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The
Lazarus Project
Citizen Politics in a Nursing Home
The
Lazarus Project:
Citizen Politics in a Nursing Home,1994, is a 4-page case study,
with a discussion of citizen politics and a public community model
as an alternative to a professional therapeutic model that fosters
dependence. Case study plus.
Case
Study Plus: The Lazarus Project
Case
study prepared by Harry Boyte and Nancy Kari, Center for Democracy
and Citizenship, Hubert Humphrey Institute, University of Minnesota,
301 19th Avenue South, Minneapolis, MN 55455. Adopted from Dissent,
December 1994.
A nursing
home setting vividly illustrates how civic action can affect the
basic issues that must be addressed if significant democratization
of our health care system is to be achieved. Nursing homes dramatize
our inability as a society to deal in public fashion with issues
surrounding infirmity and death. They embody our tendency to cede
authority to experts and to institutionalized services. Efforts
at civic reform in nursing homes crystallize these questions and
offer insights for the reintroduction of civic agency in health,
more broadly.
The Lazarus Project is a four year old effort to develop an alternative
to the medical and therapeutic models that typically govern decision-making
structures in nursing homes. It was undertaken by The Augustana
Home in partnership with Project Public Life. Augustana is a large,
nonprofit Lutheran nursing home in Minneapolis which employs an
administrator, 15 managers, and 500 staff members for its 370
residents. The nursing home is associated with a larger campus
of 400 apartments in four adjoining high rise buildings. Augustana
is a not-for-profit organization whose revenue sources are largely
Medicare and Medicaid. The effort was funded through a capital
campaign in 1989 that had as one of its goals to build a more
"empowering community."
The Lazarus Project has sought to create an alternative "public
community" model that integrates explicit civic
concepts into the everyday work that staff and residents do. The
Project has demonstrated that even within highly structured, hierarchical
environments like nursing homes, staff, family members and frail
elderly residents are willing to take on more substantial roles
in decision-making and problem-solving in order to shape the environments
in which they live and work. It illustrates the energy and power
of public life, even where least expected.
There are immense barriers to individual and collective civic
agency within the therapeutic cultures of long term care institutions.
Nursing homes vary according to size, urban and rural location,
and affiliation with a community or ethnic or religious tradition.
Yet generally, they have a stark, institutional quality that reinforces
regimentation and dependency.
In service systems like nursing homes, roles are generally categorized
in two ways. Care providers' primary function is to provide services
to residents. In contrast, residents (defined these days, in the
language of Total Quality Management, also as "customers")
are the recipients of services; their lot is to express satisfaction
or grievance with services provided.
Feelings of powerlessness pervade nursing homes. Although these
facilities provide long term rehabilitation for men and women
who eventually return to their homes, the majority of residents
are frail elders, increasingly incapacitated, who remain in residential
care until they die. Augustana has traditionally been a site for
retirement of relatively healthy older people and continues to
have many people who are not incapacitated. But its population,
like that of other homes, also has shifted in recent years toward
those who are infirm and disabled. About 20 percent of current
admissions are designated as "terminal,"
which means that the residents are expected to die within 30 days.
Against such a background, the move to a nursing home is often
a traumatic life transition, perceived as a "last
stop." For many, this is the first experience
in institutional living. "I don't know any other
institutions you would be in, other than the army, where you are
as regimented as you are in a nursing home,"
observed Pam Hayle, Director of Therapeutic Activities at Augustana.
Government regulations and traditions combine in nursing homes
to constrain residents and staff alike to narrow, scripted patterns
of interaction.
For many residents, this first experience in institutional living
typically comes after a life dedicated to "serving
others." In Augustana, 85% of the residents
are women; many come from working class backgrounds, where their
public work involved church, community involvement, and homemaking.
A therapeutic culture sees people in terms of their needs, not
their capacities; it leaves little room for residents to make
contributions to the setting. The basic struggle for residents
is to learn how to live within the system.
For staff, a common goal is to "empower clients,"
but empowerment is conceived typically in individual and psychological
terms, a condition one can "give"
to another. The paradox is that as caregivers seek to establish
nurturing, caring relationships, their very intensity can reinforce
staff control. For instance, decision-making authority about residents
is typically claimed by staff members who "care"
the most for residents. Staff describe how working with "my
residents" fills emotional needs "to
be appreciated" and "to make
a difference in someone's life." The personalized
and intimate quality of such relationships, in the absence of
more public practices, generates an obligation on the part of
the resident, who is expected to respond with appreciation.
Staff members themselves express frustration at their inability
to deal effectively with increasing demands for physical and emotional
care. Their own sense of powerlessness, compounded by pressures
to avoid mistakes in their work, limits their ability to experiment
and take risks, to recognize the necessarily messy, ambiguous
nature of much public work, to imagine change or to assume new
roles. Many feel overwhelmed by the needs of increasingly frail
elders. More broadly, the regulatory environment emphasizes standardized,
unimaginative actions. More than 600 federal and state regulations
aim at "creating empowering communities."
