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Running head: CHRONIC ILLNESS 1
CHRONIC ILLNESS 8
Treatment of Dementias, Including Alzheimer’s Disease
Estrella Gonzalez
South University
SU-NSG4055-WK1-A3
Treatment of Dementias, Including Alzheimer’s disease
About Dementia and Alzheimer’s disease
Dementia is characterized by the declining of cognitive
functioning. The thinking, memory, and reasoning capabilities
of a person with dementia is influenced to a point that interferes
with their ability to do their daily activities (Alzheimer’s
Association, 2016). The dementia itself is not an illness it is the
most prevailing symptom of Alzheimer’s. Alzheimer’s disease
is the cause of between 60% and 80% of all dementia cases
(Alzheimer’s Association, 2016). There are various other
factors that can lead to a demented state such as severe mental
illness such as depression, delirium, dehydration, chronic
alcoholism, some brain tumors and illnesses, or even Vitamin
B12 deficiency (Ridley, Draper & Withall, 2013; Rossor et al.,
2010). The reason for selecting dementias and Alzheimer’s
disease is because these are associated with much other
comorbidity which can easily affect a patient when not properly
taken care of. Individuals with dementia are three times more
prone to be hospitalized for preventable reasons. The loss of
cognitive functioning makes the patients of dementia and
Alzheimer’s to be dependent on others to do even the simplest
of daily tasks. This makes coping with these conditions hard not
only for the patients but also for their caregivers, family,
support groups, and peers. Therefore, it is important to develop
a good care plan for such patients to cater for their psychosocial
needs as well as their biomedical needs.
Morbidity and Comorbidity of Dementia and Alzheimer’s
disease
Other form of dementia and Alzheimer’s are leading cause of
disability in America. In 2014 Alzheimer was one of the
principles causes of mortality in the United States. Based on the
death certificate data, Alzheimer’s is the 6th leading cause of
mortality for adults aged 18 and older (HealthyPeople2020, nd).
This illness is mainly common among the elderly population
aged 65 and older. As of 2016, the prevalence of this disease in
this population group was 11%, which are approximately 5.2
million people. Around 4% of all deaths in 2014 were
Alzheimer’s related (HealthyPeople2020, nd). The percentage of
Alzheimer’s disease-related deaths has increased significantly,
partly because of the increased elderly population. The death
rate due to Alzheimer’s has increased by 55% since 1999
(HealthyPeople2020, nd).
Alzheimer’s and other forms of dementia are commonly
associated with other physical and psychiatric comorbidities.
Some of the common psychiatric comorbidities associated with
dementia and Alzheimer’s include depression, bipolar disorder,
and schizophrenia (Garcez et al., 2015). They have also been
associated with other non-psychiatric illnesses such as sleep
apnea, thyroid disorder, glaucoma, and osteoporosis (Duthie,
Chew, & Soiza, 2011). Beatriz Poblador-Plou et al. (2014), also
found that dementia commonly co-occurs with other illnesses
like diabetes, hypertension, congestive heart failure,
cerebrovascular diseases, Parkinson’s disease, cardiac
arrhythmia, and neurosis.
The Impact of Dementia, including Alzheimer’s disease on the
Overall Health of the Nation
Alzheimer is expected to increase double in the future costs of
America’s public health system. Currently more than 5 million
individuals live with dementia in our country, Alzheimer’s
disease being the most common and only 4% of the diagnoses
being of people below the age of 65 (Dharmarajan & Gunturu,
2009). Dementia is one of the most costly chronic illnesses in
our country. The government uses costs above $100 million in
efforts to take care of this syndrome. The average annual cost of
taking care of Alzheimer’s per patient is around $42,000 for
hospitalized patients and $12,000 for those living within the
communities (Dharmarajan & Gunturu, 2009). Therefore, one of
the main impacts of this illness on the nation is the increased
healthcare costs, which are catered for by the government and
the families, friends, and support systems of the patients.
Healthy People 2020 Goals and Objectives for Dementias and
Alzheimer’s disease
The main goal of the Healthy People 2020 initiative is to
decrease the deaths linked with this medical conditions previous
mentioned and reduce the expenses relate with keeping up and
upgrading the personal satisfaction for the general population
with Alzheimer's disease and other forms of chronic dementia.
There are two main objectives that need to be achieved for this
goal to be materialized. First, Healthy People 2020 has the goal
to expand the quantity of elderly above 65 years who are
diagnosed with Alzheimer or other forms of dementia and to
have caregivers who are aware of their respective diagnoses.
Between 2007 and 2009, only 34.8 patients of dementia and
Alzheimer’s were diagnosed of their respective illnesses and
received the expected treatment. Healthy People 2020 hope to
achieve a 10% improvement on this rate. The second objective
is to reduce the number of preventable hospitalization of elderly
people above the age of 65 who have dementia, including
Alzheimer’s disease. Between 2006 and 2009, 23.5% of elderly
people diagnosed with dementia or Alzheimer’s disease were
hospitalized because of a preventable issue. Healthy People
2020 aim to have a 10% improvement to reduce this rate to
22.8. The achievement of these goals and objectives will ensure
that patients with these conditions will receive the appropriate
treatment and care to reduce the negative outcomes associated
with them.
The above medical condition are also responsible for the overall
decline of the quality of public health in America. The illnesses
are associated with various other physical and psychological
illnesses, which in some cases lead to the death of the patients.
This is among of main causes of mortality for the older
population in the United States. Therefore, there is need to
develop better care models for patients with these conditions to
reduce the negative effect their illness has on America’s public
health.
Questionnaire for Care Plan Preparation
Considering that Dementias and Alzheimer’s disease are
characterized by cognitive decline, it is expected that some
patients may not be able to answer this questionnaire.
Therefore, this questionnaire of meant for patients who are at
the first stages of their illness when their cognitive skills are
still not completely impaired so that they can have long enough
periods of being lucid. For the patients without the cognitive
abilities to understand or answer these questions, their
immediate family members or caregivers with an extended
understanding of their illness can answer the questions. These
questions aim at understanding the psychosocial life of the
patient to develop a care plan that will not only target the
illness but also its psychological and social effects on the
patient.
· Have you been diagnosed any of the disease mentioned
before? If yes, how long ago?
· What symptoms have you experienced as a result of the
illness?
· Have you had any treatments targeting this illness
specifically?
· Have you experienced other illnesses relating to this illness?
· How do you feel dementia or Alzheimer’s disease has
impacted the quality of your life?
· Do you have any support system such as family, friends, or
acquaintances that assist in taking care of you?
· What are your likes, dislikes, and interests?
· How was your day structured before you were diagnosed with
dementia or Alzheimer’s disease?
· At what time of the day do you function the best?
· What is your daily routine like after diagnosis?
References
Alzheimer’s Association. (2016) Alzheimer’s Disease Facts and
Figures. Alzheimer’s and Dementia 12(4):405–509.
Dharmarajan, T. S., & Gunturu, S. G. (2009). Alzheimer's
disease: a healthcare burden of epidemic proportion. American
health & drug benefits, 2(1), 39.
Duthie, A., Chew, D., & Soiza, R. L. (2011). Non-psychiatric
comorbidity associated with Alzheimer’s disease. QJM: An
International Journal of Medicine, 104(11), 913-920.
Garcez, M. L., Falchetti, A. C. B., Mina, F., & Budni, J. (2015).
Alzheimer s disease associated with psychiatric comorbidities.
Anais da Academia Brasileira de Ciências, 87(2), 1461-1473.
HealthyPeople2020 (n.d). Dementia, Inclusing Alzheimer’s
Disease. Retrieved from:
https://www.healthypeople.gov/2020/topics-
objectives/topic/dementias-including-alzheimers-disease
National Center for Health Statistics. (2015). Health, United
States, With Special Feature on Racial and Ethnic Health
Disparities. Hyattsville, (MD): National Center for Health
Statistics; 2016. Report No. 2016-1232. Retrieved from:
http://www.cdc.gov/nchs/data/nvsr/nvsr64/nvsr64_02.pdf.
Poblador-Plou, B., Calderón-Larrañaga, A., Marta-Moreno, J.,
Hancco-Saavedra, J., Sicras-Mainar, A., Soljak, M., & Prados-
Torres, A. (2014). Comorbidity of dementia: a cross-sectional
study of primary care older patients. BMC psychiatry, 14(1), 84.
Ridley, N. J., Draper, B., & Withall, A. (2013). Alcohol-related
dementia: an update of the evidence. Alzheimer's research &
therapy, 5(1), 3.
CHAPTER 15
Health Policy, Politics, and Professional Ethics
Carol R. Taylor, Susan I. Belanger
“To see what is right and not do it is want of courage.”
Confucius
Writing in the Encyclopedia of Bioethics, Dan Callahan, one of
the founders of U.S. bioethics, states that three paramount
human questions lie at the heart of bioethics:
• What kind of person ought I be to live a moral life and make
good ethical decisions?
• What are my duties and obligations to other individuals whose
life and well-being may be affected by my actions?
• What do I owe the common good or the public interest, in my
life as a member of society?
The authors of this chapter believe that too few nurses take
seriously their responsibilities as citizens, in spite of being
frequently reminded that the sheer numbers as the largest group
of health professionals (3.1 million) and as the most trusted
professionals (Gallup's annual honesty and ethics survey), make
us a formidable force (2013). Ethics may be defined as the
formal study of who we ought to be, how we should make
decisions and behave. This chapter centers around what is
reasonable to expect of professional nurses as citizens in regard
to designing and delivering a just health system that meets the
needs of all, with special concern for the most vulnerable.
Designing a system for delivering health care that adequately
meets the needs of a diverse public is a complex
challenge. Health care planners have always worried about
access, quality, and cost. Who should get what quality of
care and at what cost? What you think about health care in the
United States largely depends on your past experiences. If you
are well insured or independently wealthy, you can access the
best health care in the world. If you lack insurance andhave
limited financial resources, you may die of a disease that might
have been prevented or treated at an early stage if you had had
access to quality care. The U.S. system has been criticized for
providing too little care to some and too much of the wrong
type of care to others. Many now believe that a moral society
owes health care to its citizens. Health care is like clean water,
sanitation, and basic education. Others, however, believe
that health care is a commodity, like automobiles, to be
sold and purchased in the marketplace. If you lack the funds to
buy a car, that may be sad, but society has no obligation to
purchase a car for you. As you read this chapter, ask yourself
what you believe about health care. Is it simply unfortunate if
people cannot afford the health care they and their families
need?
Daily nursing practice and people's health, wellbeing, and dying
are directly affected by decisions made by governments,
insurers, and health care institutions. Nursing needs a seat at
these decision-making tables and nurses must be
prepared and willing to take these seats. As the country's most
trusted health care professionals, the nurses in these seats must
be committed to ethical decision making. Drivers for much of
human enterprise are power, position, prestige,
profit, and politics (Barnet, n.d.). Strikingly absent from this
list are people, patients, the public, and the poor! Nursing's
challenge, as profits and politics increasingly
dictate health priorities, is to keep health care strongly focused
on the needs of patients, their families, and the
public. Health care in the United States is a business, revenues
need to be generated to make care possible, 138but health care
can never be only a business. First and primarily, it is a service
a moral society provides for its vulnerable members. Nurses
play a critical role in keeping health care centered on the people
it purports to serve.
This chapter opens with a description of the ethics of
influencing policy and explores the professional ethics of
nurses and their advocacy and health policy responsibilities. It
offers a brief analyses of how nurses can use their voice to
influence policy regarding scarce resource
allocations and workplace issues. Throughout, short reflective
practice vignettes invite readers to reflect on the adequacy of
their moral agency in select advocacy challenges.
The Ethics of Influencing Policy
An ethical critique of human behavior involves paying attention
to the intention of the moral agent, the nature of the act
performed, the consequences of the action, and the
circumstances surrounding the act. Ethics has to do with
right and wrong in this world, and policy and politics has
everything to do with what happens to people in this world.
