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Opinions of Elderly Individuals Towards Advanced Directives and Advanced Care Planning
HANNAH BYERS
UNIVERSITY OF GEORGIA HPRB 5410W
MARCH 2, 2017
OPINIONS OF THE ELDERLY TOWARDS ADVANCED DIRECTIVES AND ADVANCED CARE PLANNING
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Opinions of Elderly Individuals Towards Advanced Directives and
Advanced Care Planning
Research Question
What is elderly individuals’ opinion and attitudes towards Advanced Directives and
Advanced Care Planning?
Abstract
The growing elderly population calls for a need in more knowledge of all aspects in the
field of gerontology. The rising increase in the aging population will result in more medical
decisions being made at the end of individuals’ lives. To help health professionals deal with this
trend, it is necessary to understand elderly individuals’ opinions about Advanced Directives (AD)
and Advanced Care Planning(ACP). To better understand their attitudes, a review of literature
was conducted through the UGA library’s multisearch tool bar to examine studies regarding the
topic. After analyzing 10 separates studies regarding elderly individuals’ opinions and the
perception of the elderly population’s feelings results varied widely, but showed a trend
towards a negative opinion. The results showed that some sample populations had negative
feelings towards AD and ACP whether they felt planning for the future was important or not,
and some had a positive attitude towards participating in acquiring an AD and participating in
ACP, but the perception of their opinions was majority a negative attitude. The limitations of
the literature review were only to research 10 articles and because few studies have been
conducted the results can be restricting when attempting to generalize the evidence. Because
of the limitations on literature, there is a call for new implications within the field of aging. A
OPINIONS OF THE ELDERLY TOWARDS ADVANCED DIRECTIVES AND ADVANCED CARE PLANNING
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positive step would be conducting more invasive and broader research in the field to provide
more knowledge for future health professionals. The increase in knowledge and research
regarding elderly individuals’ attitudes towards Advanced Directives and Advanced Care
Planning can potentially help in assisting with the rising aging population.
OPINIONS OF THE ELDERLY TOWARDS ADVANCED DIRECTIVES AND ADVANCED CARE PLANNING
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Table of Contents
Introduction 5
Methods 6
Figure 1: Methods of Selecting Literature 8
Table 1: List of Search Terms 8
Results 9
A positive opinion towards AD and ACP 10
Agreed importance of planning but no need for AD 10
No prior knowledge of AD and ACP and reluctant after learning 11
No clear best approach to AD and ACP 11
Perceptions elderly individuals’ opinions through the eyes of others 12
Table 2: Articles Reviewed in Literature Review 13
Discussion 19
Overarching Findings 19
Current Research 19
Limitations 20
Implications for the Future 21
Conclusion 22
References 23
OPINIONS OF THE ELDERLY TOWARDS ADVANCED DIRECTIVES AND ADVANCED CARE PLANNING
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Introduction
An elderly individual or senior citizen is commonly referred to someone over the age of
65 years old. The worldwide senior citizen population is around 8% and a staggering 14.5% in
the United States. In the coming years that number is predicted to rise to 17% worldwide and
over 21% in the United States by 2050 (Administration on Aging, 2016; Cire, 2016). Elderly
populations of all demographics, ethnicities, race, and gender are expected to rise partly
resulting from the baby boomer generation. As the aging population grows, the life expectancy
will likely rise as well, bringing on a need for more care and funding to help support the elderly
(Hogan, Ortman, Velkoff, & 2014). The differences of opinions and outlooks is important to be
considered regarding risk factors and medical care for individuals in this age range. A difference
in perceptions is common from one culture to another as well.
As individuals grow older they are faced with many decisions regarding medical care and
treatment during end stages of their life. A common practice among elderly individuals and
their loved ones is to participate in Advanced Care Planning (ACP). ACP helps elderly individuals
to discuss their wishes and preferences regarding end of life care and decisions (NIA, 2016). A
tool commonly used in assisting with ACP is an Advanced Directive. An Advanced Directive (AD)
is a legal document outlining your instructions and wishes regarding medical care for end of life
scenarios such as dementia, terminal illnesses, or coma. Medical Advanced Directives
commonly include a proxy or power of attorney, someone whom ensures the individual’s
wishes regarding medical care are followed through or certain unmade decisions can be made if
the individual is no longer able to. These instructions are familiar among elderly individuals but
an option for anyone over the age of 18 (Staff, 2014).
