Suicide Prevention: Efforts to Increase Research and Education in
Palliative Care (Letter Report, 04/30/98, GAO/HEHS-98-128).

Pursuant to a legislative requirement, GAO reported on the extent to
which projects under section 781 of the Public Health Service Act have
furthered the knowledge and practice of palliative care, particularly
with regard to curricula offered and used in medical schools. GAO's
preliminary work showed that no fiscal year (FY) 1998 funding for
section 781 projects would be awarded by its April 30, 1998 reporting
date, so GAO focused on determining: (1) the extent to which the
physician education and training process currently teaches and tests
student competency in palliative care issues; (2) the Department of
Health and Human Services' (HHS) plans for funding palliative care
projects under section 781; and (3) other federal and private palliative
care research and education initiatives.

GAO noted that: (1) physicians receive varying amounts of instruction in
palliative care topics as they progress through 4 years of medical
school and 3 to 8 years of subsequent specialized training in a
residence program; (2) each of the seven palliative care areas in GAO's
survey was required by 56 percent or more of the 125 medical schools
responding to its survey; (3) similarly, about half of the 7,787
specialty and subspecialty residency programs educated students in
end-of-life care; (4) GAO's survey showed that many medical schools are
interested in providing additional instruction and training in
palliative care; (5) about one-third of the schools reported a need to
change their curriculum for addressing palliative care for the
chronically and terminally ill; (6) close to half reported a need to
include more clinical training in managing pain and depression for these
patient populations; (7) HHS officials plan to use $150,000 of the
$452,000 specified for section 781 in the FY 1998 appropriations
conference report to support seven medical education research projects,
including one palliative care project; (8) officials from HHS and the
medical education research center receiving these funds were not able to
specify the amount being spent on the palliative care project because
separate budgets are not developed for each project; (9) of the
remaining section 781 funds, all $302,000 will be used to support
research for improving the distribution and diversity of the health care
workforce; (10) because of the higher priority that HHS has assigned to
this other research, officials do not plan to use any funds for
palliative care research, training, or demonstration projects in 1999;
(11) nevertheless, a substantial amount of research related to
palliative care is being funded in ways other than through section 781;
(12) over the last few years, HHS and private entities have invested
tens of millions of dollars into projects similar to those specified in
the Assisted Suicide Funding Restriction Act; (13) some HHS agencies
have more general projects, not specified in the act, that could also
benefit palliative care in the areas of increasing health care access,
improving quality of care, and advancing biomedical research; and (14)
private foundations and other private organizations have spent millions
of dollars to educate and train health care professionals in palliative
care and improve the quality of care for the terminally and chronically
ill.

--------------------------- Indexing Terms -----------------------------

 REPORTNUM:  HEHS-98-128
     TITLE:  Suicide Prevention: Efforts to Increase Research and 
             Education in Palliative Care
      DATE:  04/30/98
   SUBJECT:  Health care services
             Surveys
             Medical education
             Medical research
             Medical schools
             Physicians
             Diseases
IDENTIFIER:  HHS Health Professional Education Research Program
             
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Cover
================================================================ COVER


Report to Congressional Requesters

April 1998

SUICIDE PREVENTION - EFFORTS TO
INCREASE RESEARCH AND EDUCATION IN
PALLIATIVE CARE

GAO/HEHS-98-128

Palliative Care Research and Education

(108344)


Abbreviations
=============================================================== ABBREV

  AAMC - American Association of Medical Colleges
  AHCPR - Agency for Health Care Policy and Research
  AIDS - acquired immune deficiency syndrome
  AMA - American Medical Association
  HHS - Department of Health and Human Services
  HIV - human immunodeficiency virus
  HRSA - Health Resources and Services Administration
  NIH - National Institutes of Health

Letter
=============================================================== LETTER


B-279326

April 30, 1998

The Honorable James M.  Jeffords
Chairman
The Honorable Edward M.  Kennedy
Ranking Minority Member
Committee on Labor and Human Resources
United States Senate

The Honorable Thomas J.  Bliley
Chairman
The Honorable John D.  Dingell
Ranking Minority Member
Committee on Commerce
House of Representatives

Calls to legalize physician-assisted suicide point to public concern,
supported by several studies, that the current health care system
does not adequately relieve suffering for people with certain health
care problems.  People suffering from terminal or chronic illnesses
or from disabilities are considered especially vulnerable to suicide
because their need or desire for palliative--or comfort--care may not
be adequately met in a health system that focuses on curative care. 
Palliative care encompasses a range of approaches to manage the
physical, psychological, social, and spiritual suffering that may
accompany health conditions that are not responsive to curative
treatments.\1 Its goal is to improve the quality of life for patients
and their families by dealing with issues such as depression and pain
and symptom management. 

Concerned about the rates of suicide among persons whose health
problems are not responsive to curative treatment, the Congress
authorized funding to support the research of palliative care issues
by passing the Assisted Suicide Funding Restriction Act of 1997,\2
which became law on April 30, 1997.  Section 12 of the act amended
section 781 of the Public Health Service Act by adding topics related
to palliative care and suicide prevention to the list of topics that
the Department of Health and Human Services (HHS) can support under
the Health Professional Education Research Program.  Under section
781, HHS can provide funds to public and nonprofit entities for
research on a variety of health profession issues.  The types of
topics authorized by the Assisted Suicide Funding Restriction Act
include those for educating and training health care providers in
palliative care, advancing the biomedical knowledge of pain
management, improving access to hospice programs, and assessing the
quality of palliative care in different health care systems. 

The act requires GAO to report by April 30, 1998, on the extent to
which these section 781 projects have furthered the knowledge and
practice of palliative care, particularly with regard to the
curricula offered and used in medical schools.  Our preliminary work
showed that no fiscal year 1998 funding for section 781 projects
would be awarded by our reporting date.  For this reason, in
consultation with authorizing committee staff, we focused our effort
on determining (1) the extent to which the physician education and
training process currently teaches and tests student competency in
palliative care issues, (2) HHS' plans for funding palliative care
projects under section 781, and (3) other federal and private
palliative care research and education initiatives. 