Moreover, both ethics and politics have to do with making life
better for oneself and others. Surely both deal with
power andpowerlessness, with human rights and balancing
claims, with justice and fairness, and with
good and evil. And good and evil are not the same as
right and wrong. Right and wrong pertain to adherence to
principles; good and evil pertain to the intent of the
doer and the impact the deed has on other people. Surely
policy andpolitics involves justice in the distribution of social
goods; fairness and equity in relationships among and between
people of different races, genders, and creeds; and access to
education and assistance when one is in need. Although the
goodness of an action lies in the intent and integrity of the
human being who performs it, the rightness or wrongness of an
action is judged by the difference it makes in the world.
Therefore the principles applied in ethical analysis generally
derive from a consideration of the duties one person owes
another by virtue of commitments made and roles
assumed, and/or a consideration of the effects that a choice of
action could have on one's own life and the lives of others.
In a perfect world, legislators would all intend the good of the
public they serve and use ethical means to achieve good
outcomes. In the real world, legislators and lobbyists intend
many things other than the good of the public and some use
unethical means to achieve dubious ends. A democracy with an
increasingly heterogeneous public necessarily involves
compromise. Which strategies to influence policy can nurses
use without sacrificing personal and professionalintegrity? Each
advocacy strategy involves a variation of the same question,
that is, what means can be legitimately used to achieve an end
that someone (or a political party or the electorate) believes to
be good? The ends-and-means argument is often explained as
follows. We can cut a man open (an evil means) to save his life
(a good end). We can remove a perfectly healthy kidney from
one person (an evil means) to transplant it to save the
life and health of another (a good end). We admire the person
who sacrifices his life (an evil means) to save the life of his
friend (a good end). If our intention (to produce a good) can
justify the means (doing an evil), then why can't we torture one
man (an evil means) to gain information that might save another
person's life or even the lives of many people (a good end)?
Should we assure the passage of health care insurance reform (a
good end) by strong-arm tactics (an evil means)?
It is important to note that cutting a person open, even to save
his life, is not a good thing unless the person consents to it.
Similarly one cannot steal one person's kidney even to save
another; rather, the consent of both donor and recipient is
required. The prisoner does not choose to be tortured; although
it is very tempting to justify torture to protect innocent lives, if
a man can be tortured on the suspicion that he may know
something subversive, who is safe from governmental
oppression? The price we pay for freedom and human rights is
to grant them to all people, not just a favored few. And yes, it is
risky, and yes, it may reduce our “efficiency” and in some cases
it may even lead to loss of life. But the alternative is that no
one has rights (i.e., just claims); rights become the privilege of
a 139favored group, while all other individuals are utterly
helpless before the power of the state.
Certainly the electorate does not consent to the corruption of
the legislative process, and even if a majority did approve of
bending the rules of fair engagement to ensure that a particular
piece of legislation is passed, would that make it right? Would
it not end up threatening the very foundations of a free society
(because the foundation of a republic lies in the honesty of its
processes)? What are the differences between normal legislative
wrangling and abuse of power? What does it mean when
political parties refuse to participate in the legislative
process and/or use blatant scare tactics? What is legitimate
dissent, and what is a refusal to accept democratic outcomes
unless you happen to agree with them? Without civil
disobedience, we would still have the Jim Crow
laws. And without respect for the law, a society degenerates
into either despotism or anarchy.
When people ask whether it is wrong to lie about something
(e.g., the number of people affected by a particular disease) to
get funding for research and/or treatment of patients with a
particular disease, in a word the answer is yes. It is wrong. Why
is lying wrong? It's wrong because it undermines the foundation
of any relationship: trust. In like manner, lying to further a
political agenda is wrong not only because it undermines trust,
but also because it fosters further dishonesty. Judging by the
amount of political dishonesty reported in the media, one is led
to the conclusion that there is a lot of lying going on! Adding to
it, telling more lies to further our own agenda, will only make
matters worse.
Reflective Practice: Pants on Fire
Sarah Palin is famous for urging her supporters to oppose
Democratic plans for health care using the scare tactic of death
panels. She said the Democrats plan to reduce health care costs
by simply refusing to pay for care:
And who will suffer the most when they ration care? The sick,
the elderly, and the disabled, of course. The America I
know and love is not one in which my parents or my baby with
Down Syndrome will have to stand in front of Obama's death
panel so his bureaucrats can decide, based on a subjective
judgment of their level of productivity in society, whether they
are worthy of health care. Such a system is downright evil.
In fact there was no panel in any version of the health care bills
in Congress that judges a person's level of productivity in
society to determine whether they are worthy of health care.
The truth is that the proposed health bill would have allowed
Medicare, for the first time, to pay for optional doctors'
appointments for patients to discuss living wills and other end-
of-life issues with their physicians. PolitiFact awarded Palin
with the 2009 Lie of the Year for the death panel claim, but the
political impact of her statement is hard to overstate. In 2011,
the Obama administration even deleted all references to end-of-
life planning in a new Medicare regulation when opponents
interpreted the move as a back-door effort to allow such
planning. So even, in the regulations Palin achieved her goal
(Holan, 2009).
Discussion Questions
1. How do you judge Palin's quote? Effective strategy to oppose
Democrats' plans for health care reform or unethical
scaremongering?
2. Reflect on what informs your judgment: commitment to
advance care planning, analysis of facts, political party
loyalties?
3. Is it right for nurses to endorse health reform legislation even
if the legislation is not perfect? (The answer is yes; it may
indeed be the right thing to do.)
Remember, politics is about relationships, and relationships
cannot prosper when one party insists that the other party must
agree with them on every (or even any) issue. It is not wrong to
compromise; compromise is part of the give and take of
relationships, and it is part of the give and take of politics.
What is critical is knowing when it is possible to compromise
without sacrificing personal integrity. This prompts the question
of whether it can be acceptable to distort an issue to manipulate
public 140opinion or to win the support of a particular piece of
legislation. It is usually, however, possible to frame a
discussion in a manner that is more acceptable to a certain
constituency without lying in this manner. For example, in
the health care arena, one can use words that appeal to known
values, words such as tradition and legitimate authority (words
that tend to appeal to conservatives), and words such as
autonomous and experimental (words that tend to appeal to
liberals). Knowing the target audience and framing the issue in
words that will help them listen (or at least not harden their
opposition) is smart, not unethical. Now to return to the issue of
nurses' (and others') lobbying activities: Here compromise is in
order. Any professional group has a duty imposed on it by both
its social role and its code of ethics, to push forward
laws and policies that protect or advance the best interests of
those whom they serve. And finally, any citizen, particularly a
knowledgeable one, has a civic duty to speak out for the
common good.
Professional Ethics
A professional ethic is built around three essential components:
1. Its purpose. All professions develop in response to a social
need, one that the members of the profession promise to meet.
Put in legalistic terms, this need (along with the
power and privileges society grants to the profession to help the
professionals meet the need) and the profession's promised
response to it constitute the profession's contract with society.
2. The conduct expected of the professional. The ethical code
developed and promulgated by the profession, its code of ethics,
describes the conduct society has a right to expect from
professionals as they go about the business of the profession.
However, it is not a list of prescribed do's and dont's but rather
an articulation of those values that, in fact, outline the scope of
the profession's practice and the relationships that ought to
pertain between its members and the lay public, among the
practitioners of this profession, between the practitioner and the
profession itself, and between the professional and the
community within which he or she practices.
3. The skills and outcomes expected in professional practice.
Nursing's standards of practice state with some precision the
obligations of nurses in specific areas of practice. Clearly, each
of these components is dynamic, that is, subject to
change and reevaluation as the profession grows, as knowledge
increases, and as social mores and expectations develop. This is
not to claim that there are no constants (e.g., a general
imperative to respect persons), but rather to say that the
meaning and application of the imperatives change.
Professional ethics is the study of how personal moral norms
apply or conflict with the promises and duties of one's
profession. Society demands that professionals be held to a
separate moral standard of conduct because the choices
professionals make affect other people's lives more than their
own. Nursing's foundational documents make each nurse's
advocacy and health policy responsibilities clear. Although
some may think that advocacy and health policy are an ethical
ideal, they are rather a nonnegotiable moral obligation
embedded in the nursing role. The ANA Code of Ethics for
Nurses states: “The nurse promotes, advocates for, and strives
to protect the health, safety, and rights of the patient” (2010).
The 2015 revision of the Code of Ethics (soon to be published)
places an even stronger emphasis on nursing's advocacy
responsibilities. ANA's Social Policy Statement: The Essence of
the Profession was published in 1980 and revised in 1995,
2003, and 2010. The introduction to the 2003 revision
emphasizes nurses' central role in effecting health policy.
Nursing is the pivotal health care profession, highly valued for
its specialized knowledge, skill, and caring in improving
the health status of the public andensuring safe, effective,
quality care. The profession mirrors the diverse population it
serves and provides leadership to create positive changes
in health policy and delivery systems (p. 1).
The 2003 revision also included for the first time in its list of
values and assumptions of nursing's social contract, “Public
policy and the health care delivery system influence
the health and well-being of society and professional nursing”
(p. 4). This 141phrase appears again in the 2010 revision under
the heading, “The elements of nursing's social contract” (p. 6).
The 2010 revision also notes as a key social concern
in health care and nursing “Expansion of health care
resources andhealth policy” (p. 4).
Reflective Practice: Foundational Nursing Documents
The American Nursing Association publishes three documents
packaged as the Foundation of Nursing Package, 2010. Included
in the package are the Code of Ethics for Nurses and the
revised Nursing Social Policy Statement and Nursing
Scope and Standards of Practice. Together these documents
describe what is reasonable for the U.S. public to expect of
nurses. As this text goes to press, a newly revised Code of
Ethics is being studied and may be available as early as 2015.
It is the responsibility of every professional nurse to be familiar
with these foundational documents and to continually assess if
her/his professional practice is congruent with what is expected.
Personal Questions
1. When, if ever, did you read and reflect on these core
documents?
2. In what ways do you expect your Code of Ethics to change?
Do you support these changes?
3. Have you participated in discussions about how these
documents pertain to your practice and what they suggest as
growth opportunities for you or your colleagues?
4. What is reasonable to expect of every professional nurse in
regard to advocacy and health policy?
Moral Agency and the Nurse
Once professional nurses understand what is reasonable for the
public to expect of them, the next step is to determine if one has
the capacity to meet these expectations. In other words, one
must ask, “Am I trustworthy?” Moral agency is quite simply the
ability to be what is professed: a human, a parent,
a professionalnurse. Moral agency in any specific situation
requires more than knowing what is right to do; it also entails:
• Moral character: Cultivated dispositions that allow one to act
as one believes one ought to act.
• Moral valuing: Valuing in a conscious and critical way which
squares with good moral character and ethical integrity. For
nurses this is a commitment to patient well-being and a degree
of altruism.
• Moral sensibility: The ability to recognize the moral moment
when an ethical challenge presents.
• Moral responsiveness: The ability and willingness to respond
to the ethical challenge.
• Ethical reasoning and discernment: The knowledge
of, and ability to use, sound theoretical and practical approaches
to thinking through ethical challenges and to ultimately decide
how best to respond to this particular challenge after
identifying and weighing alternative courses of action; using
these approaches to both inform and justify moral behavior.
(See Box 15-1.)
Box 15-1
Ethics Inventory
Think about a recent ethical challenge you encountered in
practice.
• What signals you to an ethical challenge? Intellectual
disconnect? Queasy feeling in the pit of your stomach?
Discomfort or disappointment in the way you or your team are
responding? Yuck factor?
• Pay attention to how you reason as you think about how you
should and would respond.
• What informs your judgment? Rephrased, how do you
calibrate your moral compass?
• Are there moral rules that apply?
• Do you have a responsibility to respond? Are you personally
able and willing to respond? Are there institutional or other
external variables making it difficult or impossible to respond?
• What counts as a good response? What criteria/principles do
you use to inform, justify, and evaluate your response?
• Promotes human dignity and the common good
• Maximizes good and minimizes harm
• Justly distributes goods and harms
• Respects rights
• Responsive to vulnerabilities
• Promotes virtue
• Compatible with Code of Ethics for Nurses
• Other
• What criteria/principles do you use to critique/evaluate your
response?
