Qualitative Evaluation of Advanced Care Planning in Early Dementia (ACP-ED)
Qualitative Evaluation of Advanced Care Planning in Early Dementia (ACP-ED)
Qualitative Evaluation of Advanced Care Planning in Early Dementia (ACP-ED)
Abstract
Background: End-of-life-care is often poor in individuals with dementia. Advanced care planning (ACP) has the potential to improve end-of-life care in dementia. Commonly ACP is completed in the last six months of life but in dementia there may be problems with this as decision-making capacity and ability to communicate necessarily decrease as the disease progresses. Choosing the right time to discuss ACP with people with dementia may be challenging given the duration of the illness may be up to nine years. Aims: To explore the acceptability of discussing ACP with people with memory problems and mild dementia shortly after diagnosis. Methods: In-depth interviews were conducted with 12 patients and eight carers who had participated in ACP discussions and six staff members from a memory clinic and a community mental health team who had either conducted or attended the discussions for training purposes. Results: Patients and carers found ACP a positive intervention that helped them think about the future, enabled people with dementia to make their wishes known, and resulted in their feeling relieved and less worried about the future. The importance of sharing the ACP documentation between health service providers was highlighted. Conclusions: This qualitative evaluation of ACP in early dementia has encouragingly positive results which support the wider application of the intervention in memory services and community mental health teams. Strategies are suggested to support the implementation of ACP further in clinical practice.
Citation: Poppe M, Burleigh S, Banerjee S (2013) Qualitative Evaluation of Advanced Care Planning in Early Dementia (ACP-ED). PLoS ONE 8(4): e60412. doi:10.1371/journal.pone.0060412 Editor: Gianluigi Forloni, "Mario Negri" Institute for Pharmacological Research, Italy Received October 20, 2012; Accepted February 26, 2013; Published April 10, 2013 Copyright: 2013 Poppe et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Funding: This project was funded by the Modernisation Initiative End of Life Care Programme 2008-2011. Funded by Guys and St Thomas Charity with support from the Kings College Hospital Charity and South London and Maudsley NHS Foundation Trust Charitable Funds, the Modernisation Initiative is a partnership between local people, acute and primary health and social care, voluntary and independent sector organisations to deliver exceptional end of life services in Lambeth and Southwark. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Competing Interests: The authors have declared that no competing interests exist. * E-mail: [email protected]
Introduction
Dementia is a devastating illness that affects cognitive, behavioural and physical functioning. The number of people with dementia worldwide is estimated to be 36 million. This number is projected to rise to 115 million by 2050 [1]. Research has shown that the quality of end of life care in people with dementia is often poor [2]. The Department of Health for England developed their End of Life Care Strategy to improve the provision of care for all adults at the end of life, and their family and carers [3]. Advance care planning (ACP) is a core element of that programme. ACP refers to a process of discussing an individuals preferences for care they would like to receive at a time when they may no longer be able to make such decisions or their wishes known. While most of the general public (6090%) supports the idea of ACP, only 8% of individuals in England and Wales have completed ACP documentation in comparison with 1020% of individuals in the US, Canada, Australia, Germany and Japan
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[4,5,6]. Little research has been conducted on ACP in dementia. Previous research on non-demented populations suggests that earlier discussions may be associated with an increase in feelings of autonomy [7], maintenance of control, patient satisfaction [8,9] and improved quality of care and reduced stress, anxiety and depression in family members [10]. Where there is no advance care plan to provide information about a patients preference for care, and the patient cannot make their wishes known, their next of kin tends to be asked to make the decisions about what end of life care would best reflect the patients wishes. However, in one third of cases, patient-proxy decisions may be inconsistent [11]. Also carers find making decisions on behalf of the patient difficult, especially around areas such as care homes, legal matters and end of life care [12]. Commonly ACP is completed in the last six months of life, in dementia there may be problems with this as decision-making capacity and ability to communicate necessarily decrease as the
disease progresses. Choosing the right time to discuss ACP with people with dementia may be challenging given the duration of the illness may be up to nine years [5]. The National Institute for Clinical Excellence and Social Care Institute for Excellence [6] suggest that ACP should be discussed while the individual still has mental capacity to make decisions but ACP has not yet been integrated into routine practice in dementia [13]. One reason for this is that there have been concerns that raising issues of end of life care early in dementia might be difficult and unacceptable to people with dementia and family carers. This study was designed to evaluate the acceptability of a systematic dementia-specific approach to ACP discussion.
