Realist Review to Inform Development of the Electronic Advance Care Plan for the Personally Controlled Electronic Health Record in Australia
Isabelle Skinner, MPH&TM, MBA, PhD,1 Cathy Smith, RN, RM, MB,2 and Linda Jaffray, BSW2 1
Nursing and Midwifery, University of Tasmania, Burnie, Tasmania, Australia. 2 Rural Clinical School, University of Tasmania, Burnie, Tasmania, Australia.
Abstract Introduction: Australia has invested heavily to introduce an opt-in personally controlled electronic healthcare record (PCEHR), which incorporates an element of advance care planning (ACP). A further investment of $10 million AUD has been made to increase capability to a fully integrated electronic ACP (eACP). Australia has an aging population, the majority of whom will live, be cared for, and die in the community. ACP in the community setting can support older people to navigate their illness trajectories and health decisionmaking. Sharing this information with care providers across different healthcare settings is crucial. Materials and Methods: The eACPs was conceptualized as a complex social intervention. We conducted a realist review of the literature to explore evidenced-based models of eACP for community-dwelling older people, with chronic, life-limiting illness. A scoping search identified gray literature; a systematic search for empirical evidence was conducted of eight databases, including PubMed and Google Scholar. Results: Seventeen articles were included, along with 71 other documents. Realist synthesis based on data collected using original abstraction forms was used to develop a model to explain what worked for whom and in what circumstances. Electronic physician reminders and information to patients increased ACP completions. However, there were no precedents for transferring ACPs into a national PCEHR. Conclusions: We developed a model informed by six core themes from the literature: information sharing, process, initiating conversations, dignity of life (individualized approach), education (individual and community), and collaborative practice (engagement). End-of-life care that is consistent with older people’s values and preferences requires robust care processes and efficient information sharing across the healthcare continuum. Key words: e-health, medical records, legal/legislation, policy
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Introduction
C
ontinuity of care and the exchange of important healthcare information across the continuum of care are important elements of the Australian National Health Reform agenda.1 The cornerstone of this has been the development of a national personally controlled electronic healthcare record (PCEHR), which was launched in July 2012 as an opt-in system following the results of a government inquiry.2 Information about the presence of an advance directive has been included in the current system, and it is proposed that electronic advance care plans will be included as part of the system from 2014.3 Australia has an aging population. The Australian Bureau of Statistics (in 2003) predicted that by 2051 approximately 30% of the population will be over 65 years of age, compared with 13% currently.4 A 2003 survey of disability, aging, and carers found that 52% of older people living in private dwellings had a disability and that 15.6% of those people had a severe core-activity limitation. As we advance in age, there is a higher likelihood of living with a chronic and life-limiting illness. People over the age of 75 years are reported to see their general practitioner twice as often as younger people, and 18% of older people with a chronic condition were reported to have seen their general practitioner 12 or more times in the previous year.5 Advance care planning (ACP) in this setting is fundamentally important to support older people to navigate the different phases of their illness trajectories and associated health decision-making. E-health systems have been designed to manage the interoperability to make important health information available at the point of care.6–8 Including electronic ACPs (eACPs) in the national PCEHR in Australia is seen as a priority for the aging population. Around the world there is an increasing commitment and concern to enhance the quality of end-of-life care in a way that honors and supports patient values and preferences.9–11 ACP is regarded as a fundamental part of this12 for the communication of those decisions and wishes to the relevant stakeholders involved in care provision.9–11 There has been an emphasis on ACP in residential aged care; however, more recently the focus has shifted to include people living in the community with serious conditions such as congestive cardiac failure, chronic obstructive pulmonary disease, or dementia.13 The aim of this review was to identify the evidence to inform policy for the further development of the eACP for community-dwelling older people with chronic, life-limiting illness.
DOI: 10.1089/tmj.2013.0341
ACP FOR THE PCEHR: A REALIST REVIEW
Materials and Methods
INCLUSION/EXCLUSION CRITERIA
The aim of our study was to explore eACP models for communitydwelling older people and whether electronic information sharing for this population was effective. A realist review of the literature was conducted that sought to understand what it is about the intervention that works and in what circumstances and for whom.14 Realist reviews acknowledge the complexities of implementing interventions in real world settings and seek to synthesize from policy documents and primary studies a rich picture of the overall evidence.
For inclusion, articles were required to be empirical studies in English that described model development or model testing for ACP and electronic record sharing in community-dwelling older people. Exclusion criteria were narrative reviews and models of ACP in residential aged care facilities or acute care facilities.
CLARIFYING SCOPE As suggested by Pawson et al.,14 a scoping search was conducted using Google and Google Scholar to establish the appropriateness of the search terms and to identify index articles. A rich selection of gray literature, including policy documents and national frameworks that relate to ACP and electronic health records, was gathered using a snowball approach and searching reference lists of relevant documents. Our initial aim was to understand the intervention (ACP) and then to get a feel for the context in which the intervention was to be implemented, an electronic document for community-dwelling older people that could be shared among health provider settings, and to gain an understanding of the mechanism, which describes what happens when a particular ‘‘context plays host to an intervention,’’ thus leading to the outcome.15 Pawson et al.14 also suggested that a close relationship with key stakeholders is needed to ensure the review will inform policy intentions or objectives. A steering committee of key stakeholders, including community advocacy group representatives such as the Council for Older Australians and Advocacy Tasmania, primary care service providers, community leaders, and industry representatives such as Palliative Care Australia, the National eHealth Transition Authority, and the Public Guardianship Board, assisted in refinement of the research question and process.