• We stayed out of trouble, not greatly inconvenienced.
• We made money or at the very least didn't lose money!
• Our patient satisfaction scores will be high, or at least not
negative
• Able to put my head on my pillow and fall asleep peacefully
• My/our reputation is intact.
• Transparency [Washington Post test; I could share how I/we
responded with my children and feel proud.]
• Consistency
• Other
• Are there any universal (nonnegotiable) moral obligations that
obligate all health care professionals?
• To whom would you turn if you were uncertain about how to
proceed?
• What agency resources exist to help you think
through and secure a good response? How confident are you that
these resources would facilitate a good resolution of your
concern?
• Can you translate your moral judgments about how best to
respond into action? If you believe that institutional or other
variables are making it impossible to do what you believe is the
ethically right thing to do, what are your options?
• Moral accountability: The ability and willingness to accept
responsibility for one's ethical behavior and to learn from the
experiences of exercising moral agency.
• Transformative moral leadership: Commitment and proven
ability to create a culture that facilitates the exercise of moral
agency, a culture in which individuals are supported in doing
the right thing simply because it is the right thing to do (Taylor,
2015).
Nurses who value their moral agency are familiar with the
principles of bioethics which commit them, all things being
equal, to: (1) respect the autonomy of individuals, (2) act so as
to benefit (beneficence), (3) not harm (nonmaleficence), and (4)
give individuals their due (justice). Other principles include
keeping promises (fidelity) and responsiveness to vulnerability.
A commitment to social justice and the common good has long
characterized the profession of nursing. This commitment calls
for the creation of a society in which all can flourish, not only
the affluent, and the creation of a bottom floor beneath which
no one can fall regarding access to basic nutrition, safe housing,
education, health care, and employment.
142
Reflective Practice: Negotiating Conflicts between Personal
Integrity and ProfessionalResponsibilities
Shortly after the Department of Health and Human Services
(HHS) announced the new federal rule that required all new
private plans to cover prescribed FDA-approved contraceptive
methods without cost-sharing, a number of corporations sued,
claiming that this new requirement violates their religious
rights. These lawsuits have worked their way through the
federal courts and on November 26, 2013, the Supreme Court
agreed to hear two cases that involved for-profit corporations.
The Court agreed to hear a case from the Tenth Circuit Court of
Appeals, which ruled in favor of Hobby Lobby, an Oklahoma-
based chain of craft stores owned by a Christian family who
claim that the contraceptive coverage requirement violates their
company's religious freedom. The Court also agreed to hear a
case from the Third Circuit Court of Appeals, which ruled
against the corporation and its owners, finding that Conestoga
Wood Specialties, a cabinet manufacturer, does not have
religious rights. The Supreme Court decided to take these cases
to resolve the conflict between the two decisions along with
other U.S. Courts of Appeals' rulings (Sobel & Salganicoff,
2013).
Personal Question
1. You are a women's health nurse practitioner and are asked to
collaborate on filing an amicus brief to the court supporting
women's rights to free 143approved contraceptive methods.
From your practice you know how important women's
accessibility to these methods are and have sat with many a
tearful woman contemplating an unplanned pregnancy. You are
Christian, however, and you support your church's stance on not
using contraceptive methods. You feel torn between maintaining
your personal integrity and fulfilling your nursing obligation to
aid poor women without access to basic reproductive services.
How will you reconcile your conflict?
It is important to note here that effecting the right courses of
action is not merely within the scope of the moral agency of the
nurse. Ethics happens in the realm of the individual, the
institution, and society, and each can profoundly influence the
others (Glaser, 1994). A nurse with strong moral agency who is
committed to health policy reform can have a profound
influence on the practice of nurses working in
institutions and can also influence the public's health. Similarly,
a nurse with strong moral agency who is practicing in an
institution willing to sacrifice patient safety and well-being for
financial profit in a society that has yet to guarantee
basic health care for all may feel compromised at every turn.
When a nurse knows the right course of action for a patient,
family, or community and is prevented by internal or external
variables from translating this knowledge into action, moral
distress results, which, if unresolved over time, builds up moral
residue (Epstein & Hamric, 2009; Rushton, 2006). Put yourself
in the shoes of a nurse working in a busy inner city emergency
room. Every day he discharges patients with instructions for
follow-up treatment that he knows will never happen because of
a lack of financial or personal resources. His choices seem to be
to stop caring in order not to experience frustration or distress,
to show up for work like a robot and do his job, or to find
meaning and purpose in working collaboratively to change the
system.
U.S. Health Care Reform
A just and caring society provides for the health care needs of
its people. The 2010 Commonwealth Fund International
comparison of the U.S. health system concluded that despite
having the most costly health system in the world, the United
States consistently underperforms in most dimensions of
performance relative to other countries. “Compared with six
other nations—Australia, Canada, Germany, the Netherlands,
New Zealand, and the United Kingdom—the U.S. health care
system ranks last or next-to-last in five dimensions of a high-
performance health system: quality, access, efficiency,
equity, and healthy lives” (Davis, Schoen, & Stremkis, 2010).
The report was hopeful that newly enacted health reform
legislation in the United States would address these problems by
extending coverage to those without and helping to close gaps
in coverage, leading to improved disease management, care
coordination, and better outcomes over time.
A discouraging 2013 Institute of Medicine
report, U.S. Health in International Perspective: Shorter Lives,
Poorer Health, concluded that although the United States is
among the wealthiest nations in the world, it is far from the
healthiest. Despite spending far more per person on health care
than any other nation, the United States has more people dying
at younger ages than people in almost all other high-income
countries. Among 16 peer nations, all affluent democracies, the
United States is at or near the bottom in nine key areas
of health: infant mortality and low birth weight,
injuries and homicides, teenage pregnancies and sexually
transmitted infections, prevalence of HIV and AIDs, drug-
related deaths, obesity and diabetes, heart disease, chronic lung
disease, and disability. Included as factors linked to the U.S.
disadvantage are inadequate health care, unhealthy
behaviors, and adverse economic and social conditions. “The
tragedy is not that the United States is losing a contest with
other countries, but that Americans are dying and suffering
from illness and injury at rates that are demonstrably
unnecessary” (Woolf & Aron, 2013).
Access to Health Care
Any discussion of health care access must include a review of
human rights and a discussion of whether or not there is such a
thing as a human right to 144healthcare services, and whether or
not a just society would provide a legal right to such services. A
human right is a justice claim to an essential, universal human
need. The justice of the claim is affected by (1) the universality
of the need, (2) the extent to which a person can meet his or her
own needs, and (3) the extent to which others can help meet
these needs without compromising their own fundamental needs.
Some argue that health care services, or at least illness care
services, are not a human right; however, a far larger number
think that such needs can easily meet each of these criteria, at
least under a variety of circumstances. For almost a century,
Presidents and members of Congress have tried and failed to
provide universal health benefits to Americans. There are a few
simple facts that are important: (1) the United States is the only
industrialized country in the world that does not offer some type
of universal health care; (2) each year tens of thousands of
Americans lose their health care coverage caused by
circumstances beyond their control; and (3) the main reason that
Americans file bankruptcy is outstanding medical bills. The
American Nurses Association website chronicles nurses'
decades-long efforts to advocate for health care reforms that
would guarantee access to high-quality health care for all.
Reflective Practice: Accepting the Challenge
The Affordable Care Act (ACA) has been challenged at every
turn. In the 2014 State of the Union address, President Barack
Obama reported:
One last point on financial security. For decades, few things
exposed hard-working families to economic hardship more than
a broken health care system. And in case you haven't heard,
we're in the process of fixing that.
. . . Already, because of the Affordable Care Act, more than 3
million Americans under age 26 have gained coverage under
their parents' plans.
More than 9 million Americans have signed up for
private health insurance or Medicaid coverage—9 million.
And here's another number: zero. Because of this law, no
American, none, zero, can ever again be dropped or denied
coverage for a preexisting condition like asthma or back pain or
cancer. No woman can ever be charged more just because she's
a woman. And we did all this while adding years to Medicare's
finances, keeping Medicare premiums flat and lowering
prescription costs for millions of seniors.
. . . That's why tonight I ask every American who knows
someone without health insurance to help them get covered by
March 31st. Help them get covered. . . . Citizenship demands a
sense of common purpose; participation in the hard work of
self-government; an obligation to serve to our
communities (Obama, 2014).
Personal Question
1. You eagerly watched the State of the Union Address but you
have mixed feelings about the ACA. You come from a family
who greatly distrust big government and want the Act repealed.
As a public health nurse you interact with families everyday
who are complaining about difficulties enrolling in their state's
online health insurance program. You've read about the
successes some have had by contacting navigators in the
governor's Office of Health Reform but you know that many
don't know how to initiate this contact. Are you obligated to do
all you can to get coverage for the public you serve even if this
means setting aside your political commitments?
A 2013 U.S. Subcommittee on Primary Health and Aging
reported that nearly 57 million people in the United States, one
in five Americans, live in areas without adequate access to
primary health care caused by a shortage of providers in their
communities. The facts in this report are sobering:
• Fifty years ago, half of the physicians in the United States
practiced primary care, but today fewer than one in three do.
• As many as 45,000 people die each year because they do not
have health insurance and do not get to a physician on time.
145
• The average primary care physician in the United States is 47
years old, and one-quarter are nearing retirement.
In 2011, about 17,000 physicians graduated from American
medical schools. Despite the fact that over half of patient visits
are for primary care, only 7% of the nation's medical school
graduates now choose a primary care career (Sanders, 2013).
Reflective Practice: the Medicaid 5% Commitment—an Appeal
to Professionalism
More than one fifth of the U.S. population is ensured through
Medicaid, a number that is growing rapidly as the ACA is
implemented (The Kaiser Commission on Medicaid and the
Uninsured, 2014). The Congressional Budget Office predicts
that nine million additional people will gain coverage through
Medicaid in 2014. One key concern is whether the increased
demand will be adequately met, whether there will be a
sufficient number of clinicians who accept new Medicaid
patients. At the present about 30% of office-based physicians do
not accept new Medicaid patients. In certain specialties, the
percentage is considerably higher. The Medicaid reimbursement
rates vary by state; in some cases they are so low that
physicians regularly lose money on Medicaid patients.
In a recent article in the Perspective section of The New
England Journal of Medicine, Lawrence Casalino proposed
asking each physician to commit to providing care for enough
Medicaid enrollees so that at least 5% of their practice consists
of Medicaid patients (2013). Casalino concludes his short
article with these words: “A 5%-commitment campaign would
be a meaningful, highly visible demonstration of physician
professionalism—of putting patients first.”
Discussion Question
1. Nurses have always been at the forefront in ensuring that all
have access to safe, effective, and appropriate care. How likely
are today's advanced practice nurses to respond to Casalino's
challenge by ensuring that their practice commits to providing
at a minimum care for enough Medicaid enrollees so that at
least 5% of their practice consists of Medicaid patients? Will
advanced practice nurses partnering with physicians be able to
bring this issue to the practice and be skilled in effecting a
positive response to Casalino's appeal to professionalism?
Reflective Practice: Your State Turned Down Medicaid
Expansion
As part of the ACA's broader effort to ensure health insurance
coverage for all U.S. residents, the federal government from
2014 to 2017 has agreed to pay for 100% of the difference
between a state's current Medicaid eligibility level and the ACA
minimum. States that participate in the ACA expansion must
provide Medicaid coverage to all state residents below a certain
income level. As of January 2014, 26 states and the District of
Columbia were expanding Medicaid (The Advisory Board
Company, 2014). Every state that opted out has a Republican
governor. Dickman and colleagues (2014) report that the
Supreme Court's decision to allow states to opt out of Medicaid
expansion will have adverse health and financial consequences.
