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#35773 Topic: PROBLEM STATEMENT AND LIT REVIEW
FOR END OF LIFE CARE
Number of Pages: 2 (Double Spaced)
Number of sources: 5
Writing Style: APA
Type of document: Essay
Academic Level:Master
Category: Nursing
Language Style: English (U.S.)
Order Instructions:
PROBLEM STATEMENT AND LIT REVIEW
Evidence-based practice is extremely important in nursing.
Throughout your master’s program, you will complete research
on various topics. Knowing how to construct a strong problem
statement and complete a critical analysis of the available
information to write a literature review is essential. Follow the
instructions in the bullets below to direct you where to find
resources on problem statements and literature reviews.
You will write a problem statement and perform a literature
review in preparation for your ethical issues debate
presentation.
Share your problem statement in this discussion so that you can
review each other’s work and provide peer-to-peer feedback.
Also, describe what you think are the most important learning
takeaways from the literature review resources you reviewed.
THIS IS MY TOPIC FOR DEBATE:
ETHICAL ISSUES ON END OF LIFE CARE
" All human-beings are mortals and hence death is an inevitable
occurrence" (Karnik and Kanekar, 2016). With the medical
advancement and technology nowadays, there are some ethical
issues on end of life care . The limitations of health care
workers vs the quality patient care and of course the decision of
the patient itself are all conflicting at the same time. Respecting
patient's right, patient advocacy and PSDA should be taken into
consideration and respected.
PROs - better decision-making - both for health care workers
and family, reducing lawsuits, quality patient care
CONS - cost of care, death
Reference: FOR END OF LIFE CARE
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4934577/
• EBP and levels of evidence:
https://www.nurse.com/evidence-based-practice
• The relationship between EBP and “big ideas” in
nursing:http://ojin.nursingworld.org/MainMenuCategories/ANA
Marketplace/ANAPeriodicals/OJIN/TableofContents/Vol-18-
2013/No2-May-2013/Impact-of-Evidence-Based-Practice.html
• The limitations of EBP:
https://www.cebma.org/faq/limitations-evidence-based-practice/
I WILL ATTACH SOME MATERIALS/REFERENCES
Ethics Perspectives on End-of-life Care
Virginia P. Tilden, RN, DNSc, FAAN
Aggressive medical management of the terminally ill
has given rise to significant issues in the ethics of end-
of-life care. The major ethics principles of autonomy,
beneficence, and justice help frame existing research
findings. A w a v e of national initiatives to improve
end-of-life care is occurring.
T echnologic advancements in aggressive medical manage- ment
at the end o f life now have led more Americans to
fear how they die than death itself. The lay popular press 1-4
reflects how widespread is public dissatisfaction about health
care system management o f dying in the United States.
Surveys5 indicate that if given the choice, most Americans
would avoid aggressive intensive care unit (ICU) care if the
short-term outcome is likely to be death. The widely dissemi-
nated findings from SUPPORT, 6 the single largest and most
comprehensive study of hospital-based dying, and the recently
released Institute o f Medicine report, Approaching Death, 7
combine to set the stage for major reforms in end-of-life care.
A majority of Americans die in acute treatment hospital
settings, 8 and most in-hospital deaths are "negotiated" (ie, the
deaths follow a period of decision making between the patients'
family and the clinical team about how much aggressive treat-
ment to try and when to shift from the goal o f recovery to the
goal of comfort). The result of such negotiated trials often is an
overly long period of aggressive treatments, which are burden-
some to the patient, exhausting and expensive to the family,
demoralizing to clinicians, and difficult to justify for society's
resources. 9 Many experts think it is this type of burdensome
dying that has fueled public demand for physician-assisted
suicide. Certainly, this profile of dying invites reflection about
ethics issues in end-of-life care. From the perspective of each of
the 3 key ethics principles--autonomy, beneficence, and
justice--research findings help inform the state of the science
and set the context in which a wave of new initiatives occur
aimed at improving end-of-life care.
PRINCIPLE OF A U T O N O M Y : PATIENT'S VOICE
Western health care systems have long regarded autonomy as
the dominant ethics principle in directing clinical decisions.
Virginia P. Tilden is the Alma Youmans Spaulding
Distinguished
Professor, associate dean for research, School of Nursing, and
associate
director, Center for Ethics in Health Care Oregon Health
Sciences
University, Portland.
Nurs Outlook 1999;47:162-7.
Copyright © 1999 by Mosby, Inc.
0029-6554/99/$8.00 + 0 35/1/94503
Major advances in patient autonomy have been made in
affirming the moral and legal right of mentally competent
patients to make decisions about the course of their dying, in
improving the methods for the expression of patients' prefer-
ences, and in better understanding the family's role and expe-
rience in decision making. Highly public court cases, such as
the cases of Karen Quinlan and Nancy Cruzan, brought exten-
sive public recognition to the question of the patient's voice in
medical decision making about aggressive treatment in
terminal conditions. In the case of Nancy Cruzan, the US
Supreme Court supported the state o f Missouri's right to
require clear and convincing evidence of a patient's wish to
forego life-sustaining treatments. An outcome of that historic
decision was a national wave of activity related to advance
directives, including the 1991 enactment o f the federal Patient
Self-Determination Act, which requires that hospitals
routinely inform patients about advance directives.
Although advance directives were hoped to be the method
by which persons would exert their own preferences for end-of-
life medical treatments, advance directives are underused and
questionably effective.l° Even when properly completed before
a medical event, the usefulness of advance directives often is
limited by vague and nonspecific language or unavailability
when needed, ll'13 Other problems with advance directives
include a readability level exceeding levels recommended for
patients. 14 Also, marketplace forces in health care have
confused the public about efforts to limit aggressive end-of-life
care. Managed care and other "cost-efficiencies" have led many
persons to fear that advance directives may lead to withholding
of needed comfort care. Findings of a recent nursing study of
patient attitudes about advance directives 15 indicated that more
patients viewed advance directives as a method of obtaining
desired care than as a way of avoiding unwanted treatment.
Usefulness of advance directives appears to be especially
problematic among the elderly. 16 Even after 2 years of influ-
ence of the Patient Self-Determination Act, the rate in 1993
for residents of long-term care facilities, a patient group at risk
for life-threatening events, was only 13% 17 to 14%. TM In
addi-
tion, when nursing home residents are transferred to acute
care, advance directives commonly fail to accompany
t h e m ) 2,19 H o w to improve advance directives has been a
recent focus of investigators. 20
Numerous studies indicate strong cultural influences on
end-of-life plans and preferences; for example, African
American and Hispanic patients have been found to want
more aggressive life-prolonging treatment and to be less likely
to plan to complete an advance directive. 21-22 In other studies,
advance care planning was found to pose serious conflict with
162 Tilden VOLUME 47 • NUMBER 4 N U R S I N G O U T L
O O K
traditional values o f Korean American, Mexican American,
a n d Native American population samples123-24 Clearly,
a u t o n o m y is a culture-laden value, with m a n y cultures
supporting a family-centered model rather than an individual
model o f decision making. 25-26
W i t h o u t advance directives, decision making for a patient
who is unable to speak for himself or herself falls to the family
(or other surrogate in the absence o f family). Guidelines
recommend that when family members are decision makers
for incapacitated dying patients, their role is to represent the
patient's own values (referred to as "substituted judgment"), or
for an infant or child too y o u n g t o have values, the family
speaks in the "best interest" o f the child. However, this stan-
dard is more ideal than real. In reality, studies indicate that
family members' own values, motives, or identification with
the patient frequently drive such decisions. 27-3° For example,
in a 1994 study o f Veteran's Administration patients and their
surrogates, 29 surrogates correctly guessed patients' wishes
about life supports only 60% o f the time--little better than
random chance.
Recent studies 3>36 have illuminated the family's experience
o f decision making. T h e most significant factors that affect
families' decisions are their realization o f futility, their under-
standing o f whether the patient would have wanted continued
aggressive treatments, and their perception o f suffering o f
the
patient. O t h e r research 37 identified specific behaviors o f
nurses and physicians that influenced families' appraisals o f
their experience as positive or negative.
The most significant factors that
affect families'decisions are their
realization o f futility, their under-
standing o f whether the patient
would have wanted continued
aggressive treatments, and their
perception o f suffering o f the patient.
However, the nursing literature has not contained extensive
discussion about nursing's role in facilitating respect for
par.ients' preferences at end-of-life. For example, although an
extensive a m o u n t o f medical research on the use and
effective-
ness o f advance directives exists, little nursing research on any
aspect o f advance directives exists, with some important
excep-
tions. 14-15,38-40 Given nursing's greater degree o f presence
at
the bedside and key role in patient c o m m u n i c a t i o n ,
more
research is needed in this area. Theoretic discussions in the
nursing literature suggest that the nurse's role relates to patient
education and other ways o f facilitating patients' use o f
advance directives, monitoring staff's compliance to patients'
preferences, verifying the accuracy o f patients' preferences
over
time, facilitating patient-provider-family c o m m u n i c a t i o
n ,
leadership and collaboration in the development o f systems-
level policies and procedures related to advance directives, and
ensuring the highest quality comfort care and nonabandon-
ment o f the patient when the treatment goal changes from life-
extension to palliation and peaceful death. 41-46
Tilden
PRINCIPLE OF BENEFICENCE: BENEFIT-HARM TEST
The principle o f beneficence requires not only avoiding
outright
harm but also seeking the best solutions by using the "benefit-
harm" test to select actions that maximize benefits and minimize
harm. For terminal patients in acute care settings, the challenge
is to clarify what will be beneficial, for how long, and with
what
margin o f assurance. Surveys o f acute care nurses and
physicians
caring for dying patients indicate they often feel compelled to
act
against their conscience by prolonging overly burdensome treat-
ments, 47-48 thus calling into question the issue o f
beneficence.
