Transforming Care: A Christian Vision of Nursing Practice (23 page)

Environment is all conditions, circumstances, and influences that surround and
affect the development and
behavior of the person.

CALLISTA ROY

Nursing practice that encompasses "caring about" and "taking care
of" (Tronto 1994, io6) would likely also put this issue on our radar screen.
"Caring about" involves recognizing the
needs inherent in a lack of mental health
parity, while "taking care of" would move
the nurse subsequently to assume some
responsibility for responding to this inequity. For nurses to ignore the macrosystem issues inherent in Juan and Maria's
situation could be construed as "privileged irresponsibility" (Tronto 1994, 121).
Tronto suggests that "those who are relatively privileged are granted by that privilege the opportunity simply to ignore certain forms of hardships that they do not face" (1994, 120-21). In
Tronto's discussion of "privileged irresponsibility" she suggests that generally these persons are also able to avoid providing direct care. Is it possible,
then, that the Christian nurse, who does indeed provide direct care for individuals like Juan and Maria and sees the unmet needs daily in her practice, could still be guilty of such irresponsibility? Certainly this sort of
fallenness is possible for each one of us. But as Christian nurses, we must
recommit ourselves to bearing some larger obligation for "system" issues
such as mental health parity and to answering the call to become agents of
renewal in society.

Kristin, a 20-year-old nursing major, is in a practicum experience in mental health nursing. One of her course requirements is to attend a support
group session of the local National Alliance for the Mentally Ill (NAMI).
The discussion this evening is animated and centers on the lack of housing, jobs, and opportunities for socialization for persons with persistent
mental illnesses as well as the lack of supports for their families. As Kristin
listens to their concerns, she begins to try to imagine her life as the family
members are describing the lives of their loved ones. Instead of the excitement she feels about her promising career, Kristin tries to imagine days
filled with little else besides television, smoking, and boredom. Instead of
the anticipation she feels about someday purchasing a home of her own,
Kristin attempts to envision a lifetime of dingy, substandard adult foster
care homes where she will never have the chance to choose her housemates. Instead of her network of accepting friends, she tries to step into the
shoes of those who have few friends who really understand them and their
illness. Kristin also begins to think about the 24-year-old client with a
schizoaffective disorder that she cared for on the acute care unit this week.
She wonders where this client went after her brief hospitalization and what
her quality of life will be.

Kristin is shocked to hear the story of one woman who had four children - two with graduate degrees and two with schizophrenia. This
woman had raised these children essentially alone because her husband
had left the family. The woman told of a time when she had no choice but
to tell her 19-year-old daughter to get out of her home, since "it was either
her or me and I had three other children to care for." The woman shared
her anguish about this decision but indicated that there were no supports
for families trying to provide care for mentally ill members: "we were on
our own." This daughter spent nearly two years homeless, on the streets,
and mentally ill. As Kristin leaves the meeting, she feels overwhelmed, sad,
and uncertain about what, if anything, a nurse can do about situations
such as these.

Our previous discussions about macrosystem issues, "caring about,"
"taking care of," and justice provide an excellent framework for us to consider seriously how our current mental health care system might be redeemed. How might the mental health care system be structured in such a
way that necessary services to promote and protect the health of individu als are in place? How could the particular needs of those with persistent
mental illnesses be addressed? The current American mental health care
system is crisis driven. Individuals are admitted to acute care facilities
when they are exhibiting suicidal or psychotic behavior, for example. But,
as one family member put it, once this crisis passes, discharge occurs "immediately and prematurely, services drop off dramatically, and this lack of
support soon leads to a new crisis" (Doornbos 2002, 42).

In between crises, the family struggles to provide the majority of the
care without the support of a system that might promote health as well as
create structure, purpose, and meaning in the lives of individuals. Families
of those with persistent mental illnesses speak eloquently of the need for a
continuum of care that is comprehensive, multifaceted, and aimed at assisting one to function at a maximal level of wellness (Doornbos 2002, 42).
They say such a system would include not only crisis care but also continuity of care, perhaps via a strong case management model, a full range of
necessary rehabilitation services, including decent housing options -
both supervised and unsupervised - education or vocational training,
job opportunities, life skills training (i.e., money management, self-care,
use of public transportation, social skills), and communities of support for
clients and families alike. In short, the system would promote health rather
than simply providing episodic treatment for mental illness.

It is not surprising to find that clients are concerned about these same
issues. One analysis of the literature (Horsfall 2003) notes that clients are
primarily worried about unemployment, poverty, insecure accommodations, and stigma. The same study notes that these concerns have been
marginalized, perhaps because they fall outside the purview of contemporary psychiatry. The author suggests, however, that because nursing has
traditionally focused on activities of daily living that are impeded by illness, the discipline has a responsibility to assist consumers with difficulties
that arise from such structural constraints.

Superimposed upon the concerns of the individuals and families
struggling with persistent mental illnesses are the conclusions of the New
Freedom Commission on Mental Health, which was convened in the
spring of 2002. In its final report, issued July 22, 2003, the commission
bluntly asserted that the American mental health care system is in shambles. The report cited the fragmentation of services and programs that
pervades the delivery system and creates significant obstacles to quality
care. It outlined the consequences of our failure to help this vulnerable population. Many persons with serious mental illnesses are homeless, unemployed, dependent on alcohol and drugs, jailed inappropriately, or go
without any treatment at all (http://www.mentalhealthcommission.gov/
reports/interim_report.htm; http://www.mentalhealthcommission.gov/
reports/finalreport/fullreport-o2.htm).