and carers who agreed were sent an invitation letter containing an information sheet about the interview. Patients and carers were subsequently contacted by telephone to discuss participation. In addition, the nurse and the clinical psychologist who conducted ACP discussions as well as four team members who attended an ACP discussion were interviewed. Data collection. Interview guides were developed based on the research literature. Questions were open-ended and revised iteratively to further explore issues raised. Interviews with patients and carers explored issues around diagnosis, what prompted them to discuss ACP, and an evaluation of the ACP discussion. Staff interviews covered the ACP-ED tool, the ACP discussion, barriers and facilitators to conducting ACP as well as skills and competencies required for discussing ACP. Interviews with patients, carers and staff were conducted by a researcher with extensive experience in dementia research (MP). Interviews lasted an average of 45 minutes. Interviews with patients and carers were conducted in the patients homes; interviews with staff were conducted at their place of work.
Data Analysis
Interviews were audio-recorded and transcribed verbatim. Data from the interviews were separated into meaningful fragments and emerging themes were labelled with codes. The constant comparison method [16] was used to identify similarities and differences between emerging themes. Interviews with the three different groups of participants served as a means of triangulation to allow for a more comprehensive understanding of the topic [17]. MP and a senior qualitative researcher independently coded the initial transcripts and compared coding strategies. Disagreements between the raters were resolved by discussion. A coding book was developed and applied to the remaining transcripts by MP. NVivo 8 software [18] was used to aid the analysis of the interviews.
Results
ACP discussions were held with 16 people with dementia, 14 agreed to be approached for the evaluation. Of these, 12 people with dementia and eight carers consented to be interviewed about their experience of the ACP discussion. The main themes that emerged from the interviews were: motivation for ACP, views of the ACP discussion and timing of the discussion. The main themes emerging from staff interviews were: challenging aspects of ACP, views of the ACP-ED tool, timing of the discussion, barriers and facilitators of ACP and skills and competencies. These will be discussed below, quotations are labelled as P for people with dementia, C for carers and S for staff. See Table S1 for characteristics of participants.
ACP discussions
ACP discussions were conducted with patients from two memory services in south London. The memory services identified patients for ACP discussions either during the diagnostic assessment or from their case load of cases with mild dementia. ACP discussions were conducted by a senior nurse (SBu) and by a clinical psychologist. For training purposes the specialist nurse who conducted the discussions invited members of the memory service to observe the ACP discussions (with the patients and carers consent). This was because a sustainable model for uptake would require that ACP discussions should be conducted and reviewed by memory service staff as an extension of their current role in the future.
of assisted suicide being raised by patients. But it was striking that this was not brought up by patients or carers. One staff member discussed an ACP discussion that had gone well until the subject of end of life care was broached. The carers were upset by the topic and the staff member wondered whether it was too early in the course of the patients illness to discuss end of life care. However, she felt that it was important to discuss the topic while the patient was still able to make such decisions because the family might not necessarily share the patients views about end of life care. Staff reported that patients frequently asked to be given a timescale for dementia progression. However, given the heterogeneity of dementia, staff found it difficult to discuss the disease trajectory in their individual case. They felt that this uncertainty about the duration of the illness made it difficult for patients to plan for the future. Patients lack of understanding of dementia was also cited as a difficult aspect of the ACP discussion, with one staff member indicating that some patients decisions may not have been as informed as they perhaps could have been. Discussing the patients living situation was considered as a potentially difficult topic because patients might find the thought of having to potentially leave their home to go into a care home distressing.
being open minded and not judging patients for their wishes. Good communication skills were another key competency that was identified by staff as well as the ability to manage conflict.
findings of our evaluation due to the small sample size and no conclusions can be drawn about the frequency of attitudes and reactions observed. However we did use good quality qualitative methodology and the views expressed are accurate representations of those of the patients, carers and staff interviewed.
Acknowledgments
We would like to thank all participants who kindly gave their time to be interviewed for this evaluation. In addition, we are very grateful to Joanna Murray for co-coding the initial transcripts and Dr Vanessa Lawrence for providing valuable comments for this manuscript.
Supporting Information
Figure S1 ACP-ED Tool.
Author Contributions
Conceived and designed the experiments: SBanerjee MP SBurleigh. Performed the experiments: SBanerjee MP SBurleigh. Analyzed the data: SBanerjee MP. Contributed reagents/materials/analysis tools: SBanerjee MP SBurleigh. Wrote the paper: SBanerjee MP SBurleigh.
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Table S1 Characteristics of participants.
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