Policy at the Grassroots: Community-Based Participation in Health Care Policy DORIS M. WILLIAMS,
American Health Decisions is a developing social movement that aims to work at the grassroots level to educate people about issues and problems in health care and to promote public involvement in decision making about health policy. The movement offers nurses opportunities to expand their traditional commitment to involving people in decisions about their health. By promoting the development of the movement, nurses can contribute to the creation of a structured process of direct public participation in policy decisions related to health care. Nurses may have a special role to play in the movement by promoting the participation of low-income people. (Index words: Community decision making; Health decisions; Health planning; Health policy; Public participation) J Prof Nurs 7:271-276, 7997. Copyright 0 1991 by W.6.
SaundersCompany
H
Because of the possibilities
offer for involving that affect them, the progress
dency
in the health
traditionally in decisions
health decisions
will be challenged
segment
populations
process of community and policy-making.
movement
sions about health
be gaining
momentum
can Health
Decisions,
this.
Where
1985;
Ray,
difficult
in the United may provide programs
States, Ameri-
a basis for accom-
reflecting
the move-
ment’s aims have been established, they provide a vehicle for the public expression of private values related to health care decisions. In one instance, incorporation of such grassroots-level values into a health policy-making process has been legislatively man*Nursing Department, Chemeketa Community College, Salem, OR. Address correspondence to Dr Williams: Nursing Department, Chemeketa Community College, Salem, OR 97309. Copyright 0 1991 by W.B. Saunders Company 8755-7223/91/0705-0009$03.00/O
Journal of Professional Nursing,
sometimes
deci-
that there are problems
of health care in this nation Relman,
1987).
or impossible
of questionable
Health
(Dallek, care is
to access by some, and
quality.
see the effects of these problems
Nurses
every day
on the lives of those
for whom they care as well as on themselves. a formidable
planning
in community-based
care policy.
1988;
care program
that seems to
of this
and status of the
with a view to identifying
acknowledged
makers struggling
health
The purpose
Problems in Health Care
in the decision-making
A social movement
nurses will want to keep abreast of
of the population
costly,
by this trend to find ways
decisions
how nurses can both support the diffusion of the movement and promote the participation of a broad
ten-
committed to inthat affect their
in policy
article is to describe the development
to focus on
an emerging
care system
these developments
communities
of this movement.
It is widely
EGYVARY (1990) notes
of incorporating
plishing
dated.
PHD*
with the delivery
populations. Nurses, volving individuals health,
RN,
Policy-
to deal with health care issues have
task before them.
The problems
of the health
care system
are com-
plex, not just because the issues of cost, access, and quality cause
are inextricably the
decisions
bound
together,
to be made
are
but also beinherently
grounded in both bioethics and economics (Fry, 1983; Himmelstein, Woolhandler, & Bor, 1988; Hines, 1985; Terris, 1986). Developments in medical science and technology have created choices in health care that demand decisions grounded in social values. It is for this latter reason, says Hines (1987), that discussions about such decisions often conclude with “a call for society to decide” (p. 86). But, as Crawshaw and his associates (1985) ask, “who is ‘society’ and how will they-whoever they are-decide?” (p. 32 13).
Vol 7, No 5 (September-October),
199 1: pp 27 I-276
271
272
DORIS M. WILLIAMS
American Health Decisions Working
together,
Crawshaw sponded
Hines
et al (1985), to questions
oping a pioneering sophical cisions.
and
involvement
into a concrete program: Following
(Crawshaw,
1987),
in Oregon
re-
by devel-
the lofty philoin health
Oregon
this lead, projects
policy
Health De-
with a similar
in at least 12 other states
1988). In the fall of 1989, representatives
of eight of these groups an umbrella
convened
organization,
to promote
munity
1986,
about society deciding
goal have been undertaken
sions,
others
project to translate
goal of public
decisions
(1985,
ethical problems
health
fice for American
American
the growth
decisions
in Chicago
tioning
of services
ethical
issues related
location
dertaken
throughout
church groups, among
of any particular powering
citizens
decisions.
This
group or point to be involved
in health care policy
aim is evident
in its mission
state-
parent-teacher
groups
1989, p. 3)
meetings.
were encouraged
or general
effort at community
egon
with
over
1985). Analysis
5,000
people
of the content distributed
consensus meetings
on major
prob-
involvement throughout
attending
of discussion
Or-
(Hines,
and of ques-
in the small groups led to iden-
of five areas of general agreement
participants
impres-
leaders tried to
lems.
initial
in the
to raise concerns
experiences
300 small group
and facil-
Participants
toward
This
Nurses were
to coordinate
move the groups produced
were natural
among the
in the groups:
The dignity patients
and autonomy
of sick and dying
needs better protection. emphasis
ease prevention
should
be placed on dis-
and health promotion.
Everyone should have access to an adequate of health care.
level
Health
con-
care costs must
be brought
under
trol.
variations
the established idea of how
in small
eg, civic organizations,
in these groups.
Much greater
Through grassroots education and discussion American Health Decisions will promote and enhance the understanding and direct involvement of citizens in personal, institutional and societal ethical decisions about health care. (“American Health Decisions,”
gleaned
De-
of view, but for em-
ment:
While
the state,
out of personal
tification aims not for advocacy
Health
effort was un-
sions about health care, and discussion
tionnaires Decisions
to pur-
of volunteers
leaders
those who volunteered
arising
Health
Oregon
of
about
that developed
in which a small number
discussion
American
toward cre-
debates and decisions
to be discussion
itate discussion
American Health Decisions aims not for advocacy of any particular group of point of view, but for empowering citizens to be involved in health cafe policy decisions.
and alprograms
broad participation
In 1983 to 1984, a grassroots-type
groups
Denver.
in value-based
health
was directed
to facilitate
legal and
systems,
among
sue this goal came to be named
com-
will be located in
poor,
ra-
cisions (OHD).
of a nationwide
Decisions
monies
these issues. The organization
trained
of-
care, including
to life support
1985). The interest
the public
Deci-
The national
of public
(Hines,
to health
to the medically
ating a mechanism
Health
movement.
