The 4AT, a rapid delirium detection tool for use in hospice inpatient units: Findings from a validation study.

BACKGROUND: Delirium is a serious neuropsychiatric syndrome with adverse outcomes, which is common but often undiagnosed in terminally ill people. The 4 'A's test or 4AT (www.the4AT.com), a brief delirium detection tool, is widely used in general settings, but validation studies in terminally ill people are lacking. AIM: To determine the diagnostic accuracy of the 4AT in detecting delirium in terminally ill people, who are hospice inpatients. DESIGN: A diagnostic test accuracy study in which participants underwent the 4AT and a reference standard based on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The reference standard was informed by Delirium Rating Scale Revised-98 and tests assessing arousal and attention. Assessments were conducted in random order by pairs of independent raters, blinded to the results of the other assessment. SETTING/PARTICIPANTS: Two hospice inpatient units in Scotland, UK. Participants were 148 hospice inpatients aged ⩾18 years. RESULTS: A total of 137 participants completed both assessments. Three participants had an indeterminate reference standard diagnosis and were excluded, yielding a final sample of 134. Mean age was 70.3 (SD = 10.6) years. About 33% (44/134) had reference standard delirium. The 4AT had a sensitivity of 89% (95% CI 79%-98%) and a specificity of 94% (95% CI 90%-99%). The area under the receiver operating characteristic curve was 0.97 (95% CI 0.94-1). CONCLUSION: The results of this validation study support use of the 4AT as a delirium detection tool in hospice inpatients, and add to the literature evaluating methods of delirium detection in palliative care settings. TRIAL REGISTRY: ISCRTN 97417474.

Experiences with advance care planning in amyotrophic lateral sclerosis: Qualitative longitudinal study with people with amyotrophic lateral sclerosis and their family carers.

BACKGROUND: It is unclear when people with amyotrophic lateral sclerosis and their family carers think about their future, what they would prefer in terms of care, and how their ideas change over time. AIM: Understanding experiences with advance care planning of persons with amyotrophic lateral sclerosis and their family carers-and if, when, how, and why these experiences change over time. DESIGN: A qualitative longitudinal interview study. Analysis involved content analysis, followed by a two-step timeline method to describe changes in advance care planning experiences within and across participants. SETTING/PARTICIPANTS: Nine persons with amyotrophic lateral sclerosis and nine family carers who were interviewed three times over a 9-month period. RESULTS: All participants thought about future care, but few talked about it. Over time, advance care planning experiences were influenced by intertwined elements: (1) experienced physical decline and related future care needs; (2) how persons with amyotrophic lateral sclerosis identify themselves as patients; (3) obtaining information about diagnosis and prognosis; (4) professionals initiating conversations about medical aspects of end-of-life decisions; (5) balancing between hope to remain stable and worry about the future; and (6) protecting themselves and each other from worries about the future. CONCLUSION: This study emphasizes how factors such as coping with the disease and relational dynamics shape individuals' thoughts about future care over time and how psychological, social, and medical factors are interwoven in advance care planning. The findings advocate for a process-oriented perspective, portraying advance care planning as an ongoing dialog, encompassing the needs, concerns, and emotions of both people with amyotrophic lateral sclerosis and their family carers.

The viability and appropriateness of using visual methods in end of life research to foreground the experiences of people affected by financial hardship and deprivation.

BACKGROUND: Visual methods have been used extensively in social research to explore people's experiences of structural disadvantage. This indicates that they may provide a useful research approach to understanding equity-related concerns within palliative care. However, little has been published regarding the use of visual methods with people at the end of life. PURPOSE OF THE PAPER: In this article we draw on our experiences of using visual methods to illuminate the end of life experiences of people experiencing financial hardship and deprivation in Scotland's largest city. EVIDENCE USED TO SUPPORT THE INFORMATION PRESENTED: We present evidence from the published literature, as well as our own experiences of using visual methods to explore dying at home for people experiencing financial hardship and deprivation. Our analysis draws on two specific visual methods: photovoice and professional photography. Photovoice is a participatory visual method which involves enabling participants to take and discuss their own images and present them to different audiences to try to enact social change. We report our experiences as researchers, as well as those of our participants and recruitment partners. KEY LEARNING POINTS: To successfully use visual methods, researchers need to invest significant time and resource in building a strong rapport with participants. There are also key ethical, practical and representational challenges to consider. A participatory framework should be adopted which ensures agency for participants in terms of image creation and public dissemination. Participants reported value in using visual methods in terms of legacy building and self-representation. Using photovoice (insider's view) and professional photography (outsider's view) together offered complementary perspectives, enabling a rich layering of stories and meaning. Our findings indicate visual methods can illuminate aspects of the end of life experience not captured by other research methods.