Our analysis of current educational efforts in palliative care is
based on information obtained from a survey we conducted of all U.S. 
medical schools, surveys conducted by others on U.S.  residency
programs, and discussions with persons involved in the medical
education and training process.  Our discussion of HHS' plans for
funding future palliative care projects under section 781 is based on
information provided by HHS officials and HHS budgetary documents. 
Our information on other palliative care initiatives was obtained
from various HHS entities, private foundations, nonprofit
organizations, and professional associations.  We conducted our work
from November 1997 through March 1998 in accordance with generally
accepted government auditing standards.  See appendix I for a
discussion of our scope and methodology. 


--------------------
\1 For this report, the term "palliative care" refers to these more
specific subjects.  We based our definition on the World Health
Organization's definition of palliative care, which states that
palliative care (1) affirms life and views dying as a normal process,
(2) neither hastens nor postpones death, (3) provides relief from
pain and other distressing symptoms, (4) integrates the psychological
and spiritual aspects of patient care, (5) offers a support system to
help patients live as actively as possible until death, and (6)
offers a support system to help family members cope during a
patient's illness and during their own bereavement. 

\2 P.L.  105-12. 


   RESULTS IN BRIEF
------------------------------------------------------------ Letter :1

Physicians receive varying amounts of instruction in palliative care
topics as they progress through 4 years of medical school and 3 to 8
years of subsequent specialized training in a residency program. 
Each of the seven palliative care areas in our survey was required by
56 percent or more of the 125 medical schools responding to our
survey.  Similarly, about half of the 7,787 specialty and
subspecialty residency programs educated students in end-of-life
care.  Some of the medical schools offered palliative care as a
student elective; some did not offer it at all.  In addition, many
medical schools do not specifically test for competency in palliative
care issues.  However, our survey showed that many medical schools
are interested in providing additional instruction and training in
palliative care.  About one-third of the schools reported a need to
change their curriculum for addressing palliative care for the
chronically and terminally ill.  Close to half reported a need to
include more clinical training in managing pain and depression for
these patient populations. 

HHS officials plan to use $150,000 of the $452,000 specified for
section 781 in the fiscal year 1998 appropriations conference report
to support seven medical education research projects, including one
palliative care project.  Officials from HHS and the medical
education research center receiving these funds were not able to
specify the amount being spent on the palliative care project because
separate budgets are not developed for each project.  Of the
remaining section 781 funds, all $302,000 will be used to support
research for improving the distribution and diversity of the health
care workforce.  Because of the higher priority that HHS has assigned
to this other research, officials do not plan to use any funds for
palliative care research, training, or demonstration projects in
1999. 

Nevertheless, a substantial amount of research related to palliative
care is being funded in ways other than through section 781.  Over
the last few years, HHS and private entities have invested tens of
millions of dollars into projects similar to those specified in the
Assisted Suicide Funding Restriction Act.  Some HHS agencies have
more general projects, not specified in the act, that could also
benefit palliative care in the areas of increasing health care
access, improving quality of care, and advancing biomedical research. 
Private foundations and other private organizations have spent
millions of dollars to educate and train health professionals in
palliative care and improve the quality of care for the terminally
and chronically ill. 


   BACKGROUND
------------------------------------------------------------ Letter :2

Palliative care is an important and emerging issue for health care
providers, educators, and the general public.  As medical advances
increase life expectancy, more and more people suffer from chronic
and progressively disabling diseases that require treatment for
depression and assistance with pain and symptom management.  Some
recent studies have pointed to significant problems within the health
care system that preclude the achievement of the best possible
quality of life for patients and their families.\3 Areas identified
for improvement include education and training for health care
providers, improved pain and symptom management, and access to
appropriate and quality health care services. 

The Assisted Suicide Funding Restriction Act of 1997 contains a
provision designed to focus federal funding on research, training,
and demonstration projects that would address these specific problem
areas.  The act authorizes funding in a number of palliative care
topics (see table 1) and directs the Secretary of HHS to emphasize
palliative medicine among its research and funding priorities under
section 781.  Section 781 is within title VII of the Public Health
Service Act, which authorizes numerous programs for health
professions education and training.  Section 781 was first funded in
1993 to conduct health professions education research in four broad
topic areas related to (1) educational indebtedness, (2) effect of
programs for minority and disadvantaged individuals, (3) extent of
investigations and disciplinary actions by state licensing
authorities, and (4) primary care.  The Bureau of Health Professions
within the Health Resources and Services Administration (HRSA) is the
HHS agency responsible for administering grants funded under section
781 of title VII. 



                          Table 1
          
          Palliative Care Topics Added to Section
            781 of the Public Health Service Act

General topic       Specific provision
------------------  --------------------------------------
Research            Assess the quality of care received by
                    patients with disabilities or terminal
                    or chronic illness by measuring and
                    reporting specific outcomes.

                    Compare coordinated health care (which
                    may include coordinated rehabilitation
                    services, symptom control,
                    psychological support, and community-
                    based support services) to traditional
                    health care delivery systems.

                    Advance biomedical knowledge of pain
                    management.

Training            Train health care practitioners in
                    pain management, depression
                    identification and treatment, and
                    issues related to palliative care and
                    suicide prevention.

                    Train the faculty of health
                    professions schools in pain
                    management, depression identification
                    and treatment, and issues related to
                    palliative care and suicide
                    prevention.

                    Develop and implement curricula
                    regarding disability issues, including
                    living with disabilities, living with
                    chronic or terminal illness, attendant
                    and personal care, assistive
                    technology, and social support
                    services.

Demonstration       Reduce restrictions on access to
projects            hospice programs.