Based on recent data from the Oregon Health Insurance
Experiment, they predict that many low-income women will
forego recommended breast and cervical cancer screening;
diabetics will forego medications; and all low-income adults
will face a greater likelihood of depression, catastrophic
medical expenses, and death. Disparities in access to care based
on state of residence will increase. Because the federal
government will pay 100% of increased costs associated with
Medicaid expansion for the first three years (and 90%
thereafter), opt-out states are also turning down billions of
dollars of potential revenue, which might strengthen their local
economy.
Personal Question
1. You practice in a mobile van that serves poor
children and families in the inner city. You have 146seen many
media stories about families who are receiving badly
needed health care for the first time in their lives because they
now have coverage. You are exasperated with your state
representatives who have repeatedly blocked efforts to expand
Medicaid and worry about your state's ability to pay the costs of
Medicaid in the future. You have personal knowledge of
corruption within your state's current administration and are
wondering if you should go public with your knowledge or feed
it to the opposite party to ensure that current leaders will not be
re-elected. What do you do?
Allocating Scarce Resources
Health care resources are limited. No system has the financial
resources to provide the best care, to everyone, in all situations
(Hope, Reynolds, & Griffiths, 2002). Therefore, we look to the
principles of distributive justice for answers.
Principles of Distributive Justice.
Health care professionals, who are ideally situated to make
microdistributive decisions and whose social role enables them
to speak with authority to the general population about the
impact of resource allocation decisions on
the health and welfare of various segments of the population,
must not allow social decisions to influence their clinical
decisions. First, their ethical codes require, and for good
reason, that health care professionals act in the best interests of
the person on whom they are laying hands. Second, the will of
the citizenry, as expressed through the votes of their elected
representatives, should determine the distribution of the
resources they have so diligently (if unwillingly) supplied to
their governments. In general, the principles of distributive
justice ought to be used to guide decision making at the
sociopolitical levels. They are as follows:
1. To each the same thing. One of the simplest principles of
distributive justice is that of strict or radical equality. The
principle says that every person should have the same level of
material goods and services. Even with this ostensibly simple
principle, some of the difficult specification problems of
distributive principles can be seen, specifically construction of
appropriate indexes for measurement and the specification of
time frames. Because there are numerous proposed solutions to
these problems, the principle of strict equality is not a single
principle but a name for a group of closely related principles.
2. To each according to his need. The most widely discussed
theory of distributive justice in the past three decades has been
that proposed by John Rawls in A Theory of Justice (Rawls,
1971) and Political Liberalism (Rawls, 1993). Rawls proposes
the following two principles of justice: (1) Each person has an
equal claim to a fully adequate scheme of equal basic
rights and liberties, and (2) social and economic inequalities are
“to be to the greatest benefit of the least advantaged members of
society” (Rawls, 1993, pp. 5-6). These principles give fairly
clear guidance on what type of arguments will count as
justifications for inequality. For example, the second principle
would accept income disparities if these led to the greatest
benefit to the least advantaged members of society (created job
opportunities for the least well off) but would not support the
rich getting richer at the expense of the poor.
3. To each according to his ability to compete in the open
marketplace. Aristotle argued that virtue should be a basis for
distributing rewards, but most contemporary principles owe a
larger debt to John Locke. Locke argued that people deserve to
have those items produced by their toil and industry, the
products (or the value thereof) being a fitting reward for their
effort. His underlying idea was to guarantee to individuals the
fruits of their own labor and abstinence. According to some
contemporary theorists (Feinberg, 1970), people freely apply
their abilities and talents, in varying degrees, to socially
productive work. People come to deserve varying levels of
income by providing goods and services desired by others
(Feinberg, 1970). Distributive systems are just insofar as they
distribute incomes according to the different levels earned or
deserved by the individuals in the society for their productive
labors, efforts, or contributions.
147
4. To each according to his merits (desserts). Merit-based
principles of distribution differ primarily according to what
they identify as the basis for deserving. Most contemporary
proposals regarding merit fit into one of three broad categories
(Miller, 1976, 1989):
• Contribution: People should be rewarded for their work
activity according to the value of their contribution to the social
product.
• Effort: People should be rewarded according to the effort they
expend in their work activity.
• Compensation: People should be rewarded according to the
costs they incur in their work activity.
To illustrate some of the difficulties inherent in rationing
decisions, we will discuss the case of Sarah Murnaghan. Sarah
is an 11-year-old with cystic fibrosis. In June of 2013, Sarah
received national media attention when her parents petitioned a
federal judge to change the rules governing the allocation of
organs to allow Sarah to be placed on the adult lung transplant
list (Carroll, 2013). Sarah urgently needed a lung transplant.
The family argued the severity of Sarah's illness, not her age,
should be considered in deciding whether she receives an organ.
Shortly thereafter, Sarah received two double lung transplants
with adult lungs (Aleccia, 2013). Sarah's case raised questions
about whether it was ethical to change the transplant allocation
process based on one child's situation.
There were many concerns raised about Sarah's case, but the
main one related to the judge's decision to allow Sarah to be
listed on the adult transplant list. Many agree that
politicians and judges should not intervene in this type of
decision making, noting they rarely have all the information to
make an informed judgment (Caplan, 2013; Tomlinson,
2013). Professional organizations and experts are better suited
than government officials to decide such matters. In this
situation, experts believed the decision should have been left to
the United Network for Organ Sharing (UNOS), whose role is to
oversee a fair and equitable process of organ allocation (UNOS,
2014). Clinicians with expertise in the area of transplantation
for children agreed that if the usual process had been allowed,
Sarah would not have moved to the adult list (HRSA, 2013).
Another justice issue in Sarah's case concerned the
displacement of adults from the transplant list. It is believed
that children do better with child lungs than with adult lungs, so
should Sarah have receive an adult lung? The transplant process
is complex and the rules governing the process are meant to be
fair andequitable for all. Placing Sarah on the adult list meant
another recipient, with potentially a greater need, would not
receive a lung.
Looking at Sarah's transplant from an ends and means argument,
it can be said that receiving a transplant to allow Sarah to live
is a good end. However, considering the means to that end, it
could be said that Sarah's good end was obtained by an evil
means. An ethical act is one that results in more benefits than
harms to others. By displacing others from the transplant
list, and by changing a previously established fair and equitable
process, many would agree that Sarah's transplant was obtained
by evil means, thereby making it an unethical act.
Nurses can often experience moral distress in situations such as
Sarah's. Moral distress is experienced when nurses feel helpless
to act in a way that benefits their patients. No one can fault
Sarah's parents and medical team for wanting treatment to save
her life. In the day-to-day care of patients, nurses can often cite
a case when patients were not afforded the same level of
material goods and services as others. Many would also say that
benefits go to those who complain the loudest or pay the most.
The least advantaged among us are the most often forgotten.
Yet, in considering Sarah's case, nurses must be cognizant of
the patients who were displaced by Sarah's movement to the top
of the list. Should the way to procure a much-needed service be
the result of a media frenzy, with the best politician winning?
Of course not. However, gathering data, advocating for system
changes when warranted, and raising awareness of the issues are
all actions nurses can take to improve the situations of the
patients they serve. Nurses can assist in promoting
fair and compassionate treatment decisions by publishing their
research, by raising awareness of 148allocation issues, and by
remaining good stewards of available resources.
Reflective Practice: Barriers to the Treatment of Mental Illness
Austin Deeds, the son of Virginia State Senator Creigh Deeds,
was discharged home in November 2013 from a Virginia
hospital emergency room because there were no open
psychiatric beds. He then stabbed his father and killed himself.
The tragedy focused national attention on the need for a major
investment in the nation's mental health system. A 2008 report,
Treatment Advocacy Center (TAC) found 17 public psychiatric
beds per 100,000 U.S. citizens, down from 340 beds per
100,000 in 1955 (Torrey et al., n.d.). Although effective
assisted outpatient treatment programs are available in 45
states, TAC reports that implementation of AOT is often
incomplete or inconsistent because of legal, clinical, official, or
personal barriers to treatment. The center lists the following
clinical barriers to treatment: (1) hospitals,
physicians, and mental health professionals who are unaware of
the laws and/or don't know how to use them and (2)
identification mechanisms that would enable hospital emergency
rooms, law enforcement, and others to immediately recognize
individuals under court-ordered outpatient treatment. Official
barriers include perceived or projected fiscal impacts on local
government, shortage of public personnel with knowledge or
training in implementing the laws, opposition by the
mental health officials charged with implementing the
laws and standards, and opposition from tax-funded
protection and advocacy groups (TAC, 2014).
Personal Question
1. You chair a local chapter of the Emergency Nurses
Association and practice in an inner city hospital serving a large
number of individuals with mental healthimpairments in a state
without an outpatient treatment program. You would like your
chapter to address everyday challenges procuring psychiatric
care in your state. How can you leverage your health policy
responsibilities for this population and bring about needed
change?
Ethics and Work Environment Policies
Politics, defined as “any activity concerned with the acquisition
of power, gaining one's own ends,” is not just for elected
officials (Politics, n.d.). Politics are alive and well in every
aspect of health care, from the operating room of a small
community hospital to the board room of a multibillion-dollar
pharmaceutical company. Every day, health care administrators
make decisions that impact both nurses and the populations of
patients they serve. Nurses are in key positions to influence
hospital decision makers and to share the realities of the day-to-
day care of patients. Nurses have the greatest influence when
they are well-informed, open-minded, collaborative, and willing
to do what is right even if there is a personal cost. Here we
examine one workplace policy where nurses have the power to
influence outcomes, the issue of mandatory flu vaccines.
Mandatory Flu Vaccination: the Good of the Patient Versus
Personal Choice
In the opening paragraph, we asked, “What do I owe the
common good or the public interest in my life as a member of
society, or more specifically as a member of the nursing
profession?” Discerning the right course of action is not always
easy. For this discussion, we will consider the issue of
mandatory flu vaccinations.
A Pennsylvania nurse was 3 months' pregnant when she was
fired from a home infusion company for refusing a mandatory
flu vaccine. She was fearful that receiving the vaccine might
cause her to miscarry her baby (Lowes, 2014). She had
previously experienced two miscarriages before becoming
pregnant again. When she presented the required documentation
from a physician recommending she not be vaccinated, the note
was rejected. Her agency noted the physician 149failed to cite a
medical reason for the exemption. Fear and anxiety were not
considered valid reasons. The agency was unwilling to grant the
nurse the option of wearing a mask because, as a home care
nurse, it would have been difficult to enforce and doing so also
placed her immunocompromised patients at risk (Lowes, 2014).
Although we as individuals might make the same decision as
our colleague from Pennsylvania, as a profession we also have
the responsibility to serve the good of our patients. How do we
maintain that balance? When considering mandatory flu
vaccination policies, nurses must consider the interests of the
individual with those of the population, in this case, the
population of patients served. Ethical arguments in this
situation weigh personal choice (autonomy) against the best
interests of patients. Many argue that a nurse's duty not to harm
patients outweighs any restriction on personal choice
(Antommaria, 2013; Tilburt et al., 2008). Likewise,
fairness and promoting the good of patients compels nurses to
consider ways to provide protection for their vulnerable
patients and to keep them safe (Steckel, 2007).
Working though challenging issues is not easy. Using the Ethics
Inventory to evaluate our personal approach to ethical issues is
a good step toward improving our moral sensibility and moral
valuing. Asking ourselves the question, “What counts as a good
response?” can make us more aware of how we promote the
common good and dignity of others. Do we maximize
good and reduce harm for our patients? Do we act with virtue in
difficult situations by speaking up when it may not be popular
to do so? Do we act justly and/or advocate for justice in our
work environments? Are we responsive to the vulnerabilities of
others? Nurses are the most trusted of all professionals. Given
our sheer numbers, think about the impact we could have if we
shared one common voice to improve the care of the vulnerable.
Conclusion
Denise Thornby, former president of the American Association
of Critical Care Nurses, always charged nurses to make waves.
She exhorted nurses to identify when health care was not
working for people in need and to do whatever was necessary to
address the need. She died in the summer of 2012. We cannot
think of a better way to end this chapter than to repeat her
charge to nurses everywhere.