The end of life experiences of people living with socio-economic deprivation in the developed world: an integrative review.

BACKGROUND: Those experiencing socioeconomic deprivation have poorer quality of health throughout their life course which can result in poorer quality of death - with decreased access to palliative care services, greater use of acute care, and reduced access to preferred place of care compared with patients from less deprived populations. AIM: To summarise the current global evidence from developed countries on end-of-life experience for those living with socio-economic deprivation. DESIGN: Integrative review in accordance with PRISMA. A thorough search of major databases from 2010-2020, using clear definitions of end-of-life care and well-established proxy indicators of socio-economic deprivation. Empirical research describing experience of adult patients in the last year of life care were included. RESULTS: Forty studies were included from a total of 3508 after screening and selection. These were deemed to be of high quality; from a wide range of countries with varying healthcare systems; and encompassed all palliative care settings for patients with malignant and non-malignant diagnoses. Three global themes were identified: 1) multi-dimensional symptom burden, 2) preferences and planning and 3) health and social care interactions at the end of life. CONCLUSIONS: Current models of healthcare services are not meeting the needs of those experiencing socioeconomic deprivation at the end-of-life. Further work is needed to understand the disparity in care, particularly around ensuring patients voices are heard and can influence service development and delivery.

Advance care planning in amyotrophic lateral sclerosis (ALS): study protocol for a qualitative longitudinal study with persons with ALS and their family carers.

INTRODUCTION: Amyotrophic lateral sclerosis (ALS) is an incurable motor neuron degenerative disease that has rapid progression and is associated with cognitive impairment. For people with ALS (pALS) and their family carers, advance care planning (ACP) is beneficial, as it can lead to feelings of control/relief and refusal of unwanted treatments. However, evidence concerning the experiences and preferences regarding ACP of pALS and their family carers, especially when their symptoms progress, is scarce. This article describes the protocol for a qualitative longitudinal study that aims to explore: (1) the experiences with ACP and the preferences for future care and treatment of pALS and their family carers and (2) how these experiences and preferences change over time. METHODS AND ANALYSIS: A qualitative, longitudinal, multiperspective design. A total of eight to nine dyads (pALS and their family carers) will be recruited, and semistructured interviews administered every 3 months over a 9-month period. Qualitative longitudinal analysis involves content analysis via in-depth reading, followed by a two-step timeline method to describe changes in experiences and preferences within and across participants. ETHICS AND DISSEMINATION: This protocol has been approved by the central ethical committee of the University Hospital of Brussels, and local ethical committees of the other participating hospitals (B.U.N. B1432020000128). The results will be disseminated via the research group's (endoflifecare.be) website, social media and newsletter and via presentations at national and international scientific conferences.

'It was brutal. It still is': a qualitative analysis of the challenges of bereavement during the COVID-19 pandemic reported in two national surveys.

Background: The COVID-19 pandemic has been a devastating, mass bereavement event characterised by high levels of disruption to end-of-life, grieving and coping processes. Quantitative evidence is emerging on the effects of the pandemic on grief outcomes, but rich qualitative evidence on the lived experiences of people bereaved during these times is lacking. Methods: We analysed qualitative data from two independent UK-wide online surveys to describe the experiences of 881 people bereaved during the pandemic. We analysed the data in two phases, conducting an inductive thematic analysis and then applying Stroebe and Schut's Dual Process Model (DPM) and concepts of loss-oriented and restoration-oriented coping (1999; 2010) as an analytic lens to further contextualise and interpret the data. Results: We identified six main themes: troubled deaths; mourning, memorialisation and death administration; mass bereavement, the media and the ongoing threat of the pandemic; grieving and coping; work and employment; and support from the health and social care system. Examples of loss-oriented stressors included being unable to visit and say goodbye at the end of life and restricted funeral and memorialisation practices. Associated reactions were feelings of guilt, anger, and problems accepting the death and beginning to grieve. Examples of restoration-oriented stressors and reactions were severely curtailed support-systems and social/recreational activities, which impacted people's ability to cope. Conclusion: Study results demonstrate the exceptionally difficult sets of experiences associated with pandemic bereavement, and the utility of the DPM for conceptualising these additional challenges and their impacts on grieving. Our analysis builds and expands on previous use of the DPM in explicating the impact of the pandemic on bereavement. We make recommendations for statutory, private and third sector organisations for improving the experiences of people bereaved during and following this and future pandemics.