                    Fund home health care services,
                    community living arrangements, and
                    attendant care services.
----------------------------------------------------------

--------------------
\3 "A Controlled Trial to Improve Care for Seriously Ill Hospitalized
Patients:  The Study to Understand Prognoses and Preferences for
Outcomes and Risks of Treatments (SUPPORT)," SUPPORT Principal
Investigators, The Journal of the American Medical Association, Vol. 
274, No.  20 (Nov.  1995); Approaching Death:  Improving Care at the
End of Life, Committee on Care at the End of Life, Institute of
Medicine (Washington, D.C.:  National Academy Press, June 1997);
Caring for the Dying:  Identification and Promotion of Physician
Competency, American Board of Internal Medicine (1996). 


   EXTENT OF PALLIATIVE CARE IN
   MEDICAL EDUCATION VARIES
   CONSIDERABLY
------------------------------------------------------------ Letter :3

The extent of palliative care instruction varies considerably across
and within the three major phases of the physician education and
training process.  The first phase is undergraduate medical
education--or medical school--where students typically receive 2
years of classroom, or didactic, instruction followed by 2 years of
clinical training.  The United States has 144 accredited medical
schools.\4 The second phase is graduate medical education--or
residency training--where residents receive 3 to 8 years of clinical
training in a medical specialty.  The United States has over 7,700
accredited residency programs.  The third phase is continuing medical
education, which provides physicians who are already practicing
medicine with the education and training necessary to maintain or
learn new skills.  Continuing medical education courses are provided
primarily by medical schools and state medical societies, but such
courses are also provided by medical associations and consultants. 
Throughout these three phases, a variety of formal accreditation and
certification processes are used to test student competency and to
judge the quality of instruction and training.\5


--------------------
\4 This includes 125 allopathic medical schools leading to a doctor
of medicine degree and 19 osteopathic medical schools leading to a
doctor of osteopathy degree.  These schools include three allopathic
medical schools in Puerto Rico.  The University of Illinois College
of Medicine, one of the 125 allopathic medical schools, has medical
schools located in Chicago, Peoria, Rockford, and Urbana-Champaign. 
The American Association of Medical Colleges (AAMC) considers the
four separate locations as one accredited medical school.  However,
when they conduct their annual survey of medical schools, they send
surveys to and summarize survey data from each location separately. 
In conducting our work, we followed AAMC's practice. 

\5 At the undergraduate level, allopathic medical schools are
accredited by the Liaison Committee for Medical Education and
osteopathic schools are accredited by the American Osteopathic
Association.  At the graduate level, allopathic residency programs
are accredited by the Accreditation Council for Graduate Medical
Education and osteopathic programs are accredited by the American
Osteopathic Association. 


      EXTENT OF PALLIATIVE CARE
      EDUCATION AT MEDICAL SCHOOLS
      IS MIXED
---------------------------------------------------------- Letter :3.1

Our review at medical schools showed mixed amounts of attention given
to palliative care issues.  Accrediting organizations have generally
steered away from standards requiring instruction in topics as
specific as pain management, preferring to leave such matters to the
discretion of the faculty at each school.  To determine the extent to
which the schools addressed these topics, we surveyed all U.S. 
medical schools on seven palliative care topics. 

For each of the seven palliative care topics we asked about, at least
half of the 125 U.S.  medical schools that responded to our survey
said they had some degree of required instruction.  (See fig.  1.)
Instruction in palliative care for chronic illness was required by
the fewest number of schools (56 percent).  For the remaining topics,
the percentage of schools requiring the topic was higher; for
example, over three-quarters required instruction in the topic of
pain management for the terminally or chronically ill, and 94 percent
required instruction in depression identification and treatment.  Our
survey responses showed that some schools have added these topics
fairly recently.  For example, 24 percent of schools reported adding
pain management as a required subject within the last 3 years.  (For
a more detailed summary of our medical school survey results, see
app.  II.)

   Figure 1:  Percentage of
   Medical Schools Requiring
   Instruction in Palliative Care
   Topics

   (See figure in printed
   edition.)

\a Palliative care encompasses many aspects of noncurative care,
including the other topics in our survey.  To capture the range of
possible instruction, our survey included this broad topic as well as
the more specific topics. 

\b Interdisciplinary health care for end of life is a multidiscipline
team approach that incorporates a range of specialists and types of
caregivers to provide comprehensive and coordinated care at the end
of life. 

\c Symptom management is the treatment of patients' emotional and
physical symptoms other than pain, such as confusion, fatigue,
nausea, shortness of breath, loss of appetite, and muscle wasting. 

Many schools reported a need to change palliative care instruction,
particularly in the area of clinical training.  Overall, 30 percent
of schools reported a need to change their classroom curriculum in
palliative care, and close to 50 percent reported wanting to provide
students with more hands-on training experience in diagnosing and
treating patients with pain due to chronic or terminal illness.\6

Evaluation processes vary in the extent to which they measure
students' knowledge of palliative care issues.  (See fig.  2.) The
percentage of medical schools that reported testing competency in the
topics we surveyed ranged from 36 percent for interdisciplinary
health care for end of life to 72 percent for identifying and
treating depression. 

   Figure 2:  Percentage of
   Medical Schools Testing
   Competency in Palliative Care
   Topics

   (See figure in printed
   edition.)

\a Palliative care encompasses many aspects of noncurative care,
including the other topics in our survey.  To capture the range of
possible instruction, our survey included this broad topic as well as
the more specific topics. 

\b Interdisciplinary health care for end of life is a multidiscipline
team approach that incorporates a range of specialists and types of
caregivers to provide comprehensive and coordinated care at the end
of life. 

\c Symptom management is the treatment of patients' emotional and
physical symptoms other than pain, such as confusion, fatigue,
nausea, shortness of breath, loss of appetite, and muscle wasting. 