SEARCH FOR EVIDENCE A systematic search of the peer-reviewed published literature was conducted between January and July 2012. An electronic database search was used, using medical subject heading terms and key word searches, from 1990 to the present, of the following eight databases: Cochrane, PubMed, Embase, ProQuest, CINAHL, Pyschinfo, Google, and Google Scholar. Search terms included the following: advanced and chronic and illness or terminal and care or life-limiting and illness, diabetes, cancer, renal failure, cardiac failure, respiratory failure, COPD (chronic obstructive pulmonary disease), death or dying or morbidity or mortality or terminal, community and dwelling or primary health and/or care, outpatients or primary care, advance and/or care and/or directive or health and directive or advance care plan or end-of-life or end-of-life care plan or enduring power of attorney or enduring guardian ship or conservative therapy, health and professional or doctor or physician or GP (general practitioner) or nurse, model of care or organization or administration, bereavement or satisfaction or anxiety or support or stress and care, e-health, electronic health, and/or medical records.
CODING SCHEME AND DATA ANALYSIS We developed and piloted data extraction forms to systematically extract the data. Data extraction forms for quantitative and qualitative studies were developed to evaluate the quality of each of the studies with an additional form to systematically code which studies contributed to the model and in what categories. Thematic content analysis was used to organize the data around the contexts for the studies, the models that were the interventions, and the outcomes, as well as study design elements. The process of synthesis was conducted by the three authors together. A schema for the model derived from the synthesis was drafted by one author, and full-text articles were then reviewed by all three authors to systematically identify which articles contributed to each of the categories of the model (Table 1).
Results One hundred twenty-five titles met the inclusion criteria. Following removal of duplicates, 71 abstracts were reviewed, identifying 18 studies (9 qualitative and 9 quantitative studies) that met the inclusion criteria for full-text analysis. One study was excluded as it was an opinion piece. Of the 17 studies remaining (Table 2), 3 included electronic information sharing in relation to ACP. Snowballing and citation searching were used to identify relevant policy documents, national frameworks, and conference proceedings. The gray literature included the following: 21 position articles, including national frameworks from Australia, United Kingdom, and Canada; 10 clinical and patient information bulletins; 12 guidelines; 11 books and book chapters; 7 policy documents; 7 clinical statements, 1 evidence brief; and 2 systematic review protocols. The findings of the three studies highlighted that the mechanism of electronic physician reminders accompanied with information to patients showed evidence of effectiveness in increasing the uptake of completing an advance care directive.16–18 However, computergenerated physician reminders, on their own, had no effect on the completion of advance directives in the primary care or community context. An important finding in the study of Heiman et al.16 was that three or more doctor visits was associated with increased completion of and discussion about advance directives (odds ratio = 2.5; 95% confidence interval, 1.6–3.9). This highlights the importance of ACP as a process and the patient–health provider relationship. To understand the evidence that supports robust and effective ACP in the community setting, including information that needed to be communicated electronically, we conducted a synthesis of the 17 studies. Six themes emerged from the literature: information sharing, process, dignity of life (individualized approach), collaborative practice (engagement), initiating conversations, and education
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Table 1. Studies Contributing to the Model by Category CATEGORY Advance care planning as a process
REFERENCES
CATEGORY
REFERENCES
Deutsch et al.7
McCarthy et al.23
Ludwick and Baughman13
Kahana et al.26
Mazzocato et al.15
Department of Health27
Heiman et al.16
Rosenfeld et al.28
Dexter et al.17
Fried et al.29
Yung et al.18
An individualized approach
Table 1. continued
Education (individual and community)
Heiman et al.16
Schiebel et al.19
Schiebel et al.19
Matsui20
Allen et al.21
Allen et al.21
Kahana et al.26
Tierney et al.22
Department of Health27
McCarthy et al.23
Rosenfeld et al.28
Heiman et al.16
Fried et al.29
Schiebel et al.19
Samsi and Manthorpe30
Matsui20
Ko and Lee31
Allen et al.21
Sharing information
Mazzocato et al.15 Seymour et al.25
Hopp24 Seymour et al.25 Kahana et al.26 Department of Health27 Rosenfeld et al.28 Collaborative engagement
Dexter et al.17
(individual and community) (Table 1). From this we derived a model of eACP for older community-dwelling adults with chronic, lifelimiting illness.
Yung et al.18 Schiebel et al.19 Allen et al.21 Tierney et al.22 Hopp24 Department of Health27 Rosenfeld et al.28 Fried et al.29 Samsi and Manthorpe30 Initiating conversations
Deutsch et al.7 Mazzocato et al.15 Dexter et al.17 Yung et al.18 Schiebel et al.19 Allen et al.21 Tierney et al.22
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SHARING INFORMATION Yung et al.18(p.861) noted the documentation of patient end-of-life preferences into healthcare records is problematic. If completed in the first place, they risk becoming misplaced, lost, or retained by individual health providers and agencies and not communicated to other sectors of the healthcare team in different settings. This breakdown in communicating patient care preferences can result in significant negative effects on patients’ end-of-life experience and the subsequent bereavement of family members.18 Schiebel et al.19(p.92) recommended ‘‘. a single location in the Electronic Medical Record for the entry and retrieval of the active order .’’ to minimize the event of desired resuscitation efforts being actively withheld.