It seems obvious that our fallen mental health care system presents an
occasion for hope, longing, and alternative imagination (Plantinga 2002,
8). We long for and imagine a world - and, in fact, a mental health care
system - that more closely resembles a caring and just system that would
be pleasing to God. Unconstrained by history and previous "solutions," the
Christian nurse may be freed to use an alternative imagination to work toward novel solutions that seek to enact both caring and justice as they
might pertain to those with mental illnesses. Perhaps this alternative imagination might move us toward a more functional mental health care system. Phillips and Benner suggest not just a simple reform of the health
care system but rather a transformation of it:

If we were able to replace our disease care system with caring practices
that foster illness prevention and health promotion so that clinical
wisdom could be fostered for caregivers and care receivers alike, we
would alter dramatically how we are spending our health care dollar. If
health care workers challenged their preoccupation with pathology
and deficits and focused on wholeness, and on what creates wholeness,
our therapies and structures for health care would change. As we more
closely see what we have created we can free ourselves to create new visions for our health care systems. (Phillips and Benner 1994, 59)

Similarly, the Freedom Commission on Mental Health concluded that the
United States should fundamentally transform its system for treating people with mental illnesses such that services actively facilitate recovery and
build resilience to face the challenges of life. This report serves as the clarion call to pursue a transformed system that would strive to provide the
opportunity for those with serious mental illnesses to live, work, learn, and
participate fully in their communities (Executive Order 13263 of April 29,
2002; Iglehart 2004, 507). Such a task is formidable but worthy of our efforts.

Perhaps we can be encouraged by a "promising glimpse" of what a
transformed system might look like. Consider again our initial case involv ing Jeff, who lives in a residential setting with five other men. The staff is
kind, motivated, and invested. There is minimal staff turnover at Jeff's
home; in fact, each staff member has worked there at least four years and
thus has established meaningful relationships with both Jeff and his family. A sense of hospitality and community has been created among the residents, too, as each attempts to respond with supportive and caring gestures
toward their housemates as they struggle with particular symptoms or issues. The staff and residents are currently planning a party for Jeff's home
as well as three other similar homes in their system. The residents may invite a date, if they choose, for an evening of dancing, games, pictures, and
food. The party will be held at the Clubhouse of Montgomery County. The
Clubhouse is supported by tax dollars and is a place run by and for those
with persistent mental illnesses. Jeff and his housemates often go there to
have coffee, to play cards or pool, to receive job counseling, to take courses,
to do volunteer work, or simply to socialize with others in similar circumstances. Jeff is planning to leave an hour early from his part-time job at
Goodwill Industries to get ready. Jeff's parents have offered to decorate the
Clubhouse prior to the event and will assist that evening with music and
food.

In this scenario, we can identify several elements of shalom relating to
the goal of a full continuum of mental health care. The availability of a variety of quality housing options that are pleasant, safe, and clean as well as
nurturing and supportive is critical. In the cases where persons with mental illness require staff supervision in their living environment, minimal
staff turnover and obvious investment in the clients and the work of promoting health even in the face of serious mental illness is crucial. Meaningful employment, properly fitted to the individual's gifts, cognizant of
the particularities of mental illness, and engendering a sense of purpose
and fulfillment is a key element in fostering shalom as well. Such a proposal may require vocational testing or counseling as well as further formal education. Opportunities and places to socialize with others in similar
circumstances is a universal need that is certainly shared by those with
mental illnesses. Each of these initiatives will require tax dollars directed at
stabilization and rehabilitation of those with persistent mental illnesses
rather than simply crisis management for their acute episodes. Further,
partnering with families who provide a sense of constancy, stability, and
love to this vulnerable group is vital. In essence, Jeff's case allows us to envision the goal of using tax dollars to create locations of shalom for those with mental illnesses in housing, occupational, and social settings while
actively collaborating with their families.

Lydia is a bright, attractive, and popular young woman who was active in
high school athletics. She was elected a class officer and voted homecoming queen during her senior year in high school. Lydia went on to college
and majored in communications. Even as things were beginning to unravel
for Lydia during her later years in college, she struggled to complete her
studies. As Lydia battled racing thoughts, hyperactivity, interrupted sleep,
and disturbing voices, she was able to graduate with a 3.5 grade point average. Several years later Lydia's family found a college notebook in which
she had scribbled over and over, every line, every page, from cover to cover:
"I am not going crazy! I am not going crazy!" Lydia's functioning deteriorated to the point where numerous hospitalizations were necessary; underemployment was a chronic situation, and, in fact, any sort of employment was nearly impossible to maintain; independent living was not
feasible; and her social network had dwindled to consist only of her family.

Consider the nurses who care for Lydia. What of their raised fists at
the God who created Lydia and now seemingly has allowed a debilitating
illness to overtake her in the prime of her life? What about their sense of
injustice concerning a beautiful young woman for whom the rules have
changed twenty-some years into her life? How should they navigate their
dismay at the symptoms that daily present a challenge for Lydia? How do
they continue their work in the face of their nearly immobilizing sadness
at the suffering that they see in Lydia's life? What of the nurses' weeping
over the difficulty that Lydia faces in finding meaningful work? How
should the nurses reconcile their keen sense that we were created to be relational and yet that Lydia's illness directly impacts her ability to be in
community with others? What about the nurses' overwhelming sense of
powerlessness in the face of a formidable adversary such as a bipolar disorder? How should these nurses go about keeping the hopelessness that continually threatens to creep into their consciousness in check, given the current state of the mental health care system and its "managed care" for
clients such as Lydia?