OPINIONS OF THE ELDERLY TOWARDS ADVANCED DIRECTIVES AND ADVANCED CARE PLANNING
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The growing population of elderly individuals will likely correlate to a rise in the amount
of participation among ACP and Advanced Directives as well as information regarding the
purpose and process to obtain an Advanced Directive. There is not a substantial amount of
information on the subject because the large rise in the elderly population is currently
beginning. There has been little research directly on the opinions surrounding AD, meaning
there is limited knowledge for individuals seeking to make AD possible for elderly individuals.
Research done thus far has been reviewing the prevalence of Advanced Directives among
different elderly populations. The current research explains the different barriers and gaps
among elderly individuals from acquiring an AD as lack of knowledge, denial, confusion, and
cultural differences(Benson & Aldrich, 2012). No current accessible research directly displays
the opinions of the elderly regarding these topics.
The aim of this review is to analyze the current opinions held by elderly individuals
regarding the topic of Advanced Directives and Advanced Care to help better understand future
attitudes of the growing elderly population. By analyzing opinions and attitudes towards AD
more knowledge will be gained for health professionals on how to conduct and approach
individuals on discussing Advanced Directives.
Methods
The multi search tool on the UGA library website was used to find scholarly articles and
studies. The different databases found within the multi search tool included Advanced
Placement Source, PsycINFO, Alt HealthWatch, and Abstracts in Social Gerontology. Before
reading analyzing any literature the results were limited to being only being a scholarly peer
reviewed article or journal that has been published since 2007. These limitations ensure the
OPINIONS OF THE ELDERLY TOWARDS ADVANCED DIRECTIVES AND ADVANCED CARE PLANNING
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information is creditable because it has been reviewed by scholars and experts in the field. By
limiting articles that have been published within the last ten years ensure the most relevant
literature will only be reviewed to help avoid possibilities of invalidity.
When beginning the search for literature the original search terms were “elderly
individuals” AND “advanced directives” to only show 1 result. The next search was expanded
and the search terms used were “elderly” AND “advanced directives” but the results were too
broad and producing 467 articles. The third search terms were specified to the topic on
opinions; the third search termed used were “elderly” AND “advanced directives” AND opinion
causing the results to then be too narrow, producing 17 results. The next search terms were
modified to use a synonym to opinion; the fourth search terms were “elderly” AND “advanced
directives” AND attitude to produce 118 results. After reviewing the articles, the term
Advanced Care Planning was commonly used alongside Advanced Directive. To account for the
additional language used the final search terms used were “elderly” AND (“advanced
directives” OR “advanced care planning”) AND attitude to produce 133 results and 52 final
results once duplicates were removed. Figure 1 below displays the method when selecting
appropriate articles for the literature review and Table 1 below displays the search terms used
and results produced from each.
OPINIONS OF THE ELDERLY TOWARDS ADVANCED DIRECTIVES AND ADVANCED CARE PLANNING
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Figure 1: Method of Selecting Literature
Table 1: List of Search Terms
Order of Search Search Terms Used Results
1- Too narrow “elderly individuals” AND
“advanced directives”
1
2- Too broad and
nonspecific
“elderly” AND “advanced
directives”
467
Records identified through data base search (n=133)
Records removed after duplicates removed (n=52)
Records screened through titles and abstracts (n=52)
•records excluded due to being an editorial or literature review (n=2)
•records excluded due to not being available in English (n=2)
•records exlcuded due to not being relevant- incorrect population, not detailing opinions/attitudes, not pertaining to AD and ACP (n=18)
Records screened through full text (n=30)
•Records excluded after reading full text due to incorrect populatioin, did not examine opinions/atitudes/perceptions, did not specify AD and ACP to be examined in the study
Records eligible and included in literature review (n=10)
OPINIONS OF THE ELDERLY TOWARDS ADVANCED DIRECTIVES AND ADVANCED CARE PLANNING
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3- Too narrow “elderly” AND “advanced
directives” AND opinion
17
4- Too narrow and too
specific
“elderly” AND “advanced
directives” AND attitude
118
5- Final search “elderly” AND (“advanced
directives” OR “advanced
care planning”) AND attitude
133
While reading and analyzing each article or journal the only restrictions was to only
include articles on individuals considered elderly depending upon the criteria in each country
the research was conducted and published and for the study to include information on attitude
of AD and ACP. The most common age restriction of elderly individual is those above the age of