In the context o f the principle o f beneficence, several clin-
ical practices deserve scrutiny, especially c a r d i o p u l m o n
a r y
resuscitation (CPR), high-dose pain management, and physi-
cian-assisted suicide. Each practice invokes a complex ethics
construct. CPR raises the concept of"futility. "49-5° High-dose
pain management raises the concept o f "the double-effect" (ie,
intended palliation vs secondary repression o f respirations). 51
Physician-assisted suicide pits the principle o f patient
autonomy against the principle o f provider nonmaleficence.
CPR quickly gained acceptance as standard medical therapy
after World War II, at which time success rates were very high
because it had not been used in debilitated, medically fragile
patient populations. In recent years, CPR as the "default" has
been called into question as failing the benefit-harm test by
imposing more harm than benefit. The public has been lulled,
perhaps by unrealistic television portrayals, into expecting
miraculous recoveries to follow heroic efforts; yet numerous
studies have found in-hospital CPR success rates to be less than
20%, with very few o f the patients who survive CPR
recovering
sufficiently to ever leave the hospital. Among the elderly, rates
o f
success with CPR are even more dismal, varying ftom 0% to 5%
in nursing homes, 52-54 and with high probability o f
functional
deterioration after CPR for those patients in hospitals. 55 W h e
n
the elderly are educated about CPR and its limited
effectiveness,
most decline it. 56 Thus clinical ethicists now urge clinicians to
educate patients about the low probability o f effectiveness o f
CPR when patients are elderly, debilitated, or chronically ill.
Some data do indicate an overall trend toward less use o f CPR
and other aggressive treatments. At one major medical center
between 1987 and 1993, the CPR rare fell from 49% to 10% o f
I C U deaths, and decisions to withdraw life-sustaining treat-
ments increased from 51% to 90% o f I C U deaths. 57
The public has been lulled, perhaps
by unrealistic television portrayals,
into expecting miraculous recoveries
to follow heroic efforts; yet numerous
studies have found in-hospital CPR
success rates to be less than 20%,
with very few o f the patients who
survive CPR recovering sufficiently
to ever leave the hospital.
Nurses in critical care describe their roles in assisting
patients and families with do not resuscitate (DNR) decisions
as advocate, negotiator, mediator, educator, and c o m m u n i -
NURSING OUTLOOK JULY/AUGUST 1999 163
Ethics Perspectives on End-of-life Care Tilden
cator. 58-59 Although nurses in critical care would expect
them-
selves to k n o w their patients' preferences for D N R versus
CPR, data from t h e S U P P O R T investigation did not show
that nurses were any better than physicians in knowing their
seriously ill patients' preferences for CPR. 6° In interviews with
1500 nurses caring for 1763 seriously ill patients in tertiary
care hospitals, only 13% o f nurses reported direct discussion
with patients about the patients' preferences for CPR. These
discussion were more likely to have taken place under 4 condi-
tions: (1) if the nurse thought the patient did not want CPR,
(2) if the nurse had spent more time with the patient, (3) if the
patient was in I C U , and (4) if the patient had metastatic
cancer. In a subset o f 354 patients for w h o m both registered
nurse and physician data were available, no difference existed
in the rate by which either discipline correctly identified what
the patient wanted. W h e n patients stated that they did not
want C P R (n = 127), 53% o f physicians and 45% o f nurses
correctly understood this; for patients who preferred C P R (n =
227), 79% o f physicians and 83% o f nurses correctly under-
stood this. T h u s the data indicate that nurses often are
unaware o f seriously ill patients' preferences and that they
infrequently initiate discussions with the patient, perhaps
because o f the traditional role definition that ascribes respon-
sibility for these discussions to physicians.
The data indicate that nurses
often are unaware o f seriously ill
patients'preferences and that they
infrequently initiate discussions
with the patient, perhaps because
o f the traditional role definition
that ascribes responsibility for these
discussions to physicians.
Management o f pain in terminal conditions by using high
doses o f opiates, regardless o f the secondary effects on
respira-
tion and resulting length o f life, is now widely supported. 61-
63
However, barriers to effective pain management still exist, 64-
65
such as providers' fear o f legal scrutiny or worry about patient
tolerance and side effects. Current Congressional efforts to
create a federal ban on physician-assisted suicide is likely to
have what is being called a "chilling" effect on physician
prescribing for pain.
Far more controversial than m a n a g e m e n t o f pain is
intended shortening o f life for mentally competent, terminally
ill patients through legalization o f physician-assisted suicide.
Only Oregon, through its citizen-initiated legislative process,
has approved legalization o f physician-assisted s u i c i d e - -
b y
51% o f the popular vote in 1994 and by 60% o f the popular
vote in a revote in 1997. At the time o f this writing, the
Oregon law remains in dispute. Meanwhile, the nursing liter-
ature on the topic is expanding. 66-75
PRINCIPLE OF JUSTICE: ISSUES OF COST
Efforts to put cost dollars to end-of-life care inevitably have
their motives questioned. Nonetheless, the principle o f justice
means that society treats citizens with a fair and decent level o f
health services, w h i c h implies wise use o f scarce or finite
resources and calls into question expensive but ineffective
treatments. For example, Cher and Lenert 76 calculated the
cost o f providing ineffective I C U treatment to a sample o f
California Medicare patients who were hospitalized in 1994.
Patients w h o died within a short period o f time, which
comprised 5% o f the sample, used 22% o f the I C U
resources.
Other studies suggest a similar profile. In reviewing trends in
published research, Emanue177 concluded that end-of-life care
costs 10% to 12% o f the total US health care budget but costs
a disproportionate 27% o f the Medicare budget.
T h e S U P P O R T study produced 2 major findings about
the
cost o f in-hospital end-of-life care. First, when the physician
and the patient were in agreement about avoiding CPR, the
hospital charges for those patients differed significantly (a
mean o f $21,000 vs a mean o f $35,000), which constitutes a
savings o f approximately $14,000. 9 Unfortunately, only 52%
o f patients who said they preferred not to have C P R actually
had a D N R order written in the chart. Second, families o f the
terminally ill often bear heavy financial burdens. O n e third o
f
the families in the S U P P O R T study reported a loss o f
most or
all o f the family savings, and 29% reported the loss o f the
family's major source o f income at the patients' death. 78 In
continued analysis o f the S U P P O R T data, the
investigators 79
f o u n d a statistically significant relationship between the
family's economic hardship and the patient's preference for
care that would focus on comfort rather than extending life.
Although the statistical association was modest, it was large
enough to underscore the great concern that economic hard-
ship o n families o f the seriously ill is c o m m o n , and that
patients suffer worry and guilt about the effects o f their illness
on the family's finances.
Vghen it is the patient's preference and when indicated, pallia-
tive care also has the added, secondary advantage o f wise
resource
utilization. ~ ' h e n hospice or advance directives are used,
esti-
mates o f savings in the last week o f life range between 25%
to
40%. 77 Oregon Hospice Association data indicate that the cost
o f 2 days o f hospital care is roughly equivalent to that o f 30
days
of hospice care. Medicare data for 1994 indicated that Medicare
patients who were not enrolled in hospice spent 20 o f their last
50 days in hospital, and Medicare patients who were enrolled in
hospice spent only 8 o f their last 50 days in hospital.
When it is the patient's preference
and when indicated, palliative
care also has the added,
secondary advantage o f wise
resource utilization.
ONE STATES'S PROGRESS
End-of-life care in Oregon appears to be significantly different
than it is in other regions o f the country, 8°-81 at least partly
as
a result o f an intense wave o f palliative care reform that
followed the Oregon physician-assisted suicide votes. 82-83 For
164 VOLUME 47 • NUMBER 4 NURSING OUTLOOK
Ethics Perspectives on End-of-life Care Tilden
example, although a majority of Americans die in acute care
hospitals, only one third o f Oregonians do so, with equal
numbers o f Oregonians dying in nursing homes and in
home/hospice. 84 Data on 1994-95 deaths of Medicare
enrollees show that only 22% of Medicare deaths in Portland,
Oregon, were in an acute care hospital. 85 In addition,
although nationwide the majority o f elderly nursing home
residents do not have D N R medical orders, I3 the opposite is
true in Oregon, where more than 90% o f elderly nursing
home residents have documented D N R orders. 2° Hospice
referral is high in Oregon, with about one third of Oregonians
who die annually doing so with hospice support, compared
with the national figure of only 17%. In addition, Oregon
leads the country in the medical use of morphine. Further,
Oregon's advance directives law is comparatively liberal,
permitting the refusal of any medical treatment and autho-
rizing surrogates to make decisions for patients who are termi-
nally ill or who have dementia and can no longer speak for
themselves. The Oregon law also requires that when life-
sustaining treatments are withheld or withdrawn, medication
to relieve pain and suffering must be provided.