Many medical schools also rely heavily on national examinations--the
U.S.  Medical Licensing Examination or the National Board of
Osteopathic Medical Examiners' exam--to evaluate student knowledge.\7
A study is currently under way to examine the degree to which the
U.S.  Medical Licensing Examination tests student knowledge in
end-of-life care issues and to develop a method to evaluate student
performance on these test questions in the future. 


--------------------
\6 While it was beyond the scope of our work to evaluate why such
changes had not yet occurred, changing medical school curriculum
presents a significant challenge, according to medical education
experts.  Because the time available for instruction and training is
fixed, providing more time for palliative care education would allow
less time for instruction and training in other areas. 

\7 The U.S.  Medical Licensing Examination is a three-step
examination administered by the National Board of Medical Examiners
in collaboration with the Federation of State Medical Boards.  The
National Board of Osteopathic Medical Examiners' exam, which is
administered by each state's licensing board, also has three steps. 
Medical schools typically provide the education and training to pass
the first two steps, which test knowledge of basic sciences and
clinical sciences, respectively.  Three-fourths of all medical
schools require students to pass step 1; one-half also require
students to pass step 2.  Step 3 is generally taken in the first or
second year of a residency program. 


      PALLIATIVE CARE EDUCATION IN
      RESIDENCY PROGRAMS VARIED
---------------------------------------------------------- Letter :3.2

Our review also indicated that attention to palliative care issues in
residency programs varied as well.  Accrediting bodies at the
graduate level generally require some specific areas of instruction,
although, as in medical schools, the primary responsibility for
curriculum and training content is assumed by the program director
and faculty.\8 Required topics of instruction, such as domestic
violence, vary by specialty, and few specialties have requirements
including specific palliative care topics.\9

Because of the large number of accredited residency programs in the
United States, we did not administer a survey similar to the one we
developed for medical schools.  We relied on existing surveys done by
professional associations that asked residency programs to report
whether the subjects of end-of-life care and suicide were included in
their training programs. 

The American Medical Association's (AMA) 1996 survey showed that
nearly half of the nation's 7,787 residency programs\10 include
instruction in end-of-life care and over a third teach issues related
to suicide.\11 While historical data on the subject of suicide
prevention are not available, AMA's data show greater numbers of
residency programs now offer instruction in end-of-life care than in
the past.  In 1996, nearly 50 percent of residency programs taught
end-of-life care, compared with 38 percent in 1994. 

To some extent, the percentage of residency programs that taught
palliative care subjects corresponded to the degree to which these
skills might be needed in the specialty area covered by the program. 
For example, 93 percent of family practice residency programs in the
subspecialty of geriatrics reported teaching end-of-life care, while
only 10 percent of pathology residency programs in the subspecialty
of pediatric pathology reported teaching the subject.  However, the
percentage of programs that reported teaching end-of-life care was
surprising for some specialties for which the need for physicians
skilled in end-of-life care seems more evident.  For example, nearly
half of internal medicine residency programs in the subspecialty of
oncology reported not teaching end-of-life care, although physicians
treating patients with cancer often deal with terminal patients. 
(See app.  III for a detailed summary of AMA's 1996 residency program
survey results.)

The knowledge and skill of resident physicians is evaluated by each
residency program's internal evaluations and national examinations. 
These examinations include the U.S.  Medical Licensing Examination\12

as well as examinations some physicians take to become certified in a
medical specialty.\13 The extent to which board examinations include
questions related to palliative care has not been quantified, and
student performance on palliative care questions that may be included
on the exams has not been evaluated. 


--------------------
\8 The Accreditation Council for Graduate Medical Education is
currently studying the feasibility of using educational outcomes in
the accreditation process and plans to survey programs to identify
models where outcomes are being successfully used.  It is unknown at
this time whether models will include palliative care outcomes. 

\9 Accreditation standards for family practice residency programs
require general training on providing patients and families with
coping skills for serious illness and loss.  Pediatric residencies
have general standards requiring content related to the impact of
chronic diseases, terminal conditions, and death on patients and
their families.  Accreditation standards for internal medicine
residency programs will encourage training specifically in pain and
symptom management starting in July 1998, but training in these areas
will not be required. 

\10 Includes residency programs for allopathic medicine only;
information for osteopathic residency programs was not available. 

\11 The AMA surveys do not define "end-of-life care." Residency
programs interpret end-of-life care and determine whether their
curriculum requires its instruction.  Because the surveys are not
designed to address specific palliative care issues; we were not able
to identify whether specific palliative care topics are required
subjects.  For example, residency programs teaching end-of-life care
may or may not include the specific topics of pain and symptom
management, and it is unknown whether instruction is based on
clinical training, classroom instruction, or both. 

\12 Residents generally take the third and final step of this
examination, which is necessary to obtain a medical license, during
the first 2 years of their residency program. 

\13 Examinations are administered by medical specialty boards.  While
board certification is not required to practice a medical specialty,
it denotes that recipients have the necessary knowledge, skills, and
attitudes essential for the provision of excellent care within that
specialty. 


      FEW CONTINUING MEDICAL
      EDUCATION PROGRAMS ARE
      DEDICATED TO PALLIATIVE CARE
---------------------------------------------------------- Letter :3.3

The availability of continuing medical education courses that focus
on palliative care issues for terminally or chronically ill people
appears limited.  Many states and medical associations require
physicians to continue their medical education to maintain their
medical license or membership benefits, but they generally do not
require courses on specific topics such as palliative care.  Because
of the number and variety of continuing medical education providers,
information on the existence of continuing medical education courses
dedicated to palliative care issues was not readily available. 
However, we queried the AMA's database of over 2,000 accredited
continuing medical education activities and found that few
specifically addressed palliative care.  In addition, an official
with the American Osteopathic Association said there are few
continuing medical education courses related to palliative care for
doctors of osteopathy.  An example of a course that specifically
addresses palliative care issues is a self-study program developed by
the American Academy of Hospice and Palliative Medicine, which covers
a variety of palliative care topics.  Recognizing a need for more
courses in this area, private efforts are under way to develop more
conferences on end-of-life care issues as well as promote those that
already exist. 


