Discussion: perceptions of advance care planning with frail and older people

Discussion: perceptions of advance care planning with frail and older people ORDER NOW FOR CUSTOMIZED AND ORIGINAL ESSAY PAPERS ON Discussion: perceptions of advance care planning with frail and older people For your own article, could you follow all of the methods or were some of them unclear? What about the results? Was it clear how the results were supported by the analyses or was there a gap in explaining how the authors got from the raw data of focus groups to their conclusions about the themes? Discussion: perceptions of advance care planning with frail and older people As the variables of “number of years in practice, race, sex, age” can all easily be quantified or are quantitative variables, did the study report any of the basic statistics related to these variables> . If so, did they divide opinion by any of these variables? We could ask if men and women had different opinions or if opinion varied with age or race. If any of that was done, the work would be mixed methods research. Did the study mention how they coded the focus group data or how much work was involved? What about the sample size? How many people were in the study? I like to ask questions about methods because we can only understand a study if we understand its methods and results sections. If we don’t understand those sections, we can only see the authors’ claims and opinions. . For a final question, what is the quality of that journal and how would we know? Reference Sharp, T., Malyon, A., & Barclay, S. (2018). GPs’ perceptions of advance care planning with frail and older people: a qualitative study. British Journal of General Practice , 68 (666), e44. Retrieved from http://search.ebscohost.com.proxy-library.ashford…. gps____perceptions_of_advance_care_planning_with.pdf Research Tim Sharp, Alexandra Malyon and Stephen Barclay GPs’ perceptions of advance care planning with frail and older people: a qualitative study Abstract Background Frail and older people are estimated to account for 40% of deaths. Despite conversations about end-of-life care being an important component of the national End of Life Care Strategy, there is a marked disparity between the majority who would like to discuss advance care plans, and the minority who currently have this opportunity. Aim To investigate the attitudes of GPs to advance care planning (ACP) discussions with frail and older individuals. Design and setting Focus group study with GPs in Cambridgeshire between September 2015 and January 2016. Method Five focus groups with 21 GPs were purposively sampled to maximise diversity. Framework analysis was used to analyse transcripts and develop themes. Results Although some GPs were concerned it might cause distress, the majority felt that raising ACP was important, especially as preparation for future emergencies. Knowing the individuals, introducing the idea as part of ongoing discussions, and public awareness campaigns were all facilitators identified. Several considered that service limitations made it difficult to fulfil patients’ wishes and risked raising unrealistic patient expectations. Other barriers identified included uncertainty over prognosis and difficulties ensuring that individuals’ wishes were respected. Conclusion Most GPs viewed ACP as important. However, their enthusiasm was tempered by experience. This study highlights the difficulties for GPs of encouraging dialogue and respecting individuals’ wishes within the constraints of the existing health and social care system. National publicity campaigns and encouraging patients to prioritise healthcare outcomes could help GPs raise care preferences without causing a detrimental impact on patients or raising unrealistic expectations. Once patients agree their care preferences, they need to be documented, accessible, and reviewed by all relevant health and social care providers to ensure that their wishes are respected, and plans amended as their circumstances change. Keywords advance care planning; focus groups; frail elderly; general practice; palliative care. e44 British Journal of General Practice, January 2018 INTRODUCTION For an unwell older patient, a simple call for help may initiate a rapid series of events. An ambulance or clinician may be called, admission to hospital may be arranged, and a range of investigations undertaken. Although hospitals may well be a good place to care for many older patients, some may prefer not to be admitted and to be cared for in other ways. Finding ways of understanding and responding to individuals’ preferences represents a challenge for healthcare professionals, especially at points of crisis when their ability to make decisions over their care may be limited. Advance care planning (ACP) is the process that allows individuals and their healthcare professionals to develop a shared understanding of their health and potential future care needs. It allows the individual the opportunity to understand their personal care goals, and to think about preferences for future care. Discussion: perceptions of advance care planning with frail and older people This can be recorded as a statement of preferences and wishes or a more formal legal document. The national End of Life Care Strategy1 highlighted the importance of care planning, and the recent Ambitions for Palliative and End of Life Care 2 included an ambition for