These programs a n d many more
national a n d state initiatives herald
a wave ofr rm to end-of-l care
that now constitutes one o f the most
significant health care movements
in the United States today.
Multiple factors likely have contributed to Oregon's successes
in improving end-of-life care, including numerous dinical and
legislative task forces, an active citizenry, a liberal governor
who
aJso happens to be a physician, and effective organizations such
as Oregon Health Decisions and the Supportive Care of the
Dying: A Coalition for Compassionate Care. In addition, the
Center for Ethics in Health Care at Oregon Health Sciences
University has played an active role in statewide conferences to
improve provider practices and in convening task forces such as
the Task Force to Improve the Care of Terminally Ill
Oregonians, which is comprised of representatives of more than
40 organizations that serve terminally ill Oregonians.
NATIONAL INITIATIVES TO IMPROVE CARE OF
THE D Y I N G
In Approaching Death." Improving Care at the End-of-Life, 7
the
Institute of Medicine recently called for advances in research
to improve care of the dying and for major changes in how the
health care system manages dying. The need for change, both
in how clinicians are prepared by their educational programs
to care for the dying and in systems-level policies, is now
widely recognized. 86 Numerous professional organizations
have made similar calls to action. For example, American
Health Decisions, a national coalition of states' citizens' groups
focused on articulating citizens' values that shape health care,
called for action in its report, The Quest to Die with Dignity."
An Analysis o f Americans' Values, Opinions and Attitudes
Concerning End-o~Life Care. 87 The Robert Wood Johnson
Foundation (RWJ) supports several major initiatives. The
foundation's Last Acts: Care and Caring at the End-of-life
brings together professional organizations that influence clin-
ical practice, professional training, health care financing,
health care ethics, and consumer awareness. The task of the
LastAets Coalition is to improve communication and decision
making about end-of-life care and to change the American
culture and attitudes toward dying. RWJ's Community-State
Partnerships to Improve End-of-Life Care is an $11.25 million
program that promotes broad-based changes in public policies
and practices that will improve care for dying Americans.
Many nursing professional organizations are active in
various national programs and initiatives. For example, the
American Academy of Nursing recently announced its part-
nership with the American Geriatric Society, the George
Washington University Center to Improve Care of the Dying,
the Soros Foundation Project on Death in America, and the
American Association of Retired Persons on an important
joint venture--measuring the quality of care at the end of life.
As another example, national nursing organizations that are
concerned with curricula (American Association of Colleges of
Nursing, National League for Nursing, National Council of
State Boards of Nursing) recently have joined in an RWJ-
funded project to strengthen nursing education to improve
pain management and other end-of-life care.
The nursing research institute has been a leader in federal
funding for research in this area. In 1989 the (then) National
Center for Nursing Research (NCNR) sponsored a workshop
on "Bioethics and Clinical Practice: Examining Research
Outcomes and Methods." As an outcome of that meeting,
N C N R then issued a small grants program on bioethics and
clinical decision making (1991-93) to seed pilot-level research
that would form the foundation for further development. This
past year, nursing at the National Institutes of Health (NIH)
has again led the way by spearheading a cooperative initiative
in this area. In the fall of 1997, 5 N I H institutes, including
the
National Institute for Nursing Research (NINR) and the NIH
Office of Alternative Medicine, cooperated in a research work-
shop about "Symptoms in Terminal Illness." An outcome of
that meeting is a new program announcement at NIH called
"Management of Symptoms at the End-of-Life."
These programs and many more national and state initia-
tives herald a wave of reform to end-of-life care that now
constitutes one of the most significant health care movements
in the United States today. In announcing the coalition, the
honorary chairwoman o f RWJ's Last Acts Coalition, former
first lady Rosalynn Carter, said, "People's greatest fears revolve
around how they will live with illness until they die. We need
this coalition so that fewer people will die alone, in pain and
attached to machines, and with the result that more people
and their loved ones can experience dying for what it ought to
be--the last act in the journey of life. ''88 This reflection aptly
captures the sentiment of many persons.
I appreciate Christine Nelson, RN, MS, and Anne Rosenfeld,
RN, PhD, for
their editorial review and Marina Rios Da[ey for technical
support. []
NURSING OUTLOOK JULY/AUGUST I999 165
Ethics Perspectives on End-ofilife Care Tilden
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49. Taylor C. Medical futility and nursing. Image J Nurs Sch
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50. Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility:
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51. Quill T, Dresser R, Brock DW. The rule of double effect--a
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52. Applebaum GE, King JE, Finucane TE. The outcome of CPR
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53. Awoke S, Mouton CP, Parrott M. Outcomes of skilled
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54. Tresch DD, Neahring JM, Duthie EH, Mark DH, Kartes SK,
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65. Ward SE, Berry PE, Misiewicz H. Concerns about
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68. Davis AJ, Phillips L, Drought TS, et ai. Nurses' attitudes
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69. Davis AJ, Slater PV. U.S. and Australian nurses' attitudes
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73. Tilden VP, Lee MA. Oregon's physician-assisted suicide
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troubling issues for families. J Faro Nuts 1997;3:120-9.
74. Volker DL. Assisted suicide and the terminally i11: is there
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76. Cher DJ, Leuert LA. Method of Medicare reimbursement
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M I S S I O N STATEMENT
Nursing Outlook, the official journal o f the American
Academy of Nursing, provides critical and timely anal-
yses o f emerging professional and health care issues o f
importance to all nurses. The primarily editorial goals
o f the Journal are to:
1. Publish innovative, original articles that stimulate thoughtful
discussion and scholarly debate and policy
implications among nurses and other health care professionals.
2. Inform readers about the diversity o f opinion on
controversial professional and health care and health
policy matters affecting nursing and the health o f the public.
3. Provide a multidisciplinary forum for the dissemination o f
information derived from the synthesis o f
extant knowledge o f current and future clinical practice and
health policy alternatives.
4. Disseminate information about creative, alternative, and
fox'ward-looking models o f education and clin-
ical practice as they relate to changing systems o f health care.
5. Promote the synthesis and use o f scientific knowledge in a
timely fashion by nurses and other health care
professionals to enhance the quality and efficiency o f health
care.
6. Provide information about leadership and leadership
development opportunities for nurses, including
professional meetings, hearings, forums, fellowships, and
internships.
7. Provide the American Academy o f Nursing with a medium
for communicating important policy issues
and organizational activities.
8. Increase critical awareness o f technologies, products, and
services that have the potential for increasing
the effectiveness o f nurses in all settings.
NURSING OUTLOOK JULY/AUGUST 1999 167
What is a Literature Review?
A literature review is a critical consideration of the current
information available about a subject matter. The author of a
literature review does not create a new primary source, but,
instead, the author summarizes and analyzes existing primary
sources to create a valuable secondary source that evaluates
current, published theoretical, methodological, and
experimental work in the field of the subject matter. Unlike a
research paper, free- standing (not part of a larger paper)
literature reviews do not seek to make a new argument; instead,
a literature review synthesizes the arguments of other authors
and collects a broad base of knowledge about a subject matter.
Often a literature review is the initial step of the research
process of a thesis or other weighty research project, used to
create the proposal, guide the writing, and provide evidence-
based support for the findings of the writing. Also, the literature
review provides the writing with a context within the subject
matter for readers, equipping readers with the necessary
knowledge regarding the subject matter so that they may
correctly interpret the writing.
What are the learning advantages of a literature review?
From an instructional perspective, the learning advantages of
assigning a literature review are numerous. Literature reviews
encourage students to compare and contrast different authors’
arguments, methodology, writing styles, and conclusions about
a particular subject matter. Furthermore, students are
encouraged to evaluate sources, granting them insight into what
characteristics make up a quality resource. By amassing a large
number of resources about a single topic, literature reviews
promote in-depth learning about that topic through a student-
guided process. Though literature reviews often function as an
early step in the process of writing research papers, literature
reviews are also great for building academic writing skills in
students.
From a student perspective, the writing tools developed by
creating a literature review are also manifold. The critical skills
built by comparing and contrasting how different authors
research and present information reinforce students’ own
abilities to research and present information. The process of
determining which sources to use guides students to
Identify and use high-quality resources. Literature reviews
allow students to select their own sources, building their
decision-making process as well as their interest in the subject
matter as they are the materials selectors. Considering that
literature reviews are excellent starting points for all research
assignments, even if only being conducted as informal notes for
the writer, learning how to create a formal literature review will
only improve future writings.
What are the basic components of a literature review?
Researching a literature review
Literature reviews have several steps involved in the
composition process. First, writers must select a topic and the
scope of that topic: how many sources should be included in the
literature review? How much information must be included from
each source? What aspects of the topic will be discussed? Will
any aspects of the topic be ignored or only discussed to a lesser
extent, and why? These questions and others that help writers
discover limiters that clarify and focus their subject matter
guide the further steps.
