Transforming Care: A Christian Vision of Nursing Practice (22 page)

What about enjoyment, the ability to interact with one's surroundings
in ways that bring satisfaction to embodiment? What if individuals espouse a sense of a high level of well-being when they are not battling the
difficult side effects of psychotropic medications? What about the bipolar
client who likes the "highs" associated with mania? What if a client "enjoys" the voices that actually constitute a part of her "social network"? In
short, what if their symptoms bother us more than them? Of course, there
are many times when people will report the frightening and disturbing nature of their symptoms, but there are also the cases where an individual is
not particularly bothered by delusions. In this situation, we need to determine if the principle of enjoyment is compelling enough to justify nonadherence. In addition, it may be necessary to reflect on whether this is
the only viable source of enjoyment for the individual.

Although we have argued that "respect for persons" can never be reduced to mere autonomy, we do still need to think carefully about client
autonomy and agency when we attempt to require adherence. Several
nursing authors have identified the potential for issues of control, domination, and coercion to be central to dialogue about medication compliance
rather than issues of emancipation or empowerment (Marland and Cash
2001; Murphy and Canales 2001), which might be more consistent with
notions of agency. Although we believe that the concept of autonomy
needs to be qualified by a Christian view of interdependence, we also affirm that agency is a critical element of being the embodied image-bearer
of God. Possession of such agency allows us to have some control over our
lives in terms of what we do and how we make our decisions - a key issue
for some who feel as though their agency has already been lessened by a
persistent mental illness. Perhaps we need to consider, however, the fact
that few persons have totally unconstrained agency and autonomy. Generally, we do not have the option, in the
name of autonomy, to engage in behavior that might be harmful to others, for
example. So notions of autonomy and
agency need to be set alongside valid reasons for restraint. In that case, a key issue
to be addressed is what actually constitutes a valid reason for the constraint of
one's autonomy relative to medication
adherence. While concerns about serious
harm to a client or another provide valid
and important limits on the range of autonomous choice, we still need to
think carefully about enhancing and respecting client agency in cases
where such harm is not the central issue.

Chambliss (1996) has suggested that if large numbers of clients are resistant to a particular treatment regime, the problem may not be the
nonadherence of these individuals; rather, perhaps the problem is that
"the staff may be boldly noncompliant with the patient's own wishes"
(138). Does the challenge of nonadherence actually belong to health care
professionals rather than clients? Clearly, there is likely to be some truth in
this assertion. It seems obvious that far more attention needs to be devoted to the development of true partnering relationships, where there is a sharing of information, perspectives, power, and decision making between clients and health care professionals in regard to medication adherence issues.

One of the components of
self-care agency is the ability
to make decisions about the
care of self and to
operationalize these decisions.

DOROTHEA OREM

On the other hand, we cannot discount the reality that psychotropic
medication has proven to be highly effective in the treatment of mental
illness (Kemppainen et al. 2003, 41). Advocating for something that has
been shown, through research, to be effective is consistent with nursing's commitment to deliver evidence-based practice to its clients. Nurses are not only
advocates for their clients; they are also
advocates to their clients. Since adherence
to psychotropic medications has also
been shown to maximize the functioning
of persons with mental illness, allowing
them to live independent and productive
lives in the community (Kozuki and Froelicher 2003, 57), then encouraging medication adherence becomes critically important to independence.
And relative independence is central to the notion of a person as an embodied image-bearer of God.

Further, how should we regard the cyclical relapse and rehospitalization that so often occur with nonadherence (Jarboe 2002; Kozuki and
Froelicher 2003, 57)? Such a phenomenon consumes a large portion of
our limited health care dollars. This surely must compel us to consider
the broad issues of justice and stewardship. If justice concerns equity and
fairness, how equitable and fair is it to consume enormous amounts of
our health care dollars on a few whose rehospitalizations may have been
preventable, via medication adherence, when these same expenditures
may preclude many from accessing necessary, but less expensive, mental
health services? A note should be included here that it is certainly not the
case that all relapse and rehospitalizations are due to a lack of medication
adherence. While some cases might clearly be a result of nonadherence,
others occur in spite of valiant efforts at managing a complex illness. The
argument that is being explored here pertains only to those cases where
nonadherence decisions appear to have directly resulted in hospitalization. Along these same lines, if stewardship is focused on the wise use of
the finite resources that we have, might these goals be more appropriately addressed by preventing frequent rehospitalizations and devoting increased amounts of funding to mental health promotion and mental illness prevention? Might we not, in essence, get more mileage from our
funds in this manner?

Health professionals have a
responsibility to share information that helps individuals
make informed decisions
about their health care.

IMOGENE KING

Clearly, the issues raised by medication nonadherence are complex,
indeed. They present ethical challenges at the personal, institutional, and
social structure levels. Nurses need to examine all of the facets of this issue
in a careful and thoughtful manner. They also need to deal with the emotional responses they experience themselves, responses we saw in Brian as
he returned to the nursing station after assessing Cheryl.

Juan is a 28-year-old father of three children. He and his wife, Maria, are
both employed at a local cable service provider. Juan is a field technician
while Maria works in the office. Together Juan and Maria have employerprovided group health insurance for themselves and their children. They
are grateful for insurance coverage in this day and age when so many are
without jobs, let alone insurance benefits.

Recently, Juan has been diagnosed with major depression. He has a
strong family history of mood disorders. As Juan begins to seek treatment
for his depression, he and Maria become aware of limitations in their
employer-provided health insurance. Juan discovers that he has coverage
for only ten outpatient visits per year. Given this rather sparse coverage, he
tries to spread out his outpatient visits, only to find himself inadequately
treated, functioning marginally at work, and unable to participate in necessary household and childcare activities with Maria. He has been reprimanded at work and is irritable and argumentative with Maria and the
children at home.