INFORMATION THAT NEEDS TO BE SHARED IN AN EACP: ACP AS A PROCESS ACP is a process that is built on over time, which is ideally initiated early, well before the onset of acute or life-threatening events and potential mental incapacity, providing time for the exploration of personal care preferences and access to clinical information.20–22 Acknowledgment of the ongoing process with an inherent requirement to regularly revisit and review care preferences as things
ACP FOR THE PCEHR: A REALIST REVIEW
Table 2. Data Quality Assessment
REFERENCE
YEAR
COUNTRY
STUDY TYPE/DESIGN
QUALITY ASSESSMENT OF ARTICLEa
TITLE
Heiman et al.
2004
United States
RCT
Improving completion of advance directives in the primary care setting: A randomized controlled trial
O
Matsui20
2010
Japan
Quasi-experimental preand post-intervention
Effectiveness of end-of-life education among community-dwelling older adults
O
Bodnar Deren32
2011
United States
Survey
Perceived illness burden, a key to understanding advance care planning in adults nearing the end-of-life
O
Dexter et al.17
1998
United States
RCT
Effectiveness of computer-generated reminders for increasing discussions about advance directives and completion of advance directive forms
O
Tierney et al.22
2001
United States
RCT
The effect of discussions about advance directives on patients’ satisfaction with primary care
O
Wissow et al.33
2004
United States
Quasi-experimental
Promoting advance directives among elderly primary care patients’
O
Schwartz et al.34
2002
United States
RCT (pilot)
Early intervention in planning end-of-life care with ambulatory geriatric patients: Results of a pilot trial
O
Hopp24
2000
United States
Survey
Preferences for surrogate decision makers, informal communication, and advance directives among community-dwelling elders: Results from a national study
O
Allen et al.21
2012
United States
RCT (pilot)
The Promoting Effective Advance Care for Elders (PEACE) randomized pilot study: Theoretical framework and study design
O
Seymour et al.25
2004
United Kingdom
Focus groups (n = 8)
Planning for the end of life: The views of older people about advance care statements
O
Fried et al.29
2009
United States
Focus groups
Understanding advance care planning as a process of health behavior change
O
McCarthy et al.23
2008
UK
Survey
Advance care planning and health care preferences of community-dwelling elders: The Framingham Heart Study
O
Samsi and Manthorpe30
2010
UK
Framework analysis (interviews)
’I live for today’: A qualitative study investigating older people’s attitudes to advance planning
O
Kahana et al.26
2004
United States
Interviews
The personal and social context of planning for end-of-life care
O
Rosenfeld et al.28
2000
United States
Phenomenology
End-of-life decision making: A qualitative study of elderly individuals
O
Ko and Lee31
2009
United States
Survey
End-of-life communication: Ethnic differences between Korean American and non-Hispanic white older adults
O
Yung et al.18
2010
United States
Structured interview multi-regression analysis
Documentation of advance care planning for community-dwelling elders
O
16
a
Using the Critical Appraisal Skills Program.
RCT, randomized controlled trial.
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change is considered important,18,23 best initiated and supported within established healthcare relationships, characterized by a sense of trust and rapport.24,25 Community-dwelling older adults with chronic, life-limiting illness will most often have established relationships with primary healthcare providers built over time.16 However, patients may identify any number of healthcare providers with whom to engage in ACP, necessitating building capacity across the care continuum.26 Interoperability between information technology systems in primary care and the hospital systems is essential.
AN INDIVIDUALIZED APPROACH An individualized, person-centered approach to ACP, where discussions are anchored in what accords dignity and quality of life, as defined by the individual person, is essential. This approach differs from that used commonly in acute care settings, which begin with what interventions should be accepted or refused at the end-oflife.19,27 The person benefits from engaging in a personal inventory on acceptable states and valued activities as the central focus and how these are supported or compromised by different proposed interventions or treatment options.20,27 Ko and Lee31 found higher knowledge of ACP, greater experience with illness and decision-making for loved ones, and perceived severity were strong predictors of end-of-life communication. Higher education has also been suggested to correlate with an increased incidence of having advance directives, and culture has also demonstrated an impact,23,24,26,28,29 with white populations more likely to complete advance directives and discuss ACP with health agencies than other cultures.30 Samsi and Manthorpe30 found predisposition toward planning and attitude to life, belief systems, and spirituality impacted planning. In addition, Kahana et al.26(p.1166) found that ‘‘the propensity to make end-of-life decisions was related more to personal characteristics than to health related circumstances.’’ Ability to access a variety of stored documents, created contemporaneously, is required.
crease.30 The literature identifies, that for clinicians, time constraints, level of skill, and concern about upsetting patients and families are often barriers.22,26,31 In light of these complexities, studies have identified the value of key health providers undertaking facilitator roles to skillfully support the decision-making triad to come together.21 Social workers and nurses have been identified to perform this key role. Schwartz et al.,34(p.1617) for example, recommended that ‘‘having a trained non physician facilitator usually a nurse or social workers with considerable experience in end-of-life care, helps ensure that an adequate dialogue occurs between older people and their healthcare agents or family members.’’ Facilitators can also have a role in identifying documents and information to be sorted on the PCEHR. Allen et al.21 also supported ACP as a multidisciplinary effort.