Depending on the scope of the literature review, the largest
section of researching the literature review is often locating the
sources necessary to write the review. Authors should always
use resources that meet the quality standards of their given
fields; usually, these standards include only using scholarly,
peer-reviewed primary sources. Several strategies exist for
finding these resources including: searching databases for
relevant scholarly publications, browsing subject-specific
databases for the most field-specific resources, using references
pages or indexing resources to find further information, and
searching library catalogs for print and digital holdings among
many other search strategies. Use the limiters determined during
the initial scope-determining process to enhance the search,
reducing the time and effort necessary to complete this process.
In addition to merely gathering and organizing the writings to
discuss in the literature review, authors must summarize the
information contained in the resources within the context of the
scope of the literature review. Authors also must critically
consider the resources and provide scholarly feedback of the
value of the resources within the subject matter of the literature
review.
Writing a literature review
Often, much of the language of the introduction of the literature
review can be gathered during the initial step of the process.
The written introduction will include an overview of the topic,
its relevance in the given field, and the purpose for composing
the literature review. This section may also define key terms
that appear within the body of the paper, especially if the paper
includes technical language that may obfuscate the author’s
ability to communicate effectively with the given audience.
Writing the body of the literature review requires thought into
what organizational structure will best support the topic’s
focus, such as in chronological order of publication, more broad
subject matter to more specifically focused writings, different
schools of thought about the same subject, or different theories
addressing the given topic, among others. A large degree of
comparing and contrasting the resources occurs at this level of
the writing; the differences observed when contrasting the
resources can sometimes suggest an organizational strategy.
Beyond organization, authors must also decide the level of
analysis to use in their literature reviews. Bloom’s Taxonomy
helps guide writers about how to consider and express
information to communicate different levels of thinking about a
topic. Yet another important consideration at this step of the
writing process is to consider how to provide in-text citations, a
references page, and format the paper—the key tool for this
consideration is the style guide that is prescribed for the
assignment.
The literature review is not complete without a conclusion,
results, or findings section that ties together the considerations
of the author about the resources within the scope of the study.
The research should be presented in such a way that the
literature advances the knowledge of readers and the concluding
section should summarize what information readers will have
attained from reading the paper. This section serves as a final
evaluation of the resources in a clear and concise manner for
readers.
Key Terms of Literature Review
Discussion of literature reviews and the writing process can
lead to confusion if students are unfamiliar with the key terms
of researching. The following are some of the key terms that
may require clear definition to ensure that students can
successfully interpret assignment guidelines.
Evidence-based support: Defense of an argument with a
foundation in other scholarly sources that reinforce the
argument; outside sources valued in the relevant subject field
that confirm the statement
Critical consideration: Writers of literature reviews only use
scholarly (peer-reviewed) sources to analyze a subject matter
and evaluate
Limiters: Specific search criteria, such as a date range, full-text
only, or publication titles, that limit the search to exclude data
that does not fit within the criteria
Primary source: Original research about a subject matter
composed by the scholar(s) participating in the process;
historical artifacts or documents, scholarly research, and
recordings of events are all examples of primary sources
Secondary source: Any composition for which the basis of the
creation is a primary source and does not involve new
information beyond analysis, synthesis, and/or evaluation of
existing sources
NOTE: The Literature Review information was provided by
WCU Anaheim librarian, Bethany Firch.

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#35773 Topic PROBLEM STATEMENT AND LIT REVIEW FOR END OF LIFE CAR.docx

  • 1. #35773 Topic: PROBLEM STATEMENT AND LIT REVIEW FOR END OF LIFE CARE Number of Pages: 2 (Double Spaced) Number of sources: 5 Writing Style: APA Type of document: Essay Academic Level:Master Category: Nursing Language Style: English (U.S.) Order Instructions: PROBLEM STATEMENT AND LIT REVIEW Evidence-based practice is extremely important in nursing. Throughout your master’s program, you will complete research on various topics. Knowing how to construct a strong problem statement and complete a critical analysis of the available information to write a literature review is essential. Follow the instructions in the bullets below to direct you where to find resources on problem statements and literature reviews.
  • 2. You will write a problem statement and perform a literature review in preparation for your ethical issues debate presentation. Share your problem statement in this discussion so that you can review each other’s work and provide peer-to-peer feedback. Also, describe what you think are the most important learning takeaways from the literature review resources you reviewed. THIS IS MY TOPIC FOR DEBATE: ETHICAL ISSUES ON END OF LIFE CARE " All human-beings are mortals and hence death is an inevitable occurrence" (Karnik and Kanekar, 2016). With the medical advancement and technology nowadays, there are some ethical issues on end of life care . The limitations of health care workers vs the quality patient care and of course the decision of the patient itself are all conflicting at the same time. Respecting patient's right, patient advocacy and PSDA should be taken into consideration and respected. PROs - better decision-making - both for health care workers and family, reducing lawsuits, quality patient care
  • 3. CONS - cost of care, death Reference: FOR END OF LIFE CARE https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4934577/ • EBP and levels of evidence: https://www.nurse.com/evidence-based-practice • The relationship between EBP and “big ideas” in nursing:http://ojin.nursingworld.org/MainMenuCategories/ANA Marketplace/ANAPeriodicals/OJIN/TableofContents/Vol-18- 2013/No2-May-2013/Impact-of-Evidence-Based-Practice.html • The limitations of EBP: https://www.cebma.org/faq/limitations-evidence-based-practice/ I WILL ATTACH SOME MATERIALS/REFERENCES Ethics Perspectives on End-of-life Care Virginia P. Tilden, RN, DNSc, FAAN Aggressive medical management of the terminally ill has given rise to significant issues in the ethics of end- of-life care. The major ethics principles of autonomy, beneficence, and justice help frame existing research findings. A w a v e of national initiatives to improve end-of-life care is occurring. T echnologic advancements in aggressive medical manage- ment
  • 4. at the end o f life now have led more Americans to fear how they die than death itself. The lay popular press 1-4 reflects how widespread is public dissatisfaction about health care system management o f dying in the United States. Surveys5 indicate that if given the choice, most Americans would avoid aggressive intensive care unit (ICU) care if the short-term outcome is likely to be death. The widely dissemi- nated findings from SUPPORT, 6 the single largest and most comprehensive study of hospital-based dying, and the recently released Institute o f Medicine report, Approaching Death, 7 combine to set the stage for major reforms in end-of-life care. A majority of Americans die in acute treatment hospital settings, 8 and most in-hospital deaths are "negotiated" (ie, the deaths follow a period of decision making between the patients' family and the clinical team about how much aggressive treat- ment to try and when to shift from the goal o f recovery to the goal of comfort). The result of such negotiated trials often is an overly long period of aggressive treatments, which are burden- some to the patient, exhausting and expensive to the family, demoralizing to clinicians, and difficult to justify for society's resources. 9 Many experts think it is this type of burdensome dying that has fueled public demand for physician-assisted suicide. Certainly, this profile of dying invites reflection about ethics issues in end-of-life care. From the perspective of each of the 3 key ethics principles--autonomy, beneficence, and justice--research findings help inform the state of the science and set the context in which a wave of new initiatives occur aimed at improving end-of-life care. PRINCIPLE OF A U T O N O M Y : PATIENT'S VOICE Western health care systems have long regarded autonomy as the dominant ethics principle in directing clinical decisions. Virginia P. Tilden is the Alma Youmans Spaulding Distinguished
  • 5. Professor, associate dean for research, School of Nursing, and associate director, Center for Ethics in Health Care Oregon Health Sciences University, Portland. Nurs Outlook 1999;47:162-7. Copyright © 1999 by Mosby, Inc. 0029-6554/99/$8.00 + 0 35/1/94503 Major advances in patient autonomy have been made in affirming the moral and legal right of mentally competent patients to make decisions about the course of their dying, in improving the methods for the expression of patients' prefer- ences, and in better understanding the family's role and expe- rience in decision making. Highly public court cases, such as the cases of Karen Quinlan and Nancy Cruzan, brought exten- sive public recognition to the question of the patient's voice in medical decision making about aggressive treatment in terminal conditions. In the case of Nancy Cruzan, the US Supreme Court supported the state o f Missouri's right to require clear and convincing evidence of a patient's wish to forego life-sustaining treatments. An outcome of that historic decision was a national wave of activity related to advance directives, including the 1991 enactment o f the federal Patient Self-Determination Act, which requires that hospitals routinely inform patients about advance directives. Although advance directives were hoped to be the method by which persons would exert their own preferences for end-of- life medical treatments, advance directives are underused and questionably effective.l° Even when properly completed before a medical event, the usefulness of advance directives often is limited by vague and nonspecific language or unavailability when needed, ll'13 Other problems with advance directives include a readability level exceeding levels recommended for
  • 6. patients. 14 Also, marketplace forces in health care have confused the public about efforts to limit aggressive end-of-life care. Managed care and other "cost-efficiencies" have led many persons to fear that advance directives may lead to withholding of needed comfort care. Findings of a recent nursing study of patient attitudes about advance directives 15 indicated that more patients viewed advance directives as a method of obtaining desired care than as a way of avoiding unwanted treatment. Usefulness of advance directives appears to be especially problematic among the elderly. 16 Even after 2 years of influ- ence of the Patient Self-Determination Act, the rate in 1993 for residents of long-term care facilities, a patient group at risk for life-threatening events, was only 13% 17 to 14%. TM In addi- tion, when nursing home residents are transferred to acute care, advance directives commonly fail to accompany t h e m ) 2,19 H o w to improve advance directives has been a recent focus of investigators. 20 Numerous studies indicate strong cultural influences on end-of-life plans and preferences; for example, African American and Hispanic patients have been found to want more aggressive life-prolonging treatment and to be less likely to plan to complete an advance directive. 21-22 In other studies, advance care planning was found to pose serious conflict with 162 Tilden VOLUME 47 • NUMBER 4 N U R S I N G O U T L O O K traditional values o f Korean American, Mexican American, a n d Native American population samples123-24 Clearly, a u t o n o m y is a culture-laden value, with m a n y cultures supporting a family-centered model rather than an individual
  • 7. model o f decision making. 25-26 W i t h o u t advance directives, decision making for a patient who is unable to speak for himself or herself falls to the family (or other surrogate in the absence o f family). Guidelines recommend that when family members are decision makers for incapacitated dying patients, their role is to represent the patient's own values (referred to as "substituted judgment"), or for an infant or child too y o u n g t o have values, the family speaks in the "best interest" o f the child. However, this stan- dard is more ideal than real. In reality, studies indicate that family members' own values, motives, or identification with the patient frequently drive such decisions. 27-3° For example, in a 1994 study o f Veteran's Administration patients and their surrogates, 29 surrogates correctly guessed patients' wishes about life supports only 60% o f the time--little better than random chance. Recent studies 3>36 have illuminated the family's experience o f decision making. T h e most significant factors that affect families' decisions are their realization o f futility, their under- standing o f whether the patient would have wanted continued aggressive treatments, and their perception o f suffering o f the patient. O t h e r research 37 identified specific behaviors o f nurses and physicians that influenced families' appraisals o f their experience as positive or negative. The most significant factors that affect families'decisions are their realization o f futility, their under- standing o f whether the patient would have wanted continued aggressive treatments, and their perception o f suffering o f the patient.