individualised care, with each person being offered the opportunity to create an individualised care plan. ACP is perceived to empower patients and enhance rather T Sharp, MA, MRCGP, GP, former academic clinical fellow in general practice; S Barclay, MA, MD, MSc, FRCGP, university senior lecturer in palliative care and general practice, Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge. A Malyon, BA(Hons), MSc, RGN, nurse researcher, Cambridge University Hospitals NHS Foundation Trust, Cambridge, Cambridge. Address for correspondence Tim Sharp, Department of Public Health and than diminish hope,3 with growing evidence that it improves end-of-life care, including increasing satisfaction among patients and their relatives.4,5 In Scotland, the NHS launched a major campaign to promote care planning, to encourage conversations, and to help people have more control and make informed choices over the care they want to receive.6 An increasing proportion of the UK population are living into frail old age, with multiple comorbidities but no single overriding diagnosis; this ‘frailty trajectory’ is estimated to account for 40% of deaths7 and is often associated with unpredictability over a prolonged time course.8 However, a recent review found that most specialist palliative care remains focused on patients with cancer, even though they account for only one-third of deaths, and that the ‘oldest old’ were the least likely to access specialist palliative care.9 A systematic review by the authors7 found a marked disparity between the majority of frail and older individuals who would like to discuss advance care plans, and the minority who currently have this opportunity. This raises important questions if the wishes of this patient group are to be respected. GPs have a central role in leading and coordinating the care of frail older individuals in the community. The recent ‘2% Direct Enhanced Service’10 from NHS England incentivised GPs to identify and develop Primary Care, Institute of Public Health, Forvie Site, Cambridge Biomedical Campus, Cambridge, CB2 0SR, UK E-mail: [email protected] Submitted: 5 April 2017; Editor’s response: 13 June 2017; final acceptance: 11 August 2017. ©British Journal of General Practice This is the full-length article (published online 19 Dec 2017) of an abridged version published in print. Cite this version as: Br J Gen Pract 2017; DOI: https://doi.org/10.3399/bjgp17X694145 How this fits in This focus group study investigated the reasons for the disparity between the majority of frail and older people who would like discussions over their future care and the minority who have the opportunity to do so. It found that, although a minority of doctors are concerned that these conversations can cause distress, the majority view them as important. This enthusiasm was often tempered by their experience, in particular the impact of limitations in services and concerns over raising unrealistic expectations, concerns not well documented by other studies. care plans, and to offer more support to at least 2% of their practice population felt to be most at risk of an unplanned hospital admission. The 2017–2018 GP contract in England requires practices to identify patients who are living with moderate or severe frailty.8 For those living with severe frailty the practices will deliver a clinical review including an annual medication review, a falls risk assessment, and, where appropriate, individualised goal setting. Aims This study focused on frail older people who have no single overriding diagnosis, seeking to understand more about doctors’ attitudes to discussions between individuals and healthcare professionals about their future care. With regard to conversations with frail or older people about care at the end of life, it sought to understand: •?What are GPs’ experiences of these conversations? •?What are GPs’ attitudes to holding these conversations? •?What are GPs’ attitudes to the timing of these conversations? •?What are the conversations? barriers to these •?What might facilitate these conversations? METHOD Focus groups were held with GPs across Cambridgeshire between September 2015 and January 2016. They were purposively sampled to maximise participant diversity by sex, practice location, and years in practice. Groups comprised between three and six GPs; they were held following a local commissioning group (LCG) clinical governance meeting (n = 1), after LCG board meetings (n = 2), in a rural practice (n = 1), and during a ‘First5’ meeting of GPs in their first 5 years in practice (n = 1).Discussion: perceptions of advance care planning with frail and older people Participation was voluntary and written informed consent was obtained. No financial inducement was offered, but participants were given a certificate to recognise their involvement. Twenty-one GPs participated in five focus group discussions from 15 different practices across Cambridgeshire, representing the cities of Cambridge and Peterborough, Fenland towns, and villages to the north and south of the county. Twelve were male and nine female; 14 were practice partners and seven salaried doctors. Time since qualifying as a GP ranged from 4 months to 31 years with a mean of 14 years. Sixteen participants considered themselves white, two were Asian or Asian British, two were black or black British, and one was Chinese. One researcher facilitated all the group discussions, supported