Art & science end of life care

Advance care planning in a community setting Connolly J et al (2015) Advance care planning in a community setting. Nursing Standard. 29, 23, 43-51. Date of submission: October 18 2013; date of acceptance: July 11 2014.

Abstract Aim To evaluate the effects of implementing an advance care planning process within pilot sites in North Ayrshire in 2010, focusing on people with palliative care needs. Method Data were collected from participants in advance care planning training using a questionnaire. Semi-structured interviews were conducted and an audit of documentation was undertaken. Results Thirty nine questionnaires were returned, a response rate of 16%. Twenty four out of 25 (96%) participants rated the training as having improved their understanding of the advance care planning process. The general consensus in interviews was that advance care planning is a worthwhile process. Participants reported patients achieving their preferred place of end of life care and greater consultation regarding hospitalisation. Conclusion Within the pilot sites, advance care planning training enhanced the ability of professionals to implement the advance care planning process and record the wishes of patients and residents.

Authors Josaleen Connolly Clinical improvement practitioner, cancer-palliative care, Clinical Improvement Unit, NHS Ayrshire and Arran; Stuart Milligan Lecturer, School of Health, Nursing and Midwifery and education facilitator, University of the West of Scotland and Ardgowan Hospice; Elaine Stevens Lecturer in cancer and palliative care and education manager, University of the West of Scotland and The Ayrshire Hospice; Susan Jackson Lecturer in cancer and palliative care, University of the West of Scotland and Accord Hospice; Kevin Rooney Consultant in anaesthesia and intensive care medicine, and professor of care improvement, Royal Alexandra Hospital and University of the West of Scotland, Scotland. Correspondence to: [email protected]

Keywords Advance care planning, documentation, palliative care, training

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THE SCOTTISH POPULATION is living longer with chronic and more complex diseases (Scottish Government 2013). Shifting the Balance of Care, a framework intended to bring about better health outcomes for at-risk individuals and provide services that reduce health inequalities and improve health outcomes, has been a Scottish Government priority over the past decade (NHS Scotland 2013). The framework centres on preventive measures and proactive modalities, which aim to change the way ill health is managed. Care is geared toward swifter, person-centred services and continuous, integrated support delivered closer to the person’s home, as opposed to fragmented episodes of hospital care (NHS Scotland 2013). People with chronic or malignant disease are likely to be admitted multiple times to acute services for treatment and management (Scottish Government Health Delivery Directorate Improvement and Support Team 2010a). Some people are admitted to hospital for treatment when there is nothing more that can be done to reverse their deterioration. Inevitably, some of these admissions end with the death of the person, even though hospital may not have been the preferred place of end of life care (O’Brien and Jack 2010). Death in a hospital environment, when the individual’s known preference would have been elsewhere, has economic, moral and ethical implications. The cost of inappropriate hospitalisation often receives most attention, whereas individual choice and preference for care are overlooked (Scottish Government 2011a). The advance care planning process is part of a palliative care approach used to facilitate discussion and documentation of personal wishes and the individual’s preferred place of care in the last days of his or her life (Baker et al 2012). This process can be used to anticipate needs when the person concerned no longer has the capacity to make decisions about his or her own care (Baker et al 2012). Advance care planning refers to choices and wishes regarding end of life care. Anticipatory care planning refers to care and treatment of people with long-term conditions. The terms may be used interchangeably. Advance care planning