  • 8. However, the nursing literature has not contained extensive discussion about nursing's role in facilitating respect for par.ients' preferences at end-of-life. For example, although an extensive a m o u n t o f medical research on the use and effective- ness o f advance directives exists, little nursing research on any aspect o f advance directives exists, with some important excep- tions. 14-15,38-40 Given nursing's greater degree o f presence at the bedside and key role in patient c o m m u n i c a t i o n , more research is needed in this area. Theoretic discussions in the nursing literature suggest that the nurse's role relates to patient education and other ways o f facilitating patients' use o f advance directives, monitoring staff's compliance to patients' preferences, verifying the accuracy o f patients' preferences over time, facilitating patient-provider-family c o m m u n i c a t i o n , leadership and collaboration in the development o f systems- level policies and procedures related to advance directives, and ensuring the highest quality comfort care and nonabandon- ment o f the patient when the treatment goal changes from life- extension to palliation and peaceful death. 41-46 Tilden PRINCIPLE OF BENEFICENCE: BENEFIT-HARM TEST The principle o f beneficence requires not only avoiding outright harm but also seeking the best solutions by using the "benefit- harm" test to select actions that maximize benefits and minimize harm. For terminal patients in acute care settings, the challenge is to clarify what will be beneficial, for how long, and with what
  • 9. margin o f assurance. Surveys o f acute care nurses and physicians caring for dying patients indicate they often feel compelled to act against their conscience by prolonging overly burdensome treat- ments, 47-48 thus calling into question the issue o f beneficence. In the context o f the principle o f beneficence, several clin- ical practices deserve scrutiny, especially c a r d i o p u l m o n a r y resuscitation (CPR), high-dose pain management, and physi- cian-assisted suicide. Each practice invokes a complex ethics construct. CPR raises the concept of"futility. "49-5° High-dose pain management raises the concept o f "the double-effect" (ie, intended palliation vs secondary repression o f respirations). 51 Physician-assisted suicide pits the principle o f patient autonomy against the principle o f provider nonmaleficence. CPR quickly gained acceptance as standard medical therapy after World War II, at which time success rates were very high because it had not been used in debilitated, medically fragile patient populations. In recent years, CPR as the "default" has been called into question as failing the benefit-harm test by imposing more harm than benefit. The public has been lulled, perhaps by unrealistic television portrayals, into expecting miraculous recoveries to follow heroic efforts; yet numerous studies have found in-hospital CPR success rates to be less than 20%, with very few o f the patients who survive CPR recovering sufficiently to ever leave the hospital. Among the elderly, rates o f success with CPR are even more dismal, varying ftom 0% to 5% in nursing homes, 52-54 and with high probability o f functional deterioration after CPR for those patients in hospitals. 55 W h e
  • 10. n the elderly are educated about CPR and its limited effectiveness, most decline it. 56 Thus clinical ethicists now urge clinicians to educate patients about the low probability o f effectiveness o f CPR when patients are elderly, debilitated, or chronically ill. Some data do indicate an overall trend toward less use o f CPR and other aggressive treatments. At one major medical center between 1987 and 1993, the CPR rare fell from 49% to 10% o f I C U deaths, and decisions to withdraw life-sustaining treat- ments increased from 51% to 90% o f I C U deaths. 57 The public has been lulled, perhaps by unrealistic television portrayals, into expecting miraculous recoveries to follow heroic efforts; yet numerous studies have found in-hospital CPR success rates to be less than 20%, with very few o f the patients who survive CPR recovering sufficiently to ever leave the hospital. Nurses in critical care describe their roles in assisting patients and families with do not resuscitate (DNR) decisions as advocate, negotiator, mediator, educator, and c o m m u n i - NURSING OUTLOOK JULY/AUGUST 1999 163 Ethics Perspectives on End-of-life Care Tilden cator. 58-59 Although nurses in critical care would expect them- selves to k n o w their patients' preferences for D N R versus CPR, data from t h e S U P P O R T investigation did not show
  • 11. that nurses were any better than physicians in knowing their seriously ill patients' preferences for CPR. 6° In interviews with 1500 nurses caring for 1763 seriously ill patients in tertiary care hospitals, only 13% o f nurses reported direct discussion with patients about the patients' preferences for CPR. These discussion were more likely to have taken place under 4 condi- tions: (1) if the nurse thought the patient did not want CPR, (2) if the nurse had spent more time with the patient, (3) if the patient was in I C U , and (4) if the patient had metastatic cancer. In a subset o f 354 patients for w h o m both registered nurse and physician data were available, no difference existed in the rate by which either discipline correctly identified what the patient wanted. W h e n patients stated that they did not want C P R (n = 127), 53% o f physicians and 45% o f nurses correctly understood this; for patients who preferred C P R (n = 227), 79% o f physicians and 83% o f nurses correctly under- stood this. T h u s the data indicate that nurses often are unaware o f seriously ill patients' preferences and that they infrequently initiate discussions with the patient, perhaps because o f the traditional role definition that ascribes respon- sibility for these discussions to physicians. The data indicate that nurses often are unaware o f seriously ill patients'preferences and that they infrequently initiate discussions with the patient, perhaps because o f the traditional role definition that ascribes responsibility for these discussions to physicians. Management o f pain in terminal conditions by using high doses o f opiates, regardless o f the secondary effects on respira- tion and resulting length o f life, is now widely supported. 61- 63
  • 12. However, barriers to effective pain management still exist, 64- 65 such as providers' fear o f legal scrutiny or worry about patient tolerance and side effects. Current Congressional efforts to create a federal ban on physician-assisted suicide is likely to have what is being called a "chilling" effect on physician prescribing for pain. Far more controversial than m a n a g e m e n t o f pain is intended shortening o f life for mentally competent, terminally ill patients through legalization o f physician-assisted suicide. Only Oregon, through its citizen-initiated legislative process, has approved legalization o f physician-assisted s u i c i d e - - b y 51% o f the popular vote in 1994 and by 60% o f the popular vote in a revote in 1997. At the time o f this writing, the Oregon law remains in dispute. Meanwhile, the nursing liter- ature on the topic is expanding. 66-75 PRINCIPLE OF JUSTICE: ISSUES OF COST Efforts to put cost dollars to end-of-life care inevitably have their motives questioned. Nonetheless, the principle o f justice means that society treats citizens with a fair and decent level o f health services, w h i c h implies wise use o f scarce or finite resources and calls into question expensive but ineffective treatments. For example, Cher and Lenert 76 calculated the cost o f providing ineffective I C U treatment to a sample o f California Medicare patients who were hospitalized in 1994. Patients w h o died within a short period o f time, which comprised 5% o f the sample, used 22% o f the I C U resources. Other studies suggest a similar profile. In reviewing trends in published research, Emanue177 concluded that end-of-life care costs 10% to 12% o f the total US health care budget but costs a disproportionate 27% o f the Medicare budget.