Every day, every moment, you make choices on how to act or
respond. Through these acts, you have the power to positively
influence. As John Quincy Adams sagely said, ‘The influence of
each human being on others in this life is a kind of
immortality.’ So I ask you: What will be your act of courage?
How will you influence your environment? What will be your
legacy? (Thornby, 2001)
Discussion Questions
1. Knowledge of ethical principles that support
practice and policy can help nurses to recognize moral
challenges and improve their ability to seek out the right thing
to do when faced with a moral dilemma. Describe a recent
clinical ethical dilemma and use the ethical terms discussed in
the chapter to describe it.
2. In terms of ethnic and racial health disparities, what actions
could nurses take to address these disturbing statistics from an
ethical perspective?
3. Can you describe a situation in which you witnessed
a health professional exhibit moral courage?
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Treating Dementias and Alzheimer's Disease

  • 1. Running head: CHRONIC ILLNESS 1 CHRONIC ILLNESS 8 Treatment of Dementias, Including Alzheimer’s Disease Estrella Gonzalez South University SU-NSG4055-WK1-A3 Treatment of Dementias, Including Alzheimer’s disease About Dementia and Alzheimer’s disease Dementia is characterized by the declining of cognitive functioning. The thinking, memory, and reasoning capabilities of a person with dementia is influenced to a point that interferes with their ability to do their daily activities (Alzheimer’s Association, 2016). The dementia itself is not an illness it is the most prevailing symptom of Alzheimer’s. Alzheimer’s disease is the cause of between 60% and 80% of all dementia cases (Alzheimer’s Association, 2016). There are various other factors that can lead to a demented state such as severe mental illness such as depression, delirium, dehydration, chronic alcoholism, some brain tumors and illnesses, or even Vitamin B12 deficiency (Ridley, Draper & Withall, 2013; Rossor et al., 2010). The reason for selecting dementias and Alzheimer’s disease is because these are associated with much other comorbidity which can easily affect a patient when not properly taken care of. Individuals with dementia are three times more prone to be hospitalized for preventable reasons. The loss of cognitive functioning makes the patients of dementia and Alzheimer’s to be dependent on others to do even the simplest
  • 2. of daily tasks. This makes coping with these conditions hard not only for the patients but also for their caregivers, family, support groups, and peers. Therefore, it is important to develop a good care plan for such patients to cater for their psychosocial needs as well as their biomedical needs. Morbidity and Comorbidity of Dementia and Alzheimer’s disease Other form of dementia and Alzheimer’s are leading cause of disability in America. In 2014 Alzheimer was one of the principles causes of mortality in the United States. Based on the death certificate data, Alzheimer’s is the 6th leading cause of mortality for adults aged 18 and older (HealthyPeople2020, nd). This illness is mainly common among the elderly population aged 65 and older. As of 2016, the prevalence of this disease in this population group was 11%, which are approximately 5.2 million people. Around 4% of all deaths in 2014 were Alzheimer’s related (HealthyPeople2020, nd). The percentage of Alzheimer’s disease-related deaths has increased significantly, partly because of the increased elderly population. The death rate due to Alzheimer’s has increased by 55% since 1999 (HealthyPeople2020, nd). Alzheimer’s and other forms of dementia are commonly associated with other physical and psychiatric comorbidities. Some of the common psychiatric comorbidities associated with dementia and Alzheimer’s include depression, bipolar disorder, and schizophrenia (Garcez et al., 2015). They have also been associated with other non-psychiatric illnesses such as sleep apnea, thyroid disorder, glaucoma, and osteoporosis (Duthie, Chew, & Soiza, 2011). Beatriz Poblador-Plou et al. (2014), also found that dementia commonly co-occurs with other illnesses like diabetes, hypertension, congestive heart failure, cerebrovascular diseases, Parkinson’s disease, cardiac arrhythmia, and neurosis. The Impact of Dementia, including Alzheimer’s disease on the Overall Health of the Nation Alzheimer is expected to increase double in the future costs of
  • 3. America’s public health system. Currently more than 5 million individuals live with dementia in our country, Alzheimer’s disease being the most common and only 4% of the diagnoses being of people below the age of 65 (Dharmarajan & Gunturu, 2009). Dementia is one of the most costly chronic illnesses in our country. The government uses costs above $100 million in efforts to take care of this syndrome. The average annual cost of taking care of Alzheimer’s per patient is around $42,000 for hospitalized patients and $12,000 for those living within the communities (Dharmarajan & Gunturu, 2009). Therefore, one of the main impacts of this illness on the nation is the increased healthcare costs, which are catered for by the government and the families, friends, and support systems of the patients. Healthy People 2020 Goals and Objectives for Dementias and Alzheimer’s disease The main goal of the Healthy People 2020 initiative is to decrease the deaths linked with this medical conditions previous mentioned and reduce the expenses relate with keeping up and upgrading the personal satisfaction for the general population with Alzheimer's disease and other forms of chronic dementia. There are two main objectives that need to be achieved for this goal to be materialized. First, Healthy People 2020 has the goal to expand the quantity of elderly above 65 years who are diagnosed with Alzheimer or other forms of dementia and to have caregivers who are aware of their respective diagnoses. Between 2007 and 2009, only 34.8 patients of dementia and Alzheimer’s were diagnosed of their respective illnesses and received the expected treatment. Healthy People 2020 hope to achieve a 10% improvement on this rate. The second objective is to reduce the number of preventable hospitalization of elderly people above the age of 65 who have dementia, including Alzheimer’s disease. Between 2006 and 2009, 23.5% of elderly people diagnosed with dementia or Alzheimer’s disease were hospitalized because of a preventable issue. Healthy People 2020 aim to have a 10% improvement to reduce this rate to 22.8. The achievement of these goals and objectives will ensure
  • 4. that patients with these conditions will receive the appropriate treatment and care to reduce the negative outcomes associated with them. The above medical condition are also responsible for the overall decline of the quality of public health in America. The illnesses are associated with various other physical and psychological illnesses, which in some cases lead to the death of the patients. This is among of main causes of mortality for the older population in the United States. Therefore, there is need to develop better care models for patients with these conditions to reduce the negative effect their illness has on America’s public health. Questionnaire for Care Plan Preparation Considering that Dementias and Alzheimer’s disease are characterized by cognitive decline, it is expected that some patients may not be able to answer this questionnaire. Therefore, this questionnaire of meant for patients who are at the first stages of their illness when their cognitive skills are still not completely impaired so that they can have long enough periods of being lucid. For the patients without the cognitive abilities to understand or answer these questions, their immediate family members or caregivers with an extended understanding of their illness can answer the questions. These questions aim at understanding the psychosocial life of the patient to develop a care plan that will not only target the illness but also its psychological and social effects on the patient. · Have you been diagnosed any of the disease mentioned before? If yes, how long ago? · What symptoms have you experienced as a result of the illness? · Have you had any treatments targeting this illness specifically? · Have you experienced other illnesses relating to this illness? · How do you feel dementia or Alzheimer’s disease has impacted the quality of your life?
  • 5. · Do you have any support system such as family, friends, or acquaintances that assist in taking care of you? · What are your likes, dislikes, and interests? · How was your day structured before you were diagnosed with dementia or Alzheimer’s disease? · At what time of the day do you function the best? · What is your daily routine like after diagnosis? References Alzheimer’s Association. (2016) Alzheimer’s Disease Facts and Figures. Alzheimer’s and Dementia 12(4):405–509. Dharmarajan, T. S., & Gunturu, S. G. (2009). Alzheimer's disease: a healthcare burden of epidemic proportion. American health & drug benefits, 2(1), 39. Duthie, A., Chew, D., & Soiza, R. L. (2011). Non-psychiatric comorbidity associated with Alzheimer’s disease. QJM: An International Journal of Medicine, 104(11), 913-920. Garcez, M. L., Falchetti, A. C. B., Mina, F., & Budni, J. (2015). Alzheimer s disease associated with psychiatric comorbidities. Anais da Academia Brasileira de Ciências, 87(2), 1461-1473. HealthyPeople2020 (n.d). Dementia, Inclusing Alzheimer’s Disease. Retrieved from: https://www.healthypeople.gov/2020/topics- objectives/topic/dementias-including-alzheimers-disease National Center for Health Statistics. (2015). Health, United States, With Special Feature on Racial and Ethnic Health Disparities. Hyattsville, (MD): National Center for Health Statistics; 2016. Report No. 2016-1232. Retrieved from: http://www.cdc.gov/nchs/data/nvsr/nvsr64/nvsr64_02.pdf. Poblador-Plou, B., Calderón-Larrañaga, A., Marta-Moreno, J., Hancco-Saavedra, J., Sicras-Mainar, A., Soljak, M., & Prados- Torres, A. (2014). Comorbidity of dementia: a cross-sectional study of primary care older patients. BMC psychiatry, 14(1), 84. Ridley, N. J., Draper, B., & Withall, A. (2013). Alcohol-related dementia: an update of the evidence. Alzheimer's research & therapy, 5(1), 3.