Health
to form
related
exist in structure health
these
decisions
programs
from a description
In the following
section,
and process among programs,
a general
may function
of the Oregon such a description
Rationing
and allocation
fairly and openly.
decisions
(Hines,
must be made
1985, p. 6)
can be
experience. is given.
Oregon Health Decisions In 1983, a small group of individuals, mainly physicians and staff members of the Oregon Statewide Health Coordinating Council (a health planning body), became interested in pursuing a health planning task force recommendation to study biomedical
These areas of agreement proposals
were restated as goals, and
for specific actions to achieve the goals were
generated, mainly by small group leaders, community representatives, and OHD staff. In October 1984, a Citizens Health Care Parliament was held in Portland to debate and vote on the proposals (Hines, 1985). Sixty-five delegates, the majority being community representatives, some of whom were nurses, were invited to the Parliament. The outcome of the Parliament was a health constitution-type document that
273
POLICY AT THE GRASSROOTS
lays out the rights and responsibilities ties in relation Principles
to health care. A Statement
for Health
this document, mending
Decisions
to address
before the Parliament tion
(1985)
organization ment.
would
of Oregon,
information, assume
of the project, created
the fact that
responsibility
resolutions,
resulted
funds
in a successful
Two large philanthropic
and Prudential-have
financial
support
ucation
and care.
presented
and
of requests
in its mission
published
couto
Key concepts developed
embedded
to use when health services. “How
many
what extent related
service promote
related
Wood
decisions
movement. of individuals
to promoting
citizen ed-
and policy
“To what
extent
does the
in the distribution
Health
Decisions,
of health
1988, p. 19).
is The death with dignity
clarifying
the
and promoting
healthcommu-
to educate
project conducted the public
related to death and to gather ple’s concerns
information
in these matters.
Public
resulting
in part from the Health
credited
with
aiding
passage
Decisions
Plans
include
project,
for health
someone
for them in case of incapacitation. The health promotion project project.
about peoinvolvement,
of legislation
that creates a power of attorney people to designate
commu-
about legal issues
compiling
in 1989
to make decisions is OHD’s
current
an inventory
health promotion statewide
survey of adults regarding
toward
practices,
and beliefs related to health promotion,
community-based
projects to involve the public in addressing issues related to health care resources allocation, death with dignity, and health promotion and disease prevention. In addition to being community group discussion leaders and delegates to Health Care Parliaments, nurses have contributed to OHD by serving on the board of directors, project steering committees, and advisory committees. The resource allocation project, titled “Oregon Health Priorities for the 199Os,” sought to determine which health services Oregonians consider most important as a means of informing the funding decisions
programs
is
care, en-
nication of these values to health policymakers, both public and private. Specific undertakings to advance those goals have included
“To
people’s health-
issues of
of the organization
abling
values of the public
in the list are:
to benefit?”
The goals of OHD include clarifying the health-related values of the public and promoting communication of these values to health policymakers, both public and private.
and
statement:
include
equity
care?” (Oregon
as in other
operational
p. 2)
of OHD
of questions
particular
the action
We believe the health care system should reflect the values of an informed community. Our main activities are to identify and research health care issues of concern to the general public, and to involve the public in a process of recommending solutions and working to implement them. (Oregon Health Decisions, 1989,
goals
about
are expected
of life?”
were
for policymakers
will the service increase
quality
Qual-
15 principles
decisions
Examples people
for decision
document
Care Resources (1988).
in the
faced with
Parliament,
15 principles
in the Parliament
into a list of 10 questions
nity seminars
The
in a second Citizens
held in 1988, that adopted making,
been major sources of
on ethical
The philosophy
and private payers for health care. This
culminated
search for funding
to exist as a network committed
project
from the private sector.
for the health
action
This,
for
came forward
foundations-Robert
Johnson
health
both within
In Oregon,
Decisions
project expenses come mainly
and organizations
for
for implementing
for Health
OHD continues
the Parlia-
and speakers. no group
the
Enthusiasm
a stream
to extend the life of the project. states,
after
did not happen.
1985). that
of government
ity of Life in Allocating He&h
concep-
it was expected
consultation,
pled with
in the original
“self-destruct”
the goals and methods
of
recom-
the five goals identified
that
project
This, however,
outside
34 resolutions
(“Society Must Decide,”
reports
of the OHD
of Ethical
forms the preamble
and it presents
actions
Hines
of various par-
of
in the state, conducting
a
their knowledge,
holding a series of community forums izens in discussions of values related to tion and disease prevention policies. that this project will also culminate in
and
to engage cithealth promoIt is intended a Citizens Par-
liament, which will have as its task to develop resolutions concerning health promotion and disease prevention policies. In addition to implementing projects dealing with ethical issues in specific areas of health care, OHD offers ongoing services that include a speakers bureau, technical assistance, reference library, and a newsletter (OHD Longe Range Plan, 1989). As a pioneer in
274
DORIS M. WILLIAMS
promoting
community
decisions,
OHD
involvement
has been consulted
uals and groups
across the nation
by many individ-
lation
its mandate
notwithstanding,
participation
on the structure
of decision
decisions
is notable
as an innovation
for health care policy in Oregon
is indicated
tial to increase citizen
in 1989.
to restructure
Senate Bill (SB 27)
the Oregon
so that all persons
below
Medicaid
poverty
level will
be in-
but only for certain services (“Senate Bill 27,”
1989).
