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Australas J Ageing. 2019;38:173–181. wileyonlinelibrary.com/journal/ajag | 173© 2019 AJA Inc.
1 | INTRODUCTION
1.1 | Background
Advance care planning (ACP) refers to “a process that sup- ports adults at any age or stage of health in understanding and sharing their personal values, life goals and preferences regarding future medical care.”1 The process of ACP is itera- tive and complex, involving the individual, family members, health professionals and aged care workers. It is an ongoing discussion regarding a person's preferences for care, includ- ing end- of- life care, and requires regular review. ACP dis- cussions may lead to documentation of a person's preferences
in an advance care directive, or appointment of a substitute decision- maker (SDM). Although ACP can be initiated in various settings, there is increased interest in implementation of ACP in aged care, where chronic illness means that an older person has a higher risk of losing the ability to make or communicate preferences.
The current body of evidence demonstrates the benefits of ACP. ACP results in higher aged care staff satisfaction,2 reduces unwanted hospitalisation and aggressive treat- ments,3-5 reduces stress and anxiety for family members in decision- making and increases family member's satisfaction with outcomes at death.6,7 Documented advance care plans also increase adherence to a person's preferences by health
Received: 21 August 2018 | Revised: 7 February 2019 | Accepted: 17 February 2019
DOI: 10.1111/ajag.12639
R E V I E W A R T I C L E
Facilitators and barriers to advance care planning implementation in Australian aged care settings: A systematic review and thematic analysis
Frances Batchelor1 | Kerry Hwang1 | Betty Haralambous1 | Marcia Fearn1 | Paulene Mackell1 | Linda Nolte2 | Karen Detering2,3
1National Ageing Research Institute, Parkville, Victoria, Australia 2Advance Care Planning Australia, Austin Health, Heidelberg, Victoria, Australia 3Faculty of Medicine, Dentistry and Health Science, University of Melbourne, Parkville, Victoria, Australia
Correspondence Dr Frances Batchelor, National Ageing Research Institute, Parkville, Vic., Australia. Email: [email protected]
Funding information Department of Health, Australian Government
Objectives: There are many studies investigating implementation of advance care planning (ACP) in aged care around the world, but few studies have investigated Australian settings. The objective of this study was to determine facilitators and bar- riers to implementation of ACP in Australian residential and community aged care. Methods: Evidence from Australian studies published between 2007 and September 2017 of ACP in residential and community aged care was sourced from electronic databases using predetermined search strategies. Data were extracted and synthe- sised using thematic analysis, and summarised according to themes. Results: Nine studies described facilitators and barriers of ACP implementation. Six themes were identified: “Education and Knowledge,” “Skills and Training,” “Procedures and Resources,” “Perceptions and Culture,” “Legislation” and “Systems.” Conclusions: A whole of systems approach is necessary to facilitate uptake of ACP in residential aged care settings. More research is needed to understand facilitators and barriers to ACP in community aged care.
K E Y W O R D S advance care planning, aging, Australia, nursing homes, review
174 | BATCHELOR ET AL.
professionals, aged care workers and family.5,6 Several stud- ies discuss ACP in residential aged care,6,8-15 but despite the evidence, uptake remains low in Australia, with the preva- lence of plans in residential aged care estimated to be as low as 0.2% up to 5%- 14%.16-19 The prevalence of advance care plans in the community is less clear, but estimates suggest approximately 14% of adults living in the community have an advance care plan.20 While the prevalence in people receiv- ing community aged care services in Australia is unknown, those in receipt of these services may benefit from consider- ing ACP, because a large number may have chronic medical conditions that require complex care.21,22 It may also be ad- vantageous to have ACP discussions in community aged care settings because of the familiarity of the home environment23 and people may be less cognitively impaired than those living in residential care.
Although there are several systematic reviews published on the facilitators and barriers of ACP in residential aged care, there are no reviews examining ACP in Australian con- texts, nor any including community aged care.