Integrating lived experiences of out-of-hours health services for people with palliative and end-of-life care needs with national datasets for people dying in Scotland in 2016: A mixed methods, multi-stage design.

BACKGROUND: Unscheduled care is used increasingly during the last year of life by people known to have significant palliative care needs. AIM: To document the frequency and patterns of use of unscheduled healthcare by people in their last year of life and understand the experiences and perspectives of patients, families and professionals about accessing unscheduled care out-of-hours. DESIGN: A mixed methods, multi-stage study integrating a retrospective cohort analysis of unscheduled healthcare service use in the last year of life for all people dying in Scotland in 2016 with qualitative data from three regions involving service users, bereaved carers and general practitioners. SETTING: Three contrasting Scottish Health Board regions and national datasets for the whole of Scotland. RESULTS: People who died in Scotland in 2016 (n = 56,407) had 472,360 unscheduled contacts with one of five services: telephone advice, primary care, ambulance service, emergency department and emergency hospital admission. These formed 206,841 individual continuous unscheduled care pathways: 65% starting out-of-hours. When accessing healthcare out-of-hours, patients and carers prioritised safety and a timely response. Their choice of which service to contact was informed by perceptions and previous experiences of potential delays and whether the outcome might be hospital admission. Professionals found it difficult to practice palliative care in a crisis unless the patient had previously been identified. CONCLUSION: Strengthening unscheduled care in the community, together with patient and public information about how to access these services could prevent hospital admissions of low benefit and enhance community support for people living with advanced illness.

Risk factors for complicated grief among family members bereaved in intensive care unit settings: A systematic review.

BACKGROUND: Families of intensive care unit (ICU) decedents are at increased risk of experiencing complicated grief. However, factors associated with complicated grief in ICU and bereavement needs assessment are not available routinely. We aimed to conduct a systematic review identifying risk factors associated with complicated grief among family members of ICU decedents. MATERIALS AND METHODS: MEDLINE, EMBASE, CINAHL, PsycINFO, the Cochrane Library and Web of Science were searched to identify relevant articles. Observational studies and randomised and non-randomised controlled trials were included. Studies were screened and quality appraised in duplicate. Risk of bias was assessed using Newcastle-Ottawa Scale. A narrative synthesis was undertaken. RESULTS: Seven studies conducted across three continents were eligible. Four studies were of high quality. 61 risk factors were investigated across the studies. Factors associated with a decreased risk of complicated grief included age, patient declining treatment and involvement in decision-making. Factors associated with increased risk included living alone, partner, dying while intubated, problematic communication, and not having the opportunity to say goodbye. CONCLUSION: This systematic review has identified risk factors which may help identify family members at increased risk of complicated grief. Many of the studies has small sample sizes increasing the risk of erroneously reporting no effect due to type II error. Some factors are specific to the ICU setting and are potentially modifiable. Bereavement services tailored to the needs of bereaved family members in ICU settings are required. (PROSPERO registration ID 209503).

'Playlist for Life' at the end of life: a mixed-methods feasibility study of a personalised music listening intervention in the hospice setting.