INITIATING CONVERSATIONS An ‘‘illogical gap in people’s post- and pre-death planning’’25(p.61) persists, with people more prepared to engage with funeral arrangements and will preparation, rather than pre-death issues such as ACP.28,29 The literature also suggests that older people find it difficult to initiate end-of-life discussions with healthcare providers and family members and cite ‘‘a sheer lack of opportunities to express thoughts and concerns relating to future mortal illness.’’25(p.66) Furthermore, a consistent finding was that, if older people did discuss end-of-life preferences, they were much more likely to do so with family members than healthcare professionals.18,23,26,30 Only between 5% and 17% of older people had discussed their preferences with their medical practitioner or other healthcare provider.26,30 This may considerably impact their ability to make informed healthcare decisions.23 The patient level of satisfaction with the clinical encounter appears to increase when healthcare providers incorporate ACP discussions in the consultation.22,28 Time for conversations and to upload information to the PCEHR at the time of the consultation is needed.
EDUCATION COLLABORATIVE ENGAGEMENT ACP is usually a collaborative activity among patients, families, and healthcare providers, often identified in the literature as the decision-making triad.23,25,27 Skillful discussion among this triad is expected ‘‘to facilitate unified decision making that is informed and rooted in patient values.’’23(p.957) Family members or significant others are often considered important mediators between the older person and healthcare providers and advocates, especially when decision-making capacity is impaired.25,27,29 This is taken to its final conclusion with the appointment of a healthcare proxy or an Enduring Guardian. Healthcare providers are able to support discussions, provide important clinical information, and suggest treatment options reflective of patient goals and values.25,27 The effectiveness of the ACP process, to a large extent, relies on the ability of this triad to communicate and work well together. Evidence suggests that for older people the likelihood of communication about end-of-life increases as perceived barriers de-
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Health literacy in older people was identified as a potential barrier to undertaking ACP and completing advance care directives.23,28 In a study by Wissow et al.,33(p.950) doctors reported that the lack of patient understanding with even the basic concepts of ACP had implications for its effectiveness, adding extra time and complexity to the consultation. This study perceived a benefit in patients receiving support from nurses or social workers to understand the legal issues. However, providing written information or an advance care document without the necessary dialogue and ongoing support was shown to have no benefit. The most effective education approach was the use of multiple modalities, such as written information, discussions, and presentation of case studies or vignettes.20,25,33 Community-wide interventions have been shown to increase the percentages of older people engaging in the process.28,33,34(p.1617) The opt-in PCEHR requires older people to complete and upload their own information. This may be problematic and may require access to the system by authorized others.
ACP FOR THE PCEHR: A REALIST REVIEW
Discussion Although the eACP may well be the vehicle to capture and convey patient preferences and important ACP information across various healthcare sites, at the point of care where decisions are being made, a robust process of ACP must be in place in order to develop the eACP. Engaging older people with chronic, life-limiting illness in ACP is a complex area of clinical practice. It involves supporting patient decision-making through what is often a disconcerting process, characterized by multiple exacerbations and periods of stability before the terminal stage is reached.35,36 How respective organizations and healthcare providers currently involved in ACP in Australia perceive eACP needs further exploring. The majority of older people with chronic and complex care needs reside in the community. Primary healthcare providers play a key role in initiating and supporting early ACP, are in a position to assist patients in the complex process of navigating diverse healthcare settings, and are well placed to help older people upload any relevant document. They need to have systems that are well integrated into their current patient software. Unless the key stakeholders involved in ACP—community advocacy groups, older people themselves, and primary healthcare providers—are engaged in the process of specifying and designing what will be part of the eACP in the Australian opt-in PCEHR, it will not be taken up widely in the community as hoped. There have been major investments into the development of electronic health records worldwide, but many of them have failed to deliver the promised benefits to patients and the healthcare system. The Australian Government has invested significantly in the rollout of the PCEHR, which has been dogged by controversy. The dynamic political environment and the change of government have both sped up and slowed down the PCEHR development and rollout. The previous Australian Government Health Minister promoted that advance care plans be part of this record and tried to fast track this process. The use of realist review methodology proved somewhat problematic as stakeholder engagement is part of the process and is seen as essential in ensuring that recommendations can be implemented into policy and practice. We found that stakeholders were keen to have access to the project’s preliminary results.
LIMITATIONS AND STRENGTHS OF THE REVIEW The major limitation for this study was the lack of any reviews and empirically tested models for eACP. To our knowledge, this is the first realist review to inform eACPs as part of the PCEHR. It also contributes to the emerging field of systematic review. This realist review used a meta-synthesis of both quantitative and qualitative studies and incorporated gray literature. Meta-synthesis has a rigorous approach similar to qualitative research, which uses an interpretive approach. Researchers were immersed in the literature, reading and re-reading texts; discussion and reflection among team members continued to seek themes and explanations and to test theories until saturation was reached. This allowed us to examine the intervention
that is ACP in the context (electronic document) for communitydwelling older adults.
Conclusions Electronic systems of information sharing across different healthcare settings can support the provision of end-of-life care that is consistent with older people’s values and preferences. Older people need to be engaged with the process of identifying what information they want to share as part of an electronic advance care plan through their opt-in PCEHR. Electronic advance care plans and advance directives must be readily available to clinicians at the point of care to support decision-making. A standard location in the electronic medical record for entry and retrieval of any active order is needed.
Disclosure Statement No competing financial interests exist.