  • 6. CHAPTER 15 Health Policy, Politics, and Professional Ethics Carol R. Taylor, Susan I. Belanger “To see what is right and not do it is want of courage.” Confucius Writing in the Encyclopedia of Bioethics, Dan Callahan, one of the founders of U.S. bioethics, states that three paramount human questions lie at the heart of bioethics: • What kind of person ought I be to live a moral life and make good ethical decisions? • What are my duties and obligations to other individuals whose life and well-being may be affected by my actions? • What do I owe the common good or the public interest, in my life as a member of society? The authors of this chapter believe that too few nurses take seriously their responsibilities as citizens, in spite of being frequently reminded that the sheer numbers as the largest group of health professionals (3.1 million) and as the most trusted professionals (Gallup's annual honesty and ethics survey), make us a formidable force (2013). Ethics may be defined as the formal study of who we ought to be, how we should make decisions and behave. This chapter centers around what is reasonable to expect of professional nurses as citizens in regard to designing and delivering a just health system that meets the needs of all, with special concern for the most vulnerable. Designing a system for delivering health care that adequately meets the needs of a diverse public is a complex challenge. Health care planners have always worried about access, quality, and cost. Who should get what quality of care and at what cost? What you think about health care in the United States largely depends on your past experiences. If you are well insured or independently wealthy, you can access the best health care in the world. If you lack insurance andhave
  • 7. limited financial resources, you may die of a disease that might have been prevented or treated at an early stage if you had had access to quality care. The U.S. system has been criticized for providing too little care to some and too much of the wrong type of care to others. Many now believe that a moral society owes health care to its citizens. Health care is like clean water, sanitation, and basic education. Others, however, believe that health care is a commodity, like automobiles, to be sold and purchased in the marketplace. If you lack the funds to buy a car, that may be sad, but society has no obligation to purchase a car for you. As you read this chapter, ask yourself what you believe about health care. Is it simply unfortunate if people cannot afford the health care they and their families need? Daily nursing practice and people's health, wellbeing, and dying are directly affected by decisions made by governments, insurers, and health care institutions. Nursing needs a seat at these decision-making tables and nurses must be prepared and willing to take these seats. As the country's most trusted health care professionals, the nurses in these seats must be committed to ethical decision making. Drivers for much of human enterprise are power, position, prestige, profit, and politics (Barnet, n.d.). Strikingly absent from this list are people, patients, the public, and the poor! Nursing's challenge, as profits and politics increasingly dictate health priorities, is to keep health care strongly focused on the needs of patients, their families, and the public. Health care in the United States is a business, revenues need to be generated to make care possible, 138but health care can never be only a business. First and primarily, it is a service a moral society provides for its vulnerable members. Nurses play a critical role in keeping health care centered on the people it purports to serve. This chapter opens with a description of the ethics of influencing policy and explores the professional ethics of nurses and their advocacy and health policy responsibilities. It
  • 8. offers a brief analyses of how nurses can use their voice to influence policy regarding scarce resource allocations and workplace issues. Throughout, short reflective practice vignettes invite readers to reflect on the adequacy of their moral agency in select advocacy challenges. The Ethics of Influencing Policy An ethical critique of human behavior involves paying attention to the intention of the moral agent, the nature of the act performed, the consequences of the action, and the circumstances surrounding the act. Ethics has to do with right and wrong in this world, and policy and politics has everything to do with what happens to people in this world. Moreover, both ethics and politics have to do with making life better for oneself and others. Surely both deal with power andpowerlessness, with human rights and balancing claims, with justice and fairness, and with good and evil. And good and evil are not the same as right and wrong. Right and wrong pertain to adherence to principles; good and evil pertain to the intent of the doer and the impact the deed has on other people. Surely policy andpolitics involves justice in the distribution of social goods; fairness and equity in relationships among and between people of different races, genders, and creeds; and access to education and assistance when one is in need. Although the goodness of an action lies in the intent and integrity of the human being who performs it, the rightness or wrongness of an action is judged by the difference it makes in the world. Therefore the principles applied in ethical analysis generally derive from a consideration of the duties one person owes another by virtue of commitments made and roles assumed, and/or a consideration of the effects that a choice of action could have on one's own life and the lives of others. In a perfect world, legislators would all intend the good of the public they serve and use ethical means to achieve good outcomes. In the real world, legislators and lobbyists intend many things other than the good of the public and some use
  • 9. unethical means to achieve dubious ends. A democracy with an increasingly heterogeneous public necessarily involves compromise. Which strategies to influence policy can nurses use without sacrificing personal and professionalintegrity? Each advocacy strategy involves a variation of the same question, that is, what means can be legitimately used to achieve an end that someone (or a political party or the electorate) believes to be good? The ends-and-means argument is often explained as follows. We can cut a man open (an evil means) to save his life (a good end). We can remove a perfectly healthy kidney from one person (an evil means) to transplant it to save the life and health of another (a good end). We admire the person who sacrifices his life (an evil means) to save the life of his friend (a good end). If our intention (to produce a good) can justify the means (doing an evil), then why can't we torture one man (an evil means) to gain information that might save another person's life or even the lives of many people (a good end)? Should we assure the passage of health care insurance reform (a good end) by strong-arm tactics (an evil means)? It is important to note that cutting a person open, even to save his life, is not a good thing unless the person consents to it. Similarly one cannot steal one person's kidney even to save another; rather, the consent of both donor and recipient is required. The prisoner does not choose to be tortured; although it is very tempting to justify torture to protect innocent lives, if a man can be tortured on the suspicion that he may know something subversive, who is safe from governmental oppression? The price we pay for freedom and human rights is to grant them to all people, not just a favored few. And yes, it is risky, and yes, it may reduce our “efficiency” and in some cases it may even lead to loss of life. But the alternative is that no one has rights (i.e., just claims); rights become the privilege of a 139favored group, while all other individuals are utterly helpless before the power of the state. Certainly the electorate does not consent to the corruption of the legislative process, and even if a majority did approve of
  • 10. bending the rules of fair engagement to ensure that a particular piece of legislation is passed, would that make it right? Would it not end up threatening the very foundations of a free society (because the foundation of a republic lies in the honesty of its processes)? What are the differences between normal legislative wrangling and abuse of power? What does it mean when political parties refuse to participate in the legislative process and/or use blatant scare tactics? What is legitimate dissent, and what is a refusal to accept democratic outcomes unless you happen to agree with them? Without civil disobedience, we would still have the Jim Crow laws. And without respect for the law, a society degenerates into either despotism or anarchy. When people ask whether it is wrong to lie about something (e.g., the number of people affected by a particular disease) to get funding for research and/or treatment of patients with a particular disease, in a word the answer is yes. It is wrong. Why is lying wrong? It's wrong because it undermines the foundation of any relationship: trust. In like manner, lying to further a political agenda is wrong not only because it undermines trust, but also because it fosters further dishonesty. Judging by the amount of political dishonesty reported in the media, one is led to the conclusion that there is a lot of lying going on! Adding to it, telling more lies to further our own agenda, will only make matters worse. Reflective Practice: Pants on Fire Sarah Palin is famous for urging her supporters to oppose Democratic plans for health care using the scare tactic of death panels. She said the Democrats plan to reduce health care costs by simply refusing to pay for care: And who will suffer the most when they ration care? The sick, the elderly, and the disabled, of course. The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama's death panel so his bureaucrats can decide, based on a subjective judgment of their level of productivity in society, whether they
  • 11. are worthy of health care. Such a system is downright evil. In fact there was no panel in any version of the health care bills in Congress that judges a person's level of productivity in society to determine whether they are worthy of health care. The truth is that the proposed health bill would have allowed Medicare, for the first time, to pay for optional doctors' appointments for patients to discuss living wills and other end- of-life issues with their physicians. PolitiFact awarded Palin with the 2009 Lie of the Year for the death panel claim, but the political impact of her statement is hard to overstate. In 2011, the Obama administration even deleted all references to end-of- life planning in a new Medicare regulation when opponents interpreted the move as a back-door effort to allow such planning. So even, in the regulations Palin achieved her goal (Holan, 2009). Discussion Questions 1. How do you judge Palin's quote? Effective strategy to oppose Democrats' plans for health care reform or unethical scaremongering? 2. Reflect on what informs your judgment: commitment to advance care planning, analysis of facts, political party loyalties? 3. Is it right for nurses to endorse health reform legislation even if the legislation is not perfect? (The answer is yes; it may indeed be the right thing to do.) Remember, politics is about relationships, and relationships cannot prosper when one party insists that the other party must agree with them on every (or even any) issue. It is not wrong to compromise; compromise is part of the give and take of relationships, and it is part of the give and take of politics. What is critical is knowing when it is possible to compromise without sacrificing personal integrity. This prompts the question of whether it can be acceptable to distort an issue to manipulate public 140opinion or to win the support of a particular piece of legislation. It is usually, however, possible to frame a discussion in a manner that is more acceptable to a certain
  • 12. constituency without lying in this manner. For example, in the health care arena, one can use words that appeal to known values, words such as tradition and legitimate authority (words that tend to appeal to conservatives), and words such as autonomous and experimental (words that tend to appeal to liberals). Knowing the target audience and framing the issue in words that will help them listen (or at least not harden their opposition) is smart, not unethical. Now to return to the issue of nurses' (and others') lobbying activities: Here compromise is in order. Any professional group has a duty imposed on it by both its social role and its code of ethics, to push forward laws and policies that protect or advance the best interests of those whom they serve. And finally, any citizen, particularly a knowledgeable one, has a civic duty to speak out for the common good. Professional Ethics A professional ethic is built around three essential components: 1. Its purpose. All professions develop in response to a social need, one that the members of the profession promise to meet. Put in legalistic terms, this need (along with the power and privileges society grants to the profession to help the professionals meet the need) and the profession's promised response to it constitute the profession's contract with society. 2. The conduct expected of the professional. The ethical code developed and promulgated by the profession, its code of ethics, describes the conduct society has a right to expect from professionals as they go about the business of the profession. However, it is not a list of prescribed do's and dont's but rather an articulation of those values that, in fact, outline the scope of the profession's practice and the relationships that ought to pertain between its members and the lay public, among the practitioners of this profession, between the practitioner and the profession itself, and between the professional and the community within which he or she practices. 3. The skills and outcomes expected in professional practice. Nursing's standards of practice state with some precision the
  • 13. obligations of nurses in specific areas of practice. Clearly, each of these components is dynamic, that is, subject to change and reevaluation as the profession grows, as knowledge increases, and as social mores and expectations develop. This is not to claim that there are no constants (e.g., a general imperative to respect persons), but rather to say that the meaning and application of the imperatives change. Professional ethics is the study of how personal moral norms apply or conflict with the promises and duties of one's profession. Society demands that professionals be held to a separate moral standard of conduct because the choices professionals make affect other people's lives more than their own. Nursing's foundational documents make each nurse's advocacy and health policy responsibilities clear. Although some may think that advocacy and health policy are an ethical ideal, they are rather a nonnegotiable moral obligation embedded in the nursing role. The ANA Code of Ethics for Nurses states: “The nurse promotes, advocates for, and strives to protect the health, safety, and rights of the patient” (2010). The 2015 revision of the Code of Ethics (soon to be published) places an even stronger emphasis on nursing's advocacy responsibilities. ANA's Social Policy Statement: The Essence of the Profession was published in 1980 and revised in 1995, 2003, and 2010. The introduction to the 2003 revision emphasizes nurses' central role in effecting health policy. Nursing is the pivotal health care profession, highly valued for its specialized knowledge, skill, and caring in improving the health status of the public andensuring safe, effective, quality care. The profession mirrors the diverse population it serves and provides leadership to create positive changes in health policy and delivery systems (p. 1). The 2003 revision also included for the first time in its list of values and assumptions of nursing's social contract, “Public policy and the health care delivery system influence the health and well-being of society and professional nursing” (p. 4). This 141phrase appears again in the 2010 revision under
  • 14. the heading, “The elements of nursing's social contract” (p. 6). The 2010 revision also notes as a key social concern in health care and nursing “Expansion of health care resources andhealth policy” (p. 4). Reflective Practice: Foundational Nursing Documents The American Nursing Association publishes three documents packaged as the Foundation of Nursing Package, 2010. Included in the package are the Code of Ethics for Nurses and the revised Nursing Social Policy Statement and Nursing Scope and Standards of Practice. Together these documents describe what is reasonable for the U.S. public to expect of nurses. As this text goes to press, a newly revised Code of Ethics is being studied and may be available as early as 2015. It is the responsibility of every professional nurse to be familiar with these foundational documents and to continually assess if her/his professional practice is congruent with what is expected. Personal Questions 1. When, if ever, did you read and reflect on these core documents? 2. In what ways do you expect your Code of Ethics to change? Do you support these changes? 3. Have you participated in discussions about how these documents pertain to your practice and what they suggest as growth opportunities for you or your colleagues? 4. What is reasonable to expect of every professional nurse in regard to advocacy and health policy? Moral Agency and the Nurse Once professional nurses understand what is reasonable for the public to expect of them, the next step is to determine if one has the capacity to meet these expectations. In other words, one must ask, “Am I trustworthy?” Moral agency is quite simply the ability to be what is professed: a human, a parent, a professionalnurse. Moral agency in any specific situation requires more than knowing what is right to do; it also entails: • Moral character: Cultivated dispositions that allow one to act as one believes one ought to act.