BACKGROUND: Playlist for Life is a brief, inexpensive music listening intervention which originated in dementia care, but is increasingly being used for people at the end of life. However, there is a lack of robust empirical research on its application in the hospice setting. Our patient and public involvement group originated the idea for this study. The aim of this feasibility study was to inform the design of a larger effectiveness study on the use of Playlist for Life in the hospice setting. METHOD: This study was a mixed-methods feasibility study involving adults at the end of life, family members and hospice staff from one in-patient hospice in Scotland. Eligible patient/family member dyads were approached by hospice staff and if interested, recruited by the researcher. All included participants received the intervention, which involved the provision of an MP3 player and assistance to set up a playlist. Participants were asked to listen to the playlist daily during the intervention period (7 days). Data were collected through patient reported outcome measures and on days 1, 3 and 7 of the intervention period and through participant observation session. Patient/family member dyads and hospice staff also took part in qualitative interviews (Appendix 1) post-intervention, which were audio-recorded, transcribed and analysed thematically. Semi-structured interviews at the end of the intervention period were used to evaluate feasibility and acceptability. An advisory group including patients, family members and staff gave helpful feedback on the qualitative interview questions. Interview questions were the same for all participants and all the questions were asked to all participants. RESULTS: N = 15 participants were recruited (n = 5 patients, n = 5 family, n = 5 staff. The intervention was appraised positively, particularly regarding its beneficial effect on patient/family relationships. The study design was deemed feasible and acceptable. CONCLUSION: The findings of this study will inform the development of a future randomised cluster trial designed to assess the usability and effectiveness of the Playlist for Life personalised music intervention. TRIAL REGISTRATION: This study was not registered as this was a small feasibility study, conducted prior to a pilot study not testing for effectiveness. In addition, the study was non-randomised. The study is registered with NHS ethics and the hospice research and governance team.

Factors influencing adult carer support planning for unpaid caregiving at the end of life in Scotland: Qualitative insights from triangulated interviews and focus groups.

Caring for a relative or friend at the end of life can be rewarding but all-encompassing. These caregivers are often not identified, meaning their diverse needs remain unmet, and the lack of assessment, support and planning increases the likelihood of crisis and burnout. The Carers (Scotland) Act 2016 places responsibility on local authorities to implement such a plan, which will be fast-tracked for carers supporting someone at the end of life. Our research described the factors which might influence this planning, triangulating primary focus groups with 15 carers and secondary qualitative data from transcripts with 30 carers, all of whom who had looked after someone with a terminal illness. Analysis was iterative, and constant comparative analysis of the secondary data informed the primary focus groups. Three main themes were identified; 1. The importance of early identification as a carer to enable timely assessment and support. 2. Carers experience isolation and loneliness which limits opportunities for support. 3. Responding in a timely fashion to carer assessment and support is vital to avoid crises. This research confirms that identifying carers early in the illness trajectory, ideally at diagnosis, is vital to avoid carer burnout. Health and social care providers have a key role in identification and should ensure, where possible, that carer needs are dynamically assessed, supported and documented. Finally, caring does not end after death, it extends into bereavement. Thus, we need to consider system and cultural change to ensure the experiences and needs of carers are addressed and valued.

The impact of poverty and deprivation at the end of life: a critical review.

This critical review interrogates what we know about how poverty and deprivation impact people at the end of life and what more we need to uncover. While we know that people in economically resource-rich countries who experience poverty and deprivation over the life course are likely to die younger, with increased co-morbidities, palliative care researchers are beginning to establish a full picture of the disproportionate impact of poverty on how, when and where we die. This is something the Covid-19 pandemic has further illustrated. Our article uses a critical social science lens to investigate an eclectic range of literature addressing health inequities and is focused on poverty and deprivation at the end of life. Our aim was to see if we could shed new light on the myriad ways in which experiences of poverty shape the end of people's lives. We start by exploring the definitions and language of poverty while acknowledging the multiple intersecting identities that produce privilege. We then discuss poverty and deprivation as a context for the nature of palliative care need and overall end-of-life circumstances. In particular, we explore: total pain; choice at the end of life; access to palliative care; and family caregiving. Overall, we argue that in addressing the effects of poverty and deprivation on end-of-life experiences, there is a need to recognise not just socio-economic injustice but also cultural and symbolic injustice. Too often, a deficit-based approach is adopted which both 'Others' those living with poverty and renders invisible the strategies and resilience they develop to support themselves, their families and communities. We conclude with some recommendations for future research, highlighting in particular the need to amplify the voices of people with lived experience of poverty regarding palliative and end-of-life care.

Deaths in critical care and hospice-prevalence, trends, influences: a national decedent cohort study.