   PLANS TO USE SECTION 781 FOR
   PALLIATIVE CARE PROJECTS ARE
   LIMITED
------------------------------------------------------------ Letter :4

The fiscal year 1998 conference committee report on HHS
appropriations specifies $452,000 for section 781.  Officials in HRSA
plan to use $150,000 of this amount for seven medical education
projects, including one project on palliative care.  All seven
projects will be conducted by one medical education research center. 
HRSA plans to provide the funds for the seven projects in May 1998. 
Because budgets are not maintained separately for each project, HRSA
and medical education research center officials were not able to
specify the amount of funding dedicated for the palliative care
project.  The project will assess current medical school courses on
death and dying to determine if they meet recommended methods for
teaching end-of-life care. 

The remaining $302,000 will be used to support projects focused on
increasing the knowledge about the needs and resources of the
nation's health professions.  Information obtained through these
projects will be used to assess the effectiveness of current
workforce programs.  HRSA officials said they consider this research
as higher in priority.  In addition, the officials said that due to
the importance of health workforce research, future funding of
palliative care projects in medical education is uncertain.  HRSA did
not include palliative care research for medical education in its
fiscal year 1999 budget justification. 

HRSA officials do not plan to fund any of the other types of
palliative care topics authorized under the Assisted Suicide Funding
Restriction Act.  They said these other initiatives, such as
demonstration projects to reduce restrictions on access to hospice
programs, are not related to the traditional focus of title VII to
support health professions education and training.  Projects of these
types are generally administered by HHS agencies other than HRSA. 
For example, the act authorizes research funding under section 781
for advancing the biomedical knowledge of pain management, which has
been primarily the domain of the National Institutes of Health (NIH). 
The act also authorizes research under section 781 for using specific
outcome measures to assess the quality of care for patients with
disabilities or terminal or chronic illness; measuring outcomes and
quality of care is an area of expertise for HHS's Agency for Health
Care Policy and Research (AHCPR). 


   OTHER FEDERAL AND PRIVATE
   PALLIATIVE CARE INITIATIVES
   OUTSIDE SECTION 781 ARE MORE
   SUBSTANTIAL
------------------------------------------------------------ Letter :5

Several HHS agencies fund projects related to palliative care under
their own program authority.  Some of these projects directly address
the types of research, training, and demonstration projects
authorized in the Assisted Suicide Funding Restriction Act, including
the following: 

  -- Research authorized by the act includes projects to advance
     biomedical knowledge of pain management and assess the quality
     of care for patients with terminal illness by measuring and
     reporting specific outcomes.  NIH--the federal government's
     primary focal point for biomedical research--estimates that in
     fiscal year 1997, it spent over $82 million on various types of
     pain management research.  NIH also established a pain research
     consortium to enhance and coordinate pain research across the
     various components of NIH.  NIH's National Institute of Mental
     Health has also begun suicide prevention research projects. 
     HHS' Assistant Secretary for Planning and Evaluation is
     providing $174,000 to evaluate the quality of hospice care in
     nursing homes--a topic directly related to this provision. 

  -- Training authorized by the act includes projects to teach
     physicians about palliative care issues.  HRSA's HIV/AIDS Bureau
     is in the process of completing an evaluation of a Canadian
     instruction module on palliative care and plans to make
     recommendations on how the module should be modified for use in
     the United States.  AHCPR, which funds projects to improve the
     effectiveness of health care services, issued guidance in 1994
     on management of cancer pain that included discussions and
     recommendations on palliative therapies used to relieve or ease
     pain. 

  -- Demonstrations authorized by the act include projects to fund
     home health care services, community living arrangements, and
     attendant care services.  The Health Care Financing
     Administration, which is responsible for administering Medicare
     and Medicaid, has supported these types of demonstration
     projects.  For example, states can obtain waivers to use
     Medicaid funds for home health care services, community living
     arrangements, and attendant care services, which are not
     normally covered by Medicaid but that are considered necessary
     to care for and improve the quality of life for medically
     fragile populations. 

Other federal projects do not have an explicit objective related to
palliative care and suicide prevention but provide opportunity for
benefit in this area.  For example, AHCPR has many research
initiatives that could address improving palliative care for patient
populations most prone to suicide.  AHCPR and the American
Association of Health Plans will provide $7 million over 3 years to
assess the quality of care for patients with chronic diseases under
varying features of managed care organizations.  In addition, AHCPR
has initiatives to develop and improve quality of care measures for
health care providers and health service delivery, which could
include outcomes for palliative care in the future.  AHCPR's Medical
Treatment Effectiveness Program--which has traditionally focused on
identifying and promoting the most effective treatments to prevent,
diagnose, or treat diseases such as cancer, AIDS, or cardiovascular
disease--could also incorporate palliative care for these and other
terminal or chronic illnesses in future research projects. 

Private foundations, nonprofit organizations, and professional
associations have recognized palliative care as an emerging and
important area of medicine and research.  As a result, a variety of
private initiatives are under way that cover many of the areas of
research, training, and demonstration projects described in the act. 
The two most comprehensive initiatives we identified are Last Acts,
funded by the Robert Wood Johnson Foundation, and Project on Death in
America, sponsored by the Open Society, a foundation created by
philanthropist George Soros. 

  -- Last Acts aims to raise awareness of the need to improve the
     care of persons who are dying, improve communication and
     decisionmaking related to end-of-life care, and change the way
     health care and health care institutions approach care for dying
     people.  Last Acts has task forces and committees to pursue a
     variety of issues, including improving provider education on
     palliative care and developing outcomes and evaluation tools for
     palliative care. 