To determine
law requires
the services to be covered,
a prioritization
tional basis for making to fund.
accomplished,
decisions
available
will
funds
a ra-
about which services
of health
lawmakers
where
the
process to provide
After the ranking
care services is
“draw
a line”
are depleted.
at the
Medicaid
The American participation ing
over
the
SB 27 established
a Health
recommendations
state
cycle) to the legislature
coverage.
This
(to coincide
Commission,
what will be an ongoing
for Medicaid
therefore,
will
oversee
process of prioritization
health care services and of citizen participation process.
to
with the
of
sions
member
umbrella
of OHD,
making
participation program.
nurses promote movement? with
and
of
the Oregon
in decisions
about
Nurses can play a role in
decisions
idea by being
information
Because
the
to enlarge
in-
about it. Why
the spread of the health
new opportunities
and, in so doing,
is
movement
deci-
presents
to empower the profession’s
people positive
image.
in that
and the Commission
on September
to conduct
ings statewide ticipation
an initial
in the process
series of community
low-income
attention
interviews,
the health decisions movement . . . presents nurses with new opportunities to empower people and, in so doing, to enlarge the profession’s positive image.
community
of health
In February
to
The
public
hearon the
services.
vices Commission
finalized
community-based
information
a process
Health
Ser-
of using
the
gathered
by OHD
along with expert opinion and technical data to generate a priority list for 1,600 health care procedures. The target for implementing the priority list in the Medicaid program is now July 1, 1992 (postponed from the original target of July 1, 1990). The proposed restructuring of Medicaid coverage in Oregon has drawn both support and opposition from within state
and
elsewhere
The experience
(“Not
Enough
for All,”
in Oregon
some of the decision-making policy
to citizens
framework
of this year, the Oregon
.
other
meetings.
and recommendations
,
pro-
and
held a series of traditional
ings to elicit comments ranking
Special
people in the prioritization
to supplement
Commission
par-
of health
1989). These meet-
in 1990.
cess led the use of surveys, methods
meet-
public
of prioritization
to Coordinate,”
were held early
involving
14, 1989 to request
as one means of enlisting
services (“OHD
the
organization
for public
‘
voted unanimously
ings
new
The person selected to chair the Commission
is a board OHD
of this
as a result of the two major devel-
the spread of the health
nurses
with
of the last several years, ie, the formation
mandate
should
Diffusion
of health care policy decision
formed and disseminating
Services Commission
make biennial budget
decisions”
1989, p. 1).
6 years.
likely to accelerate
the state Medicaid
to Coordinate,”
movement,
has been build-
last
“technology”
Decisions
into health care policy,
meeting (“OHD
care.
ideal of public
a national
be used to guide health resource allocation
in the policy pro-
the democratic
opments
on the values to
Health
the goal of extending
eligible for coverage. The law specifies that there must be active “public involvement in a community a consensus
policy
with the poten-
Opportunities for Nurses
monies will pay for all services above the line for those
process to build
for a grassroots
in Medicaid
involvement
cess for health and health
legis-
program
cluded,
point
aspects of the Oregon
for public
enacted
(Crawshaw,
1990). The controversial structure
by legislation intends
policy 1988).
The effect of OHD making
in health
nity values.
suggests power
can be promoted
that
The structure
for the expression
health
care preceded,
care
by creating
that gives voice and visibility
OHD
shifting
in health
and process developed of grassroots
a
to commuvalues
and may have encouraged,
by
about the
legislative mandate to consult community-based opinion in the development of the state’s Medicaid policy. Nurses seeking to connect communities into the decision-making process of health care program planning and policy-making, therefore, may find the general American Health Decisions movement a welcome development in policy making and the specific example of Oregon instructive.
275
POLICY AT THE GRASSROOTS
CREATING
FRAMEWORK
GIVING VOICE TO THE SILENT
FOR VOICE AND VISIBILITY
A concern of those who have been involved In the Oregon involved
program,
as members
project
steering
of the OHD
committees,
advisory committee tees advisory
nurses have been actively
leaders,
ments.
Nurses
sions groups
Board),
and members working
in areas where
presents tunity
of the movement
themselves
a broader
these activities
as part
involvement
it
these people.
of their
clinical
provide
and access on the daily lives of
What may seem self-evident
heard if a more humane
needs to be
with low incomes health
care system
must be is to be
created,
to allow
the voices of persons with incomes must be heard if a more humane health care system is to be created.
/ii
in some of experiences.
nursing
into the interrelationship
people and
the oppor-
care system
could be involved
would
fo-
nurses
the effects of the health system prob-
said: the voices of persons
range of choice of service pro-
students
with insight
including
the health
viders. Nursing Such
the public about the
and the opportunities
for them (the public), to restructure
in
people in community where they practice,
to the health needs of low-income
witness firsthand
with the
thus far is the low level of
of low-income
lems of cost, quality,
deci-
can contribute
these ways as well as in educating purposes
parlia-
movement
In all the settings
minister
dis-
health
participation rums.
commit-
small group
of both health
exist or are forming
of
of a nursing
(one of four professional
to the OHD
cussion
Board, members
members
health decisions
students
of policy,
eth-
ics, and economics. Nurses
can join with
their communities decisions When
to initiate
organization
the national
in Denver start-up
American
becomes
interested
Health
A “how-to”
from the American will be marketed
being
Association
intended
as a way of keeping currently
are an excellent
Persons;
informed operating
about
source of information
the involvement
of low-
people in community-based As members
of boards
tees, nurses can insist ing
practice
health policy fo-
and steering
groups
the movement. groups
and consultation
about setting up programs. A listing of existing health decisions groups, with addresses and telephone numbers, can be requested from the Center for Health Ethics and Policy, University of Colorado, Denver, CO 80202 (303-556-4837). The success of the health decisions movement has much to offer nurses as well as the general public. The activities in which nurses would engage to promote the health decisions movement would increase the visibility of nurses in their communities and project a positive image of nurses as concerned with human values.
commit-
that when a community
meet-
format
is to be used
as a vehicle
for public
participation
the accessibility
of meeting
sites for low-
income people be a concern in planning.
it
functions,
health decisions
rums.
individual
safety are matters to be considered Psychosocial aspects of accessibility
that are pro-
health decisions
and
portation
office (Crawshaw,
and development
design
a
with funding
of Retired
to the newsletters
duced by some of the existing Likewise,
in-
office is geared up to carry out its
informational
nurses can subscribe
which
about beginning
developed
by the national
1989). Until the national
and for develop-
package,
cludes a video cassette and booklet is currently
office
it will serve as a
for information
program
levels, nurses can encourage income
exists.