  • 13. T h e S U P P O R T study produced 2 major findings about the cost o f in-hospital end-of-life care. First, when the physician and the patient were in agreement about avoiding CPR, the hospital charges for those patients differed significantly (a mean o f $21,000 vs a mean o f $35,000), which constitutes a savings o f approximately $14,000. 9 Unfortunately, only 52% o f patients who said they preferred not to have C P R actually had a D N R order written in the chart. Second, families o f the terminally ill often bear heavy financial burdens. O n e third o f the families in the S U P P O R T study reported a loss o f most or all o f the family savings, and 29% reported the loss o f the family's major source o f income at the patients' death. 78 In continued analysis o f the S U P P O R T data, the investigators 79 f o u n d a statistically significant relationship between the family's economic hardship and the patient's preference for care that would focus on comfort rather than extending life. Although the statistical association was modest, it was large enough to underscore the great concern that economic hard- ship o n families o f the seriously ill is c o m m o n , and that patients suffer worry and guilt about the effects o f their illness on the family's finances. Vghen it is the patient's preference and when indicated, pallia- tive care also has the added, secondary advantage o f wise resource utilization. ~ ' h e n hospice or advance directives are used, esti- mates o f savings in the last week o f life range between 25% to 40%. 77 Oregon Hospice Association data indicate that the cost o f 2 days o f hospital care is roughly equivalent to that o f 30
  • 14. days of hospice care. Medicare data for 1994 indicated that Medicare patients who were not enrolled in hospice spent 20 o f their last 50 days in hospital, and Medicare patients who were enrolled in hospice spent only 8 o f their last 50 days in hospital. When it is the patient's preference and when indicated, palliative care also has the added, secondary advantage o f wise resource utilization. ONE STATES'S PROGRESS End-of-life care in Oregon appears to be significantly different than it is in other regions o f the country, 8°-81 at least partly as a result o f an intense wave o f palliative care reform that followed the Oregon physician-assisted suicide votes. 82-83 For 164 VOLUME 47 • NUMBER 4 NURSING OUTLOOK Ethics Perspectives on End-of-life Care Tilden example, although a majority of Americans die in acute care hospitals, only one third o f Oregonians do so, with equal numbers o f Oregonians dying in nursing homes and in home/hospice. 84 Data on 1994-95 deaths of Medicare enrollees show that only 22% of Medicare deaths in Portland, Oregon, were in an acute care hospital. 85 In addition, although nationwide the majority o f elderly nursing home residents do not have D N R medical orders, I3 the opposite is true in Oregon, where more than 90% o f elderly nursing home residents have documented D N R orders. 2° Hospice
  • 15. referral is high in Oregon, with about one third of Oregonians who die annually doing so with hospice support, compared with the national figure of only 17%. In addition, Oregon leads the country in the medical use of morphine. Further, Oregon's advance directives law is comparatively liberal, permitting the refusal of any medical treatment and autho- rizing surrogates to make decisions for patients who are termi- nally ill or who have dementia and can no longer speak for themselves. The Oregon law also requires that when life- sustaining treatments are withheld or withdrawn, medication to relieve pain and suffering must be provided. These programs a n d many more national a n d state initiatives herald a wave ofr rm to end-of-l care that now constitutes one o f the most significant health care movements in the United States today. Multiple factors likely have contributed to Oregon's successes in improving end-of-life care, including numerous dinical and legislative task forces, an active citizenry, a liberal governor who aJso happens to be a physician, and effective organizations such as Oregon Health Decisions and the Supportive Care of the Dying: A Coalition for Compassionate Care. In addition, the Center for Ethics in Health Care at Oregon Health Sciences University has played an active role in statewide conferences to improve provider practices and in convening task forces such as the Task Force to Improve the Care of Terminally Ill Oregonians, which is comprised of representatives of more than 40 organizations that serve terminally ill Oregonians. NATIONAL INITIATIVES TO IMPROVE CARE OF THE D Y I N G In Approaching Death." Improving Care at the End-of-Life, 7
  • 16. the Institute of Medicine recently called for advances in research to improve care of the dying and for major changes in how the health care system manages dying. The need for change, both in how clinicians are prepared by their educational programs to care for the dying and in systems-level policies, is now widely recognized. 86 Numerous professional organizations have made similar calls to action. For example, American Health Decisions, a national coalition of states' citizens' groups focused on articulating citizens' values that shape health care, called for action in its report, The Quest to Die with Dignity." An Analysis o f Americans' Values, Opinions and Attitudes Concerning End-o~Life Care. 87 The Robert Wood Johnson Foundation (RWJ) supports several major initiatives. The foundation's Last Acts: Care and Caring at the End-of-life brings together professional organizations that influence clin- ical practice, professional training, health care financing, health care ethics, and consumer awareness. The task of the LastAets Coalition is to improve communication and decision making about end-of-life care and to change the American culture and attitudes toward dying. RWJ's Community-State Partnerships to Improve End-of-Life Care is an $11.25 million program that promotes broad-based changes in public policies and practices that will improve care for dying Americans. Many nursing professional organizations are active in various national programs and initiatives. For example, the American Academy of Nursing recently announced its part- nership with the American Geriatric Society, the George Washington University Center to Improve Care of the Dying, the Soros Foundation Project on Death in America, and the American Association of Retired Persons on an important joint venture--measuring the quality of care at the end of life. As another example, national nursing organizations that are concerned with curricula (American Association of Colleges of
  • 17. Nursing, National League for Nursing, National Council of State Boards of Nursing) recently have joined in an RWJ- funded project to strengthen nursing education to improve pain management and other end-of-life care. The nursing research institute has been a leader in federal funding for research in this area. In 1989 the (then) National Center for Nursing Research (NCNR) sponsored a workshop on "Bioethics and Clinical Practice: Examining Research Outcomes and Methods." As an outcome of that meeting, N C N R then issued a small grants program on bioethics and clinical decision making (1991-93) to seed pilot-level research that would form the foundation for further development. This past year, nursing at the National Institutes of Health (NIH) has again led the way by spearheading a cooperative initiative in this area. In the fall of 1997, 5 N I H institutes, including the National Institute for Nursing Research (NINR) and the NIH Office of Alternative Medicine, cooperated in a research work- shop about "Symptoms in Terminal Illness." An outcome of that meeting is a new program announcement at NIH called "Management of Symptoms at the End-of-Life." These programs and many more national and state initia- tives herald a wave of reform to end-of-life care that now constitutes one of the most significant health care movements in the United States today. In announcing the coalition, the honorary chairwoman o f RWJ's Last Acts Coalition, former first lady Rosalynn Carter, said, "People's greatest fears revolve around how they will live with illness until they die. We need this coalition so that fewer people will die alone, in pain and attached to machines, and with the result that more people and their loved ones can experience dying for what it ought to be--the last act in the journey of life. ''88 This reflection aptly captures the sentiment of many persons.
  • 18. I appreciate Christine Nelson, RN, MS, and Anne Rosenfeld, RN, PhD, for their editorial review and Marina Rios Da[ey for technical support. [] NURSING OUTLOOK JULY/AUGUST I999 165 Ethics Perspectives on End-ofilife Care Tilden R E F E R E N C E S 1. Brink S. The American way o f dying. US News World Report 1995;4(5):70. 2. Fein EB. Failing to discuss dying adds to pain of patient and family. The New York Times 1997 Mar 5;Sect. A: 1,14. 3. Horgan J. Seeking a better way to die. Scientific American 1997;276(5):100-5. 4. JaroffL. Knowing when to stop. Time 1995;Dec 4;76. 5. Gallup Organization. Knowledge and attitudes related to hospice care. Arlington (VA): National Hospice Organization; 1996. 6. SUPPORT Principal Investigators. A controlled trial to improve care for seriously hospitalized patients. JAMA 1995;274:1591- 8. 7. Field MJ, Cassel CK. Approaching death: improving care at the end
  • 19. of life. Washington (DC): Institute of Medicine Committee on Care at the End of Life, National Academy Press; 1997. 8. National Center for Health Statistics. 1993 national mortality followback survey. National Center for Health Statistics, Center for Disease Control and Prevention; 1998. URL: http://www.edc.gov/ nchswww/about, major/nmfi.html. 9. Lynn J. Unexpected returns: insights from SUPPORT. In: lsaacs S, Knickman JR, editors. To improve health and health care: the Robert Wood Johnson anthology. San Francisco (CA): Jossey- Bass Publishers; 1997. 10. Wolf SM, Boyle P, Callahan D, et al. Sources of concern about the patient self-determination act. N Engl J Med 1991 ;325:1666- 71. 11. Diamond EL, Jernigan JA, Moseley RA, Messina V, McKeown RA. Decision-making ability and advance directive preferences in nursing home patients and proxies. Gerontologist 1989;29:622- 6. 12. Morrison RS, Olson E, Mertz KR, Meier DE. The inaccessibility of advance directives on transfer from ambulatory to acute care settings. JAMA 1995;274:478-82. 13. Teno JM, Licks S, Lynn J, et al. Do advance directives provide
  • 20. instructions that direct care? J Am Geriatr Soc 1997;45:508-12. 14. Ott BB, Hardie TL. Readability of advance directive documents. Image J Nurs Sch 1997;29:53-7. 15. Nolan T, Bruder M. Patients' attitudes toward advance directives and end-of-life treatment decisions. Nurs Outlook 1997;45:204- 8. 16. Cohen-Mansfield J, Rabinovich BA, Lipson S, et al. The decision to execute a durable power of attorney for health care and prefer- ences regarding the utilization of life-sustaining treatments in nursing home residents. Arch Intern Med 1991;151:289-94. 17. Teno JM, Branco KJ, Mot V,, et al. Changes in advance care plan- ning in nursing homes before and after the Patient Self- Determination Act: report of a 10-state survey. J Am Geriatr Soc 1997;45:939-44. 18. Castle NG, Mot V. Advance care planning in nursing homes: pre- and post-Patient Self-Determination Act. Health Serv Res 1998; 33(1):101-24. 19. Kellogg FR, Ramos A. Code status decision-making in a nursing home population: processes and outcomes. J Am Geriatr Soc 1995;43:113-21. 20. Tolle SW, Tilden VP, Nelson CA, Dunn PM. A prospective
  • 21. study of the efficacy of the physician order form for life-sustaining treat- ment. J Am Geriatr Soc 1998;46:1097-102. 21. Caralis PV,, Davis B, Wright K, Marcial E. The influence ofethnicity and race on attitudes toward advance directives, life-prolonging treatments, and euthanasia. J Clin Ethics 1993;4:155-65. 22. McKinley ED, Garrett JM, Evans AT, Danis M. Differences in end- of-life decision making among black and white ambulatory cancer patients. J Gen Intern Med 1996;11:651-6. 23. Blackhall LJ, Murphy ST, Frank G, Michel V, Azen S. Ethnicity and attitudes toward patient autonomy. JAMA 1995;274:820-5. 24. Carrese JA, Rhodes LA. Western bioethics on the Navajo reserva- tion: benefit or harm? JAMA 1995;274:491-4. 25. Koenig BA, Gates-Williams J. Understanding cultural difference in caring for dying patients. West J Med 1995;163:244-9. 26. Tong KL. The Chinese palliative patient and family in North America: a cultural perspective. J Palliative Care 1994; 10:26-8. 27. Hare J, Pratt C, Nelson C. Agreement between patients and their self-selected surrogates on difficult medical decision. Arch Intern Med 1992;152:1049-53.