65. There was no exclusion regarding ethnicity, gender, race, religion, or geographical location.
The primary focus was to include articles that presented information found from conducting
some form of interviews, surveys, questionnaires, or assessments. The studies could be the
opinions and attitudes of elderly individuals directly from their perception, or the recorded
opinions could be from their own perception or the perception of their attitudes and opinions
from the view of clinicians, staff, or family members.
Results
The literature showed varied trends among the opinion of elderly individuals regarding
Advanced Directives. There was no clear trend in determining a reasoning for the differences in
opinions. The 10 separate articles presented five overarching themes with majority of the
OPINIONS OF THE ELDERLY TOWARDS ADVANCED DIRECTIVES AND ADVANCED CARE PLANNING
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findings showing a negative attitude. Table 2 below shows an at-glance-view of the articles
reviewed.
A positive opinion towards AD and ACP
While researching two articles showed that elderly individuals have a positive opinion
regarding participating in Advanced Directives for themselves among a population that had
limited prior knowledge of the topic. A study conducted on elderly Egyptian nursing home
patients found that 122 of the 137 participants had a positive attitude towards acquiring an
Advanced Directive, but had little to no prior knowledge on AD beforehand (Amer, Khater,
Elawam, & Mohammed, 2015). In Canada, a team of nurses helped conduct a questionnaire
among elderly individuals that visited an emergency department during a 6-month span. The
study found of the 280 participants only 35% of individuals had any prior knowledge of
advanced directives, but once information was given 67.9% had positive attitudes towards
obtaining Advanced Directives (Gill, Fukushima, Abu-Laban, & Sweet, 2012).
Agreed importance of planning but no need for AD
A second overarching finding from the literature is that elderly individuals agreed with
the notion of planning and discussing medical decisions with family and doctors, but felt
acquiring an Advanced Directive was unnecessary. A qualitative study was conducted among 15
Malaysians individuals over the age of 65 to analyze their opinions on AD. All participants
agreed that planning for future medical decisions is important but unnecessary to participate in
an Advanced Directive (Htut, Shahrul, & Poi, 2007). A separate qualitative study was conducted
on 43 individuals, nursing home residents and their relatives, regarding their opinions of AD.
The residents participating in the study felt it was also important to plan and discuss their
OPINIONS OF THE ELDERLY TOWARDS ADVANCED DIRECTIVES AND ADVANCED CARE PLANNING
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future medical wishes but not necessary to obtain an Advanced Directive (Bollig, Gjengedal, &
Rosland, 2016).
No prior knowledge of AD and ACP and reluctant after learning
Another overarching finding was evidence from articles showing that for some instances
elderly individuals had no prior knowledge on advanced directives and were reluctant after
learning about AD. A survey was conducted to gain insight on elderly individuals’ opinions on
ACP and AD. A group of 13 different general practices sent out surveys and received
participation from 1823 individuals over the age of 65. The results showed that only one-third
of individuals were willing to discuss ACP and AD and 17% had already participated in some
form of ACP and AD (Musa, Seymour, Narayanasamy, Wada, & Conroy, 2015). A separate cross
sectional study was conducted on 467 nursing home residents in Wuhan, China to examine
their attitudes toward Advanced Directives. The nursing home residents’ opinions showed that
95% had no prior knowledge on AD and after gaining information on AD only one-third had
positive attitudes towards gaining an Advanced Directive (Ni et al., 2014).
No clear best approach to AD and ACP
A separate study was conducted to learn about the readiness and attitudes towards five
separate approaches of presenting Advanced Care Planning and Advanced Directives. The
qualitative study found that among frail individuals, the definition of elderly in this geographic
location, in China the attitudes were varied. Participants were interviewed regarding their
readiness towards participating in ACP and AD with five different models to approach ACP an
AD. The results showed there was no clear trend or percentages determined regarding their
opinion or readiness for any of the five approaches (Chan & Pang, 2011).