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Art & science end of life care may be beneficial for people receiving care, their families and healthcare professionals when it is implemented appropriately. The literature suggests that the main benefits are increased hope and satisfaction with care that is received, and reduced need for frequent hospital admission (Davison and Simpson 2006, Baker et al 2012). In 2010, advance and anticipatory care planning were promoted at government level as being ‘an inclusive, collaborative and proactive approach to planning for future care needs’ (Scottish Government Health Delivery Directorate Improvement and Support Team 2010b). Significant inequalities were evident in the provision of palliative and end of life care in Scotland (Audit Scotland 2008). Most individuals with a life-limiting illness receive care in their own homes during the last year of their life and would prefer to die at home (Sue Ryder 2013). However statistics show that the majority of people die in hospital (O’Brien and Jack 2010). As a result, the Scottish Government (2008) set out actions for every health board to work towards, to improve access to and quality of palliative and end of life care. The aims were to ensure the availability of high-quality palliative care, based on an individual’s needs rather than diagnosis or place of care. Furthermore, it identified that better care planning, effective communication and improved co-ordination were beneficial to the process (Scottish Government 2008). A second document, Living and Dying Well: Building on Progress (Scottish Government 2011b), recognised advance care planning as a tool to record the discussion and plans of individuals and a method to improve co-ordination and delivery of appropriate end of life care. Advance care planning was recognised to benefit individuals, leading to fewer unwanted admissions to hospital, especially towards the end of life (Scottish Government 2011b). In 2009, the hospital standardised mortality ratio case note review revealed that 30% of hospital admissions in NHS Ayrshire and Arran in south west Scotland were for end of life care (Information Services Division Scotland 2010). Further investigation showed no evidence of advance care planning in the case notes of 45 out of 51 deceased people (88%). As a result, palliative and end of life care was identified as a priority for education and improvement. A small working group was established in November 2010 to develop an advance care planning training schedule and documentation, based on the guidance of the Scottish Government (2011c) short-life working group. Emphasis was placed on evolving sensitive discussion between the healthcare professional and the

person receiving care over a period of time, and not wholly on completion of the advance care planning document. Training in advance care planning was based on a resource pack commissioned by NHS Education for Scotland (2010) enabling facilitators to support local training. Multiple, free advance care planning training sessions were scheduled from January 2011 and delivered to staff members from NHS and social care, as well as those from private care homes, community nursing and GPs within the pilot sites, four towns in North Ayrshire. The training consisted of three sessions on the purpose of advance care planning, ethical issues in advance care planning and timing and triggers in advance care planning, and two optional sessions on communication skills, one theoretical and one practical. This article describes the findings of the evaluation of implementing advance care planning in the area. It discusses the effect on attitudes and practices of local health and social care professionals.

Aim The aims were to ascertain whether the advance care planning process would reduce avoidable hospital admission of individuals needing palliative care by April 2013, and whether individuals’ preferred place of end of life care was achieved. It was not possible to identify the number of hospital admissions that may have been prevented by implementing advance care planning in the identified areas. This was a result of other factors, which may have contributed towards hospital admission, as well as the anticipated difficulty of identifying a large enough sample from which to show statistically significant conclusions. Therefore, the evaluation aimed to use qualitative measures to identify changes in advance care planning behaviour and practice.

Method Evaluation of the implementation of advance care planning in the pilot sites took place in September 2012, following approval by the research, development and evaluation team within NHS Ayrshire and Arran. Data collection involved an electronic questionnaire, semi-structured interviews and a documentation audit. A convenience sampling approach was used to identify and invite participants to take part in the interviews and the audit (Saumure and Given 2008). The questionnaire was piloted with members of the implementation and evaluation teams to ensure

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that the required data were generated. Electronic questionnaires (n=174) or paper substitutes (n=74) were distributed to 248 participants who had attended the advance care planning training in the period 2011-12. Nine individuals were interviewed, of which four worked in care homes as nurses, four worked in community nursing and one was a GP. Interviews were based on a predetermined topic guide, which explored effects in three areas:  Attitudes and behaviour of staff members.  Self-reported behaviour of staff members in regard to completion of advance care planning documentation.  Outcomes for individuals. Each interview took no more than 45 minutes. Each participant was informed about consent and their voluntary participation before taking part. Confidentiality was assured by identifying recordings and transcripts with an anonymous study number. Interviews were audiotaped, transcribed and analysed using simple thematic analysis methods. This strategy consists of reading and re-reading interview transcripts, identifying patterns and organising the text to generate descriptive themes (DiCicco-Bloom and Crabtree 2006). Each participant was assured of anonymity and confidentiality throughout. The documentation audit involved examining a sample of 12 completed advance care planning documents (with personal details removed) from two care homes and two community nursing teams. A predetermined paper guide was used for the audits. This enabled the evaluation team to identify which parts of the advance care planning document were completed or uncompleted and which provided evidence of periodic review and documented decisions being acted on.

experience was ranked slightly higher than the theoretical component. The respondents were asked how much their understanding of the advance care planning process had been influenced by attending the training, with 24 out of the 25 respondents who answered the question reporting improved understanding (Table 1). Confidence to discuss future plans with individuals receiving care was reported to have increased by all 18 respondents who answered this question (Table 2). Overall, 24 out of 38 (63%) respondents reported that having an advance care planning discussion with people in their care and completing an advance care planning document was part of their role. The majority of respondents (34/39, 88%) indicated that the training would help them to complete the advance care planning documents with service users.