  -- Project on Death in America is a $30 million campaign to
     transform the culture of dying by supporting projects and
     fostering change in the provision of end-of-life care, public
     and professional education, and public policy.  It conducts its
     own projects and provides grants to other individuals and
     institutions.  Its major project is a $7 million faculty
     scholars program for innovative clinical care, research, and
     educational programs to improve the care of the dying. 

Private entities also provide funding for a variety of other projects
in palliative care--some with a specific focus in physician education
or improving access and quality to palliative care.  (See table 2). 



                          Table 2
          
              Selected Private Initiatives in
                      Palliative Care

Type of project     Project description
------------------  --------------------------------------
Research            Dartmouth College is conducting a
                    study to learn more about the dying
                    experience of seriously ill adults and
                    will develop descriptions of "good"
                    and "bad" dying experiences.

                    The University of California, San
                    Diego, is conducting a study to
                    measure the effects of managed care on
                    the type and volume of care delivered
                    to terminally ill Medicare
                    beneficiaries. The study will compare
                    the treatment received in fee-for-
                    service and managed care settings.

                    The Center for Ethics in Health Care
                    Research on End-of-Life Care at Oregon
                    Health Sciences University is
                    comparing end-of-life care provided in
                    acute care hospitals, nursing homes,
                    and home hospice.

Training            The AMA and the Robert Wood Johnson
                    Foundation are sponsoring a 2-year,
                    $1.4 million project to educate
                    practicing physicians on the essential
                    clinical competencies in end-of-life
                    care.

                    The American Academy of Hospice and
                    Palliative Medicine has developed a
                    six-part self-study program for
                    practicing physicians. The six
                    training modules provide education on
                    such topics as alleviating
                    psychological and spiritual pain in
                    the terminally ill.

                    The American Board of Hospice and
                    Palliative Medicine's certification
                    exam for hospice and palliative
                    medicine tests physicians' palliative
                    care knowledge and skills.

Demonstration       MediCaring, a project being developed
projects            by the Center to Improve Care of the
                    Dying at The George Washington
                    University, is designed to extend the
                    concept of "hospice" to include a
                    broader population of terminally ill
                    individuals than those currently
                    benefiting from the Medicare hospice
                    program.

                    Promoting Excellence in End-of-Life
                    Care is a $12 million Robert Wood
                    Johnson Foundation initiative to
                    conduct a variety of demonstration
                    projects aimed at fostering long-term
                    changes in care for the dying.

                    The Hospital Palliative Care
                    Initiative, a multiyear, $1.1 million
                    project conducted by the United
                    Hospital Fund of New York, is aimed at
                    promoting new hospital-based
                    palliative care services in New York
                    City hospitals. Projects have been
                    funded in five hospitals.
----------------------------------------------------------

   AGENCY COMMENTS
------------------------------------------------------------ Letter :6

We provided a draft of this report to the Secretary of HHS for review
and comment.  Although we did not receive comments in time for
publication, HRSA and NIH officials informed us that they generally
concurred with the report's findings.  Additionally, NIH officials
stated that a conscious effort is needed to change the curricula of
health professions education schools to sensitize providers about the
needs of the chronically ill and disabled patients.  In particular,
they emphasized that attention needs to be given to pain management,
depression, and symptom management.  In addition, officials from
HRSA, NIH, AHCPR, and the Office of Public Health and Science
provided technical comments, which we incorporated as appropriate. 


---------------------------------------------------------- Letter :6.1

We are sending copies of this report to the Secretary of HHS,
interested congressional committees, and other interested parties. 
We will also make copies available to others on request. 

The information contained in this report was developed by Frank
Pasquier, Assistant Director; Timothy S.  Bushfield; and Lacinda
Baumgartner.  Please contact me at (202) 512-6543 or Frank Pasquier
at (206) 287-4861 if you or your staff have any questions. 

Sincerely yours,

Bernice Steinhardt
Director, Health Services Quality
 and Public Health Issues


SCOPE AND METHODOLOGY
=========================================================== Appendix I

We discussed the extent that palliative care issues were taught and
tested in medical schools, residency programs, and continuing medical
education with representatives from cognizant professional
associations including the AMA, the American Osteopathic Association,
the AAMC, the American Association of Colleges of Osteopathic
Medicine; faculty from various educational institutions;
representatives from entities administering national examinations
necessary for medical licensure and board certification, such as the
National Board of Medical Examiners and the American Board of
Internal Medicine; representatives from accrediting bodies for
medical schools, residency programs, and continuing education,
including the Liaison Committee for Medical Education, the
Accreditation Council for Graduate Medical Education, and the
Accreditation Council for Continuing Medical Education; and
recognized experts in the field of palliative medicine. 

To gather more specific information about the extent to which the
palliative care subjects addressed in the Assisted Suicide Funding
Restriction Act were taught in medical schools, we developed and
administered a survey to all accredited U.S.  allopathic and
osteopathic medical schools regarding their curriculum, training, and
testing of student knowledge in pain management, depression
identification and treatment, and palliative care.  After reviewing
literature on the subject and consulting with experts, we selected
seven topics to capture the range of possible instruction.  Our
topics included both the broad topic of palliative care and more
specific topics, such as pain management.  While the specific topics
are components of palliative care, they do not individually encompass
the broader concept of palliative care.  For this reason, we asked
the schools to report on each topic separately. 

In conducting our survey of medical schools, we used mailing lists
provided by AAMC and the American Association of Colleges of
Osteopathic Medicine that they use to conduct annual medical school
curriculum surveys.  Our response rate was 85 percent.  Results are
self-reported, and we did not verify or standardize responses among
schools.  A summary of the survey results is shown in appendix II. 