  • 15. • Moral valuing: Valuing in a conscious and critical way which squares with good moral character and ethical integrity. For nurses this is a commitment to patient well-being and a degree of altruism. • Moral sensibility: The ability to recognize the moral moment when an ethical challenge presents. • Moral responsiveness: The ability and willingness to respond to the ethical challenge. • Ethical reasoning and discernment: The knowledge of, and ability to use, sound theoretical and practical approaches to thinking through ethical challenges and to ultimately decide how best to respond to this particular challenge after identifying and weighing alternative courses of action; using these approaches to both inform and justify moral behavior. (See Box 15-1.) Box 15-1 Ethics Inventory Think about a recent ethical challenge you encountered in practice. • What signals you to an ethical challenge? Intellectual disconnect? Queasy feeling in the pit of your stomach? Discomfort or disappointment in the way you or your team are responding? Yuck factor? • Pay attention to how you reason as you think about how you should and would respond. • What informs your judgment? Rephrased, how do you calibrate your moral compass? • Are there moral rules that apply? • Do you have a responsibility to respond? Are you personally able and willing to respond? Are there institutional or other external variables making it difficult or impossible to respond? • What counts as a good response? What criteria/principles do you use to inform, justify, and evaluate your response? • Promotes human dignity and the common good • Maximizes good and minimizes harm • Justly distributes goods and harms
  • 16. • Respects rights • Responsive to vulnerabilities • Promotes virtue • Compatible with Code of Ethics for Nurses • Other • What criteria/principles do you use to critique/evaluate your response? • We stayed out of trouble, not greatly inconvenienced. • We made money or at the very least didn't lose money! • Our patient satisfaction scores will be high, or at least not negative • Able to put my head on my pillow and fall asleep peacefully • My/our reputation is intact. • Transparency [Washington Post test; I could share how I/we responded with my children and feel proud.] • Consistency • Other • Are there any universal (nonnegotiable) moral obligations that obligate all health care professionals? • To whom would you turn if you were uncertain about how to proceed? • What agency resources exist to help you think through and secure a good response? How confident are you that these resources would facilitate a good resolution of your concern? • Can you translate your moral judgments about how best to respond into action? If you believe that institutional or other variables are making it impossible to do what you believe is the ethically right thing to do, what are your options? • Moral accountability: The ability and willingness to accept responsibility for one's ethical behavior and to learn from the experiences of exercising moral agency. • Transformative moral leadership: Commitment and proven ability to create a culture that facilitates the exercise of moral agency, a culture in which individuals are supported in doing the right thing simply because it is the right thing to do (Taylor,
  • 17. 2015). Nurses who value their moral agency are familiar with the principles of bioethics which commit them, all things being equal, to: (1) respect the autonomy of individuals, (2) act so as to benefit (beneficence), (3) not harm (nonmaleficence), and (4) give individuals their due (justice). Other principles include keeping promises (fidelity) and responsiveness to vulnerability. A commitment to social justice and the common good has long characterized the profession of nursing. This commitment calls for the creation of a society in which all can flourish, not only the affluent, and the creation of a bottom floor beneath which no one can fall regarding access to basic nutrition, safe housing, education, health care, and employment. 142 Reflective Practice: Negotiating Conflicts between Personal Integrity and ProfessionalResponsibilities Shortly after the Department of Health and Human Services (HHS) announced the new federal rule that required all new private plans to cover prescribed FDA-approved contraceptive methods without cost-sharing, a number of corporations sued, claiming that this new requirement violates their religious rights. These lawsuits have worked their way through the federal courts and on November 26, 2013, the Supreme Court agreed to hear two cases that involved for-profit corporations. The Court agreed to hear a case from the Tenth Circuit Court of Appeals, which ruled in favor of Hobby Lobby, an Oklahoma- based chain of craft stores owned by a Christian family who claim that the contraceptive coverage requirement violates their company's religious freedom. The Court also agreed to hear a case from the Third Circuit Court of Appeals, which ruled against the corporation and its owners, finding that Conestoga Wood Specialties, a cabinet manufacturer, does not have religious rights. The Supreme Court decided to take these cases to resolve the conflict between the two decisions along with other U.S. Courts of Appeals' rulings (Sobel & Salganicoff, 2013).
  • 18. Personal Question 1. You are a women's health nurse practitioner and are asked to collaborate on filing an amicus brief to the court supporting women's rights to free 143approved contraceptive methods. From your practice you know how important women's accessibility to these methods are and have sat with many a tearful woman contemplating an unplanned pregnancy. You are Christian, however, and you support your church's stance on not using contraceptive methods. You feel torn between maintaining your personal integrity and fulfilling your nursing obligation to aid poor women without access to basic reproductive services. How will you reconcile your conflict? It is important to note here that effecting the right courses of action is not merely within the scope of the moral agency of the nurse. Ethics happens in the realm of the individual, the institution, and society, and each can profoundly influence the others (Glaser, 1994). A nurse with strong moral agency who is committed to health policy reform can have a profound influence on the practice of nurses working in institutions and can also influence the public's health. Similarly, a nurse with strong moral agency who is practicing in an institution willing to sacrifice patient safety and well-being for financial profit in a society that has yet to guarantee basic health care for all may feel compromised at every turn. When a nurse knows the right course of action for a patient, family, or community and is prevented by internal or external variables from translating this knowledge into action, moral distress results, which, if unresolved over time, builds up moral residue (Epstein & Hamric, 2009; Rushton, 2006). Put yourself in the shoes of a nurse working in a busy inner city emergency room. Every day he discharges patients with instructions for follow-up treatment that he knows will never happen because of a lack of financial or personal resources. His choices seem to be to stop caring in order not to experience frustration or distress, to show up for work like a robot and do his job, or to find meaning and purpose in working collaboratively to change the
  • 19. system. U.S. Health Care Reform A just and caring society provides for the health care needs of its people. The 2010 Commonwealth Fund International comparison of the U.S. health system concluded that despite having the most costly health system in the world, the United States consistently underperforms in most dimensions of performance relative to other countries. “Compared with six other nations—Australia, Canada, Germany, the Netherlands, New Zealand, and the United Kingdom—the U.S. health care system ranks last or next-to-last in five dimensions of a high- performance health system: quality, access, efficiency, equity, and healthy lives” (Davis, Schoen, & Stremkis, 2010). The report was hopeful that newly enacted health reform legislation in the United States would address these problems by extending coverage to those without and helping to close gaps in coverage, leading to improved disease management, care coordination, and better outcomes over time. A discouraging 2013 Institute of Medicine report, U.S. Health in International Perspective: Shorter Lives, Poorer Health, concluded that although the United States is among the wealthiest nations in the world, it is far from the healthiest. Despite spending far more per person on health care than any other nation, the United States has more people dying at younger ages than people in almost all other high-income countries. Among 16 peer nations, all affluent democracies, the United States is at or near the bottom in nine key areas of health: infant mortality and low birth weight, injuries and homicides, teenage pregnancies and sexually transmitted infections, prevalence of HIV and AIDs, drug- related deaths, obesity and diabetes, heart disease, chronic lung disease, and disability. Included as factors linked to the U.S. disadvantage are inadequate health care, unhealthy behaviors, and adverse economic and social conditions. “The tragedy is not that the United States is losing a contest with other countries, but that Americans are dying and suffering
  • 20. from illness and injury at rates that are demonstrably unnecessary” (Woolf & Aron, 2013). Access to Health Care Any discussion of health care access must include a review of human rights and a discussion of whether or not there is such a thing as a human right to 144healthcare services, and whether or not a just society would provide a legal right to such services. A human right is a justice claim to an essential, universal human need. The justice of the claim is affected by (1) the universality of the need, (2) the extent to which a person can meet his or her own needs, and (3) the extent to which others can help meet these needs without compromising their own fundamental needs. Some argue that health care services, or at least illness care services, are not a human right; however, a far larger number think that such needs can easily meet each of these criteria, at least under a variety of circumstances. For almost a century, Presidents and members of Congress have tried and failed to provide universal health benefits to Americans. There are a few simple facts that are important: (1) the United States is the only industrialized country in the world that does not offer some type of universal health care; (2) each year tens of thousands of Americans lose their health care coverage caused by circumstances beyond their control; and (3) the main reason that Americans file bankruptcy is outstanding medical bills. The American Nurses Association website chronicles nurses' decades-long efforts to advocate for health care reforms that would guarantee access to high-quality health care for all. Reflective Practice: Accepting the Challenge The Affordable Care Act (ACA) has been challenged at every turn. In the 2014 State of the Union address, President Barack Obama reported: One last point on financial security. For decades, few things exposed hard-working families to economic hardship more than a broken health care system. And in case you haven't heard, we're in the process of fixing that. . . . Already, because of the Affordable Care Act, more than 3
  • 21. million Americans under age 26 have gained coverage under their parents' plans. More than 9 million Americans have signed up for private health insurance or Medicaid coverage—9 million. And here's another number: zero. Because of this law, no American, none, zero, can ever again be dropped or denied coverage for a preexisting condition like asthma or back pain or cancer. No woman can ever be charged more just because she's a woman. And we did all this while adding years to Medicare's finances, keeping Medicare premiums flat and lowering prescription costs for millions of seniors. . . . That's why tonight I ask every American who knows someone without health insurance to help them get covered by March 31st. Help them get covered. . . . Citizenship demands a sense of common purpose; participation in the hard work of self-government; an obligation to serve to our communities (Obama, 2014). Personal Question 1. You eagerly watched the State of the Union Address but you have mixed feelings about the ACA. You come from a family who greatly distrust big government and want the Act repealed. As a public health nurse you interact with families everyday who are complaining about difficulties enrolling in their state's online health insurance program. You've read about the successes some have had by contacting navigators in the governor's Office of Health Reform but you know that many don't know how to initiate this contact. Are you obligated to do all you can to get coverage for the public you serve even if this means setting aside your political commitments? A 2013 U.S. Subcommittee on Primary Health and Aging reported that nearly 57 million people in the United States, one in five Americans, live in areas without adequate access to primary health care caused by a shortage of providers in their communities. The facts in this report are sobering: • Fifty years ago, half of the physicians in the United States practiced primary care, but today fewer than one in three do.
  • 22. • As many as 45,000 people die each year because they do not have health insurance and do not get to a physician on time. 145 • The average primary care physician in the United States is 47 years old, and one-quarter are nearing retirement. In 2011, about 17,000 physicians graduated from American medical schools. Despite the fact that over half of patient visits are for primary care, only 7% of the nation's medical school graduates now choose a primary care career (Sanders, 2013). Reflective Practice: the Medicaid 5% Commitment—an Appeal to Professionalism More than one fifth of the U.S. population is ensured through Medicaid, a number that is growing rapidly as the ACA is implemented (The Kaiser Commission on Medicaid and the Uninsured, 2014). The Congressional Budget Office predicts that nine million additional people will gain coverage through Medicaid in 2014. One key concern is whether the increased demand will be adequately met, whether there will be a sufficient number of clinicians who accept new Medicaid patients. At the present about 30% of office-based physicians do not accept new Medicaid patients. In certain specialties, the percentage is considerably higher. The Medicaid reimbursement rates vary by state; in some cases they are so low that physicians regularly lose money on Medicaid patients. In a recent article in the Perspective section of The New England Journal of Medicine, Lawrence Casalino proposed asking each physician to commit to providing care for enough Medicaid enrollees so that at least 5% of their practice consists of Medicaid patients (2013). Casalino concludes his short article with these words: “A 5%-commitment campaign would be a meaningful, highly visible demonstration of physician professionalism—of putting patients first.” Discussion Question 1. Nurses have always been at the forefront in ensuring that all have access to safe, effective, and appropriate care. How likely are today's advanced practice nurses to respond to Casalino's
  • 23. challenge by ensuring that their practice commits to providing at a minimum care for enough Medicaid enrollees so that at least 5% of their practice consists of Medicaid patients? Will advanced practice nurses partnering with physicians be able to bring this issue to the practice and be skilled in effecting a positive response to Casalino's appeal to professionalism? Reflective Practice: Your State Turned Down Medicaid Expansion As part of the ACA's broader effort to ensure health insurance coverage for all U.S. residents, the federal government from 2014 to 2017 has agreed to pay for 100% of the difference between a state's current Medicaid eligibility level and the ACA minimum. States that participate in the ACA expansion must provide Medicaid coverage to all state residents below a certain income level. As of January 2014, 26 states and the District of Columbia were expanding Medicaid (The Advisory Board Company, 2014). Every state that opted out has a Republican governor. Dickman and colleagues (2014) report that the Supreme Court's decision to allow states to opt out of Medicaid expansion will have adverse health and financial consequences. Based on recent data from the Oregon Health Insurance Experiment, they predict that many low-income women will forego recommended breast and cervical cancer screening; diabetics will forego medications; and all low-income adults will face a greater likelihood of depression, catastrophic medical expenses, and death. Disparities in access to care based on state of residence will increase. Because the federal government will pay 100% of increased costs associated with Medicaid expansion for the first three years (and 90% thereafter), opt-out states are also turning down billions of dollars of potential revenue, which might strengthen their local economy. Personal Question 1. You practice in a mobile van that serves poor children and families in the inner city. You have 146seen many media stories about families who are receiving badly