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Address correspondence to: Isabelle Skinner, MPH&TM, MBA, PhD Nursing and Midwifery University of Tasmania Brickport Road Burnie, Tasmania 7320 Australia E-mail: [email protected] Received: November 18, 2013 Revised: February 25, 2014 Accepted: February 28, 2014
Isabelle Skinner, MPH&TM, MBA, PhD,1 Cathy Smith, RN, RM, MB,2 and Linda Jaffray, BSW2 1
Nursing and Midwifery, University of Tasmania, Burnie, Tasmania, Australia. 2 Rural Clinical School, University of Tasmania, Burnie, Tasmania, Australia.
Abstract Introduction: Australia has invested heavily to introduce an opt-in personally controlled electronic healthcare record (PCEHR), which incorporates an element of advance care planning (ACP). A further investment of $10 million AUD has been made to increase capability to a fully integrated electronic ACP (eACP). Australia has an aging population, the majority of whom will live, be cared for, and die in the community. ACP in the community setting can support older people to navigate their illness trajectories and health decisionmaking. Sharing this information with care providers across different healthcare settings is crucial. Materials and Methods: The eACPs was conceptualized as a complex social intervention. We conducted a realist review of the literature to explore evidenced-based models of eACP for community-dwelling older people, with chronic, life-limiting illness. A scoping search identified gray literature; a systematic search for empirical evidence was conducted of eight databases, including PubMed and Google Scholar. Results: Seventeen articles were included, along with 71 other documents. Realist synthesis based on data collected using original abstraction forms was used to develop a model to explain what worked for whom and in what circumstances. Electronic physician reminders and information to patients increased ACP completions. However, there were no precedents for transferring ACPs into a national PCEHR. Conclusions: We developed a model informed by six core themes from the literature: information sharing, process, initiating conversations, dignity of life (individualized approach), education (individual and community), and collaborative practice (engagement). End-of-life care that is consistent with older people’s values and preferences requires robust care processes and efficient information sharing across the healthcare continuum. Key words: e-health, medical records, legal/legislation, policy
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Introduction
C
ontinuity of care and the exchange of important healthcare information across the continuum of care are important elements of the Australian National Health Reform agenda.1 The cornerstone of this has been the development of a national personally controlled electronic healthcare record (PCEHR), which was launched in July 2012 as an opt-in system following the results of a government inquiry.2 Information about the presence of an advance directive has been included in the current system, and it is proposed that electronic advance care plans will be included as part of the system from 2014.3 Australia has an aging population. The Australian Bureau of Statistics (in 2003) predicted that by 2051 approximately 30% of the population will be over 65 years of age, compared with 13% currently.4 A 2003 survey of disability, aging, and carers found that 52% of older people living in private dwellings had a disability and that 15.6% of those people had a severe core-activity limitation. As we advance in age, there is a higher likelihood of living with a chronic and life-limiting illness. People over the age of 75 years are reported to see their general practitioner twice as often as younger people, and 18% of older people with a chronic condition were reported to have seen their general practitioner 12 or more times in the previous year.5 Advance care planning (ACP) in this setting is fundamentally important to support older people to navigate the different phases of their illness trajectories and associated health decision-making. E-health systems have been designed to manage the interoperability to make important health information available at the point of care.6–8 Including electronic ACPs (eACPs) in the national PCEHR in Australia is seen as a priority for the aging population. Around the world there is an increasing commitment and concern to enhance the quality of end-of-life care in a way that honors and supports patient values and preferences.9–11 ACP is regarded as a fundamental part of this12 for the communication of those decisions and wishes to the relevant stakeholders involved in care provision.9–11 There has been an emphasis on ACP in residential aged care; however, more recently the focus has shifted to include people living in the community with serious conditions such as congestive cardiac failure, chronic obstructive pulmonary disease, or dementia.13 The aim of this review was to identify the evidence to inform policy for the further development of the eACP for community-dwelling older people with chronic, life-limiting illness.
DOI: 10.1089/tmj.2013.0341
ACP FOR THE PCEHR: A REALIST REVIEW
Materials and Methods
INCLUSION/EXCLUSION CRITERIA
The aim of our study was to explore eACP models for communitydwelling older people and whether electronic information sharing for this population was effective. A realist review of the literature was conducted that sought to understand what it is about the intervention that works and in what circumstances and for whom.14 Realist reviews acknowledge the complexities of implementing interventions in real world settings and seek to synthesize from policy documents and primary studies a rich picture of the overall evidence.
For inclusion, articles were required to be empirical studies in English that described model development or model testing for ACP and electronic record sharing in community-dwelling older people. Exclusion criteria were narrative reviews and models of ACP in residential aged care facilities or acute care facilities.
CLARIFYING SCOPE As suggested by Pawson et al.,14 a scoping search was conducted using Google and Google Scholar to establish the appropriateness of the search terms and to identify index articles. A rich selection of gray literature, including policy documents and national frameworks that relate to ACP and electronic health records, was gathered using a snowball approach and searching reference lists of relevant documents. Our initial aim was to understand the intervention (ACP) and then to get a feel for the context in which the intervention was to be implemented, an electronic document for community-dwelling older people that could be shared among health provider settings, and to gain an understanding of the mechanism, which describes what happens when a particular ‘‘context plays host to an intervention,’’ thus leading to the outcome.15 Pawson et al.14 also suggested that a close relationship with key stakeholders is needed to ensure the review will inform policy intentions or objectives. A steering committee of key stakeholders, including community advocacy group representatives such as the Council for Older Australians and Advocacy Tasmania, primary care service providers, community leaders, and industry representatives such as Palliative Care Australia, the National eHealth Transition Authority, and the Public Guardianship Board, assisted in refinement of the research question and process.
