HEALTH SERVICES AND DELIVERY RESEARCH

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1 HEALTH SERVICES AND DELIVERY RESEARCH VOLUME 2 ISSUE 17 JUNE 2014 ISSN Transitions at the end of ife for oder aduts patient, carer and professiona perspectives: a mixed-methods study Barbara Hanratty, Eizabeth Lowson, Gunn Grande, Sheia Payne, Juia Addington-Ha, Nicoe Vatorta and Jane Seymour DOI /hsdr02170

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3 Transitions at the end of ife for oder aduts patient, carer and professiona perspectives: a mixed-methods study Barbara Hanratty, 1 * Eizabeth Lowson, 2 Gunn Grande, 3 Sheia Payne, 4 Juia Addington-Ha, 2 Nicoe Vatorta 1 and Jane Seymour 5 1 Department of Pubic Heath and Poicy, University of Liverpoo, Liverpoo, UK 2 Facuty of Heath Sciences, University of Southampton, Southampton, UK 3 Schoo of Nursing, Midwifery and Socia Work, University of Manchester, Manchester, UK 4 Internationa Observatory on End of Life Care, Facuty of Heath and Medicine, Lancaster University, Lancaster, UK 5 Schoo of Heath Sciences, Queen s Medica Centre, University of Nottingham, Nottingham, UK *Corresponding author Decared competing interests of authors: none Pubished June 2014 DOI: /hsdr02170 This report shoud be referenced as foows: Hanratty B, Lowson E, Grande G, Payne S, Addington-Ha J, Vatorta N, et a. Transitions at the end of ife for oder aduts patient, carer and professiona perspectives: a mixed-methods study. Heath Serv Deiv Res 2014;2(17).

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5 Heath Services and Deivery Research ISSN (Print) ISSN (Onine) This journa is a member of and subscribes to the principes of the Committee on Pubication Ethics (COPE) ( Editoria contact: nihredit@southampton.ac.uk The fu HS&DR archive is freey avaiabe to view onine at Print-on-demand copies can be purchased from the report pages of the NIHR Journas Library website: Criteria for incusion in the Heath Services and Deivery Research journa Reports are pubished in Heath Services and Deivery Research (HS&DR) if (1) they have resuted from work for the HS&DR programme or programmes which preceded the HS&DR programme, and (2) they are of a sufficienty high scientific quaity as assessed by the reviewers and editors. HS&DR programme The Heath Services and Deivery Research (HS&DR) programme, part of the Nationa Institute for Heath Research (NIHR), was estabished to fund a broad range of research. It combines the strengths and contributions of two previous NIHR research programmes: the Heath Services Research (HSR) programme and the Service Deivery and Organisation (SDO) programme, which were merged in January The HS&DR programme aims to produce rigorous and reevant evidence on the quaity, access and organisation of heath services incuding costs and outcomes, as we as research on impementation. The programme wi enhance the strategic focus on research that matters to the NHS and is keen to support ambitious evauative research to improve heath services. For more information about the HS&DR programme pease visit the website: This report The research reported in this issue of the journa was funded by the HS&DR programme or one of its proceeding programmes as project number 08/1809/232. The contractua start date was in December The fina report began editoria review in October 2012 and was accepted for pubication in Juy The authors have been whoy responsibe for a data coection, anaysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors report and woud ike to thank the reviewers for their constructive comments on the fina report document. However, they do not accept iabiity for damages or osses arising from materia pubished in this report. This report presents independent research funded by the Nationa Institute for Heath Research (NIHR). The views and opinions expressed by authors in this pubication are those of the authors and do not necessariy refect those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Heath. If there are verbatim quotations incuded in this pubication the views and opinions expressed by the interviewees are those of the interviewees and do not necessariy refect those of the authors, those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Heath. Queen s Printer and Controer of HMSO This work was produced by Hanratty et a. under the terms of a commissioning contract issued by the Secretary of State for Heath. This issue may be freey reproduced for the purposes of private research and study and extracts (or indeed, the fu report) may be incuded in professiona journas provided that suitabe acknowedgement is made and the reproduction is not associated with any form of advertising. Appications for commercia reproduction shoud be addressed to: NIHR Journas Library, Nationa Institute for Heath Research, Evauation, Trias and Studies Coordinating Centre, Apha House, University of Southampton Science Park, Southampton SO16 7NS, UK. Pubished by the NIHR Journas Library ( produced by Prepress Projects Ltd, Perth, Scotand (