  • 22. 28. Libbus MK, Russell C. Congruence of decisions between patients and their potential surrogates about life-sustaining therapies. Image J Nurs Sch 1995;27:135-40. 29. Suhl J, Simons P, Reedy T, Garrick T. Myth of substituted judg- ment: surrogate decision making regarding life support is unreli- able. Arch Intern Med 1994;154:90-6. 30. Sulmasy DP, Hailer K, Terry PB. More talk, less paper: predicting the accuracy of substituted judgments. Am J Med 1994;96:432- 8. 31. Jacob DA. Family members' experiences with decision making for incompetent patients in the ICU: a qualitative study. Am J Crit Care 1998;7:30-6. 32. Kayser-Jones J. Decision making in the treatment o f acute illness in nursing homes: framing the decision problem, treatment plan, and outcome. Med Anthropol Q 1995;9:236-56. 33. Hiltunen EF, Medich C, Chase S, Person L, Forrow L. Family deci- sion making for end o f life treatment: the SUPPORT nurse narra- tives. J Clin Ethics. In press 1999. 34. Mezey M, Kluger M, Maislin G, Mittelman M. Life-
  • 23. sustaining treatment decisions by spouses of patients with Alzheimer's disease. J Am Geriatr Soc 1996;44:144-50. 35. Reckling JB, Who plays what role in decisions about witklholding and withdrawing life-sustaining treatment? J Clin Ethics 1997;8:39- 45. 36. Swigart V, Lidz C, Butterworth V, Arnold R. Letting go: family willingness to forgo life support. Heart Lung 1996;25:483-94. 37. Tilden VP, Tolle SW,, Garland MJ, Nelson CA. Decisions about life- sustaining treatment: impact of physicians' behaviors on the family. Arch Intern Med 1995;155:633-8. 38. Beland DK, Froman RD. Preliminary validation of a measure of life support preferences. Image J Nurs Sch 1995;27:307-10. 39. Hurley AC, Volicer L, Rempusheski VF, Fry ST. Reaching consensus: the process of recommending treatment decisions for Alzheimer's patients. Adv Nurs Sci 1995;18(2):33-43. 40. Pinch WJ, Miya PA, Boardman KK, Andrews A, Barr P. Implementation of the Patient Self-Determination Act: a survey of Nebraska hospitals. Res Nurs Health 1995; 18:59-66. 41. Idemoto BK, Daly BJ, Eger DL, Lombardo BA, Matthews T, Morris M, et al. Implementing the Patient Self-Determination Act.
  • 24. Am J Nurs 1993;93:20-5. 42. Johns JL. Advance directives and opportunities for nurses. Image J Nurs Sch 1996;28:149-53. 43. Murphy PA. The nurse's role in end-of-life decisions. J Burn Care Rehabil 1994;15:84-5. 44. Oddi LF, Cassidy VR. The message of SUPPORT: change is long overdue. J ProfNurs 1998;14:165-74. 45. Pinch WJ, Parsons ME. The Patient Self-Determination Act: the ethical dimensions. Nurse Pract Forum 1992;3:16-22. 46. Weber G, Kjervik DK. The Patient Self-Determination Act-- the nurse's proactive role. J prof Nurs 1992;8:6. 47. Baggs JG, Schmitt MH. Intensive care decisions about level of aggressiveness of care. Res Nurs Health 1995;18:345-55. 48. Solomon MZ, O'Donnell L, Jennings B, et al. Decisions near the end of life: professional views on life-sustaining treatments. Am J Public Health 1993,83:14-25. 49. Taylor C. Medical futility and nursing. Image J Nurs Sch 1995;27:301-6. 50. Schneiderman LJ, Jecker NS, Jonsen AR. Medical futility:
  • 25. its meaning and ethical implications. Ann Intern Med I990;112:949-53. 51. Quill T, Dresser R, Brock DW. The rule of double effect--a critique of its role in end-of-life decision making. N Engl J Med 1997;337:1768-71. 52. Applebaum GE, King JE, Finucane TE. The outcome of CPR initi- ated in nursing homes. J Am Geriatr Soc 1990;38:197-200. 53. Awoke S, Mouton CP, Parrott M. Outcomes of skilled cardiopul- monary resuscitation in a long-term-care facility: futile therapy? Am J Public Health 1992;40:593-5. 1 6 6 VOLUME 47 ° NUMBER 4 NURSING OUTLOOK 54. Tresch DD, Neahring JM, Duthie EH, Mark DH, Kartes SK, Aufderheide TP. Outcomes o f cardiopulmonary resuscitation in nursing homes: can we predict who will benefit? Am J Med 1993;95:123-30. 55. FitzGerald JD, Wenger NS, Califf RM, et al. Functional status among survivors of in-hospital cardiopulmonary resuscitation. Arch Intern Med 1997;157:72-6. '56. Murphy DJ, Burrows D, Santilli S, et al. The influence of the prob- ability of survival on patients' preferences regarding cardiopul- monary resuscitation. N Engl J Med 1994;330:545-9.
  • 26. 57. Prendergast TJ, Luce JM. Increasing incidence of withholding and withdrawal of life support from the critically ill. Am J Respir Crit Care Med 1997;155:15-20. 158. Jezewski MA. Do-not-resuscitate status: conflict and culture brokering in critical care units. Heart Lung 1994;23:458-465. 59. Jezewski MA. Obtaining consent for do-not-resuscitate status: advice from experienced nurses. Nurs Outlook 1996;44:114-8. 60. Puopolo AL, Kennard MJ, Mallatratt L, Follen MA, et al. Preferences for cardiopulmonary resuscitation. Image J Nurs Sch 1997;29:229-34. 61. Council on Scientific Affairs, American Medical Association Good care of the dying patient. JAMA 1996;275:474-8. 62. American Nurses Association. Position statement on promotion of comfort and relief of pain in dying patients. Washington (DC): The American Nurses Association; 1991. 63. Brody H, Campbell MD, Faber-Langendoen K, Ogle KS. Withdrawing intensive life-sustaining treatment--recommenda- tions for compassionate clinical management. N Engl J Med 1997;336:652-7. 64. Buchan ML, Tolle SW. Pain relief for dying persons: dealing with
  • 27. physicians' fears and concerns. J Clin Ethics 1995;6:53-61. 65. Ward SE, Berry PE, Misiewicz H. Concerns about analgesics among patients and family caregivers in a hospice setting. Res Nuts Health 1996;19:205-11. 66. Coyle N. The euthanasia and physician-assisted suicide debate: issues for nursing. Oncol Nurs Forum 1992;19(7):41-6. 67. Daly BJ, Berry D, Fitzpatrick JJ, et al. Assisted suicide: implications for nurses and nursing. Nurs Outlook 1997;45:209-14. 68. Davis AJ, Phillips L, Drought TS, et ai. Nurses' attitudes toward active euthanasia. Nurs Outlook 1995 ;43:174-9. 69. Davis AJ, Slater PV. U.S. and Australian nurses' attitudes and beliefs about the good death. J Nurs Sch 1989;21(1):34-9. 70. Richardson DS. Oncology nurses' attitudes toward the legalization of voluntary active euthanasia. Cancer Nurs 1994; 17:348-54. Tilden 71. Scanlon C, Rushton CH. Assisted suicide: clinical realities and ethical challenges. Am J Crit Care 1996;5:397-405. 72. Tilden VP, Tolle SW, Lee MA, Nelson CA. Oregon's physician-
  • 28. assisted suicide vote: it's effect on palliative care. Nurs Outlook 1996;44:80-3. 73. Tilden VP, Lee MA. Oregon's physician-assisted suicide legislation: troubling issues for families. J Faro Nuts 1997;3:120-9. 74. Volker DL. Assisted suicide and the terminally i11: is there a right to self-determination? J Nurs Law 1995;2(4):37-48. 75. Young A, Volker DL, Rieger PT, Thorpe DM. Oncology nurses' attitudes regarding voluntary, physician-assisted dying for compe- tent, terminally ill patients. Oncol Nurs Forum 1994;20:445-51. 76. Cher DJ, Leuert LA. Method of Medicare reimbursement and the rate of potentially ineffective care of critically ill patients. JAMA 1997;278:1001-7. 77. Emanuel EJ. Cost savings at the end of life: what do the data show? JAMA 1996;275:1907-14. 78. Covinsky KE, Goldman L, Cook EF, et al. The impact of serious illness on the patients' families. JAMA 1994;272:1839-44. 79. Covinsky KE, Landefeld CS, Teno J, et al. Is economic hardship on the families of the seriously ill associated with patient and surrogate care preferences? Arch Intern Med 1996; 156:1558-64.