(they are in the
phase as this is written),
program,
Decisions
At both
in
of a health
area if none
fully operational
consultation.
persons
development
in their
central clearinghouse ment
other
Public
routes and hours of operation
meetings
should
ning.
Seating
group
processes,
also be considered arrangements,
aim to promote
in program
with
group situations,
expressing programs
ods other than community mation
from
the public
plan-
translation,
elements
should
and to avoid intimidation.
Because some people (at any income comfortable
and personal
in this regard. of community
language
and other meeting inclusivity
trans-
level) are not
personal
should meetings about
opinions
incorporate
values
to solicit
in
methinfor-
and opinions
related to health care policy. Surveys using questionnaires and/or interviews are obvious choices as other methods. Nurses engaged in program planning can encourage surveys to broaden the base of public participation. As vehicles for communication of opinions, questionnaires and interviews must also be designed and used with an eye to their accessibility, ie, characteristics such as the language, reading abilities, and culture of expected respondents must be considered. Through their interpersonal practices, nurses can also promote public participation of low-income people. The nature of the nurse-client relationship pro-
276
DORIS M. WILLIAMS
vides opportunities
for nurses
to assess knowledge,
interest,
and skills related to public
forming
clients about possibilities
health-related coaching
in public
them on ways of speaking
transportation
cially
important
rangements
areas),
for dependent
ings with clients participation
meetings
(espe-
assisting
with
ar-
meet-
are some ways nurses can encourage people
In their practices, questionnaires,
them, and conduct expression
them
care, and attending
of low-income
meetings.
their
forums,
out, helping
to community in rural
activities
In-
for registering
values and opinions
find
tribute
participation.
nurses
in community might
of opinions
to
to provide an avenue for
from people who might
other-
wise not be heard. CONNECTING THE GRASSROOTS WITH THE STATEHOUSE
Public groups
expression
of health
decisions
of policy-makers.
power in health care policy-making ers and grassroots to institutionalize
the enactment
grassroots
participation
by engaging
in traditional
eg, writing
letters,
casting
opinions,
between
of
lawmak-
process, as was done in Oregon.
can promote
mandates
a sharing
constituencies, it may be necessary the consultation of public opinion
in the policy-making Nurses
on the
that
in health care policy
types of political
making
voting,
of legislation
telephone
lobbying,
activity,
calls,
broad-
testifying.
Such
by belonging
basis for collective
political
keeping
about
informed
policy being developed nursing
organizations
provides
or implemented. supply
policy.
and structure
of action
for the professince the rise of
people in decisions
health,
nursing
support
the health
grassroots
participa-
movement
level to educate
problems
in health
agenda.
aims to work at the
people
about
care and to promote
in health
policy.
and facili-
that affect their
policy on its political
The health decisions
volvement
should
and include
grassroots
required
Because,
nurses have been advocates
movement
and co-
the efforts of individual
tators of involving organized
of any
Professional
the information
goals and plans
the profession,
not only the
action but also a means of
nurses, as well as the leadership sion’s role in health
rea-
the effects of their
issues and the status
needed to support
to develop
coordinated
For this latter
to organizations.
with organizations
tion in health
care values by citizen To effect
Affiliation
when
by others.
nurses can amplify
actions
decisions
need not of itself have any influence
more effective
activities
son, individual political
ordination
also dis-
assist people in responding
interviews
are often
with similar
The
issues and public
movement
inoffers
nurses opportunities to expand their traditional commitment to involving people in decisions about their health. ment,
By promoting
the development
nurses can contribute
tured process of direct decisions
related
public
to health
participation
care. Nurses
special role to play in the movement participation
of low-income
of the move-
to the creation
of a strucin policy may have a
by promoting
the
persons.
References American Health Decisions organization formed. (1989, March). Oregon He&b Decisions Reports, p. 3. Crawshaw, R. (1988, August). American Health Decisions. Oregon Health Decisions Reports, p. 3. Crawshaw, R. (1989, October). American Health Decisions: Alive and well. Oregon Health Decisions Reporter, p. 3. Crawshaw, R., Garland, M., Hines, B., & Lobitz, C. (1985). Oregon Health Decisions. JAMA, 254, 32 13-32 16. Dallek, G. (1985). Six myths of American medical care. HeulthlPAC
Bulletin,
16(3),
9-16.
Fry, S. (1983). Rationing health care: The ethics of cost containment. Nursing Economic$, 1, 165-169. Hegyvary, S. (1990). Redefining community. Journal of Professional Nursing,
6,
7.
Himmelstein, D., Woolhandler, S., & Bor, D. (1988). Will cost effectiveness analysis worsen the cost effectiveness of health care? Internation& Journal of Health Sewices, 18, l-9. Hines, B. (1987). Community bioethics projects bridge gap between public and policy makers. Family and Community He&b, 10(l), 86-90. Hines, B. (1986). Health policy on the town meeting agenda. Hastings Center Report, 16(2), 5-7.