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Perceptions elderly individuals’ opinions through the eyes of others
The fifth overarching finding from the literature is that the perception of elderly
individuals’ opinion through the eyes of others tends to be negative. One study conducted in
London interviewed the staff of a care home and the families of the patients in the home. All
participants were asked how they perceived the elderly residents’ attitudes towards AD and
ACP. The results showed that all patients appeared to the staff and families as being reluctant
to discuss and consider an Advanced Directive (Stewart, Goddard, Schiff, & Hall, 2011). A
separate study was conducted recording the experiences of 77 clinicians discussing Advanced
Care Planning and Advanced Directives. The questionnaire results showed that only 49% of the
clinicians’ patients were willing to discuss or consider ACP and AD (Luk et al., 2015). A third
study was administered in a Jerusalem nursing home on 207 staff members. Each survey
included questions regarding their experiences of discussing any form of end of life decisions
through Advanced Care Planning or Advanced Directives with the nursing home residents. The
survey showed that more than 90% of residents had not discussed or participated in any form
of ACP or AD as reported by the staff members (Shaulov, Frankel, Rubinow, Maaravi, & Brezis,
2015).
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Table 2: Articles Reviewed in Literature Review
Author(s) Year Article Title and Journal
Purpose of Article
Sample Info Type of Research
Research Findings
Limitations of Research
1 Amer, Moatassem Khater, Mohamed Elawam, Amal Mohammed, Shaimaa
2015 Attitudes of elderly egyptian nursing homes residents towards advance directives. Lack of knowledge but positive attitudes Ageing International
The aim was to examine the attitudes of elderly Egyptians towards advanced directives
137 elderly Egyptians over the age of 60
Cross-Sectional Study
81.1% found interest in AD and a majority had no prior knowledge
The sample was confined to only an elderly home in Cairo and societies vary among areas of Egypt so it so difficult to generalize.
OPINIONS OF THE ELDERLY TOWARDS ADVANCED DIRECTIVES AND ADVANCED CARE PLANNING
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2 Bollig, Georg Gjengedal, Eva Rosland, Jan Henrik
2016 They know!—Do they? A qualitative study of residents and relatives views on advance care planning, end-of-life care, and decision-making in nursing homes Palliative Medicine
The purpose was to study the views of residents and their relatives on ACP and end of life decisions
25 nursing home relatives and 18 relatives
Qualitative Study
Residents felt they trusted their relatives and had not participated in ACP even though they felt end of life decisions is important.
The sample size was relatively small meaning there is room for error or inability to generalize evidence found.
3 Chan, Helen Y. L. Pang, Samantha M. C.
2011 Readiness of chinese frail old age home residents towards end-of-life care decision making Journal of Clinical Medicine
The aim was to evaluate the process of ACP and readiness among participants to participate.
42 participants between ages 66-94
Qualitative Study through semi-structured interviews
Regardless of approach the opinion on ACP and AD varied among each individual
The participants were purposefully recruited making it difficult to generalize for entire population. The sample size was small.
4 Gill, Ginjeet Gina K. Fukushima, Erin
2012 Prevalence of advance directives among elderly
The purpose was the examine the prevalence of
280 individuals over the age of 70
Prospective Study
Only 19.3% participants had an AD, 35% had
The participants were of different
OPINIONS OF THE ELDERLY TOWARDS ADVANCED DIRECTIVES AND ADVANCED CARE PLANNING
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Abu-Laban, Riyad B. Sweet, David D.
patients attending an urban canadian emergency department CJEM: Canadian Journal of Emergency Medicine
advanced directives among elderly individuals visiting emergency departments in Canada
some prior knowledge on AD, and after learning information 50.7% were interested
cognitive and emotional levels due to process of seeking out sample making results somewhat skewed
5 Htut, Y. Shahrul, K. Poi, P. J. H.
2007 The views of older malaysians on advanced directive and advanced care planning: A qualitative study Asia-Pacific Journal of Public Health
The aim was to examine the views of elderly Malaysians on ACP and AD
15 individuals between ages 65 to 83
Qualitative Study through in-depth interviews
Most participants had no prior knowledge on ACP and AD and felt they were unnecessary even though they felt it was important making their decisions known
The sample size was too small to properly generalize.