Interviews

The following themes emerged from interviews with care home nurses, community nurses and the GP: attitudes and behaviour of staff, self-reported behaviour regarding completion of advance care planning documentation, and outcomes for individuals. These are discussed in turn. Short, verbatim quotes are included to illustrate the themes. Attitudes and behaviour of staff The general consensus was that advance care planning was a worthwhile process and beneficial for individuals living in care homes, especially those with dementia, and for those living in the community:

TABLE 1 Responses to understanding advance care planning post-training Response

Results

Improved a great deal

Questionnaires

Improved quite a lot

In total, 39 questionnaires were returned, giving a response rate of 16%. The majority of the respondents (54%) worked in a community setting and had attended the advance care planning training during 2012. The respondents ranked the three advance care planning sessions within the training according to the usefulness of each. Twenty nine respondents (74%) ranked the ethical issues associated with implementing advance care planning first. The session on triggers and tools to recognise the beginning of the advance care planning process was ranked second and the session on the purpose of advance care planning was ranked third. In the communication skills sessions, the practical

No. of respondents (%) 4 (16) 10 (40)

Improved a medium amount

7 (28)

Improved a little

3 (12)

Did not improve at all

1 (4)

TABLE 2 Confidence of respondents to discuss advance care planning Response

No. of respondents (%)

Increased a great deal

1 (6)

Increased quite a lot

8 (44)

Increased a medium amount

8 (44)

Increased a little

1 (6)

Did not increase at all

0

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Art & science end of life care ‘I think it is worthwhile. I think it was something district nurses always did, but there was never anything officially documented or communicated to other agencies’ (Community nurse 4). Some participants recognised advance care planning as beneficial when admission to hospital was required and regarded the information contained within the document as helping to improve communication between healthcare professionals involved in caring for the individual at home and in hospital. Some participants considered that the advance care planning process increased the likelihood that an individual was returned home from hospital much earlier. Other respondents suggested individuals who had an advance care plan had a decreased incidence of a hospital admission. The GP interviewed had a positive regard for the advance care planning process:

‘Doing advance care planning with people with dementia before they lose capacity’ (GP). The advance care planning document was perceived to be a beneficial checklist during or after a discussion with an individual about his or her future care and wishes: ‘The document comes in handy reminding you, if the patient’s condition is changing, to have more of these conversations’ (Community nurse 5). The advance care planning process was regarded as a way to involve and empower individuals to plan their care and include their families: ‘Advance care planning is also discussed at the residents’ meeting’ (Care home nurse 1).

‘The document makes it easier to raise a difficult topic, then to leave it until the patient feels ready to discuss it’ (GP).

‘Tending to have more discussions around practical issues such as wills, carer support, the needs of the family, etc.’ (GP).

Nurses working in care homes were less positive about the advance care planning process. They identified a number of practical challenges. These included the perception that advance care planning documentation was not easy to use, the reluctance of individual residents or family members to engage in the advance care planning process, the reluctance and lack of knowledge of other professionals outside the pilot sites when involved in discussing the shared care of individuals and perceived ambivalence from doctors (GPs and out-of-hours’ doctors). However, some noted that doctors were more likely to be influenced in their decision whether or not to admit an individual to hospital, once an individual’s advance care plan was presented and backed up, alongside the wishes of the family. Both groups of nurses interviewed showed that they had become more familiar with the advance care planning process since the training. However, their attitudes to the process were mixed. Some examples of these are shown in Table 3. The GP also reported a change in attitude:

Nevertheless, several participants were cautious when addressing advance care planning with individuals who were resistant to the discussion:

‘I always thought about anticipating care needs… this has probably made me more confident talking about preferred place of care and death earlier’ (GP). All those interviewed regarded the introduction of advance care planning as having led to changes in their thinking and in caring for individuals at the end of life. For example, it led to taking a proactive approach and to beginning the advance care planning process earlier with identified individuals:

‘We can leave it with the person and go back another day to discuss it’ (Community nurse 5). Respondents provided a variety of views on how likely it was that a completed advance care plan would enable an individual’s preferences for his or her end of life care to be achieved. Care home staff felt that an individual’s advance care plan document could be used as evidence for both medical staff and family members of that person’s wishes. However, it was acknowledged that the doctor could overrule the wishes of the person and the advance care plan document, if it went against what the doctor deemed to be best for the individual: ‘I think having the documentation is not enough. You also need to have conversations with colleagues, hospital staff, accident and emergency staff’ (Community nurse 5). ‘I hope that if they don’t manage to die in their chosen place, then they would know that everything had been done to enable that and it has not been possible. And hopefully they will have been able to be cared for in their second choice’ (GP). Self-reported behaviour regarding completion of advance care planning documentation It was evident that some staff prioritised advance care planning more than others. For those who had experienced

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a positive outcome by implementing advance care plans, this motivated further use of the document. However, other participants stipulated why the advance care planning document was not completed: ‘A resident may have dementia and no family member to answer for them’ (Care home nurse 2). ‘The discussion may have been initiated but the resident was not yet ready to have the conversation’ (Care home nurse 2). ‘The person may not have been told his or her diagnosis/prognosis yet’ (Community nurse 6). There were valid reasons given for omissions and as to why individuals had no advance care planning documentation. It was evident that this depended on the individual circumstances. Other responses from care home nurses hinted at more institutional barriers including: ‘The advance care plan is not classed as a mandatory plan, so it is not included in the admission documentation’ (Care home nurse 7). ‘Some people [staff] think it is not appropriate’ (Care home nurse 8). Care home staff members could readily identify which parts of the advance care plan document were or were not completed: ‘The “likely prognosis” box often gets left. I don’t think nurses feel that is their responsibility’ (Care home nurse 7). However, the sections most likely to be completed included:

‘… the very invasive things like surgery and PEG [percutaneous endoscopic gastrostomy] feeding’ (Care home nurse 7). ‘Usually place of death is filled in. They invariably say “here”’ (Care home nurse 7). ‘The DNACPR [do not attempt cardiopulmonary resuscitation] is never missed. It is done by the GPs. We are addressing it quite vigorously. The impact of not having a DNACPR is greater than the impact of not having an advance care plan’ (Care home nurse 2). In contrast to care home staff, the GP identified DNACPR as the aspect that was most likely to be missed: ‘That is the hardest question to know when to discuss. It can get put off for various reasons. It is sometimes left until the professional perceives that the patient is “ready” to contemplate not having resuscitation’ (GP). The part most often omitted by community nurses was also the DNACPR section. Participants regarded DNACPR as a discussion that should be conducted by the GP, but recognised the reticence among other colleagues and the individual’s family to approach the subject. In a palliative care context, the key aspect of an advance care plan is the person’s preferred place of care. This would be considered in the event of any change or deterioration in the person’s clinical condition. All respondents disapproved of disregarding an individual’s documented advance care planning wishes, but were able to recall situations where the contents of an individual’s advance care plan were not considered. Table 4 and Box 1 provide

TABLE 3 Attitudes of care home and community nursing staff to implementing the advance care planning process Positive attitudes

Negative attitudes

‘Feeling more comfortable about approaching people to have these conversations’ (Care home nurse 8).

‘I find it difficult to go through a form like that. We have limited time. Some of the issues covered are none of my business’ (Community nurse 6).

‘Becoming more confident and comfortable about the process’ (Care home nurse 8).

‘Having to complete [advance care plans] routinely for everyone (“a tick-box exercise”)’ (Care home nurse 8).

‘Until this [advance care plan] came out, it was just a matter of “you went in and did this”. Now we try to make sure we are representing what the patients are wanting’ (Community nurse 6).

‘Having to duplicate information that was always collected, or a process that was already being followed’ (Care home nurse 7).

‘Feeling that the document supports nurses’ (Care home nurse 2).

