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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

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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

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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

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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.

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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

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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).

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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

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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.

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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)

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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

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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

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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.

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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

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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

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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

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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.

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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.

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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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References Administration on Aging. (2016). Aging Statistics Retrieved from

https://aoa.acl.gov/Aging_Statistics/Index.aspx

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