Hines, B. (1985). Oregon and American health decisions. Office of Health Planning, US Department of Health and Human Services. Not enough for all. (1990, May 14). NeuJweek, p. 53. Oregon Health Decision (1989, January). OHD Long Range Plan 1989-1994. Portland, OR: Author. OHD to coordinate community meetings on prioritization of health care services. (1989, October). Oregon Health Decisions Reporter, pp. 1, 4. Oregon Health Decisions. (1988). Quality of lz$ in allocating health care resources. Portland, OR: Author. Ray, R. (1988, June 23). Testimony presented before the Joint Economic Committee, US Congress, Hearing on “The Future of Health Care in America.” Relman, A. (1987). The National Leadership Commission on Health Care. NM EnglandJournal of Medicine, 317, 706-707.
Senate Bill 27: Centerpiece of landmark health legislation. (1989, October). Oregon Health Dksivnr Rt@rter, pp. 5, 7. Oregon Health Decisions. (1985). Society must d&k Etbia and health care choicer in Oregon. (1985). Portland, OR: Author. Terris, M. (1986, August 4 8r 11). Commentary: Elements of a national health program. Monhy Comments, 36 (Reprint).
American Health Decisions is a developing social movement that aims to work at the grassroots level to educate people about issues and problems in health care and to promote public involvement in decision making about health policy. The movement offers nurses opportunities to expand their traditional commitment to involving people in decisions about their health. By promoting the development of the movement, nurses can contribute to the creation of a structured process of direct public participation in policy decisions related to health care. Nurses may have a special role to play in the movement by promoting the participation of low-income people. (Index words: Community decision making; Health decisions; Health planning; Health policy; Public participation) J Prof Nurs 7:271-276, 7997. Copyright 0 1991 by W.6.
SaundersCompany
H
Because of the possibilities
offer for involving that affect them, the progress
dency
in the health
traditionally in decisions
health decisions
will be challenged
segment
populations
process of community and policy-making.
movement
sions about health
be gaining
momentum
can Health
Decisions,
this.
Where
1985;
Ray,
difficult
in the United may provide programs
States, Ameri-
a basis for accom-
reflecting
the move-
ment’s aims have been established, they provide a vehicle for the public expression of private values related to health care decisions. In one instance, incorporation of such grassroots-level values into a health policy-making process has been legislatively man*Nursing Department, Chemeketa Community College, Salem, OR. Address correspondence to Dr Williams: Nursing Department, Chemeketa Community College, Salem, OR 97309. Copyright 0 1991 by W.B. Saunders Company 8755-7223/91/0705-0009$03.00/O
Journal of Professional Nursing,
sometimes
deci-
that there are problems
of health care in this nation Relman,
1987).
or impossible
of questionable
Health
(Dallek, care is
to access by some, and
quality.
see the effects of these problems
Nurses
every day
on the lives of those
for whom they care as well as on themselves. a formidable
planning
in community-based
care policy.
1988;
care program
that seems to
of this
and status of the
with a view to identifying
acknowledged
makers struggling
health
The purpose
Problems in Health Care
in the decision-making
A social movement
nurses will want to keep abreast of
of the population
costly,
by this trend to find ways
decisions
how nurses can both support the diffusion of the movement and promote the participation of a broad
ten-
committed to inthat affect their
in policy
article is to describe the development
to focus on
an emerging
care system
these developments
communities
of this movement.
It is widely
EGYVARY (1990) notes
of incorporating
plishing
dated.
PHD*
with the delivery
populations. Nurses, volving individuals health,
RN,
Policy-
to deal with health care issues have
task before them.
The problems
of the health
care system
are com-
plex, not just because the issues of cost, access, and quality cause
are inextricably the
decisions
bound
together,
to be made
are
but also beinherently
grounded in both bioethics and economics (Fry, 1983; Himmelstein, Woolhandler, & Bor, 1988; Hines, 1985; Terris, 1986). Developments in medical science and technology have created choices in health care that demand decisions grounded in social values. It is for this latter reason, says Hines (1987), that discussions about such decisions often conclude with “a call for society to decide” (p. 86). But, as Crawshaw and his associates (1985) ask, “who is ‘society’ and how will they-whoever they are-decide?” (p. 32 13).
Vol 7, No 5 (September-October),
199 1: pp 27 I-276
271
272
DORIS M. WILLIAMS
American Health Decisions Working
together,
Crawshaw sponded
Hines
et al (1985), to questions
oping a pioneering sophical cisions.
and
involvement
into a concrete program: Following
(Crawshaw,
1987),
in Oregon
re-
by devel-
the lofty philoin health
Oregon
this lead, projects
policy
Health De-
with a similar
in at least 12 other states
1988). In the fall of 1989, representatives
of eight of these groups an umbrella
convened
organization,
to promote
munity
1986,
about society deciding
goal have been undertaken
sions,
others
project to translate
goal of public
decisions
(1985,
ethical problems
health
fice for American
American
the growth
decisions
in Chicago
tioning
of services
ethical
issues related
location
dertaken
throughout
church groups, among
of any particular powering
citizens
decisions.
This
group or point to be involved
in health care policy
aim is evident
in its mission
state-
parent-teacher
groups
1989, p. 3)
meetings.
were encouraged
or general
effort at community
egon
with
over
1985). Analysis
5,000
people
of the content distributed
consensus meetings
on major
prob-
involvement throughout
attending
of discussion
Or-
(Hines,
and of ques-
in the small groups led to iden-
of five areas of general agreement
participants
impres-
leaders tried to
lems.
initial
in the
to raise concerns
experiences
300 small group
and facil-
Participants
toward
This
Nurses were
to coordinate
move the groups produced
were natural
among the
in the groups:
The dignity patients
and autonomy
of sick and dying
needs better protection. emphasis
ease prevention
should
be placed on dis-
and health promotion.
Everyone should have access to an adequate of health care.
level
Health
con-
care costs must
be brought
under
trol.
variations
the established idea of how
in small
eg, civic organizations,
in these groups.