SEARCH FOR EVIDENCE A systematic search of the peer-reviewed published literature was conducted between January and July 2012. An electronic database search was used, using medical subject heading terms and key word searches, from 1990 to the present, of the following eight databases: Cochrane, PubMed, Embase, ProQuest, CINAHL, Pyschinfo, Google, and Google Scholar. Search terms included the following: advanced and chronic and illness or terminal and care or life-limiting and illness, diabetes, cancer, renal failure, cardiac failure, respiratory failure, COPD (chronic obstructive pulmonary disease), death or dying or morbidity or mortality or terminal, community and dwelling or primary health and/or care, outpatients or primary care, advance and/or care and/or directive or health and directive or advance care plan or end-of-life or end-of-life care plan or enduring power of attorney or enduring guardian ship or conservative therapy, health and professional or doctor or physician or GP (general practitioner) or nurse, model of care or organization or administration, bereavement or satisfaction or anxiety or support or stress and care, e-health, electronic health, and/or medical records.
CODING SCHEME AND DATA ANALYSIS We developed and piloted data extraction forms to systematically extract the data. Data extraction forms for quantitative and qualitative studies were developed to evaluate the quality of each of the studies with an additional form to systematically code which studies contributed to the model and in what categories. Thematic content analysis was used to organize the data around the contexts for the studies, the models that were the interventions, and the outcomes, as well as study design elements. The process of synthesis was conducted by the three authors together. A schema for the model derived from the synthesis was drafted by one author, and full-text articles were then reviewed by all three authors to systematically identify which articles contributed to each of the categories of the model (Table 1).
Results One hundred twenty-five titles met the inclusion criteria. Following removal of duplicates, 71 abstracts were reviewed, identifying 18 studies (9 qualitative and 9 quantitative studies) that met the inclusion criteria for full-text analysis. One study was excluded as it was an opinion piece. Of the 17 studies remaining (Table 2), 3 included electronic information sharing in relation to ACP. Snowballing and citation searching were used to identify relevant policy documents, national frameworks, and conference proceedings. The gray literature included the following: 21 position articles, including national frameworks from Australia, United Kingdom, and Canada; 10 clinical and patient information bulletins; 12 guidelines; 11 books and book chapters; 7 policy documents; 7 clinical statements, 1 evidence brief; and 2 systematic review protocols. The findings of the three studies highlighted that the mechanism of electronic physician reminders accompanied with information to patients showed evidence of effectiveness in increasing the uptake of completing an advance care directive.16–18 However, computergenerated physician reminders, on their own, had no effect on the completion of advance directives in the primary care or community context. An important finding in the study of Heiman et al.16 was that three or more doctor visits was associated with increased completion of and discussion about advance directives (odds ratio = 2.5; 95% confidence interval, 1.6–3.9). This highlights the importance of ACP as a process and the patient–health provider relationship. To understand the evidence that supports robust and effective ACP in the community setting, including information that needed to be communicated electronically, we conducted a synthesis of the 17 studies. Six themes emerged from the literature: information sharing, process, dignity of life (individualized approach), collaborative practice (engagement), initiating conversations, and education
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Table 1. Studies Contributing to the Model by Category CATEGORY Advance care planning as a process
REFERENCES
CATEGORY
REFERENCES
Deutsch et al.7
McCarthy et al.23
Ludwick and Baughman13
Kahana et al.26
Mazzocato et al.15
Department of Health27
Heiman et al.16
Rosenfeld et al.28
Dexter et al.17
Fried et al.29
Yung et al.18
An individualized approach
Table 1. continued
Education (individual and community)
Heiman et al.16
Schiebel et al.19
Schiebel et al.19
Matsui20
Allen et al.21
Allen et al.21
Kahana et al.26
Tierney et al.22
Department of Health27
McCarthy et al.23
Rosenfeld et al.28
Heiman et al.16
Fried et al.29
Schiebel et al.19
Samsi and Manthorpe30
Matsui20
Ko and Lee31
Allen et al.21
Sharing information
Mazzocato et al.15 Seymour et al.25
Hopp24 Seymour et al.25 Kahana et al.26 Department of Health27 Rosenfeld et al.28 Collaborative engagement
Dexter et al.17
(individual and community) (Table 1). From this we derived a model of eACP for older community-dwelling adults with chronic, lifelimiting illness.
Yung et al.18 Schiebel et al.19 Allen et al.21 Tierney et al.22 Hopp24 Department of Health27 Rosenfeld et al.28 Fried et al.29 Samsi and Manthorpe30 Initiating conversations
Deutsch et al.7 Mazzocato et al.15 Dexter et al.17 Yung et al.18 Schiebel et al.19 Allen et al.21 Tierney et al.22
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SHARING INFORMATION Yung et al.18(p.861) noted the documentation of patient end-of-life preferences into healthcare records is problematic. If completed in the first place, they risk becoming misplaced, lost, or retained by individual health providers and agencies and not communicated to other sectors of the healthcare team in different settings. This breakdown in communicating patient care preferences can result in significant negative effects on patients’ end-of-life experience and the subsequent bereavement of family members.18 Schiebel et al.19(p.92) recommended ‘‘. a single location in the Electronic Medical Record for the entry and retrieval of the active order .’’ to minimize the event of desired resuscitation efforts being actively withheld.