OBJECTIVES: End-of-life and bereavement care support services differ in critical care and inpatient hospice settings. There are limited population-level data comparing deaths in these two locations. We aimed to compare the characteristics of people who die in critical care units and in hospices, identify factors associated with place of death and report 12-year trends in Scotland. METHODS: We undertook a cohort study of decedents aged ≥16 years in Scotland (2005-2017). Location of death was identified from linkage to the Scottish Intensive Care Society Audit Group database and National Records of Scotland Death Records. We developed a multinomial logistic regression model to identify factors independently associated with location of death. RESULTS: There were 710 829 deaths in Scotland, of which 36 316 (5.1%) occurred in critical care units and 42 988 (6.1%) in hospices. As a proportion of acute hospital deaths, critical care deaths increased from 8.0% to 11.2%. Approximately one in eight deaths in those aged under 40 years occurred in critical care. Factors independently associated with hospice death included living in less deprived areas, cancer as the cause of death and presence of comorbidities. In contrast, liver disease and accidents as the cause of death and absence of comorbidities were associated with death in critical care. CONCLUSIONS: Similar proportions of deaths in Scotland occur in critical care units and hospices. Given the younger age profile and unexpected nature of deaths occurring in critical care units, there is a need for a specific focus on end-of-life and bereavement support services in critical care units.

Palliative care research promotion in policy and practice: a knowledge exchange process.

In palliative care, as in many areas of medicine, there is a considerable amount of research conducted that makes sound recommendations but does not result consistently in improved care. For instance, though palliative care has been shown to benefit all people with a life-threatening illness, its main reach continues to be for those with cancer. Drawing on relational models of research use, we set out to engage policy-makers, educators, clinicians, commissioners and service providers in a knowledge exchange process to identify implications of research for Scottish palliative care priorities. First, we mapped the existing palliative care research evidence in Scotland. We then organised evidence review meetings and a wider stakeholder event where research producers and users came together to coproduce implications of the evidence for policy, education and practice. We used questionnaires and key stakeholder feedback meetings to explore impacts of this process on research uptake and use immediately after the events and over time. In this paper, we reflect on this knowledge exchange process and the broader context in which it was set. We found that participation fostered relationships and led to a rich and enthusiastic exploration of research evidence from multiple perspectives. Potential impacts relating to earlier identification for palliative care, education and need-based commissioning ensued. We make suggestions to guide replication.

What makes palliative care needs "complex"? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care.

BACKGROUND: Specialist palliative care (SPC) providers tend to use the term 'complex' to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. METHODS: Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. RESULTS: Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. CONCLUSIONS: Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.

Electronic care coordination systems for people with advanced progressive illness: a mixed-methods evaluation in Scottish primary care.

BACKGROUND: Electronic care coordination systems, known as the Key Information Summary (KIS) in Scotland, enable the creation of shared electronic records available across healthcare settings. A KIS provides clinicians with essential information to guide decision making for people likely to need emergency or out-of-hours care. AIM: To estimate the proportion of people with an advanced progressive illness with a KIS by the time of death, to examine when planning information is documented, and suggest improvements for electronic care coordination systems. DESIGN AND SETTING: This was a mixed-methods study involving 18 diverse general practices in Scotland. METHOD: Retrospective review of medical records of patients who died in 2017, and semi-structured interviews with healthcare professionals were conducted. RESULTS: Data on 1304 decedents were collected. Of those with an advanced progressive illness (79%, n = 1034), 69% (n = 712) had a KIS. These were started a median of 45 weeks before death. People with cancer were most likely to have a KIS (80%, n = 288), and those with organ failure least likely (47%, n = 125). Overall, 68% (n = 482) of KIS included resuscitation status and 55% (n = 390) preferred place of care. People with a KIS were more likely to die in the community compared to those without one (61% versus 30%). Most KIS were considered useful/highly useful. Up-to-date free-text information within the KIS was valued highly. CONCLUSION: In Scotland, most people with an advanced progressive illness have an electronic care coordination record by the time of death. This is an achievement. To improve further, better informal carer information, regular updating, and a focus on generating a KIS for people with organ failure is warranted.

'Take more laxatives was their answer to everything': A qualitative exploration of the patient, carer and healthcare professional experience of constipation in specialist palliative care.