Much greater
Through grassroots education and discussion American Health Decisions will promote and enhance the understanding and direct involvement of citizens in personal, institutional and societal ethical decisions about health care. (“American Health Decisions,”
gleaned
De-
of view, but for em-
ment:
While
the state,
out of personal
tification aims not for advocacy
Health
effort was un-
sions about health care, and discussion
tionnaires Decisions
to pur-
of volunteers
leaders
those who volunteered
arising
Health
Oregon
of
about
that developed
in which a small number
discussion
American
toward cre-
debates and decisions
to be discussion
itate discussion
American Health Decisions aims not for advocacy of any particular group of point of view, but for empowering citizens to be involved in health cafe policy decisions.
and alprograms
broad participation
In 1983 to 1984, a grassroots-type
groups
Denver.
in value-based
health
was directed
to facilitate
legal and
systems,
among
sue this goal came to be named
com-
will be located in
poor,
ra-
cisions (OHD).
of a nationwide
Decisions
monies
these issues. The organization
trained
of-
care, including
to life support
1985). The interest
the public
Deci-
The national
of public
(Hines,
to health
to the medically
ating a mechanism
Health
movement.
Health
to form
related
exist in structure health
these
decisions
programs
from a description
In the following
section,
and process among programs,
a general
may function
of the Oregon such a description
Rationing
and allocation
fairly and openly.
decisions
(Hines,
must be made
1985, p. 6)
can be
experience. is given.
Oregon Health Decisions In 1983, a small group of individuals, mainly physicians and staff members of the Oregon Statewide Health Coordinating Council (a health planning body), became interested in pursuing a health planning task force recommendation to study biomedical
These areas of agreement proposals
were restated as goals, and
for specific actions to achieve the goals were
generated, mainly by small group leaders, community representatives, and OHD staff. In October 1984, a Citizens Health Care Parliament was held in Portland to debate and vote on the proposals (Hines, 1985). Sixty-five delegates, the majority being community representatives, some of whom were nurses, were invited to the Parliament. The outcome of the Parliament was a health constitution-type document that
273
POLICY AT THE GRASSROOTS
lays out the rights and responsibilities ties in relation Principles
to health care. A Statement
for Health
this document, mending
Decisions
to address
before the Parliament tion
(1985)
organization ment.
would
of Oregon,
information, assume
of the project, created
the fact that
responsibility
resolutions,
resulted
funds
in a successful
Two large philanthropic
and Prudential-have
financial
support
ucation
and care.
presented
and
of requests
in its mission
published
couto
Key concepts developed
embedded
to use when health services. “How
many
what extent related
service promote
related
Wood
decisions
movement. of individuals
to promoting
citizen ed-
and policy
“To what
extent
does the
in the distribution
Health
Decisions,
of health
1988, p. 19).
is The death with dignity
clarifying
the
and promoting
healthcommu-
to educate
project conducted the public
related to death and to gather ple’s concerns
information
in these matters.
Public
resulting
in part from the Health
credited
with
aiding
passage
Decisions
Plans
include
project,
for health
someone
for them in case of incapacitation. The health promotion project project.
about peoinvolvement,
of legislation
that creates a power of attorney people to designate
commu-
about legal issues
compiling
in 1989
to make decisions is OHD’s
current
an inventory
health promotion statewide
survey of adults regarding
toward
practices,
and beliefs related to health promotion,
community-based
projects to involve the public in addressing issues related to health care resources allocation, death with dignity, and health promotion and disease prevention. In addition to being community group discussion leaders and delegates to Health Care Parliaments, nurses have contributed to OHD by serving on the board of directors, project steering committees, and advisory committees. The resource allocation project, titled “Oregon Health Priorities for the 199Os,” sought to determine which health services Oregonians consider most important as a means of informing the funding decisions
programs
is
care, en-
nication of these values to health policymakers, both public and private. Specific undertakings to advance those goals have included
“To
people’s health-
issues of
of the organization
abling
values of the public
in the list are:
to benefit?”
The goals of OHD include clarifying the health-related values of the public and promoting communication of these values to health policymakers, both public and private.
and
statement:
include
equity
care?” (Oregon
as in other
operational
p. 2)
of OHD
of questions
particular
the action
We believe the health care system should reflect the values of an informed community. Our main activities are to identify and research health care issues of concern to the general public, and to involve the public in a process of recommending solutions and working to implement them. (Oregon Health Decisions, 1989,
goals
about
are expected
of life?”
were
for policymakers
will the service increase
quality
Qual-
15 principles
decisions
Examples people
for decision
document
Care Resources (1988).
in the
faced with
Parliament,
15 principles
in the Parliament
into a list of 10 questions
nity seminars
The
in a second Citizens
held in 1988, that adopted making,
been major sources of
on ethical
The philosophy
and private payers for health care. This
culminated
search for funding
to exist as a network committed
project
from the private sector.
for the health
action
This,
for
came forward
foundations-Robert
Johnson
health
both within
In Oregon,
Decisions
project expenses come mainly
and organizations
for
for implementing
for Health
OHD continues
the Parlia-
and speakers. no group
the
Enthusiasm
a stream
to extend the life of the project. states,
after
did not happen.
