Contact:  Rick Peterson, Manager of News Services, 414/832-6590
For Immediate Release					February 27, 1997
 
$250,000 Grant From Robert Wood Johnson Foundation Funds National Study of
Americans' Values Regarding End-of-Life Care
  
 
APPLETON, WIS. -- It remains one of the nation's more puzzling health  care
dichotomies.  While many people say they do not want heroic measures to  extend
their lives, few actually take the initiative to make their wishes known.  And
even when directives are laid out, family members and attending physicians are
often reluctant to follow them.

Understanding Americans' values and the role they should play in the end-of-
life decision making process is at the heart of a $254,440 grant awarded by the
Princeton, N.J.-based Robert Wood Johnson Foundation to the American Health
Decisions, Inc.

Founded in 1988, AHD is a national consortium of 20 states that sponsors
grassroots discussions and educational forums on the ethical issues of health
care to assure public understanding of the personal and societal implications
of medical, legal and economic policy decisions.    

According to John Stanley, current chairman of the board of AHD and director of
Lawrence University's biomedical ethics program, the grant will fund a six-
month national study aimed at "mapping" people's opinions and values regarding
health care near the end of life.

"A clear articulation of the values and beliefs that underlie Americans'
opinions and attitudes about end-of-life care is the right starting point for
any attempt to improve the care of dying patients," said Stanley.

Starting in March, 38 focus groups representing a cross section of Americans
will be assembled in cities across the country -- large metropolitan areas as
well as rural and small-town locations -- to discuss their opinions and
attitudes regarding the end-of-life care they would want for themselves and
their loved ones.   

In addition to focus group discussions, the AHD research project will include
in-depth telephone interviews with individuals who have recently, or are
currently, facing end-of-life decisions for themselves or a family member.  	

"Focus groups are an extremely effective tool that will allow us to move beyond
surface opinion and uncover the core values and perspectives Americans have on
health care at the end of life," Stanley said.  "The additional telephone
interviews should provide an even deeper understanding of the conflicts and
tensions of individuals who have faced these decisions in their own lives." 

Stanley said the findings of the research project will be released in July and
at an opportune time to benefit two other initiatives:  a project conducted by
the American Medical Association to enhance American physicians' understanding
of, and attentiveness to, a wide range of options for end-of-life care and a
national public education program that will parallel the AMA's project.  

Among the goals of the AMA project are respect for the patients' perspective in
advance care planning and a greater emphasis on palliation-- control of pain
and compassionate comfort care. 

"We're confident this study will provide a starting point for both the
physicians' project and the public education project by outlining Americans'
current understanding of the issues, the language and value assumptions they
use in discussing end-of-life care and the barriers they perceive in having
their decisions carried through," said Stanley.     

In announcing the grant, Stanley said Beverly Tyler, executive director of
Georgia Health Decisions, will serve as the research project director.  Tyler
has conducted extensive focus group research in Georgia during the past five
years on a wide range of health care issues.

Georgia Health Decisions -- a non-profit, non-partisan organization -- is a
national leader in researching and understanding citizens' values on health 
care issues.  Since 1991, GHD has completed more than 150 focus groups and 800
community on such topics as health care reform, definition of a standard
insurance benefits plan, and redesign of Georgia's Medicaid program.  As its
executive director, Tyler has conducted the most comprehensive study of
Georgia's citizens' opinions and attitudes about health care ever undertaken. 

Stanley and Michael Perry, an independent public policy research consultant,
will join Tyler as principal investigators on the project.  Lawrence students
in the biomedical ethics program are likely to be involved in the telephone
interview dimension of the project as well. 

In conjunction with Lawrence's biomedical ethics program, Stanley has 
previously directed the Appleton Consensus Project, a three-year international
conference that produced a set of guidelines for decisions to forgo life-
sustaining treatments that was published in 1992 in the Journal of Medical
Ethics. Stanley is also currently directing the Wisconsin GRUIC Project
(Guidelines for the Responsible Utilization of Intensive Care), a state-wide
initiative involving Wisconsin citizens and health care professionals in
discussions of appropriate use of intensive care.