6 Heath Services and Deivery Research Editor-in-Chief Professor Ray Fitzpatrick Professor of Pubic Heath and Primary Care, University of Oxford, UK NIHR Journas Library Editor-in-Chief Professor Tom Waey Director, NIHR Evauation, Trias and Studies and Director of the HTA Programme, UK NIHR Journas Library Editors Professor Ken Stein Chair of HTA Editoria Board and Professor of Pubic Heath, University of Exeter Medica Schoo, UK Professor Andree Le May Chair of NIHR Journas Library Editoria Group (EME, HS&DR, PGfAR, PHR journas) Dr Martin Ashton-Key Consutant in Pubic Heath Medicine/Consutant Advisor, NETSCC, UK Professor Matthias Beck Chair in Pubic Sector Management and Subject Leader (Management Group), Queen s University Management Schoo, Queen s University Befast, UK Professor Aieen Carke Professor of Pubic Heath and Heath Services Research, Warwick Medica Schoo, University of Warwick, UK Dr Tessa Criy Director, Crysta Bue Consuting Ltd, UK Dr Peter Davidson Director of NETSCC, HTA, UK Ms Tara Lamont Scientific Advisor, NETSCC, UK Professor Eaine McCo Director, Newcaste Cinica Trias Unit, Institute of Heath and Society, Newcaste University, UK Professor Wiiam McGuire Professor of Chid Heath, Hu York Medica Schoo, University of York, UK Professor Geoffrey Meads Professor of Heath Sciences Research, Facuty of Education, University of Winchester, UK Professor Jane Norman Professor of Materna and Feta Heath, University of Edinburgh, UK Professor John Powe Consutant Cinica Adviser, Nationa Institute for Heath and Care Exceence (NICE), UK Professor James Raftery Professor of Heath Technoogy Assessment, Wessex Institute, Facuty of Medicine, University of Southampton, UK Dr Rob Riemsma Reviews Manager, Keijnen Systematic Reviews Ltd, UK Professor Heen Roberts Professor of Chid Heath Research, University Coege London, UK Professor Heen Snooks Professor of Heath Services Research, Institute of Life Science, Coege of Medicine, Swansea University, UK Pease visit the website for a ist of members of the NIHR Journas Library Board: Editoria contact: nihredit@southampton.ac.uk NIHR Journas Library