1.2 | Aims This review aims to determine the facilitators and barriers to ACP in Australian aged care settings. Our objectives were as follows:
1. Characterise facilitators and barriers to ACP in Australian residential and community aged care.
2. Determine how ACP is implemented in community aged care.
3. Identify research gaps requiring further exploration.
2 | METHODS
2.1 | Search strategy We conducted a systematic search of CINAHL, EMBASE, PubMed and PsycINFO. Search terms included key phrases relat- ing to ACP, advance care directives, implementation, intervention, strategies, and residential and/or community care. Filters applied to the search included the following: English only, abstract pub- lished between 2007 and 30th September 2017. Reference lists for full- text articles were examined to find relevant articles. The complete search strategy is found in the Appendix S1.
2.2 | Eligibility criteria
2.2.1 | Study population Cohorts in Australian community or residential aged care set- tings: older people or residents, family members, organisa- tional staff, nurses or doctors.
2.2.2 | Study design No restrictions on study design.
2.2.3 | Outcomes Publications that discussed the facilitators and barriers to imple- menting ACP in residential and/or community aged care services.
2.2.4 | Exclusion criteria Studies discussing ACP in specific medical settings, such as in palliative care or in specific diseases, were excluded. Reviews, including narrative and systematic reviews, were excluded.
2.3 | Study selection Articles were imported into Covidence (Covidence systematic re- view software, Veritas Health Innovation, Melbourne, Australia) and duplicates were removed. One author (KH) screened the title and abstract and sourced relevant full- text articles based on the eligibility criteria. Full- text articles were independently assessed by two authors (KH, MF). Conflicts regarding the eligibility of articles were discussed until consensus was reached. The final list of articles in the study was quality assessed.
2.4 | Quality assessment of studies Quality was assessed as follows:
• For qualitative studies, the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used.24 The COREQ checklist has 32 items, organised into
Policy Impact
To improve uptake of advance care planning (ACP), organisations must ensure that policies align with rel- evant health- care organisations, and with the laws governing ACP in their respective states or territories. Clear policies outlining expectations of staff, respon- sibilities and processes can facilitate uptake of ACP.
Practice Impact
The process of implementing advance care planning (ACP) is complex. Providing education and training for staff can enhance the implementation of ACP and raises the awareness amongst older people and their family members. A person- centred approach using a multi- disciplinary team is ideal for facilitating ACP.
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three domains: “Research team and reflexivity,” “study de- sign” and “analysis and findings.”
• For studies involving surveys, the SUrvey Reporting GuidelinE (SURGE) checklist was used.25
• Intervention studies were assessed using the checklist for assessment of the methodological quality of health-care interventions.26
Quality assessment was conducted by two authors (KH, MF) independently using the relevant checklist. Discrepant views regarding the quality were settled by a third author (FB).
2.5 | Data extraction Data extracted included the following: aims and objectives, setting and location, participants and the findings related to facilitators and barriers to ACP.
2.6 | Data synthesis Deductive thematic analysis was used to synthesise major themes relating to facilitators and barriers.27 Each article was read independently by two researchers (KH, MF). Both re- searchers manually coded and extracted the major themes. The two researchers then agreed on the final themes in con- junction with a third author (BH).
3 | RESULTS
3.1 | Summary of studies The search identified 291 studies. Following abstract screen- ing, 30 articles were extracted for full- text review. Three ad- ditional articles were identified from reference lists. From the 33 articles, 24 were excluded, leaving nine that met inclu- sion criteria (Figure 1). The reasons for exclusion are listed in Figure 1.
The nine studies included seven qualitative studies21,28-33 and two intervention studies,34,35 summarised in Table 1. The majority of qualitative studies used interviews as their primary data source, and one used a descriptive survey.21 One article described the facilitators and barriers to ACP in community aged care.21 Two studies were from an older person and/or family member's perspective,29,31 two de- scribed a nurse's perspective,28,30 two described general staff perspectives,34,35 and three described management's perspective.21,32,33
The average COREQ checklist score amongst the qual- itative studies was 12/32, indicating low reporting qual- ity. The descriptive survey21 scored 16/28 on the SURGE checklist, indicating medium quality. The two intervention studies scored 1234 and 835 out of 26 on the methodolog- ical checklist for health- care interventions, indicating low quality.
