate.
       (vi) Additional benefits.--Under the demonstration 
     projects, the Secretary may include any other item or 
     service--

       (I) for which payment may otherwise be made under the 
     medicare program; and
       (II) that is consistent with the recommendations contained 
     in the report published in 2003 by the Institute of Medicine 
     of the National Academy of Sciences entitled ``When Children 
     Die: Improving Palliative and End-of-Life Care for Children 
     and Their Families''.

       (C) Payment.--
       (i) Establishment of payment methodology.--The Secretary 
     shall establish a methodology for determining the amount of 
     payment for pediatric palliative care furnished under the 
     demonstration projects that is similar to the methodology for 
     determining the amount of payment for hospice care (as 
     defined in section 1861(dd)(1) of the Social Security Act (42 
     U.S.C. 1395x(dd)(1))) under section 1814(i) of such Act (42 
     U.S.C. 1395f(i)), except as provided in the following 
     subclauses:

       (I) Amount of payment.--Subject to subclauses (II) and 
     (III), the amount of payment for pediatric palliative care 
     shall be equal to the amount that would be paid for hospice 
     care (as so defined), increased by an appropriate percentage 
     to account for the additional costs of providing bereavement 
     counseling and care coordination services (as defined in 
     subsection (a)(1)).
       (II) Waiver of hospice cap.--The limitation under section 
     1814(i)(2) of the Social Security Act (42 U.S.C. 1395f(i)(2)) 
     shall not apply with respect to pediatric palliative care and 
     amounts paid for pediatric palliative care under this 
     subparagraph shall not be counted against the cap amount 
     described in such section.
       (III) Separate payment for counseling services.--
     Notwithstanding section 1814(i)(1)(A) of the Social Security 
     Act (42 U.S.C. 1395f(i)(1)(A)), the Secretary may pay for 
     bereavement counseling as a separate service.

       (ii) Special rules for payment of medicare+choice 
     organizations.--The Secretary shall establish procedures 
     under which the Secretary provides for an appropriate 
     adjustment in the monthly payments made under section 1853 of 
     the Social Security Act (42 U.S.C. 1395w-23) to any 
     Medicare+Choice organization that provides health care items 
     or services to an eligible child who is participating in a 
     demonstration project.
       (3) Coverage of pediatric palliative care consultation 
     services.--Under the demonstration projects, the Secretary 
     shall provide for a one-time payment on behalf of each 
     eligible child who has not yet elected to participate in the 
     demonstration project for services that are furnished by a 
     physician who is either the medical director or an employee 
     of an eligible provider participating in such a project and 
     that consist of--
       (A) an evaluation of the individual's need for pain and 
     symptom management, including the need for pediatric 
     palliative care;
       (B) counseling the individual and the family of such 
     individual with respect to the benefits of pediatric 
     palliative care and care options; and
       (C) if appropriate, advising the individual and the family 
     of such individual regarding advanced care planning.
       (d) Conduct of Demonstration Projects.--
       (1) Sites.--The Secretary shall conduct demonstration 
     projects in at least 4, but not more than 8, sites.
       (2) Selection of sites.--The Secretary shall select 
     demonstration sites on the basis of proposals submitted under 
     paragraph (3) that are located in geographic areas that--
       (A) include both urban and rural eligible providers; and
       (B) are geographically diverse and readily accessible to a 
     significant number of eligible children.
       (3) Proposals.--The Secretary shall accept proposals to 
     furnish pediatric palliative care under the demonstration 
     projects from any eligible provider at such time, in such 
     manner, and in such form as the Secretary may reasonably 
     require.
       (4) Facilitation of evaluation.--The Secretary shall design 
     the demonstration projects to facilitate the evaluation 
     conducted under subsection (e)(1).
       (5) Duration.--The Secretary shall complete the 
     demonstration projects within a period of 5 years that 
     includes a period of 1 year during which the Secretary shall 
     complete the evaluation under subsection (e)(1).
       (e) Evaluation and Reports to Congress.--
       (1) Evaluation.--During the 1-year period following the 
     first 4 years of the demonstration projects, the Secretary 
     shall complete an evaluation of the demonstration projects in 
     order--
       (A) to determine the short-term and long-term costs and 
     benefits of changing--
       (i) hospice care (as defined in section 1861(dd)(1) of the 
     Social Security Act (42 U.S.C. 1395x(dd)(1))) provided under 
     the medicare program to children to include the pediatric 
     palliative care furnished under the demonstration projects; 
     and
       (ii) the medicare program to permit eligible children to 
     receive curative and palliative care simultaneously;
       (B) to review the implementation of the demonstration 
     projects compared to recommendations contained in the report 
     published in 2003 by the Institute of Medicine of the 
     National Academy of Sciences entitled ``When Children Die: 
     Improving Palliative and End-of-Life Care for Children and 
     Their Families'';
       (C) to determine the quality and duration of palliative 
     care for individuals who receive such care under the 
     demonstration projects who would not be eligible to receive 
     such care under the medicare program;
       (D) whether any increase in payments for pediatric 
     palliative care is offset by savings in other parts of the 
     medicare program; and
       (E) the projected cost of implementing the demonstration 
     projects on a national basis.
       (2) Reports.--
       (A) Interim report.--Not later than the date that is 2 
     years after the date on which the demonstration projects are 
     implemented, the Secretary shall submit an interim report to 
     Congress on the demonstration projects.
       (B) Final report.--Not later than the date that is 1 year 
     after the date on which the demonstration projects end, the 
     Secretary shall submit a final report to Congress on the 
     demonstration projects that includes the results of the 
     evaluation conducted under paragraph (1) together with such 
     recommendations for legislation or administrative action as 
     the Secretary determines is appropriate.