7 DOI: /hsdr02170 HEALTH SERVICES AND DELIVERY RESEARCH 2014 VOL. 2 NO. 17 Abstract Transitions at the end of ife for oder aduts patient, carer and professiona perspectives: a mixed-methods study Barbara Hanratty, 1 * Eizabeth Lowson, 2 Gunn Grande, 3 Sheia Payne, 4 Juia Addington-Ha, 2 Nicoe Vatorta 1 and Jane Seymour 5 1 Department of Pubic Heath and Poicy, University of Liverpoo, Liverpoo, UK 2 Facuty of Heath Sciences, University of Southampton, Southampton, UK 3 Schoo of Nursing, Midwifery and Socia Work, University of Manchester, Manchester, UK 4 Internationa Observatory on End of Life Care, Facuty of Heath and Medicine, Lancaster University, Lancaster, UK 5 Schoo of Heath Sciences, Queen s Medica Centre, University of Nottingham, Nottingham, UK *Corresponding author Background: The end of ife may be a time of high service utiisation for oder aduts. Transitions between care settings occur frequenty, but may produce itte improvement in symptom contro or quaity of ife for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individua needs rather than system imperatives, is crucia to patients we-being and to containing heath-care costs. Objective: The aim of this study was to understand the experiences, infuences and consequences of transitions between settings for oder aduts at the end of ife. Three conditions were the focus of study, chosen to represent differing disease trajectories. Setting: Engand. Participants: Thirty patients aged over 75 years, in their ast year of ife, diagnosed with heart faiure, ung cancer and stroke; 118 caregivers of decedents aged years, who had died with heart faiure, ung cancer, stroke, chronic obstructive pumonary disease or seected other cancers; and 43 providers and commissioners of services in primary care, hospita, hospice, socia care and ambuance services. Design and methods: This was a mixed-methods study, composed of four parts: (1) in-depth interviews with oder aduts; (2) quaitative interviews and structured questionnaire with bereaved carers of oder adut decedents; (3) teephone interviews with care commissioners and providers using case scenarios derived from the interviews with carers; and (4) anaysis of inked Hospita Episode Statistics (HES) and mortaity data reating to hospita admissions for heart faiure and ung cancer in Engand Resuts: Transitions between care settings in the ast year of ife were a common component of end-of-ife care across a the data sets that made up this study, and many moves were made shorty before death. Patients and carers experiences of transitions were of a disjointed system in which organisationa processes were prioritised over individua needs. In many cases, the famiy carer was the co-ordinator and provider of care at home, excuded from participation in institutiona care but acking the information and support to extend their roe with confidence. The genera practitioner (GP) was a vaued, centra figure in end-of-ife care across settings, though other discipines were critica of GPs expertise and adherence to guideines. Out-of-hours services and care homes were identified by many as contributors to unnecessary transitions. Good reationships and communication between professionas in different settings and sectors was recognised by famiies as one of the most important infuences on transitions but this was rarey acknowedged by staff. Queen s Printer and Controer of HMSO This work was produced by Hanratty et a. under the terms of a commissioning contract issued by the Secretary of State for Heath. This issue may be freey reproduced for the purposes of private research and study and extracts (or indeed, the fu report) may be incuded in professiona journas provided that suitabe acknowedgement is made and the reproduction is not associated with any form of advertising. Appications for commercia reproduction shoud be addressed to: NIHR Journas Library, Nationa Institute for Heath Research, Evauation, Trias and Studies Coordinating Centre, Apha House, University of Southampton Science Park, Southampton SO16 7NS, UK. v

8 ABSTRACT Concusions: Deveopment of a shared understanding of professiona and carer roes in end-of-ife transitions may be one of the most effective ways of improving patients experiences. Patients and carers manage many aspects of end-of-ife care for themseves. Identifying ways to extend their skis and strengthen their voices, particuary in hospita settings, woud be wecomed and may reduce unnecessary end-of-ife transitions. Why the experiences of carers appear to have changed itte, despite the impementation of a range of reevant poicies, is an important question that has not been answered. Recommendations for future research incude the reationship between poicy interventions and the experiences of end-of-ife carers; identification of ways to harmonise understanding of the carers roe and strengthen their voice, particuary in hospita settings; identification of ways to reduce the infuence of interprofessiona tensions in end-of-ife care; and deveopment of interventions to enhance patients experiences across transitions. Funding: The Nationa Institute for Heath Research Heath Services and Deivery Research programme. vi NIHR Journas Library

9 DOI: /hsdr02170 HEALTH SERVICES AND DELIVERY RESEARCH 2014 VOL. 2 NO. 17 Contents List of tabes...ix List of figures...xi Gossary...xiii List of abbreviations....xv Pain Engish summary... xvii Scientific summary...xix Chapter 1 Background, context and scope 1 Introduction 1 Background 1 Definition and importance of transitions 1 Terminoogy 2 Care across transitions and continuity of care 2 Areas of enquiry that are reevant to the study of transitions between care settings 3 Readmissions to hospita 3 Transitions for care-home residents 4 Deayed discharges 4 Care pathways 5 Researching end-of-ife transitions 5 Summary 6 Theoretica framework 6 Chapter 2 Objectives 9 Objectives 9 Rationae: interviews with patients 9 Rationae: interviews with bereaved famiy carers 9 Rationae: interviews with professionas 10 Chapter 3 Methods 11 Issues, probems and responses 11 Research ethics and research governance approvas 11 Staffing 11 Quaitative interviews 11 Recruitment and data coection from patients 11 Recruitment and data coection from bereaved caregivers 12 Recruitment and data coection from professionas 14 Quaitative data anaysis 15 Chapter 4 Anaysis of inked Hospita Episode Statistics and mortaity data 17 Data management 17 Pan for anaysis 17 Queen s Printer and Controer of HMSO This work was produced by Hanratty et a. under the terms of a commissioning contract issued by the Secretary of State for Heath. This issue may be freey reproduced for the purposes of private research and study and extracts (or indeed, the fu report) may be incuded in professiona journas provided that suitabe acknowedgement is made and the reproduction is not associated with any form of advertising. Appications for commercia reproduction shoud be addressed to: NIHR Journas Library, Nationa Institute for Heath Research, Evauation, Trias and Studies Coordinating Centre, Apha House, University of Southampton Science Park, Southampton SO16 7NS, UK. vii