F I G U R E 1 Flowchart of the search strategy to find relevant articles
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176 | BATCHELOR ET AL.
3.2 | Thematic analysis Six themes related to facilitators and barriers to ACP in resi- dential and community aged care were identified. These were Knowledge and Education, Skills and Training, Procedures and Resources, Perception and Culture, Legislation, and Systems.
3.2.1 | Knowledge and education Lack of knowledge and understanding of ACP reduced the confidence of staff to facilitate ACP conversations with residents.32,34,35
There was low awareness of ACP amongst community- dwelling older Australians, residents of aged care facilities and their families.34 Providing education improved uptake of ACP and supported family members to consider their own advance care plans.34 Lack of written material about ACP was one reason for not initiating ACP with service users.21 Complex terminology in written material was seen as confusing for residents and family members.31 In contrast, having health professionals and aged care workers clarify ACP empowered residents and family members to undertake ACP.30,31,34
3.2.2 | Skills and training in ACP facilitation Two intervention studies reported that training for nurs- ing staff increased the uptake of ACP postintervention.34,35 These studies focused on identifying an illness trajectory,34 or training nurses using a co- ordinated systematic approach to ACP.35 Key enablers included the following: communication, leadership and critical thinking skills.28 Conversely, a lack of training for health professionals and aged care workers was associated with poor uptake of ACP.21,32,33
3.2.3 | Procedures and resources Having dedicated ACP policies 29 and systematic ways to store and retrieve plans supported staff to implement ACP.21,32
Accessibility and transferability of documents across care settings were seen as imperative.35 The lack of a central elec- tronic registry, and of standardised documents, was identified as a barrier to ACP.32
Time constraints were identified as a barrier in both resi- dential and community aged care settings.21,30,32
3.2.4 | Perception and culture There were different perceptions about ACP from residents’ and relatives’ perspectives. One study found that residents were open to ACP, as it allowed autonomy regarding future
medical treatment decisions.31 Residents worried that future wishes would not be followed by health professionals or rela- tives, and were concerned about relatives being “paternalis- tic.”31,32 From a nurse's perspective, relatives were seen as sometimes demanding treatment that a nurse believed the resident would not want.30
Other barriers identified included family members being reluctant to discuss ACP, and struggling to accept “refusal of treatment,” and the burden of decision- making causing emo- tional distress.31,35 It was identified that relatives may find it distressing to talk about death, may be in denial,30,35 or do not wish to discuss ACP for religious reasons.32
Paternalistic attitudes of health- care workers were identi- fied as a barrier to implementing ACP.32 Health profession- als may have the perception that everything must be done to prolong life,30-32 but this can also be an expectation of family members.30,31
3.2.5 | Legislation Uncertainty about the legislation regarding ACP was a bar- rier to implementation.32,33 One study found that there was confusion about the role of legally appointed SDMs.34 Providing information and education on the role of the le- gally appointed SDM helped to overcome this. Clarification and standardisation of legislation on ACP across jurisdictions was seen as a facilitator to ACP.32
3.2.6 | Systems A person- centred approach was identified as a facilita- tor.28,29,31 Evidence indicated that nurses play an important role in eliciting a person's preferences, values and beliefs.29,31
Five papers discussed a multi- disciplinary ap- proach,28-30,33,34 involving the concerted efforts of stake- holders including: family members,28,33 care staff,33,34 nurses,28,34 doctors,28,29,33,34 hospital teams 29,30,34 and physiotherapists34 to support residents in ACP. When this occurred, this facilitated ACP discussions, as each constituent of the multi- disciplinary team brought their expertise to the process.28-30,33,34 From the perspective of the family, a multi- disciplinary approach relieved the decision- making burden.30
Having a standardised approach facilitates ACP in res- idential aged care, including standardisation of forms.32 In one study, only one- sixth of residential aged care manag- ers indicated that ACP was systematically approached.33 Another study described a whole- systems framework to implementing ACP in a residential aged care setting.29 Specifically, the expertise of nurses, involvement of the multi- disciplinary team, having discussion and provid- ing education, as well as using a person- centred and stan- dardised process, was seen as ideal.