Due to the large number of residency programs and our reporting time
frames to the Congress, we did not conduct a similar survey of these
programs.  However, the AMA provided us with related information
reported in its annual survey of 7,787 residency programs accredited
by the Accreditation Council for Graduate Medical Education and
combined specialty residency programs.  The survey covers allopathic
programs only.  Residency programs responding to this survey in 1996
reported whether the general subjects of end-of-life care and suicide
were included in their curricula.  More detailed data on subjects
specifically related to pain management, depression identification
and treatment, and palliative care were not available.  AMA survey
data did not include information on whether residency programs tested
student competency in particular subject areas. 

We discussed HHS' plans for awarding palliative care grants under
section 781 with representatives responsible for administering these
grants in the HRSA's Bureau of Health Professions.  We also reviewed
HRSA's plans for funding section 781 projects in HRSA's 1998 and 1999
Justification of Estimates for Appropriations Committees. 

We discussed other federal and private palliative care research and
education initiatives funded outside section 781 with HHS agencies
and private entities involved in similar palliative care activities. 
HHS agencies or offices we spoke with included AHCPR, NIH, the Health
Care Financing Administration, and the Office of the Assistant
Secretary for Planning and Evaluation.  Private entities we obtained
information from regarding ongoing palliative care projects included
foundations, such as the Robert Wood Johnson Foundation; nonprofit
organizations, such as the Open Society, the United Hospital Fund of
New York, and The George Washington University's Center to Improve
Care of the Dying; and professional associations, including AMA's
Ethics Institute, the American Academy of Hospice and Palliative
Medicine, and the American Board of Hospice and Palliative Medicine. 
The federal and private palliative care projects we identified are
examples of the various types of projects being conducted; they are
not intended to be a comprehensive listing of palliative care
projects. 


U.S.  MEDICAL SCHOOL SURVEY
RESULTS
========================================================== Appendix II

We conducted a survey of all medical schools--both allopathic and
osteopathic--in the United States.  We asked each school about the
extent to which their didactic--or classroom--instruction and
clinical training addressed palliative care topics.  We received
responses from 125--or 85 percent--of these schools.  Tables II.1
through II.3 summarize the results of this survey. 



                                         Table II.1
                          
                             Survey Results Regarding Classroom
                                        Instruction

                                               Approximate
                            Percent offering     hours of
                             instruction\a    instruction\b
                            ----------------  --------------
                                                                         Percent
                                                               Percent  respondi
                                                                  that   ng that   Percent
                   Percent                                       added  a change      that
                       not                                     subject    in the      test
                  offering      As a   As an                   in last  curricul   student
Instruction       instruct  requirem  electi           Media         3     um is  competen
topics                 ion       ent      ve    Range      n   years\c    needed      cy\d
----------------  --------  --------  ------  -------  -----  --------  --------  --------
Depression              3%       94%     23%    1-104      6        8%        7%       72%
 identification
 and treatment
Pain management          5        78      38      .5-      4        24        20        61
 for terminal                                    48.5
 and chronic
 illness
Palliative care         19        56      41    .5-57      3        22        30        56
 for chronic
 illness
Palliative care         10        62      44    .5-24      2        20        31        48
 for terminal
 illness
Symptom                 20        69      25      .5-      4        12        20        53
 management for                                 129.5
 chronic illness
Symptom                 18        64      30   .25-36      2        14        22        45
 management for
 terminal
 illness
Interdisciplinar        17        62      33     1-30      3        20        26        36
 y health care
 for end of life
------------------------------------------------------------------------------------------
\a Some schools reported offering instruction as both a requirement
and an elective (schools could offer more than one course for a given
topic); as a result, some combined percentages may exceed 100
percent. 

\b Not all surveyed schools that taught these topics reported
approximate hours; as a result, range and median only reflect those
schools that did report approximate hours. 

\c Only responses from schools that reported offering a topic as a
requirement or an elective were included in the calculation. 

\d Only responses from schools that reported offering a topic as a
requirement were included in the calculation. 



                         Table II.2
          
           Survey Results Regarding the Types of
          Patients Students Treat During Clinical
                          Training

                            Percent offering
                               experience
                             diagnosing and
                          treating patients\a
                          --------------------
                 Percent                           Percent
                     not                        responding
                offering        As a             that more
                training  requiremen     As an    training
              experience           t  elective   is needed
------------  ----------  ----------  --------  ----------
Terminal              9%         72%       33%         43%
 illness
Pain due to           12          64        38          46
 chronic
 illness
Pain due to           12          63        37          47
 terminal
 illness
Depression            11          75        27          39
 due to
 terminal or
 chronic
 illness
----------------------------------------------------------
\a Some schools reported offering instruction as both a requirement
and an elective; as a result, some combined percentages may exceed
100 percent. 



                         Table II.3
          
          Types of Settings Where Students Receive
                     Clinical Training

                             Percent offering
                               students an
                              opportunity to
                                 care for
                                patients\a
                            ------------------
                   Percent
                       not                         Percent
                  offering                      responding
                  training      As a             that more
                  experien  requirem     As an    training
                        ce       ent  elective   is needed
----------------  --------  --------  --------  ----------
In a hospice           22%       15%       60%         46%
As part of an           28        19        52          49
 interdisciplina
 ry team
 providing end-
 of-life care
----------------------------------------------------------
\a Some schools reported offering instruction as both a requirement
and an elective. 


U.S.  RESIDENCY PROGRAM SURVEY
RESULTS
========================================================= Appendix III

The AMA surveyed 7,787 residency programs in the United States in
1996.  We obtained data on the number of programs that included
end-of-life care and suicide prevention topics. 