‘We have an over-protective attitude to some patients, which means we don’t go there’ (Community nurse 5).

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Art & science end of life care some explanations why advance care plans were not acted on or not completed. Outcomes for individuals Many respondents provided examples of situations where the presence of an advance care planning document enabled preferred wishes for care to be achieved. The following are not direct quotes, but summarise the actions that community nurses felt enabled people’s wishes to be achieved:  Act immediately when an individual is admitted to hospital to arrange for them to get home without delay.

TABLE 4 Reasons why advance care plans are not acted on in care homes Duty of care

‘If a DNACPR is not filled out, we still have a duty of care to follow. In the event of a cardiac arrest we would have to call 999. The [advance care plan] may say the resident doesn’t wish to be admitted, but it will be disregarded in such instances’ (Care home nurse 2).

Unmet care needs of the individual

‘Their most relevant needs are what determine where they die. They will be where their needs can be met. They may be moved if the client’s needs become more than we can provide’ (Care home nurse 7).

Medical decision

‘The GP may still feel a hospital admission would be of benefit. They think they have to try everything they can. They need to know they have tried everything’ (Care home nurse 2).

Family uncertainty

‘[Advance care plans] get acted upon when there is very clear agreement from the family. When there is less clarity, [advance care plans] are not likely to be acted upon. For instance, if the relative is very anxious about the deterioration in the person’s condition, you would have to choose hospital’ (Care home nurse 7).

 Be aware of individuals in the community and anticipate their needs.  Discuss potential scenarios of crisis with the family.  Remember that palliative care is not for malignant conditions only and that advance care planning discussion is appropriate for a variety of diagnoses when the individual is ready.  Develop good inter-agency communication and agreement about how potential crisis situations should be managed for individuals. Several examples were provided related to situations where an advance care plan would have achieved a more positive outcome for the person and his or her family. The following summarise factors identified as leading to negative outcomes:  Unanticipated complications or new developments in the patient’s or carer’s condition, needs or circumstances.  Unrealistic expectations of families and given to families.  Refusal of services and support by families.  Advance care planning information not shared with relevant others. Respondents also provided their views on whether an advance care plan helped to prevent inappropriate admission to hospital: ‘A decision not to admit someone to hospital does not happen on the basis of the advance care plan. It happens on the basis of the discussion that staff have with the GP at the time’ (Care home nurse 2). ‘There have been quite a few end-stage, long-term condition patients who have stayed at home because we have had these conversations. We have done anticipatory care planning and advance care planning’ (Community nurse 4).

Documentation audit

BOX 1 Reasons why advance care plan documentation is not completed in community nursing ‘Some people might not want to have those discussions’ (Community nurse 6). ‘For some people the right time has not arrived’ (Community nurse 4). ‘Some people refuse to, or resist completing the document’ (Community nurse 3). ‘The person may not have been told his or her diagnosis/prognosis yet’ (Community nurse 6). ‘The conversations may have taken place but have not yet been documented’ (Community nurse 6). ‘Some nurses are more proactive about having these conversations than others’ (Community nurse 6). ‘One member of the team may not have completed his/her bit yet’ (Community nurse 5).

Each of the four sites visited was asked to provide a sample of six completed advance care planning documents for audit. Only 12 documents were made available in total. This suggests that the actual number of advance care plans in use may not have been high. Nevertheless, the level of completion of individual documents was generally good, averaging 90%, although there was a consistent pattern with community nurses omitting the DNACPR section of the document. Few other conclusions can be drawn from this part of the evaluation. Those interviewed gave numerous reasons why some people had advance care plans and others had not. Some individuals were considered not ready to have the advance care planning discussion

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because they had not been told their diagnosis and/or prognosis, or the time was not felt to be right. Some advance care planning conversations had been initiated, but had not yet been completed and, therefore, had not been documented. Some individual patients or residents declined the opportunity to complete an advance care planning document. There was also evidence that some nurses were more proactive than others in the initiation of the advance care planning process.