by another researcher adopting a flexible approach to explore group members’ experiences and perspectives while ensuring the discussion covered the outline schedule (Appendix 1). A focus group approach was adopted as it enabled free discussion and allowed participants to respond to each other’s comments and perspectives. It was emphasised that the purpose was not to reach consensus but to understand the range of views and experiences of participants. Each discussion lasted between 35 and 45 minutes, and was digitally recorded, transcribed verbatim, anonymised, and uploaded into NVivo 10 software for analysis. A Framework analysis approach was adopted9 using a framework developed from the literature, including the authors’ systematic review of ACP with frail and older individuals (Appendix 2),7 adding further themes that emerged from the data during analysis. Framework analysis is widely used in applied health services research, where the research has a clear focus of enquiry while using an inductive approach. Transcripts were initially coded within the framework and then summarised within themes and subthemes. Initial coding of two transcripts was independently reviewed by two researchers, with disagreements resolved by discussion. Themes were then reviewed and validated by one researcher against the original focus group transcripts and their notes taken at each group discussion. RESULTS The results are presented in five themes: •?GPs’ attitudes and how they feel their British Journal of General Practice, January 2018 e45 patients perceive ACP; •?GPs’ experience and training; •?timing of discussions; •?facilitators of ACP; and •?barriers to ACP. Participants are quoted according to the group they were in (A–E) and study ID number. GPs’ attitudes and how they feel their patients perceive ACP GPs’ attitudes to ACP. Most GPs felt advance care plans are important as they enable professionals to respond to individuals’ wishes. Plans were felt to be especially important in an emergency or when things go wrong: ‘Feel very strongly that it’s important to discuss this area with them because a lot of them, when you do talk about it, have quite fixed views about how much they want to be treated and what they want to do if they have problems.’ (E3) Some GPs were concerned that individuals may be reluctant to discuss ACP, feeling that such discussions may cause distress or make people feel guilty about using healthcare services: ‘It could completely adjust their mindset. They may be feeling quite positive about the future and then suddenly to be told that actually you’re nearer the end than you thought.’ (B2) ‘We have a lot of elderly patients who feel guilty about using resources of the NHS and having these conversations at the wrong time with them and their families … can be really damaging to the doctor–patient relationship.’ (E7) There was also concern that people may make decisions and subsequently change their minds: ‘So for me it is about planning for when things go wrong, it is about knowing the patient wishes.’ (D4) ‘There’s always the danger patients may feel bamboozled into making choices that perhaps on reflection they’d consider differently.’ (B2) GPs’ perceptions of patients’ attitudes to ACP. Many GPs felt that patients welcomed discussions, which often came as a relief, and helped give individuals and their families an understanding to help them plan for the future: GPs’ experience and training Most GPs felt they had sufficient experience to be able to raise ACP. Some thought they could rely on learning through experience, whereas others felt experience did not necessarily make good training: ‘I think often it comes as a relief to patients when you talk about it because it takes away some unknowns for them.’ (A2) ‘I’ve found it usually reasonably easy to broach the subject or talk around it anyway and see how far I get and then perhaps bring it up another time.’ (A5) ‘… if you’ve got a plan it means you’ve got some idea of expectation and prognosis … Discussion: perceptions of advance care planning with frail and older people I think half that time the frail and elderly get scared and afraid and end up in the wrong place for care is because they don’t know the expectation of what’s coming up for them.’ (D3) ‘Even as GPs when they start, they don’t get specific training on things like that. You kind of learn as you go on, and as you gain more experience you’re more comfortable with doing that.’ (A3) Some GPs noted that patients sometimes raise the issue themselves, while others reported that planning was being done that GPs are not aware of: ‘I don’t think experience necessarily makes a good training, unfortunately. I think you can do the same thing over and over again, but it doesn’t mean you’re any good at it.’ (B3) ‘I’ve noticed the number of frail and elderly or indeed elderly who are asking for their wishes with regard to what should happen in the event of them becoming unwell.’ (B3) ‘I suspect there’s a lot of planning being done that we’re not aware of and would e46 British Journal of General Practice, January 2018 there be a way of knowing those, that might be useful for us too.’ (C2) Timing of discussions The GPs strongly supported raising ACP early as part of a natural ongoing discussion, giving people the opportunity to think about and plan their future, and avoid unplanned emergencies. However, some who were concerned about the potential adverse impact of raising ACP on patients’ outlook preferred to leave discussions until later: ‘If we start getting people thinking ahead about their health and their care for the future it’s easier to get people to organise themselves.’ (D6) ‘Any event can only be a crisis if it’s not planned for … if you’ve got a plan that’s 5 years old that’s still better than no plan because it meant you’ve had the conversation and prompted the family to have the conversation.’ (D3) ‘I think it could cause anxiety when a patient’s living in blissful ignorance for a while and actually enjoying their life, and they may think they’ve got 5 years ahead, and I’m sure they’d feel happier still believing they had 5 years ahead than them being told, by the way, we think you’re probably going to die in the next 6 months.’ (B2) Facilitators of ACP The GPs identified four major themes that help facilitate ACP discussions: •?knowing the patient and their family; •?‘planting seeds’ and having flexible ongoing discussions; •?public awareness campaigns; and •?standardising ACP. Knowing the patient and their family. There was agreement that where GPs know their patients well, it is easier to gauge when to raise ACP, and more natural to introduce the topic. Most GPs also felt that knowing an individual’s family and getting them involved early made discussions more straightforward and helped prevent future difficulties: ‘… if we are still in a position of knowing our patients, which I think all of us will be, then these discussions are fairly intuitive and natural and just require the space and time to do them.’ (D4) ‘If you get the relatives involved and the relatives present when you’re talking to them it’s easier to paint a picture of what the future holds and to let them think about it and what might or might not happen.’ (D6) ‘I think having conflict within families can make it quite difficult because sometimes you might have had this discussion with the patient themselves and they’re quite happy with it and they’ve got a plan and then the, the son or the daughter finds out and disagrees.’ (C2) ‘Planting seeds’ and having flexible ongoing discussions. A recurring theme in all the groups was that raising ACP with individuals gives them opportunity to think about and discuss it, potentially at a later date. Many GPs also remarked on the importance of making ACP part of an ongoing discussion, giving people the opportunity to amend their plans as their perspectives changed: ‘I might not say all at once, right, we need to discuss a plan for you, but you just mention it when you might see them every 2 months or something.’ (A5) ‘Is this something you’ve thought about. If so, please let us know if you’ve got particular wishes or otherwise feel free to discuss it with us.’ (C4) ‘And it’s helpful to remember, isn’t it, that advance care planning isn’t a one-off consultation.’ (A2) Public awareness campaigns. There was broad support for raising public awareness of ACP. Television, radio, and newspapers, as well as leaflets and posters, were all mentioned as good ways to encourage individuals to think about planning their care: ‘I think raising public awareness is a really good idea and that’s something that could happen.’Discussion: perceptions of advance care planning with frail and older people (E3) ‘I think perhaps if more is spoken about it in the press and so on … so some patients will comment on those.’ (A5) Standardising ACP. Many GPs felt that it would be helpful if discussing ACP was more standardised; others were concerned that, despite a standardised approach, individuals could feel personally targeted: ‘It would be interesting if it was standardised somehow because it would be part of a normal conversation.’ (A2) ‘In the same way that kidney donor cards are dished out when you apply for a driving licence and then that sort of makes it something that people think about.’ (E3) ‘Even though you can say it’s standardised I think they’d still feel quite targeted.’ (C4) British Journal of General Practice, January 2018 e47 There was a general feeling that identifying frail older patients or those most at risk of admission was different from ACP. Barriers to ACP Four main barriers to ACP with frail and older patients were identified: •?unclear prognosis and unclear future needs; •?lack of services; •?issues documenting and ensuring wishes are respected; and •?pressure on GP time. Unclear prognosis and unclear future needs. A major theme was the difficulty of raising ACP where there is no overriding diagnosis and where prognosis and future care needs remain uncertain. Some GPs questioned the relevance of discussions where circumstances may change: ‘It has to be handled very carefully and actually it’s perhaps a bit more difficult to handle than if you have a concrete diagnosis … Having said that, I don’t think it’s any less relevant to do it than it is in those, it’s just harder to do it.’ (E4) ‘Everything’s very ambiguous, everything is uncertain and trying to give them some idea of how to plan, or for them to make a decision about how to plan when they don’t have any idea of why it is they’re deteriorating, is very hard.’ (A3) ‘You could have that discussion with me now but that’s not really a relevant discussion because it depends on m … Get a 10 % discount on an order above $ 100 Use the following coupon code : NURSING10

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