                                        Table III.1
                          
                           U.S. Residency Programs Teaching End-
                            of-Life Care and Suicide Prevention

                                                                       Percent      Percent
                                            Number of                 teaching    teaching\
                                             resident   Number of      end-of-      suicide
Specialty/subspecialty\a                   physicians    programs    life care   prevention
----------------------------------------  -----------  ----------  -----------  -----------
Allergy and immunology                            214          80          40%          26%
Clinical and laboratory immunology                 15          15           40           20
Anesthesiology                                  3,998         150           43           33
Critical care medicine                             87          54           69           39
Pain management                                   238          93           53           37
Colon and rectal surgery                           49          31           39           42
Dermatology                                       851         101           35           34
Dermatopathology                                   54          41           27           24
Emergency medicine                              3,034         116           77           53
Family practice                                10,049         474           89           58
Geriatric medicine                                 22          14           93           29
Sports medicine                                    33          27           22           26
Internal medicine                              21,298         417           88           44
Cardiovascular disease                          2,244         202           48           25
Clinical cardiac electrophysiology                 65          68           12           12
Critical care medicine                            154          56           71           25
Endocrinology, diabetes, and metabolism           378         136           35           22
Gastroenterology                                  917         176           41           24
Geriatric medicine                                220          89           82           26
Hematology                                        163          49           45           24
Hematology and oncology                           628          99           64           30
Infectious disease                                548         143           39           19
Nephrology                                        609         137           47           24
Oncology                                          277          59           53           29
Pulmonary disease                                 257          69           74           30
Pulmonary disease and critical care               702          98           62           20
 medicine
Rheumatology                                      266         114           39           22
Sports medicine                                     4           1            0          100
Medical genetics                                   39          18           17           22
Neurological surgery                              854          99           41           30
Neurology                                       1,449         122           44           38
Child neurology                                   150          75           32           28
Clinical neurophysiology                          105          49            0            0
Nuclear medicine                                  151          82           21           28
Obstetrics and gynecology                       4,941         267           68           36
Ophthalmology                                   1,532         135           33           25
Orthopedic surgery                              2,790         157           43           31
Adult reconstructive orthopedics                   14          12           25           25
Foot and ankle orthopedics                          1           1            0            0
Hand surgery                                       87          53           30           19
Musculoskeletal oncology                            4           8           38           25
Orthopedic sports medicine                         86          58           24           17
Orthopedic surgery of the spine                    19          15           20           33
Orthopedic trauma                                   9           5           60           60
Pediatric orthopedics                              23          28           14           21
Otolaryngology                                  1,197         105           39           38
Pathology--anatomic and clinical                2,675         180           23           28
Blood banking and transfusion medicine             40          47           19           28
Chemical pathology                                  4           7           14           14
Cytopathology                                      74          68           21           26
Forensic pathology                                 47          39           15           28
Hematology                                         51          54           13           17
Immunopathology                                     6           9           11            0
Medical microbiology                                5           9           33           33
Neuropathology                                     37          47           13           28
Pediatric pathology                                12          20           10           25
Selective pathology                                46           9            0           22
Pediatrics                                      7,618         216           61           39
Neonatal and perinatal medicine                   404         101           50           15
Pediatric cardiology                              233          48           40           23
Pediatric critical care medicine                  251          63           75           24
Pediatric endocrinology                           113          63           25           24
Pediatric gastroenterology                        113          49           20           18
Pediatric hematology and oncology                 252          65           35           23
Pediatric nephrology                               74          46           43           24
Pediatric pulmonology                              90          44           52           16
Physical medicine and rehabilitation            1,151          81           49           37
Plastic surgery                                   464          99           41           25
Hand surgery                                       17          18           28           17
Preventive medicine                               381          89           21           25
Psychiatry                                      4,743         198           56           59
Addiction psychiatry                               16          12           25           42
Child and adolescent psychiatry                   677         118           31           58
Geriatric psychiatry                               82          44           68           41
Radiation oncology                                493          82           38           34
Radiology--diagnostic                           3,991         204           32           38
Neuroradiology                                    189          87           33           38
Nuclear radiology                                  34          33           21           24
Pediatric radiology                                63          48           25           21
Vascular and interventional radiology             148          70           24           27
Surgery--general                                7,921         267           61           39
Hand surgery                                       24           2           50           50
Pediatric surgery                                  48          32           22           31
Surgical critical care                             86          52           75           33
Vascular surgery                                  131          78           46           40
Thoracic surgery                                  334          92           38           34
Urology                                         1,098         121           50           36
Pediatric urology                                  10          10           20           40
Transitional year                               1,334         155           69           36
Internal medicine and emergency medicine           65           9           78           67
Internal medicine and family practice              16           2           50           50
Internal medicine and neurology                    16          12           42           17
Internal medicine and pediatrics                1,300          98           76           42
Internal medicine, physical medicine,              51          13           69           46
 and rehabilitation
Internal medicine and preventive                    3           3           33           33
 medicine
Internal medicine and psychiatry                   78          21           67           67
Neurology, diagnostic radiology, and                0           4            0            0
 neuroradiology
Neurology, physical medicine, and                   4           3            0            0
 rehabilitation
Pediatrics and emergency medicine                  23           4           75           75
Pediatrics and physical medicine and               45          18           50           22
 rehabilitation
Pediatrics and child and adolescent                54          10           50           50
 psychiatry
Psychiatry and family practice                      7          10           40           40
Psychiatry and neurology                            9           6           50           50
===========================================================================================
Total                                          98,076       7,787          n/a          n/a
-------------------------------------------------------------------------------------------
Note:  Data for specialties do not include numbers and percents for
subspecialties.  While subspecialties fall under specific
specialties, separate residency programs exist at both the specialty
and subspecialty level. 

\a Subspecialties are indented. 

Source:  Data are extracted from the AMA's annual survey of (1) U.S. 
graduate medical education programs accredited by the Accreditation
Council for Graduate Medical Education and (2) combined specialty
programs as of December 31, 1996.  Further information on the AMA's
1996 survey is published in the Journal of the American Medical
Association, Vol.  278, No.  9 (Sept.  3, 1997). 


*** End of document. ***