Discussion Advance care planning training was introduced in North Ayrshire to improve the advance care planning process. The training was intended to reduce avoidable hospital admission of individuals requiring palliative care and to increase the achievement of individuals’ preferred place of end of life care. Post-training the advance care planning process was evaluated using a questionnaire, interviews and a documentation audit. The number of responses from the questionnaire was small and, therefore could not be regarded as representative for all those who attended the advance care planning training. Those who did respond regarded the training as having helped them in the initiation of advance care planning discussions. They reported being enabled to engage in the advance care planning process and being aware of the importance of a completed advance care plan document. Some nurses had not yet had the opportunity to complete an advance care plan document, while others were already implementing the advance care planning process. Munday et al (2007) stated that an individual who has the opportunity to express their wishes is more likely to achieve his or her desired outcomes. However, avoidance of discussions about future wishes on the part of the healthcare professional could deprive individuals of the opportunity to participate in important decisions (Rich and Abel 2009). Most participants reported the positive effect that the introduction of advance care planning was having and their attitudes were more positive than negative. However, there were some negative attitudes expressed. Weiner and Cole (2004) describe a lack of cognitive and emotional skills as the main barriers to clinicians’ decision making in end of life care. They suggest that there is a need to develop communication skills for healthcare professionals engaged in advance care planning discussions. Furthermore, little is known about the effect such discussions have on the professional and the personal fears they may have about discussing such an emotive subject (Munday et al 2007).

A number of those interviewed stated that the principles of advance care planning were not new to them, although the process and documentation may have been, and had not affected their practice. However, most cited examples of how they were practising differently. The overall aim of advance care planning is to increase the incidence of individuals achieving the care they want at the end of life in their chosen place. The majority of respondents were positive regarding the effect that advance care planning will have on this outcome. They agreed that, in principle, individuals with a completed advance care plan would be more likely to die in their chosen place, while others identified certain circumstances where this may not be achievable. Munday et al (2007) support both these points, emphasising issues that may influence individual choices, including the fact that their preferred place of death may change throughout their illness. Factors were identified that led to no record of an advance care plan, or influenced the level of completion of any advance care planning documents which were initiated. Parts of the document that tend to be omitted were identified, in particular the DNACPR section, as well as the reasons for omission. However, situations can still arise where the advance care plan is not acted on or is overruled, even where there is evidence that an advance care planning discussion has taken place and the document is completed satisfactorily. Stewart et al (2011) found several barriers to advance care planning in care homes, including individuals who lacked capacity to discuss their end of life wishes, unforeseen medical events, reluctance of individuals and families to participate, cultural beliefs and conflict between families and staff members regarding preferred place of care. Community nurses perceived advance care planning as worthwhile, but were concerned about the timing of end of life discussions. They commented that culturally open discussions around such emotive areas do not often happen within primary care, or in hospital, until the last days of the individual’s life (Seymour et al 2010). Participants could easily recall situations where advance care plans led to individuals achieving their wishes. The quality, diversity and frequency of examples cited by participants were striking. However, some uncertainty was noted. In some situations the full process of advance care planning was not carried out, although it was found that advance care planning was delivering preferred outcomes for individuals. In addition, there is some evidence that advance care planning is leading to prevention of unnecessary hospital admissions and that the advance care planning process is being

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Art & science end of life care considered when discharging individuals from hospital to their preferred place of care (Caplan et al 2006). In addition, participants could recall several cases where end of life care choices and wishes were not met. The results of the documentation audit suggest that practice varies in each care setting and between teams and individuals. There is evidence of a rigorous and comprehensive approach to advance care planning in some teams, demonstrated in their documentation. In these settings, the overall attitude towards advance care planning documentation was commitment to a thinking-ahead philosophy. There was clear evidence in advance care planning documentation of recording essential information and using the individual’s own words, indicating that person-centred care was part of practice. It was evident that senior members of staff promoted a proactive approach in anticipating care and were committed to ongoing education of the workforce. As a result, staff members appeared supportive, which seemed to lead to completion of the advance care planning documentation. Rich and Abel (2009) support the proactive approach, but also emphasise the need for excellent communication skills and sensitivity in healthcare professionals undertaking such discussions. Furthermore, Davison and Simpson (2006) recommend a shift from the traditional model of giving information and completing documentation to a person-centred process that encompasses practical aspects, such as enabling individuals to make choices and putting their affairs in order. However, other teams and settings did less well in terms of the standard of completion of their documentation of advance care planning discussions. The small number of plans made available for review, together with the number of incomplete documents, suggest that a consistent approach was absent. Reasons for these differences could be external influences, such as the overall culture of the organisation, the ability to retain and rotate senior staff, and the absence of quality leadership. Identifying individuals in the last year of life is difficult (Munday et al 2007) and may be among the reasons why advance care planning discussion is delayed or not completed (Seymour et al 2010). Advance care planning documentation provided by community nursing teams indicated that conversations regarding future care and anticipated needs of individuals were consistently taking place. Much of this information was documented within the advance care plans presented for review. However, the small number