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iley.com /term
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| 177BATCHELOR ET AL.
T A
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in vo
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in A
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th ei
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id en
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20 h
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re si
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(p lu
s 7 10
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l o f
13 35
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h- le
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fo r
pe op
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5 y
or o
ve r
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ve st
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e th
e im
pl em
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tio n
pr oc
es s o
f A C
P an
d th
e us
e of
A
C D
s To
in ve
st ig
at e
th e
ou tc
om es
o f A
C P
an d
ex pe
rie nc
es o
f p eo
pl e
in vo
lv ed
in
A C
P an
d A
C D
s. To
d et
er m
in e
th e
ex te
nt o
f n ur
si ng
pa
rti ci
pa tio
n an
d sc
op e
of p
ra ct
ic e
fo r n
ur se
s i n
th e
us e
of A
C Ps
a nd
A
C D
s.
Fo ur
m ai
n el
em en
ts (i
np ut
, t hr
ou gh
pu t,
ou tp
ut
an d
fe ed
ba ck
) a nd
2 0
su b-
el em
en ts
w er
e id
en tif
ie d
as re
qu is
ite s f
or n
ur se
s t o
in iti
at e
an d
im pl
em en
t A C
P in
a w
ho le
- s ys
te m
s ap
pr oa
ch . T
he ro
le o
f t he
n ur
se in
fa ci
lit at
in g
qu al
ity e
nd - o
f- lif
e di
sc us
si on
s w ith
st ro
ng
ed uc
at io
n an
d tra
in in
g fo
r n ur
si ng
st af
f a nd
re
si de
nt w
as e
m ph
as is
ed .
(C on
tin ue
s)
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nloaded from https://onlinelibrary.w
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ross U niversity, W
iley O nline L
ibrary on [10/07/2023]. See the T erm
s and C onditions (https://onlinelibrary.w
iley.com /term
s-and-conditions) on W iley O
nline L ibrary for rules of use; O
A articles are governed by the applicable C
reative C om
m ons L
icense
178 | BATCHELOR ET AL.
N o.
R ef
er en
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St ud
y qu
al ity
sc
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St ud
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Se m
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icense
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4 | DISCUSSION
To our knowledge, this is the first systematic review to char- acterise facilitators and barriers to ACP in Australian resi- dential and community aged care. Overall there was a lack of evidence, particularly in community aged care settings. None of the studies explored facilitators and barriers in cohorts such as culturally and linguistically diverse (CALD) populations, those who identify as Lesbian Gay Bisexual Transgender or Intersex (LGBTI) or those who identify as Aboriginal and/or Torres Strait Islander.
Facilitators common to other settings included improving general awareness about ACP in the community, individ- ual knowledge and attitudes about ACP (older people and their families, as well as health professionals), provision of structured training to staff, clear policy and procedures, and having standardised documentation.36 Common barriers in- cluded lack of time, attitudes towards death and dying and a culture within health systems that is geared towards life- prolonging treatment.37
Our review highlights the importance of a whole- systems ACP approach in Australian residential and community aged care, a theme echoed by international reviews.38-40 While edu- cation and training are important, programs are usually targeted towards staff or an ACP champion;41 it may be more beneficial to include older people and their family members in the educa- tion program, rather than providing such education separately.
4.1 | Implications for policy Our review highlights the role of policy in both residential and community aged care settings and the need for regular re- view and adaptation. Organisational policy that provides clar- ity on the expectation of staff, responsibilities and processes, and that outlines local procedures regarding documentation, storage and accessibility, as well as the time required to im- plement ACP effectively, can facilitate uptake. To facilitate uptake, local policy must align with other relevant organisa- tions such as primary care, hospital, health and ambulance services. In Australia, the laws governing ACP are state or territory- based42 and there is evidence that the differences in legislation are a barrier to ACP.32-34
4.2 | Implications for research This review has highlighted the need for more robust research, particularly in community aged care. The included studies were mostly of relatively low quality, limited in number, size and scope and did not include outcome measures that evaluate uptake of ACP in aged care.