Juan finds himself getting worse. He now needs inpatient hospitalization for depression and suicidal ideation. At this point Maria finds herself
relieved that Juan will finally get intensive treatment for his depression
while hospitalized. She anticipates that the hospitalization period will be
stressful, however, as she attempts to maintain her job, get the children to
childcare, visit Juan in the hospital, and manage the household. Maria's
stress is multiplied exponentially when she learns that their insurance policy limits inpatient treatment to twelve days per year. Given that it is only the first of February, the treatment team suggests a brief hospitalization
focused on ensuring that Juan is able to be safe outside the structured inpatient unit.

Within three days, Juan is back at home again. Juan is exhibiting apathy, an inability to get out of bed in the morning, poor grooming, insomnia, hopelessness, difficulty with decision making, and tearfulness. He
needs to take a leave from work, as he is still unable to function safely in his
role as a field technician. He continues to talk about suicide, and after a
long and difficult month Maria brings him back to the hospital for a second inpatient hospitalization. By this time, Juan feels estranged from both
Maria and his children and it seems likely that he will lose his job.

Juan's second hospitalization spans six days, after which he is discharged home again. The treatment team suggests that Juan take advantage of the Partial Hospitalization Program, in which he would be engaged
in therapy and classes from 9 AM to 4 PM but return home in the evening
for several weeks, to ensure continuity of care. Juan and Maria discover
that their insurance will not cover this type of treatment.

With three days of inpatient treatment and four outpatient visits remaining in his insurance coverage for this year, Juan is determined to attempt to return to work. He does so, but soon he loses his job because of
his inability to concentrate well enough to complete his work safely. Juan
slips further into depression and is hospitalized for a third time this year in
the middle of April. Maria is aware that this hospitalization will probably
not be fully covered by their insurance plan. She tries to figure out how she
can manage parenting responsibilities, her job, caring for Juan, and now
the financial implications of his treatment. Maria is clearly overwhelmed
and perhaps at risk herself. The children's behavior shows signs of the effects of disruption in their home.

Interestingly enough, as Maria shares her circumstances with a coworker, the woman tells her about a mutual acquaintance who had recently been diagnosed with diabetes and found the company health insurance to be very adequate for her numerous visits to her primary health
care provider as well as several hospitalizations to stabilize her blood sugar
and determine an appropriate insulin regime. This leaves Maria wondering why diabetes is well covered by the company insurance plan and depression is so clearly not.

Health insurance coverage for mental health presents the Christian
nurse with a glaring challenge that has far-reaching practice implications. It is common practice that health insurance coverage for mental health
and substance abuse services, if offered at all to beneficiaries, is regularly
provided at different levels than coverage for all other medical and surgical
services. The number of covered outpatient visits and hospital days are often less for mental health and substance abuse. In addition, there is generally the imposition of higher co-payments and deductibles as well as lower
annual and lifetime spending caps. Thus, millions of Americans with mental disorders do not have equal access to health care.

Mental health parity first appeared on the Congressional agenda in
1993. In 1996, Congress passed the first ever Mental Health Parity Act,
whose basic premise was that all health care insurance plans should offer
the same degree of coverage or parity for mental health benefits as provided for medical and surgical benefits. It did not require employers to offer mental health care benefits, but if such benefits were provided they had
to be equal to those offered for medical and surgical care. While this legislation was welcomed as "beginning the process of ending" long-standing
unfair insurance practices (www.nami.org), there is still much work to be
done. There are many loopholes in this legislation, it is rather limited in
scope, and it allows many to skirt the spirit of the law. Therefore, the reality
is that many employers and health insurers still continue to limit mental
health benefits more severely than those for medical and surgical care by
placing new restrictions on outpatient office visits and number of days of
inpatient care or by imposing higher co-payments and deductibles
(www.nmha.org).

The 1996 Act was designed to remain in effect for six years. With that
deadline approaching, Congress tried to pass a new law, the Paul Wellstone
Mental Health Equitable Treatment Act, by the end of 2002. In spite of
widespread support for the bill, Congress failed to pass the bill in time. Instead, they voted to keep the 1996 law in effect for an additional year
(www.nmha.org). At the end of 2003, a similar extension strategy was utilized (http://edworkforce.gov/press) with the intention of considering a
mental health parity bill in early 2004 (www.apna.org). But the question
still looms: what is the future relative to mental health parity?

What of all this is of particular concern to the Christian nurse? First,
psychiatric-mental health nurses have issued a call for action relative to
mental health parity (Thomas and Leavitt 2002). In addition, it is apparent
that the lack of full mental health parity bears the marks of human sin and
brokenness. How can we rationalize acceptance of a system that excludes those with particular types of illnesses from the insurance coverage that
will allow them to get access to treatment so that they can function at a
maximal level?

While many nurses conceptualize their practice as concerned primarily with the microsystem, as Christians we need to move beyond that narrow focus toward a systemic understanding of the environment so as to
recognize its role in the lives of individuals as well as its relationship to
health outcomes for population groups. The case of Juan and Maria demonstrates this especially well. The macrosystem in which Juan and Maria
live affects them negatively as it does thousands of others in like circumstances. The lack of mental health parity represents a social structure, a human construction, that is as much in need of redemption as are individual
human beings. The vocation of Christian nursing includes a call to redeem
such an aspect of the environment just as surely as it includes the call to attend to the suffering of a single person in the care of the nurse.