of completed documents available for review may suggest that further monitoring of practice is required. Davison and Torgunrud (2007) note that measuring the number of completed advance care plans is not sufficient. They suggest measuring the quality of an individual’s experience by indicating whether their preferences were achieved.

Recommendations

Based on the findings of the evaluation, and evidence from the literature, the following recommendations are made for the improvement of advance care planning. There is a requirement for:  Relevant, detailed and timely conversations.  Conversations ideally to take place where there is an established relationship between healthcare professional, individual and family.  Conversations to be recorded in a format that makes the information accessible to present and future participants in the individual’s care.  Records to be kept up to date through timely review, with evidence of regular dialogue between all involved.  Advance care planning information to be communicated to the individual’s GP and, if appropriate, to be accessible by the out of hours’ services, hospitals and other agencies.  Local policies to be agreed across agencies to encourage adherence to the advance care planning approach.  Training to be made available to inform and remind staff of the importance of the advance care planning process.

Conclusion Overall, the advance care planning training improved the knowledge and skills of those who had participated in the training and practice. Most participants expressed positive views about advance care planning, although there was variation in attitudes, which seemed to influence the extent to which the advance care planning process was implemented. There were barriers to implementation of the advance care planning process, but there was also evidence of lessons being learned about what works well. The documentation review suggested that there was variation in attitudes to and practice in completing the advance care planning document. Despite this, there were several examples of good practice demonstrating occasions where the advance care planning process was applied appropriately and communicated effectively, and an individual’s choices were achieved, including their preferred place of care NS

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Encyclopaedia of Qualitative Research Methods. Sage, Thousand Oaks CA. Scottish Government (2008) Living and Dying Well: A National Action Plan for Palliative and End of Life Care in Scotland. Scottish Government, Edinburgh. Scottish Government (2011a) NHS Scotland Efficiency and Productivity: Framework for SR10. Scottish Government, Edinburgh. Scottish Government (2011b) Living and Dying Well: Building on Progress. Scottish Government, Edinburgh. Scottish Government (2011c) Working Group Progress and Recommendations. www.scotland. gov.uk/Publications/2011/01/ 27090834/6 (Last accessed: January 15 2015.) Scottish Government (2013) Long Term Conditions. Scottish Government, Edinburgh. Scottish Government Health Delivery Directorate Improvement and Support Team (2010a) Long Term Conditions Collaborative: Improving Care Pathways. Scottish Government, Edinburgh.

Scottish Government Health Delivery Directorate Improvement and Support Team (2010b) Anticipatory Care Planning: Frequently Asked Questions. Scottish Government, Edinburgh. Seymour J, Almack K, Kennedy S (2010) Implementing advance care planning: a qualitative study of community nurses’ views and experiences. BMC Palliative Care. 9, 4. doi:10.1186/1472-684X-9-4. Stewart F, Goddard C, Schiff R, Hall S (2011) Advance care planning in care homes for older people: a qualitative study of the views of care staff and families. Age and Ageing. 40, 3, 330-335. Sue Ryder (2013) A Time and a Place: What People Want at the End of Life. www.sueryder.org/~/media/ Files/About-us/A-Time-and-aPlace-Sue-Ryder.ashx (Last accessed: January 15 2015.) Weiner J, Cole S (2004) Three principles to improve clinician communication for advance care planning: overcoming emotional, cognitive, and skill barriers. Journal of Palliative Medicine. 7, 6, 817-829.

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Advance care planning in a community setting.

To evaluate the effects of implementing an advance care planning process within pilot sites in North Ayrshire in 2010, focusing on people with palliat...
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