Only one study investigated the facilitators and barriers to ACP in community aged care,21 and this was from the case manager's perspective. There are commonalities between
community and residential aged care such as: lack of train- ing, documentation, time and organisational approach.21 Yet, there is no exploration of the potential facilitators and barri- ers to ACP from a client's or family's perspective. Given the increasing uptake of home care packages in Australia, and the high prevalence of cognitive impairment in aged care res- idents,43 it is important to understand more about how best to facilitate uptake of ACP in community aged care.
There is also a need for more research into ACP in re- lation to people from CALD backgrounds. Not only is the proportion of older Australians from CALD backgrounds increasing,44 the aged care workforce consists of increasing numbers of people born overseas.45 Although one study in- dicated that cultural considerations are needed,33 no studies were found that investigated facilitators and barriers to ACP from CALD perspectives in community or residential aged care. There is also a need for more evidence on the perspec- tives of Aboriginal and/or Torres Strait Islanders and the per- spectives of people who identify as LGBTI.
4.3 | Implications for practice Our review highlights the approaches that support ACP in aged care settings. Multi- disciplinary approaches bring to- gether expertise from health and aged care professionals to facilitate ACP discussions, clarify the medical and legal terms of advance care plans and reduce the burden on fam- ily members and residents when the time for decisions nears. A person- centred approach is also important, as it reduces the taboo nature of ACP for older people, and empowers them to reflect on their life and make decisions. Our review highlights a gap in research about how ACP is impacted by broader practices, such as access to general practitioner ser- vices, relationships with local health services and the percep- tions and overarching discourse about end- of- life care in the broader Australian community. There is an opportunity to consider how policies, practices and roles and responsibil- ity of the health and aged care sector impact on the uptake of and adherence to ACP. This could include investigating the potential role of Aged Care Assessment Teams, who as- sess access to aged care services, the GP, in facilitating early discussions, and community aged care providers having a more central role. Despite differences in state and territory legislation, aged care providers operate under the Aged Care Act and need to fulfil the same accreditation standards across Australia. There is thus an opportunity to consider drivers for an overarching national framework to guide implementation in this setting.
The provision of time and having the skills to discuss ACP was identified as key facilitators. There is an opportunity to consider innovation in the delivery of education that is mean- ingful and logistically possible within environments where staff feel time- poor.
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180 | BATCHELOR ET AL.
4.4 | Limitations of the review There are some limitations of this review. Our search crite- ria were restricted to studies published in the last 10 years, which may have limited the number of included studies. Another limitation is that the results of the review may not be generalisable beyond Australia.
5 | CONCLUSIONS
This review highlighted some of the facilitators and barri- ers to implementation of ACP in aged care. However, more research is needed, particularly in community aged care settings, to determine the effectiveness of interventions that are aimed at increasing uptake of ACP. Future stud- ies should also take into consideration the perspectives of older people, their families and service providers, includ- ing GPs. Further research is required to identify the facilita- tors and barriers to ACP in particular cohorts such as those from CALD backgrounds and those who identify as LGBTI or as Aboriginal and/or Torres Strait Islander. Future ef- forts should focus on the development of a comprehensive framework for ACP in aged care which is person- centred and multi- disciplinary and recognises that legislation varies across Australia. Such a framework should also recognise the interface between primary care, health services and aged care sectors.
ACKNOWLEDGEMENTS
The authors would like to acknowledge the Australian Government Department of Health for funding this piece of work.
CONFLICTS OF INTEREST
The authors declare no conflicts of interest.
ORCID
Frances Batchelor https://orcid.org/0000-0002-7302-7293 Kerry Hwang https://orcid.org/0000-0002-5875-8493
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SUPPORTING INFORMATION
Additional supporting information may be found online in the Supporting Information section at the end of the article.
How to cite this article: Batchelor F, Hwang K, Haralambous B, et al. Facilitators and barriers to advance care planning implementation in Australian aged care settings: A systematic review and thematic analysis. Australas J Ageing. 2019;38:173–181. https://doi.org/10.1111/ajag.12639
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