1985). that
of government
ity of Life in Allocating He&h
concep-
it was expected
consultation,
pled with
in the original
“self-destruct”
the goals and methods
of
recom-
the five goals identified
that
project
This, however,
outside
34 resolutions
(“Society Must Decide,”
reports
of the OHD
of Ethical
forms the preamble
and it presents
actions
Hines
of various par-
of
in the state, conducting
a
their knowledge,
holding a series of community forums izens in discussions of values related to tion and disease prevention policies. that this project will also culminate in
and
to engage cithealth promoIt is intended a Citizens Par-
liament, which will have as its task to develop resolutions concerning health promotion and disease prevention policies. In addition to implementing projects dealing with ethical issues in specific areas of health care, OHD offers ongoing services that include a speakers bureau, technical assistance, reference library, and a newsletter (OHD Longe Range Plan, 1989). As a pioneer in
274
DORIS M. WILLIAMS
promoting
community
decisions,
OHD
involvement
has been consulted
uals and groups
across the nation
by many individ-
lation
its mandate
notwithstanding,
participation
on the structure
of decision
decisions
is notable
as an innovation
for health care policy in Oregon
is indicated
tial to increase citizen
in 1989.
to restructure
Senate Bill (SB 27)
the Oregon
so that all persons
below
Medicaid
poverty
level will
be in-
but only for certain services (“Senate Bill 27,”
1989).
To determine
law requires
the services to be covered,
a prioritization
tional basis for making to fund.
accomplished,
decisions
available
will
funds
a ra-
about which services
of health
lawmakers
where
the
process to provide
After the ranking
care services is
“draw
a line”
are depleted.
at the
Medicaid
The American participation ing
over
the
SB 27 established
a Health
recommendations
state
cycle) to the legislature
coverage.
This
(to coincide
Commission,
what will be an ongoing
for Medicaid
therefore,
will
oversee
process of prioritization
health care services and of citizen participation process.
to
with the
of
sions
member
umbrella
of OHD,
making
participation program.
nurses promote movement? with
and
of
the Oregon
in decisions
about
Nurses can play a role in
decisions
idea by being
information
Because
the
to enlarge
in-
about it. Why
the spread of the health
new opportunities
and, in so doing,
is
movement
deci-
presents
to empower the profession’s
people positive
image.
in that
and the Commission
on September
to conduct
ings statewide ticipation
an initial
in the process
series of community
low-income
attention
interviews,
the health decisions movement . . . presents nurses with new opportunities to empower people and, in so doing, to enlarge the profession’s positive image.
community
of health
In February
to
The
public
hearon the
services.
vices Commission
finalized
community-based
information
a process
Health
Ser-
of using
the
gathered
by OHD
along with expert opinion and technical data to generate a priority list for 1,600 health care procedures. The target for implementing the priority list in the Medicaid program is now July 1, 1992 (postponed from the original target of July 1, 1990). The proposed restructuring of Medicaid coverage in Oregon has drawn both support and opposition from within state
and
elsewhere
The experience
(“Not
Enough
for All,”
in Oregon
some of the decision-making policy
to citizens
framework
of this year, the Oregon
.
other
meetings.
and recommendations
,
pro-
and
held a series of traditional
ings to elicit comments ranking
Special
people in the prioritization
to supplement
Commission
par-
of health
1989). These meet-
in 1990.
cess led the use of surveys, methods
meet-
public
of prioritization
to Coordinate,”
were held early
involving
14, 1989 to request
as one means of enlisting
services (“OHD
the
organization
for public
‘
voted unanimously
ings
new
The person selected to chair the Commission
is a board OHD
of this
as a result of the two major devel-
the spread of the health
nurses
with
of the last several years, ie, the formation
mandate
should
Diffusion
of health care policy decision
formed and disseminating
Services Commission
make biennial budget
decisions”
1989, p. 1).
6 years.
likely to accelerate
the state Medicaid
to Coordinate,”
movement,
has been build-
last
“technology”
Decisions
into health care policy,
meeting (“OHD
care.
ideal of public
a national
be used to guide health resource allocation
in the policy pro-
the democratic
opments
on the values to
Health
the goal of extending
eligible for coverage. The law specifies that there must be active “public involvement in a community a consensus
policy
with the poten-
Opportunities for Nurses
monies will pay for all services above the line for those
process to build
for a grassroots
in Medicaid
involvement
cess for health and health
legis-
program
cluded,
point
aspects of the Oregon
for public
enacted
(Crawshaw,
1990). The controversial structure
by legislation intends
policy 1988).
The effect of OHD making
in health
nity values.
suggests power
can be promoted
that
The structure
for the expression
health
care preceded,
care
by creating
that gives voice and visibility
OHD
shifting
in health
and process developed of grassroots
a
to commuvalues
and may have encouraged,
by
about the
legislative mandate to consult community-based opinion in the development of the state’s Medicaid policy. Nurses seeking to connect communities into the decision-making process of health care program planning and policy-making, therefore, may find the general American Health Decisions movement a welcome development in policy making and the specific example of Oregon instructive.
275
POLICY AT THE GRASSROOTS
CREATING
FRAMEWORK
GIVING VOICE TO THE SILENT
FOR VOICE AND VISIBILITY
A concern of those who have been involved In the Oregon involved
program,
as members
project
steering
of the OHD
committees,
advisory committee tees advisory
nurses have been actively
leaders,
ments.
Nurses
sions groups
Board),
and members working
in areas where
presents tunity
of the movement
themselves
a broader
these activities
as part
involvement
it
these people.
of their
clinical
provide
and access on the daily lives of
What may seem self-evident
heard if a more humane
needs to be
with low incomes health
care system
must be is to be
created,
to allow
the voices of persons with incomes must be heard if a more humane health care system is to be created.