[[Page S11685]]

       (f) Waiver of Medicare Requirements.--The Secretary shall 
     waive compliance with such requirements of the medicare 
     program to the extent and for the period the Secretary finds 
     necessary to conduct the demonstration projects.

     SEC. 202. PRIVATE SECTOR PEDIATRIC PALLIATIVE CARE 
                   DEMONSTRATION PROJECTS.

       (a) Definitions.--In this section:
       (1) Demonstration project.--The term ``demonstration 
     project'' means a demonstration project established by the 
     Secretary under subsection (b)(1).
       (2) Eligible child.--The term ``eligible child'' means an 
     individual with a life-threatening condition who is--
       (A) under 18 years of age;
       (B) enrolled for health benefits coverage under an eligible 
     health plan; and
       (C) not enrolled under (or entitled to) benefits under a 
     health plan described in paragraph (3)(C).
       (3) Eligible health plan.--
       (A) In general.--Subject to clauses (ii) and (iii), the 
     term ``eligible health plan'' means an individual or group 
     plan that provides, or pays the cost of, medical care (as 
     such term is defined in section 2791 of the Public Health 
     Service Act (42 U.S.C. 300gg-91)).
       (B) Types of plans included.--For purposes of subparagraph 
     (A), the term ``eligible health plan'' includes the following 
     health plans, and any combination thereof:
       (i) A group health plan (as defined in section 2791(a) of 
     the Public Health Service Act (42 U.S.C. 300gg-91(a))), but 
     only if the plan--

       (I) has 50 or more participants (as defined in section 3(7) 
     of the Employee Retirement Income Security Act of 1974 (29 
     U.S.C. 1002(7))); or
       (II) is administered by an entity other than the employer 
     who established and maintains the plan.