INFORMATION THAT NEEDS TO BE SHARED IN AN EACP: ACP AS A PROCESS ACP is a process that is built on over time, which is ideally initiated early, well before the onset of acute or life-threatening events and potential mental incapacity, providing time for the exploration of personal care preferences and access to clinical information.20–22 Acknowledgment of the ongoing process with an inherent requirement to regularly revisit and review care preferences as things
ACP FOR THE PCEHR: A REALIST REVIEW
Table 2. Data Quality Assessment
REFERENCE
YEAR
COUNTRY
STUDY TYPE/DESIGN
QUALITY ASSESSMENT OF ARTICLEa
TITLE
Heiman et al.
2004
United States
RCT
Improving completion of advance directives in the primary care setting: A randomized controlled trial
O
Matsui20
2010
Japan
Quasi-experimental preand post-intervention
Effectiveness of end-of-life education among community-dwelling older adults
O
Bodnar Deren32
2011
United States
Survey
Perceived illness burden, a key to understanding advance care planning in adults nearing the end-of-life
O
Dexter et al.17
1998
United States
RCT
Effectiveness of computer-generated reminders for increasing discussions about advance directives and completion of advance directive forms
O
Tierney et al.22
2001
United States
RCT
The effect of discussions about advance directives on patients’ satisfaction with primary care
O
Wissow et al.33
2004
United States
Quasi-experimental
Promoting advance directives among elderly primary care patients’
O
Schwartz et al.34
2002
United States
RCT (pilot)
Early intervention in planning end-of-life care with ambulatory geriatric patients: Results of a pilot trial
O
Hopp24
2000
United States
Survey
Preferences for surrogate decision makers, informal communication, and advance directives among community-dwelling elders: Results from a national study
O
Allen et al.21
2012
United States
RCT (pilot)
The Promoting Effective Advance Care for Elders (PEACE) randomized pilot study: Theoretical framework and study design
O
Seymour et al.25
2004
United Kingdom
Focus groups (n = 8)
Planning for the end of life: The views of older people about advance care statements
O
Fried et al.29
2009
United States
Focus groups
Understanding advance care planning as a process of health behavior change
O
McCarthy et al.23
2008
UK
Survey
Advance care planning and health care preferences of community-dwelling elders: The Framingham Heart Study
O
Samsi and Manthorpe30
2010
UK
Framework analysis (interviews)
’I live for today’: A qualitative study investigating older people’s attitudes to advance planning
O
Kahana et al.26
2004
United States
Interviews
The personal and social context of planning for end-of-life care
O
Rosenfeld et al.28
2000
United States
Phenomenology
End-of-life decision making: A qualitative study of elderly individuals
O
Ko and Lee31
2009
United States
Survey
End-of-life communication: Ethnic differences between Korean American and non-Hispanic white older adults
O
Yung et al.18
2010
United States
Structured interview multi-regression analysis
Documentation of advance care planning for community-dwelling elders
O
16
a
Using the Critical Appraisal Skills Program.
RCT, randomized controlled trial.
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change is considered important,18,23 best initiated and supported within established healthcare relationships, characterized by a sense of trust and rapport.24,25 Community-dwelling older adults with chronic, life-limiting illness will most often have established relationships with primary healthcare providers built over time.16 However, patients may identify any number of healthcare providers with whom to engage in ACP, necessitating building capacity across the care continuum.26 Interoperability between information technology systems in primary care and the hospital systems is essential.
AN INDIVIDUALIZED APPROACH An individualized, person-centered approach to ACP, where discussions are anchored in what accords dignity and quality of life, as defined by the individual person, is essential. This approach differs from that used commonly in acute care settings, which begin with what interventions should be accepted or refused at the end-oflife.19,27 The person benefits from engaging in a personal inventory on acceptable states and valued activities as the central focus and how these are supported or compromised by different proposed interventions or treatment options.20,27 Ko and Lee31 found higher knowledge of ACP, greater experience with illness and decision-making for loved ones, and perceived severity were strong predictors of end-of-life communication. Higher education has also been suggested to correlate with an increased incidence of having advance directives, and culture has also demonstrated an impact,23,24,26,28,29 with white populations more likely to complete advance directives and discuss ACP with health agencies than other cultures.30 Samsi and Manthorpe30 found predisposition toward planning and attitude to life, belief systems, and spirituality impacted planning. In addition, Kahana et al.26(p.1166) found that ‘‘the propensity to make end-of-life decisions was related more to personal characteristics than to health related circumstances.’’ Ability to access a variety of stored documents, created contemporaneously, is required.
crease.30 The literature identifies, that for clinicians, time constraints, level of skill, and concern about upsetting patients and families are often barriers.22,26,31 In light of these complexities, studies have identified the value of key health providers undertaking facilitator roles to skillfully support the decision-making triad to come together.21 Social workers and nurses have been identified to perform this key role. Schwartz et al.,34(p.1617) for example, recommended that ‘‘having a trained non physician facilitator usually a nurse or social workers with considerable experience in end-of-life care, helps ensure that an adequate dialogue occurs between older people and their healthcare agents or family members.’’ Facilitators can also have a role in identifying documents and information to be sorted on the PCEHR. Allen et al.21 also supported ACP as a multidisciplinary effort.