/ii
in some of experiences.
nursing
into the interrelationship
people and
the oppor-
care system
could be involved
would
fo-
nurses
the effects of the health system prob-
said: the voices of persons
range of choice of service pro-
students
with insight
including
the health
viders. Nursing Such
the public about the
and the opportunities
for them (the public), to restructure
in
people in community where they practice,
to the health needs of low-income
witness firsthand
with the
thus far is the low level of
of low-income
lems of cost, quality,
deci-
can contribute
these ways as well as in educating purposes
parlia-
movement
In all the settings
minister
dis-
health
participation rums.
commit-
small group
of both health
exist or are forming
of
of a nursing
(one of four professional
to the OHD
cussion
Board, members
members
health decisions
students
of policy,
eth-
ics, and economics. Nurses
can join with
their communities decisions When
to initiate
organization
the national
in Denver start-up
American
becomes
interested
Health
A “how-to”
from the American will be marketed
being
Association
intended
as a way of keeping currently
are an excellent
Persons;
informed operating
about
source of information
the involvement
of low-
people in community-based As members
of boards
tees, nurses can insist ing
practice
health policy fo-
and steering
groups
the movement. groups
and consultation
about setting up programs. A listing of existing health decisions groups, with addresses and telephone numbers, can be requested from the Center for Health Ethics and Policy, University of Colorado, Denver, CO 80202 (303-556-4837). The success of the health decisions movement has much to offer nurses as well as the general public. The activities in which nurses would engage to promote the health decisions movement would increase the visibility of nurses in their communities and project a positive image of nurses as concerned with human values.
commit-
that when a community
meet-
format
is to be used
as a vehicle
for public
participation
the accessibility
of meeting
sites for low-
income people be a concern in planning.
it
functions,
health decisions
rums.
individual
safety are matters to be considered Psychosocial aspects of accessibility
that are pro-
health decisions
and
portation
office (Crawshaw,
and development
design
a
with funding
of Retired
to the newsletters
duced by some of the existing Likewise,
in-
office is geared up to carry out its
informational
nurses can subscribe
which
about beginning
developed
by the national
1989). Until the national
and for develop-
package,
cludes a video cassette and booklet is currently
office
it will serve as a
for information
program
levels, nurses can encourage income
exists.
(they are in the
phase as this is written),
program,
Decisions
At both
in
of a health
area if none
fully operational
consultation.
persons
development
in their
central clearinghouse ment
other
Public
routes and hours of operation
meetings
should
ning.
Seating
group
processes,
also be considered arrangements,
aim to promote
in program
with
group situations,
expressing programs
ods other than community mation
from
the public
plan-
translation,
elements
should
and to avoid intimidation.
Because some people (at any income comfortable
and personal
in this regard. of community
language
and other meeting inclusivity
trans-
level) are not
personal
should meetings about
opinions
incorporate
values
to solicit
in
methinfor-
and opinions
related to health care policy. Surveys using questionnaires and/or interviews are obvious choices as other methods. Nurses engaged in program planning can encourage surveys to broaden the base of public participation. As vehicles for communication of opinions, questionnaires and interviews must also be designed and used with an eye to their accessibility, ie, characteristics such as the language, reading abilities, and culture of expected respondents must be considered. Through their interpersonal practices, nurses can also promote public participation of low-income people. The nature of the nurse-client relationship pro-
276
DORIS M. WILLIAMS
vides opportunities
for nurses
to assess knowledge,
interest,
and skills related to public
forming
clients about possibilities
health-related coaching
in public
them on ways of speaking
transportation
cially
important
rangements
areas),
for dependent
ings with clients participation
meetings
(espe-
assisting
with
ar-
meet-
are some ways nurses can encourage people
In their practices, questionnaires,
them, and conduct expression
them
care, and attending
of low-income
meetings.
their
forums,
out, helping
to community in rural
activities
In-
for registering
values and opinions
find
tribute
participation.
nurses
in community might
of opinions
to
to provide an avenue for
from people who might
other-
wise not be heard. CONNECTING THE GRASSROOTS WITH THE STATEHOUSE
Public groups
expression
of health
decisions
of policy-makers.
power in health care policy-making ers and grassroots to institutionalize
the enactment
grassroots
participation
by engaging
in traditional
eg, writing
letters,
casting
opinions,
between
of
lawmak-
process, as was done in Oregon.
can promote
mandates
a sharing
constituencies, it may be necessary the consultation of public opinion
in the policy-making Nurses
on the
that
in health care policy
types of political
making
voting,
of legislation
telephone
lobbying,
activity,
calls,
broad-
testifying.
Such
by belonging
basis for collective
political
keeping
about
informed
policy being developed nursing
organizations
provides
or implemented. supply
policy.
and structure
of action
for the professince the rise of
people in decisions
health,
nursing
support
the health
grassroots
participa-
movement
level to educate
problems
in health
agenda.
aims to work at the
people
about
care and to promote
in health
policy.
and facili-
that affect their
policy on its political
The health decisions
volvement
should
and include
grassroots
required
Because,
nurses have been advocates
movement
and co-
the efforts of individual
tators of involving organized
of any
Professional
the information
goals and plans
the profession,
not only the
action but also a means of
nurses, as well as the leadership sion’s role in health
rea-
the effects of their
issues and the status
needed to support
to develop
coordinated
For this latter
to organizations.
with organizations
tion in health
care values by citizen To effect
Affiliation
when
by others.
nurses can amplify
actions
decisions
need not of itself have any influence
more effective
activities
son, individual political
ordination
also dis-
assist people in responding
interviews
are often
with similar
The
issues and public
movement
inoffers
nurses opportunities to expand their traditional commitment to involving people in decisions about their health. ment,
By promoting
the development
nurses can contribute
tured process of direct decisions
related
public
to health
participation
care. Nurses
special role to play in the movement participation
of low-income
of the move-
to the creation
of a strucin policy may have a
by promoting
the
persons.
References American Health Decisions organization formed. (1989, March). Oregon He&b Decisions Reports, p. 3. Crawshaw, R. (1988, August). American Health Decisions. Oregon Health Decisions Reports, p. 3. Crawshaw, R. (1989, October). American Health Decisions: Alive and well. Oregon Health Decisions Reporter, p. 3. Crawshaw, R., Garland, M., Hines, B., & Lobitz, C. (1985). Oregon Health Decisions. JAMA, 254, 32 13-32 16. Dallek, G. (1985). Six myths of American medical care. HeulthlPAC
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