       (ii) A health insurance issuer (as defined in section 
     2791(b) of the Public Health Service Act (42 U.S.C. 300gg-
     91(b))).
       (iii) A health maintenance organization (as defined in 
     section 2791(b) of the Public Health Service Act (42 U.S.C. 
     300gg-91(b))).
       (iv) A long-term care policy, including a nursing home 
     fixed indemnity policy (unless the Secretary determines that 
     such a policy does not provide sufficiently comprehensive 
     coverage of a benefit so that the policy should be treated as 
     a health plan).
       (v) An employee welfare benefit plan or any other 
     arrangement which is established or maintained for the 
     purpose of offering or providing health benefits to the 
     employees of 2 or more employers.
       (vi) Health benefits coverage provided under a contract 
     under the Federal employees health benefits program under 
     chapter 89 of title 5, United States Code.
       (C) Types of plans excluded.--For purposes of subparagraph 
     (A), the term ``eligible health plan'' does not include any 
     of the following health plans:
       (i) The medicare program under title XVIII of the Social 
     Security Act (42 U.S.C. 1395 et seq.).
       (ii) The medicaid program under title XIX of the Social 
     Security Act (42 U.S.C. 1396 et seq.).
       (iii) A medicare supplemental policy (as defined in section 
     1882(g)(1) of the Social Security Act (42 U.S.C. 1395ss et 
     seq.).
       (iv) The health care program for active military personnel 
     under title 10, United States Code.
       (v) The veterans health care program under chapter 17 of 
     title 38, United States Code.
       (vi) The Civilian Health and Medical Program of the 
     Uniformed Services (CHAMPUS), as defined in section 1072(4) 
     of title 10, United States Code.
       (vii) The Indian health service program under the Indian 
     Health Care Improvement Act (25 U.S.C. 1601 et seq.).
       (4) Eligible organization.--The term ``eligible 
     organization'' means an organization that provides health 
     benefits coverage under an eligible health plan.
       (5) Life-threatening condition.--The term ``life-
     threatening condition'' has the meaning given such term under 
     section 201(a)(4).
       (6) Pediatric palliative care.--The term ``pediatric 
     palliative care'' means services of the type to be furnished 
     under the demonstration projects under section 201, including 
     care coordination services (as defined in subsection (a)(1) 
     of such section).
       (7) Pediatric palliative care consultation services.--The 
     term ``pediatric palliative care consultation services'' 
     means services of the type described in section 201(c)(3).
       (8) Secretary.--The term ``Secretary'' means the Secretary 
     of Health and Human Services, acting through the Director of 
     the Agency for Healthcare Research and Quality.
       (b) Nonmedicare Pediatric Palliative Care Demonstration 
     Projects.--
       (1) Establishment.--The Secretary shall establish 
     demonstration projects under this section at the same time as 
     the Secretary establishes the demonstration projects under 
     section 201 and in accordance with the provisions of this 
     subsection to demonstrate the provision of pediatric 
     palliative care and pediatric palliative care consultation 
     services to eligible children who are not entitled to (or 
     enrolled for) coverage under the health plans described in 
     subsection (a)(3)(C).
       (2) Participation.--
       (A) Eligible organizations.--The Secretary shall permit any 
     eligible organization to participate in a demonstration 
     project on a voluntary basis.
       (B) Eligible children.--Any eligible organization 
     participating in a demonstration project shall permit any 
     eligible child enrolled in an eligible health plan offered by 
     the organization to participate in such project on a 
     voluntary basis.
       (c) Services Under Demonstration Projects.--
       (1) Provision of pediatric palliative care and consultation 
     services.--Under a demonstration project, each eligible 
     organization electing to participate in the demonstration 
     project shall provide pediatric palliative care and pediatric 
     palliative care consultation services to each eligible child 
     who is enrolled with the organization and who elects to 
     participate in the demonstration project.
       (2) Availability of administrative grants.--
       (A) In general.--Subject to subparagraph (B), the Secretary 
     shall award grants to eligible organizations electing to 
     participate in a demonstration project for the administrative 
     costs incurred by the eligible organization in participating 
     in the demonstration project, including the costs of 
     collecting and submitting the data required to be submitted 
     under subsection (d)(4)(B).
       (B) No payment for services.--The Secretary may not pay 
     eligible organizations for pediatric palliative care or 
     pediatric palliative care consultation services furnished 
     under the demonstration projects.
       (d) Conduct of Demonstration Projects.--
       (1) Sites.--The Secretary shall conduct demonstration 
     projects in at least 4, but not more than 8, sites.
       (2) Selection of sites.--The Secretary shall select 
     demonstration sites on the basis of proposals submitted under 
     paragraph (3) that are located in geographic areas that--
       (A) include both urban and rural eligible organizations; 
     and
       (B) are geographically diverse and readily accessible to a 
     significant number of eligible children.
       (3) Proposals.--
       (A) In general.--The Secretary shall accept proposals to 
     furnish pediatric palliative care and pediatric palliative 
     care consultation services under the demonstration projects 
     from any eligible organization at such time, in such manner, 
     and in such form as the Secretary may require.
       (B) Application for administrative grants.--If the eligible 
     organization desires to receive an administrative grant under 
     subsection (c)(2), the proposal submitted under subparagraph 
     (A) shall include a request for the grant, specify the amount 
     requested, and identify the purposes for which the 
     organization will use any funds made available under the 
     grant.
       (4) Collection and submission of data.--
       (A) Collection.--Each eligible organization participating 
     in a demonstration project shall collect such data as the 
     Secretary may require to facilitate the evaluation to be 
     completed under subsection (e)(1).
       (B) Submission.--Each eligible organization shall submit 
     the data collected under subparagraph (A) to the Secretary at 
     such time, in such manner, and in such form as the Secretary 
     may require.
       (5) Duration.--The Secretary shall complete the 
     demonstration projects within a period of 5 years that 
     includes a period of 1 year during which the Secretary shall 
     complete the evaluation under subsection (e)(1).
       (e) Evaluation and Reports to Congress and Eligible 
     Organizations.--
       (1) Evaluation.--During the 1-year period following the 
     first 4 years of the demonstration projects, the Secretary 
     shall complete an evaluation of the demonstration projects.
       (2) Reports.--
       (A) Interim report.--Not later than the date that is 2 
     years after the date on which the demonstration projects are 
     implemented, the Secretary shall submit an interim report to 
     Congress and each eligible organization participating in a 
     demonstration project on the demonstration projects.
       (B) Final report.--Not later than the date that is 1 year 
     after the date on which the demonstration projects end, the 
     Secretary shall submit a final report to Congress and each 
     eligible organization participating in a demonstration 
     project on the demonstration projects that includes the 
     results of the evaluation conducted under paragraph (1) 
     together with such recommendations for legislation or 
     administrative action as the Secretary determines is 
     appropriate.

     SEC. 203. AUTHORIZATION OF APPROPRIATIONS.

       (a) In General.--There are authorized to be appropriated--
       (1) $2,500,000, to carry out the demonstration projects 
     under section 201; and
       (2) $2,500,000, to carry out the demonstration projects 
     under section 202, including for awarding grants under 
     subsection (c)(2) of such section.
       (b) Availability.--Sums appropriated under subsection (a) 
     shall remain available, without fiscal year limitation, until 
     expended.
                                 ______