6 Luk, Yan Ngai, Cheong Chau, Shi San Lam, Ming Yin Alison Wong, On Wai
2015 Clinicians' experience with and attitudes toward discussing advance
The purpose of the study was to explore health care professionals’
77 clinicians working at University of Hong Kong
Cross-Sectional questionnaire survey
Clinicians had experiences with discussing AD with on
The sample size and recruitment was limited to a only one hospital.
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Holm, Marianne
directives with terminally ill patients and their families in a chinese community Journal of Palliative Medicine
experiences with elderly and terminally ill patients
49% of patients
Because the study was conducted through interviews there is risk of bias in recalling and disclosing information.
7 Musa, Irfana Seymour, Jane Narayanasamy, Melanie Jay Wada, Taizo Conroy, Simon
2015 A survey of older peoples' attitudes towards advance care planning Age and Ageing
The aim was to examine the opinions of elderly people in East Midlands towards ACP
1823 elderly individuals responding to the questionnaire
Questionnaire survey
17% of individuals had previously participated in some form of ACP and AD and 1/3 of all participants were willing to discuss
5375 questionnaires were sent out but only a limited number responded so it is unknown how the information would have changed if all responded
8 Ni, Ping Zhou, Jing Wang, Zhao Xi Nie, Rong Phillips, Jane Mao, Jing
2014 Advance directive and end-of-life care preferences among nursing home residents in wuhan, china:
The purpose was to determine the knowledge of AD among elderly Chinese
467 cognitively able nursing home residents in Wuhan, China
Population-bases Cross-sectional Survey
95% of residents had no prior knowledge on AD and once learning about AD
The sample were limited to nursing homes in one location in China making it difficult to generalize for
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A cross-sectional study Journal of American Medical Directors Association
nursing home residents
1/3 were interested and had positive feelings towards them
the entire population.
9 Shaulov, Adir Frankel, Meir Rubinow, Alan Maaravi, Yoram Brezis, Mayer
2015 Preparedness for end of life-a survey of jerusalem district nursing homes Journal of American Geriatrics Society
The aim was to evaluate the quality of end of life care among elderly in a Jerusalem district nursing home
207 staff members of Jerusalem district nursing homes
Qualitative Study through semi-structured interviews
Staff members reported over 90% of residents had no known form of EOL care (an AD or participated in ACP)
The information was self reported and sample was limited to samples from nursing homes in Jerusalem area so difficult to generalize.
10 Stewart, F. Goddard, C. Schiff, R. Hall, S.
2011 Advanced care planning in care homes for older people: a qualitative study of the views of care staff and families Age and Ageing
The aim was to examine the views of ACP and AD through the eyes of staff and families in elderly care homes
80 willing participants- staff, nurses, and family members
Individual semi-structured interviews
The staff and relatives of the elderly people in these care homes perceived the elderly to be reluctant
Only a percentage of each group was willing to participate leaving a gap in possible information and causing a small sample size
OPINIONS OF THE ELDERLY TOWARDS ADVANCED DIRECTIVES AND ADVANCED CARE PLANNING
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towards participating in AD and ACP
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Discussion
The attitude among elderly individuals on Advanced Care Planning, particularly
Advanced Directives, is important to help predict trends among the rising elderly population.
Acquiring knowledge regarding the attitudes among elderly individuals can help health
professionals modify and learn new techniques to discussing Advanced Directives and
Advanced Care Planning with the increasing elderly population.
Overarching Findings
The main theme among the articles are that the trends of positive attitudes and
negative attitudes on AD vary across the world and populations. Throughout the literature, it
becomes more evident that negative opinions are most common. It was presented in two
studies that elderly individuals have a positive attitude towards obtaining an AD (Amer et al.,
2015; Gill et al., 2012). Another two studies showed that negative attitudes are predominantly
expressed by the elderly population (Musa et al., 2015; Ni et al., 2014). Additional studies
showed that in some instances individuals had positive opinions towards the idea of planning
and discussing medical decisions, but felt that an AD was unnecessary (Bollig et al., 2016; Htut
et al., 2007). The overarching finding that elderly individuals have a negative opinion of
Advanced Directives and Advanced Care Planning is reinforced by studies conducted to better
understand the perception of their opinions and attitudes through the view of clinicians,
relatives, and medical staff (Luk et al., 2015; Shaulov et al., 2015; Stewart et al., 2011).