INITIATING CONVERSATIONS An ‘‘illogical gap in people’s post- and pre-death planning’’25(p.61) persists, with people more prepared to engage with funeral arrangements and will preparation, rather than pre-death issues such as ACP.28,29 The literature also suggests that older people find it difficult to initiate end-of-life discussions with healthcare providers and family members and cite ‘‘a sheer lack of opportunities to express thoughts and concerns relating to future mortal illness.’’25(p.66) Furthermore, a consistent finding was that, if older people did discuss end-of-life preferences, they were much more likely to do so with family members than healthcare professionals.18,23,26,30 Only between 5% and 17% of older people had discussed their preferences with their medical practitioner or other healthcare provider.26,30 This may considerably impact their ability to make informed healthcare decisions.23 The patient level of satisfaction with the clinical encounter appears to increase when healthcare providers incorporate ACP discussions in the consultation.22,28 Time for conversations and to upload information to the PCEHR at the time of the consultation is needed.
EDUCATION COLLABORATIVE ENGAGEMENT ACP is usually a collaborative activity among patients, families, and healthcare providers, often identified in the literature as the decision-making triad.23,25,27 Skillful discussion among this triad is expected ‘‘to facilitate unified decision making that is informed and rooted in patient values.’’23(p.957) Family members or significant others are often considered important mediators between the older person and healthcare providers and advocates, especially when decision-making capacity is impaired.25,27,29 This is taken to its final conclusion with the appointment of a healthcare proxy or an Enduring Guardian. Healthcare providers are able to support discussions, provide important clinical information, and suggest treatment options reflective of patient goals and values.25,27 The effectiveness of the ACP process, to a large extent, relies on the ability of this triad to communicate and work well together. Evidence suggests that for older people the likelihood of communication about end-of-life increases as perceived barriers de-
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Health literacy in older people was identified as a potential barrier to undertaking ACP and completing advance care directives.23,28 In a study by Wissow et al.,33(p.950) doctors reported that the lack of patient understanding with even the basic concepts of ACP had implications for its effectiveness, adding extra time and complexity to the consultation. This study perceived a benefit in patients receiving support from nurses or social workers to understand the legal issues. However, providing written information or an advance care document without the necessary dialogue and ongoing support was shown to have no benefit. The most effective education approach was the use of multiple modalities, such as written information, discussions, and presentation of case studies or vignettes.20,25,33 Community-wide interventions have been shown to increase the percentages of older people engaging in the process.28,33,34(p.1617) The opt-in PCEHR requires older people to complete and upload their own information. This may be problematic and may require access to the system by authorized others.
ACP FOR THE PCEHR: A REALIST REVIEW
Discussion Although the eACP may well be the vehicle to capture and convey patient preferences and important ACP information across various healthcare sites, at the point of care where decisions are being made, a robust process of ACP must be in place in order to develop the eACP. Engaging older people with chronic, life-limiting illness in ACP is a complex area of clinical practice. It involves supporting patient decision-making through what is often a disconcerting process, characterized by multiple exacerbations and periods of stability before the terminal stage is reached.35,36 How respective organizations and healthcare providers currently involved in ACP in Australia perceive eACP needs further exploring. The majority of older people with chronic and complex care needs reside in the community. Primary healthcare providers play a key role in initiating and supporting early ACP, are in a position to assist patients in the complex process of navigating diverse healthcare settings, and are well placed to help older people upload any relevant document. They need to have systems that are well integrated into their current patient software. Unless the key stakeholders involved in ACP—community advocacy groups, older people themselves, and primary healthcare providers—are engaged in the process of specifying and designing what will be part of the eACP in the Australian opt-in PCEHR, it will not be taken up widely in the community as hoped. There have been major investments into the development of electronic health records worldwide, but many of them have failed to deliver the promised benefits to patients and the healthcare system. The Australian Government has invested significantly in the rollout of the PCEHR, which has been dogged by controversy. The dynamic political environment and the change of government have both sped up and slowed down the PCEHR development and rollout. The previous Australian Government Health Minister promoted that advance care plans be part of this record and tried to fast track this process. The use of realist review methodology proved somewhat problematic as stakeholder engagement is part of the process and is seen as essential in ensuring that recommendations can be implemented into policy and practice. We found that stakeholders were keen to have access to the project’s preliminary results.
LIMITATIONS AND STRENGTHS OF THE REVIEW The major limitation for this study was the lack of any reviews and empirically tested models for eACP. To our knowledge, this is the first realist review to inform eACPs as part of the PCEHR. It also contributes to the emerging field of systematic review. This realist review used a meta-synthesis of both quantitative and qualitative studies and incorporated gray literature. Meta-synthesis has a rigorous approach similar to qualitative research, which uses an interpretive approach. Researchers were immersed in the literature, reading and re-reading texts; discussion and reflection among team members continued to seek themes and explanations and to test theories until saturation was reached. This allowed us to examine the intervention
that is ACP in the context (electronic document) for communitydwelling older adults.
Conclusions Electronic systems of information sharing across different healthcare settings can support the provision of end-of-life care that is consistent with older people’s values and preferences. Older people need to be engaged with the process of identifying what information they want to share as part of an electronic advance care plan through their opt-in PCEHR. Electronic advance care plans and advance directives must be readily available to clinicians at the point of care to support decision-making. A standard location in the electronic medical record for entry and retrieval of any active order is needed.
Disclosure Statement No competing financial interests exist.
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Address correspondence to: Isabelle Skinner, MPH&TM, MBA, PhD Nursing and Midwifery University of Tasmania Brickport Road Burnie, Tasmania 7320 Australia E-mail: [email protected] Received: November 18, 2013 Revised: February 25, 2014 Accepted: February 28, 2014