  • 29. 80. Community-State Partnerships to Improve End-of-Life Care. The Robert Wood Johnson Foundation. State initiatives in end-of- life care: using qualitative and quantitative data to shape policy change; focus: Oregon. Kansas City (MO): Midwest Bioethics Center; 1998. 81. To!le SW. Care of the dying: clinical and financial lessons from the Oregon experience. Ann Intern Med 1998;128:567-8. 82. Lee MA, Tolle SW. Oregon's assisted suicide vote: the silver lining. Ann Intern Med 1996;124:267-9. 83. Lee MA, Nelson HD, Tilden VP, Ganzini L, Schmidt TA, Tolle SW. Legalizing assisted suicide--views of physicians in Oregon. N Engl J Med 1996;334:310-5. 84. Oregon Center for Health Statistics. Mortality profile, vital statis- tics, 1995. Portland (OR): Oregon Health Division; 1997. 85. Wennberg JE, Cooper MM, editors. The Dartmouth atlas of health care 1998. Chicago (IL): American Hospital Publishing; 1998. 86. Hanson LC, TulskyJA, Danis M. Can clinical interventions change care at the end of life? Ann Intern Med 1997;126:381-8.
  • 30. 87. American Health Decisions. The quest to die with dignity. Atlanta (GA): Office of the Executive Director, Georgia Health Decisions; 1997. 88. The Robert Wood Johnson Foundation. Advances. Issue 2. Princeton (NJ): The Foundation; 1997. M I S S I O N STATEMENT Nursing Outlook, the official journal o f the American Academy of Nursing, provides critical and timely anal- yses o f emerging professional and health care issues o f importance to all nurses. The primarily editorial goals o f the Journal are to: 1. Publish innovative, original articles that stimulate thoughtful discussion and scholarly debate and policy implications among nurses and other health care professionals. 2. Inform readers about the diversity o f opinion on controversial professional and health care and health policy matters affecting nursing and the health o f the public. 3. Provide a multidisciplinary forum for the dissemination o f information derived from the synthesis o f extant knowledge o f current and future clinical practice and health policy alternatives. 4. Disseminate information about creative, alternative, and fox'ward-looking models o f education and clin- ical practice as they relate to changing systems o f health care. 5. Promote the synthesis and use o f scientific knowledge in a timely fashion by nurses and other health care professionals to enhance the quality and efficiency o f health care.
  • 31. 6. Provide information about leadership and leadership development opportunities for nurses, including professional meetings, hearings, forums, fellowships, and internships. 7. Provide the American Academy o f Nursing with a medium for communicating important policy issues and organizational activities. 8. Increase critical awareness o f technologies, products, and services that have the potential for increasing the effectiveness o f nurses in all settings. NURSING OUTLOOK JULY/AUGUST 1999 167 What is a Literature Review? A literature review is a critical consideration of the current information available about a subject matter. The author of a literature review does not create a new primary source, but, instead, the author summarizes and analyzes existing primary sources to create a valuable secondary source that evaluates current, published theoretical, methodological, and experimental work in the field of the subject matter. Unlike a research paper, free- standing (not part of a larger paper) literature reviews do not seek to make a new argument; instead, a literature review synthesizes the arguments of other authors and collects a broad base of knowledge about a subject matter. Often a literature review is the initial step of the research process of a thesis or other weighty research project, used to create the proposal, guide the writing, and provide evidence- based support for the findings of the writing. Also, the literature review provides the writing with a context within the subject matter for readers, equipping readers with the necessary
  • 32. knowledge regarding the subject matter so that they may correctly interpret the writing. What are the learning advantages of a literature review? From an instructional perspective, the learning advantages of assigning a literature review are numerous. Literature reviews encourage students to compare and contrast different authors’ arguments, methodology, writing styles, and conclusions about a particular subject matter. Furthermore, students are encouraged to evaluate sources, granting them insight into what characteristics make up a quality resource. By amassing a large number of resources about a single topic, literature reviews promote in-depth learning about that topic through a student- guided process. Though literature reviews often function as an early step in the process of writing research papers, literature reviews are also great for building academic writing skills in students. From a student perspective, the writing tools developed by creating a literature review are also manifold. The critical skills built by comparing and contrasting how different authors research and present information reinforce students’ own abilities to research and present information. The process of determining which sources to use guides students to Identify and use high-quality resources. Literature reviews allow students to select their own sources, building their decision-making process as well as their interest in the subject matter as they are the materials selectors. Considering that literature reviews are excellent starting points for all research assignments, even if only being conducted as informal notes for the writer, learning how to create a formal literature review will only improve future writings. What are the basic components of a literature review? Researching a literature review Literature reviews have several steps involved in the composition process. First, writers must select a topic and the scope of that topic: how many sources should be included in the literature review? How much information must be included from
  • 33. each source? What aspects of the topic will be discussed? Will any aspects of the topic be ignored or only discussed to a lesser extent, and why? These questions and others that help writers discover limiters that clarify and focus their subject matter guide the further steps. Depending on the scope of the literature review, the largest section of researching the literature review is often locating the sources necessary to write the review. Authors should always use resources that meet the quality standards of their given fields; usually, these standards include only using scholarly, peer-reviewed primary sources. Several strategies exist for finding these resources including: searching databases for relevant scholarly publications, browsing subject-specific databases for the most field-specific resources, using references pages or indexing resources to find further information, and searching library catalogs for print and digital holdings among many other search strategies. Use the limiters determined during the initial scope-determining process to enhance the search, reducing the time and effort necessary to complete this process. In addition to merely gathering and organizing the writings to discuss in the literature review, authors must summarize the information contained in the resources within the context of the scope of the literature review. Authors also must critically consider the resources and provide scholarly feedback of the value of the resources within the subject matter of the literature review. Writing a literature review Often, much of the language of the introduction of the literature review can be gathered during the initial step of the process. The written introduction will include an overview of the topic, its relevance in the given field, and the purpose for composing the literature review. This section may also define key terms that appear within the body of the paper, especially if the paper includes technical language that may obfuscate the author’s ability to communicate effectively with the given audience. Writing the body of the literature review requires thought into
  • 34. what organizational structure will best support the topic’s focus, such as in chronological order of publication, more broad subject matter to more specifically focused writings, different schools of thought about the same subject, or different theories addressing the given topic, among others. A large degree of comparing and contrasting the resources occurs at this level of the writing; the differences observed when contrasting the resources can sometimes suggest an organizational strategy. Beyond organization, authors must also decide the level of analysis to use in their literature reviews. Bloom’s Taxonomy helps guide writers about how to consider and express information to communicate different levels of thinking about a topic. Yet another important consideration at this step of the writing process is to consider how to provide in-text citations, a references page, and format the paper—the key tool for this consideration is the style guide that is prescribed for the assignment. The literature review is not complete without a conclusion, results, or findings section that ties together the considerations of the author about the resources within the scope of the study. The research should be presented in such a way that the literature advances the knowledge of readers and the concluding section should summarize what information readers will have attained from reading the paper. This section serves as a final evaluation of the resources in a clear and concise manner for readers. Key Terms of Literature Review Discussion of literature reviews and the writing process can lead to confusion if students are unfamiliar with the key terms of researching. The following are some of the key terms that may require clear definition to ensure that students can successfully interpret assignment guidelines. Evidence-based support: Defense of an argument with a foundation in other scholarly sources that reinforce the argument; outside sources valued in the relevant subject field that confirm the statement
  • 35. Critical consideration: Writers of literature reviews only use scholarly (peer-reviewed) sources to analyze a subject matter and evaluate Limiters: Specific search criteria, such as a date range, full-text only, or publication titles, that limit the search to exclude data that does not fit within the criteria Primary source: Original research about a subject matter composed by the scholar(s) participating in the process; historical artifacts or documents, scholarly research, and recordings of events are all examples of primary sources Secondary source: Any composition for which the basis of the creation is a primary source and does not involve new information beyond analysis, synthesis, and/or evaluation of existing sources NOTE: The Literature Review information was provided by WCU Anaheim librarian, Bethany Firch.