Yet the intrinsic nature of bureaucratic regulations is at odds
wit h the particularities of individuals and environments; their
lack of attention to context thwarts innovation and creativity.
Against such a background Lazarus Project has asked, "can
staff, families, and residents learn broader civic identities
and assume new roles in helping to create their environments?"
At the heart of the Lazarus strategy has been a conceptual approach
to leadership development, adapted from the most effective strategies
in community organizing. Such an approach stresses the importance
of ongoing discussion about core civic ideas, deepened and integrated
as people apply them in daily work. Project Public Life has developed
a framework of such concepts called "citizen
politics," revolving around the central idea
of citizenship as effective, public-spirited, multifaceted contribution
to the work of problem-solving. Concepts include politics itself,
public spaces and their difference from private environments,
the diversity of interests, and power conceived as interactive
and relation al.
This approach to leadership development is different from most
organizing training, which stresses techniques and skills (how
to chair meetings, write leaflets, put on public hearings, etc.)
Teaching civic concepts develops competence in critical thinking
, debate, and reflection. More subtly but perhaps most importantly,
it generates the kind of robust political self-confidence that
has been lost in modern life, but which is especially critical
to any process of democratizing information and service environments.
Skilled conceptual thinking about politics conveys the simple
but transformative message that ordinary people as well as those
who are credentialled as experts can think, well and seriously;
it testifies that people can be theorists of their everyday experience
and of the larger world.
Civic concepts are especially difficult to introduce and bring
to life in a nursing home setting. The focus is on care, nurturance,
and rehabilitation, not on building strategic relationships to
solve common problems. Yet the introduction of civic concepts
can also work dramatic change. However much against the grain,
staff, family, and residents also desire a more open, public process
of conversation that brings tough and difficult problems to the
surface, instead of suppressing them.
A poignant example occurred early in the project, when a chaplain
intern remarked to a joint committee of residents and staff that
it was hard for her to see so many people die. Augustana, like
most nursing homes, avoided open discussion of death. Staff had
been convinced that the subject would unduly upset residents.
Yet in this session an earlier discussion of the concept of public
spaces as arenas for talking about difficult problems led to a
breaking of the silence. Residents responded, "We
know the topic is hard for the staff; that's why we don't talk
about it. But to us it seems a natural part of the process of
moving into a nursing home."
A dynamic conversation about death developed. Some staff thought
that discuss ion of death might threaten the image that Augustana
wished to project, as a place for living. But residents talked
about wishing to be in charge of the process of dying, even if
this meant not complying with staff expectations or rules. In
response, staff spoke of their anxiety when what they thought
of as "best possible care"
conflicted with resident wishes.
The committee convened a large public forum to discuss death and
dying, with staff, residents, and others connected to the nursing
home participating. Many recommendations emerged for changes in
community rituals related to death. Perhaps most importantly,
the public discussions helped establish a more open process in
which residents and staff alike ask questions, share stories,
and discuss strug gles with dying. This greater openness has infused
many staff, resident and family interactions. "There's
more conversation now," said Kathryn Kading,
Director of Nursing at Augustana. Ways to develop rituals and
richer conversations about death and dying are now incorporated
into Augustana's planning process.
In other instances, too, when people at Augustana have actively
struggled with limitations they have experienced an enhanced sense
of power and meaning in situations that otherwise render them
helpless. For instance, the way residents and staff addressed
a near-universal nursing home complaint—slow staff response
to resident "call lights"—also
illustrated this pattern. Grievances about response times normally
result simply in unanswered demands for increased staffing. Yet
in this case, residents organized public forums to discuss the
use of call lights to summon help, involving staff and residents
alike. The forums provided space to air varying points of view
and to generate solutions that n either staff nor residents alone
had imagined. Most importantly, they dealt with deeper issues
for which there are no easy solutions, like feelings of dependency
and overwhelming responsibilities. Talking about these led to
more effective use of call lights by residents and more attentiveness
by staff.
Augustana has not undergone a complete transformation in staffing,
governance patterns, or resident practices as a result of the
Lazarus Project. But it has seen notable changes as the community
has sought to add more public dimensions. Departments such as
Nursing and Therapeutic Activities now have much more open negotiations
about issues like staffing patterns and hours. The Therapeutic
Activities department has debated how to distribute allotments
for salary increases. New staff get much more explanation of the
reasons for patterns of staffing, and supervisors report higher
morale. Managers such as Hayle have sought to exemplify a less
personalized and cautious style of interaction, showing that one
can disagree in public and still maintain respectful relationships.
More
Information
Nancy Kari,
Director of Faculty Relations, College of St. Catherine, 2004
Randolf Avenue, St. Paul, MN 55105. Phone: 612-690-6607; fax:
612-690-6024 Harry Boyte, Center for Democracy and Citizenship,
Hubert Humphrey Institute, University of Minnesota, 301 19th Street
South, Minneapolis, MN 55455. Phone: 612-625-0142; fax: 612-625-3513.
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