BACKGROUND: Constipation is a major problem for many older adults, more so for those who are receiving specialist palliative care. However, limited research reports the subjective experiences of constipation, despite evidenced differences between the healthcare professional and patient/carer perspective. AIM: The main aim of this study is to explore the experience of how constipation is assessed and managed within specialist palliative care from the patient, carer and healthcare professional perspective. DESIGN: Exploratory, qualitative design, utilising focus groups and interviews, and analysed using thematic analysis. SETTING/PARTICIPANTS: Six focus groups with 27 healthcare professionals and semi-structured interviews with 13 patients and 5 family caregivers in specialist palliative care units across three regions of the United Kingdom. RESULTS: Constipation impacted physically, psychologically and socially on patients and families; however, they felt staff relegated it on the list of importance. Lifestyle modifications implemented at home were not incorporated into their specialist palliative care plan within the hospice. Comparatively, healthcare professionals saw constipation solely as a physical symptom. Assessment focused on the physical elements of constipation, and management was pharmacologically driven. Healthcare professionals reported patient embarrassment as a barrier to communicating about bowel care, whereas patients wanted staff to initiate communication and discuss constipation openly. CONCLUSION: Assessment and management of constipation may not yet reflect the holistic palliative care model. A focus on the pharmacological management may result in lifestyle modifications being underutilised. Healthcare professionals also need to be open to initiate communication on bowel care and consider non-pharmacological approaches. It is important that patients and families are supported in self-care management, alongside standardised guidelines for practice and for healthcare professionals to facilitate this.

Examining constipation assessment and management of patients with advanced cancer receiving specialist palliative care: a multi-site retrospective case note review of clinical practice.

BACKGROUND: Constipation is a common symptom for patients receiving palliative care. Whilst international clinical guidelines are available on the clinical management of constipation for people with advanced cancer receiving specialist palliative care (SPC), the extent to which the guidelines are implemented in practice is unclear. This study aimed to examine clinical practices for the assessment and management of constipation for patients with advanced cancer within inpatient SPC settings. METHODS: A multi-site retrospective case-note review was conducted, consisting of 150 patient case-notes from three inpatient SPC units across the United Kingdom between August 2016 and May 2017. The variables selected for review were determined by the recommendations within the clinical guidelines. Descriptive statistics, cross tabulation, chi square, and bivariate correlations were used to examine clinical practices compared to policy guidelines for the assessment and management of constipation. Reporting was structured by the STROBE checklist for observational research (Additional File 2). RESULTS: A comprehensive assessment, including a full history and performing a physical exam, was recorded for 109 patients (73%), however, no standardised documentation was utilised. Assessment was nurse led, with variable involvement across sites of other members of the multidisciplinary team (MDT). Education on prevention was documented in 30 (20%) case-notes, and 53% recorded evidence of non-pharmacological intervention. Age, gender, and reason for admission did not impact on the likelihood of receiving a comprehensive assessment, education, or non-pharmacological intervention, however, significant differences were evident between sites. Pharmacological management was well developed and aligned to the guidelines however, 33% of patient case-notes recorded no information on the titration of laxatives. Twelve percent of patients experienced partial or complete bowel obstruction, and management strategies were variable. CONCLUSIONS: Constipation management is driven by a pharmacological approach, with little evidence of the implementation of preventative and non-pharmacological strategies. The nurse plays a key coordinating role in assessment; however, involvement and roles of the wider MDT varies. Accurate recording of care is essential when examining clinical practice and identifying areas for improvement. Further education is needed to equip HCPs with the knowledge and skills to ensure consistency in assessment and implementation of appropriate non-pharmacological/ preventative strategies.

CPR decision-making conversations in the UK: an integrative review.

OBJECTIVES: Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) discussions with patients and their caregivers have been subjected to intense ethical and legal debate in recent years. Legal cases and national guidelines have tried to clarify the best approach to DNACPR discussions; however, there is little evidence of how best to approach them from the patient, family or caregiver perspective. This paper describes published accounts of patient, family and caregiver experiences of discussions about advance cardiopulmonary resuscitation (CPR) decision making. METHODS: An integrative review of the UK literature between 2000 and 2016 including qualitative and quantitative studies was conducted. Worldwide, 773 abstracts were identified, and 20 papers from the UK were included in the final analysis. RESULTS: Patient, family and caregivers prefer discussions to be initiated by someone trusted, and wishes for family involvement vary depending on the context. Timing of discussions should be individualised, though discussions earlier in the illness are often preferable. Discussions held in the acute setting are suboptimal. CPR decisions should be part of a wider discussion about future care and adequate communication skills training is important. CONCLUSIONS: The findings of this review are at odds with the current statutory framework and potentially challenging for medical professionals who are working in a stretched health service, with pressure to discuss DNACPR decisions at the earliest opportunity. With increasing focus on person-centred care and realistic medicine, patient narratives must be considered by doctors and policy makers alike, to minimise harm.