Current Research
The only current research analyzing the trends among prevalence of Advanced
Directives and Advanced Care Planning helps reinforce the evidence from some of the
OPINIONS OF THE ELDERLY TOWARDS ADVANCED DIRECTIVES AND ADVANCED CARE PLANNING
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overarching findings. A brief published by the CDC showed that among the overall elderly
population less than 50% have an Advanced Directive or participated in Advanced Care
Planning. The different sub samples of the elderly population established in the brief also shows
trend of less than a majority having an Advanced Directive (Benson & Aldrich, 2012). It can be
proposed that the attitudes of the elderly may correlate to the low prevalence of AD among the
population. These trends are common with seven of the articles reviewed showing majority of
elderly individuals have a negative attitude towards obtaining Advanced Directive and
participating in Advanced Care Planning. The brief also outlines barriers as being lack of
knowledge and awareness (Benson & Aldrich, 2012). The articles in the review shows evidence
that many of the participants in each study were also faced with the barrier of not having prior
knowledge on AD and ACP. The amount of current research is very limited and nonspecific to
the topic of elderly opinions. Because of the limited about of research done there is a need for
more to be conducted to help generalize and learn for the entire aging population worldwide.
Limitations
The limitations of the literature review were numerous mainly due to the topic. The
literature reviewed was limited to 10 articles. A relatively low number of articles implies that
limited interpretations can be made making it difficult to achieve an overall idea from the
evidence presented. The topic of aging individuals is broad and there is a strong possibility of
more literature being present in the professional world. It is also difficult to ensure information
is most accurate due to the timing of the literature review research. Some literature is currently
being researched and articles are still in the process of being published and reviewed. The gap
in time can possibly contain research discrediting studies or providing new information.
OPINIONS OF THE ELDERLY TOWARDS ADVANCED DIRECTIVES AND ADVANCED CARE PLANNING
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Because the topic and aging population is so broad if it difficult to generalize for the differences
in gender, age, culture, and ethnicities. Because few studies have been conducted in one
location or on a subset of the aging population multiple times it is challenging to interpret ideas
for these subset populations. The main limitation among research is the limited amount of
studies conducted on the topic. The elderly population is currently growing therefore there has
not been prior emphasize on research in that area.
Implications for the Future
A positive response to the current literature and limitations is that more research needs
to be conducted in the field of gerontology. The rising elderly population will result in an
increase in the need of more forms of research in the field. The most effective modification in
research would be to conduct more studies and duplicating current studied to verify the
validity. By ensuring information gathered through studies is accurate it allows for evidence to
assist in the bigger, overarching ideas and themes. When conducting more studies, it is
important for researches to ensure a large sample size among participants to avoid bias. Few of
the articles discussed throughout the literature review have a small sample size causing
questions regarding the legitimacy of the results when used to compare across an entire
population. The current research is predominantly being conducted in some form of care home
or through clinicians’ office. It would be beneficial to expand areas and residencies of
participants for future studies to help ensure the results properly reflect many geographical
locations.
OPINIONS OF THE ELDERLY TOWARDS ADVANCED DIRECTIVES AND ADVANCED CARE PLANNING
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Conclusion
The importance of knowing elderly individuals’ opinions on Advanced Care Planning and
Advanced Directives helps provide information that can assist health professionals for the
future. After examining the literature from 10 separate scholarly peer reviewed articles
evidence shows that opinions vary among different sample set representing the total aging
population. The evidence supports the idea that much of elderly individuals hold a somewhat
negative opinion towards Advanced Directives and Advanced Care Planning based upon the
samples and results from the current published research. The limitations of the amount of
research present in this field call for the need of more research to be done and current studies
to be duplicated for validity. A knowledge of the aging populations’ opinion towards these ideas
can help prepare for the future.
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