  • 24. needed health care for the first time in their lives because they now have coverage. You are exasperated with your state representatives who have repeatedly blocked efforts to expand Medicaid and worry about your state's ability to pay the costs of Medicaid in the future. You have personal knowledge of corruption within your state's current administration and are wondering if you should go public with your knowledge or feed it to the opposite party to ensure that current leaders will not be re-elected. What do you do? Allocating Scarce Resources Health care resources are limited. No system has the financial resources to provide the best care, to everyone, in all situations (Hope, Reynolds, & Griffiths, 2002). Therefore, we look to the principles of distributive justice for answers. Principles of Distributive Justice. Health care professionals, who are ideally situated to make microdistributive decisions and whose social role enables them to speak with authority to the general population about the impact of resource allocation decisions on the health and welfare of various segments of the population, must not allow social decisions to influence their clinical decisions. First, their ethical codes require, and for good reason, that health care professionals act in the best interests of the person on whom they are laying hands. Second, the will of the citizenry, as expressed through the votes of their elected representatives, should determine the distribution of the resources they have so diligently (if unwillingly) supplied to their governments. In general, the principles of distributive justice ought to be used to guide decision making at the sociopolitical levels. They are as follows: 1. To each the same thing. One of the simplest principles of distributive justice is that of strict or radical equality. The principle says that every person should have the same level of material goods and services. Even with this ostensibly simple principle, some of the difficult specification problems of distributive principles can be seen, specifically construction of
  • 25. appropriate indexes for measurement and the specification of time frames. Because there are numerous proposed solutions to these problems, the principle of strict equality is not a single principle but a name for a group of closely related principles. 2. To each according to his need. The most widely discussed theory of distributive justice in the past three decades has been that proposed by John Rawls in A Theory of Justice (Rawls, 1971) and Political Liberalism (Rawls, 1993). Rawls proposes the following two principles of justice: (1) Each person has an equal claim to a fully adequate scheme of equal basic rights and liberties, and (2) social and economic inequalities are “to be to the greatest benefit of the least advantaged members of society” (Rawls, 1993, pp. 5-6). These principles give fairly clear guidance on what type of arguments will count as justifications for inequality. For example, the second principle would accept income disparities if these led to the greatest benefit to the least advantaged members of society (created job opportunities for the least well off) but would not support the rich getting richer at the expense of the poor. 3. To each according to his ability to compete in the open marketplace. Aristotle argued that virtue should be a basis for distributing rewards, but most contemporary principles owe a larger debt to John Locke. Locke argued that people deserve to have those items produced by their toil and industry, the products (or the value thereof) being a fitting reward for their effort. His underlying idea was to guarantee to individuals the fruits of their own labor and abstinence. According to some contemporary theorists (Feinberg, 1970), people freely apply their abilities and talents, in varying degrees, to socially productive work. People come to deserve varying levels of income by providing goods and services desired by others (Feinberg, 1970). Distributive systems are just insofar as they distribute incomes according to the different levels earned or deserved by the individuals in the society for their productive labors, efforts, or contributions. 147
  • 26. 4. To each according to his merits (desserts). Merit-based principles of distribution differ primarily according to what they identify as the basis for deserving. Most contemporary proposals regarding merit fit into one of three broad categories (Miller, 1976, 1989): • Contribution: People should be rewarded for their work activity according to the value of their contribution to the social product. • Effort: People should be rewarded according to the effort they expend in their work activity. • Compensation: People should be rewarded according to the costs they incur in their work activity. To illustrate some of the difficulties inherent in rationing decisions, we will discuss the case of Sarah Murnaghan. Sarah is an 11-year-old with cystic fibrosis. In June of 2013, Sarah received national media attention when her parents petitioned a federal judge to change the rules governing the allocation of organs to allow Sarah to be placed on the adult lung transplant list (Carroll, 2013). Sarah urgently needed a lung transplant. The family argued the severity of Sarah's illness, not her age, should be considered in deciding whether she receives an organ. Shortly thereafter, Sarah received two double lung transplants with adult lungs (Aleccia, 2013). Sarah's case raised questions about whether it was ethical to change the transplant allocation process based on one child's situation. There were many concerns raised about Sarah's case, but the main one related to the judge's decision to allow Sarah to be listed on the adult transplant list. Many agree that politicians and judges should not intervene in this type of decision making, noting they rarely have all the information to make an informed judgment (Caplan, 2013; Tomlinson, 2013). Professional organizations and experts are better suited than government officials to decide such matters. In this situation, experts believed the decision should have been left to the United Network for Organ Sharing (UNOS), whose role is to oversee a fair and equitable process of organ allocation (UNOS,
  • 27. 2014). Clinicians with expertise in the area of transplantation for children agreed that if the usual process had been allowed, Sarah would not have moved to the adult list (HRSA, 2013). Another justice issue in Sarah's case concerned the displacement of adults from the transplant list. It is believed that children do better with child lungs than with adult lungs, so should Sarah have receive an adult lung? The transplant process is complex and the rules governing the process are meant to be fair andequitable for all. Placing Sarah on the adult list meant another recipient, with potentially a greater need, would not receive a lung. Looking at Sarah's transplant from an ends and means argument, it can be said that receiving a transplant to allow Sarah to live is a good end. However, considering the means to that end, it could be said that Sarah's good end was obtained by an evil means. An ethical act is one that results in more benefits than harms to others. By displacing others from the transplant list, and by changing a previously established fair and equitable process, many would agree that Sarah's transplant was obtained by evil means, thereby making it an unethical act. Nurses can often experience moral distress in situations such as Sarah's. Moral distress is experienced when nurses feel helpless to act in a way that benefits their patients. No one can fault Sarah's parents and medical team for wanting treatment to save her life. In the day-to-day care of patients, nurses can often cite a case when patients were not afforded the same level of material goods and services as others. Many would also say that benefits go to those who complain the loudest or pay the most. The least advantaged among us are the most often forgotten. Yet, in considering Sarah's case, nurses must be cognizant of the patients who were displaced by Sarah's movement to the top of the list. Should the way to procure a much-needed service be the result of a media frenzy, with the best politician winning? Of course not. However, gathering data, advocating for system changes when warranted, and raising awareness of the issues are all actions nurses can take to improve the situations of the
  • 28. patients they serve. Nurses can assist in promoting fair and compassionate treatment decisions by publishing their research, by raising awareness of 148allocation issues, and by remaining good stewards of available resources. Reflective Practice: Barriers to the Treatment of Mental Illness Austin Deeds, the son of Virginia State Senator Creigh Deeds, was discharged home in November 2013 from a Virginia hospital emergency room because there were no open psychiatric beds. He then stabbed his father and killed himself. The tragedy focused national attention on the need for a major investment in the nation's mental health system. A 2008 report, Treatment Advocacy Center (TAC) found 17 public psychiatric beds per 100,000 U.S. citizens, down from 340 beds per 100,000 in 1955 (Torrey et al., n.d.). Although effective assisted outpatient treatment programs are available in 45 states, TAC reports that implementation of AOT is often incomplete or inconsistent because of legal, clinical, official, or personal barriers to treatment. The center lists the following clinical barriers to treatment: (1) hospitals, physicians, and mental health professionals who are unaware of the laws and/or don't know how to use them and (2) identification mechanisms that would enable hospital emergency rooms, law enforcement, and others to immediately recognize individuals under court-ordered outpatient treatment. Official barriers include perceived or projected fiscal impacts on local government, shortage of public personnel with knowledge or training in implementing the laws, opposition by the mental health officials charged with implementing the laws and standards, and opposition from tax-funded protection and advocacy groups (TAC, 2014). Personal Question 1. You chair a local chapter of the Emergency Nurses Association and practice in an inner city hospital serving a large number of individuals with mental healthimpairments in a state without an outpatient treatment program. You would like your chapter to address everyday challenges procuring psychiatric
  • 29. care in your state. How can you leverage your health policy responsibilities for this population and bring about needed change? Ethics and Work Environment Policies Politics, defined as “any activity concerned with the acquisition of power, gaining one's own ends,” is not just for elected officials (Politics, n.d.). Politics are alive and well in every aspect of health care, from the operating room of a small community hospital to the board room of a multibillion-dollar pharmaceutical company. Every day, health care administrators make decisions that impact both nurses and the populations of patients they serve. Nurses are in key positions to influence hospital decision makers and to share the realities of the day-to- day care of patients. Nurses have the greatest influence when they are well-informed, open-minded, collaborative, and willing to do what is right even if there is a personal cost. Here we examine one workplace policy where nurses have the power to influence outcomes, the issue of mandatory flu vaccines. Mandatory Flu Vaccination: the Good of the Patient Versus Personal Choice In the opening paragraph, we asked, “What do I owe the common good or the public interest in my life as a member of society, or more specifically as a member of the nursing profession?” Discerning the right course of action is not always easy. For this discussion, we will consider the issue of mandatory flu vaccinations. A Pennsylvania nurse was 3 months' pregnant when she was fired from a home infusion company for refusing a mandatory flu vaccine. She was fearful that receiving the vaccine might cause her to miscarry her baby (Lowes, 2014). She had previously experienced two miscarriages before becoming pregnant again. When she presented the required documentation from a physician recommending she not be vaccinated, the note was rejected. Her agency noted the physician 149failed to cite a medical reason for the exemption. Fear and anxiety were not considered valid reasons. The agency was unwilling to grant the
  • 30. nurse the option of wearing a mask because, as a home care nurse, it would have been difficult to enforce and doing so also placed her immunocompromised patients at risk (Lowes, 2014). Although we as individuals might make the same decision as our colleague from Pennsylvania, as a profession we also have the responsibility to serve the good of our patients. How do we maintain that balance? When considering mandatory flu vaccination policies, nurses must consider the interests of the individual with those of the population, in this case, the population of patients served. Ethical arguments in this situation weigh personal choice (autonomy) against the best interests of patients. Many argue that a nurse's duty not to harm patients outweighs any restriction on personal choice (Antommaria, 2013; Tilburt et al., 2008). Likewise, fairness and promoting the good of patients compels nurses to consider ways to provide protection for their vulnerable patients and to keep them safe (Steckel, 2007). Working though challenging issues is not easy. Using the Ethics Inventory to evaluate our personal approach to ethical issues is a good step toward improving our moral sensibility and moral valuing. Asking ourselves the question, “What counts as a good response?” can make us more aware of how we promote the common good and dignity of others. Do we maximize good and reduce harm for our patients? Do we act with virtue in difficult situations by speaking up when it may not be popular to do so? Do we act justly and/or advocate for justice in our work environments? Are we responsive to the vulnerabilities of others? Nurses are the most trusted of all professionals. Given our sheer numbers, think about the impact we could have if we shared one common voice to improve the care of the vulnerable. Conclusion Denise Thornby, former president of the American Association of Critical Care Nurses, always charged nurses to make waves. She exhorted nurses to identify when health care was not working for people in need and to do whatever was necessary to address the need. She died in the summer of 2012. We cannot
  • 31. think of a better way to end this chapter than to repeat her charge to nurses everywhere. Every day, every moment, you make choices on how to act or respond. Through these acts, you have the power to positively influence. As John Quincy Adams sagely said, ‘The influence of each human being on others in this life is a kind of immortality.’ So I ask you: What will be your act of courage? How will you influence your environment? What will be your legacy? (Thornby, 2001) Discussion Questions 1. Knowledge of ethical principles that support practice and policy can help nurses to recognize moral challenges and improve their ability to seek out the right thing to do when faced with a moral dilemma. Describe a recent clinical ethical dilemma and use the ethical terms discussed in the chapter to describe it. 2. In terms of ethnic and racial health disparities, what actions could nurses take to address these disturbing statistics from an ethical perspective? 3. Can you describe a situation in which you witnessed a health professional exhibit moral courage? References The Advisory Board Company. Where states stand on Medicaid expansion. [Retrieved from] www.advisory.com/daily- briefing/resources/primers/medicaidmap; 2014, September 4. Aleccia J. After lung transplant that changed the rules, Sarah is doing fine. NBC News Health. [Retrieved from] www.nbcnews.com/health/after-lung-transplant-changed-rules- sarah-doing-fine-2D11785542; 2013. American Nurses Association. Code of ethics for nurses with interpretive statements. Author: Silver Spring, MD; 2010. American Nurses Association. Nursing's social policy statement. 2010 ed. Author: Silver Spring, MD; 2010. American Nurses Association. Nursing: Scope and standards of practice. 2010 ed. Author: Silver Spring; 2010. Antommaria AH. An ethical analysis of mandatory influenza
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