10 CONTENTS Chapter 5 Findings 19 Participant characteristics 19 Patients: participant characteristics 19 Carers: participant characteristics 19 Professionas: participant characteristics 23 Questionnaire findings: carers views of end-of-ife care transitions 24 Overview of care 24 Care from genera practitioners and out-of-hours care 25 Medication 28 Death and bereavement 28 Care homes 28 Care at home 28 Care in hospita 31 Reported differences by socioeconomic status of carer 32 Quaitative data findings 34 Satisfaction 34 Synthesised findings from patients, carers and professionas 34 Carers views on how end-of-ife care shoud change 49 Anaysis of inked hospita and mortaity data 51 Demographic characteristics 51 Deaths in hospita 52 Time between ast hospita admission and death 53 Chapter 6 Answering our research questions 57 Reasons for diversions from origina protoco Addition of patient interviews Addition of quaitative interviews with bereaved carers to questionnaire administration Design of inked data anaysis 57 Chapter 7 Impications 59 Key impications 59 Caregivers 59 Professiona co-ordination of care 60 Performance measurement and incentives 61 Sef-management 62 Interventions to enhance the experience of transitions 62 Deveopment of future interventions 62 Strengths and imitations 63 Recommendations on priorities for future research 64 Summary 64 Acknowedgements 65 References 67 Appendix 1 Pubications and conference presentations 75 Appendix 2 Study materias 77 viii NIHR Journas Library

11 DOI: /hsdr02170 HEALTH SERVICES AND DELIVERY RESEARCH 2014 VOL. 2 NO. 17 List of tabes TABLE 1 Characteristics of patient interviewees 20 TABLE 2 Characteristics of bereaved caregiver interviewees 21 TABLE 3 Characteristics of care recipients (decedents) 22 TABLE 4 Caregiver interviewees: socioeconomic status 23 TABLE 5 Decedent diagnoses and carers socioeconomic status 23 TABLE 6 Professiona interviewees roes 23 TABLE 7 Carers views of co-ordination of care 24 TABLE 8 Carers views of hep and support provided 24 TABLE 9 Carers views of GP care 25 TABLE 10 Carers views of out-of-hours care 27 TABLE 11 Carers views of medications 28 TABLE 12 Carers views of death and bereavement 29 TABLE 13 Carers views on admissions to care homes 30 TABLE 14 Carers views of in-hospita care 31 TABLE 15 Variation in views of care by socioeconomic status. Note: (%) percentages of a responses to this question within each IMD quintie 33 TABLE 16 Demographic characteristics of decedents in inked data set, TABLE 17 Interva between ast admission and death 53 TABLE 18 Sociodemographic characteristics of cases admitted frequenty to hospita in the ast year of ife (number of admissions > 90th centie) 54 TABLE 19 Patient characteristics associated with frequent admissions to hospita in the ast year of ife (number of admissions > 90th centie) 55 Queen s Printer and Controer of HMSO This work was produced by Hanratty et a. under the terms of a commissioning contract issued by the Secretary of State for Heath. This issue may be freey reproduced for the purposes of private research and study and extracts (or indeed, the fu report) may be incuded in professiona journas provided that suitabe acknowedgement is made and the reproduction is not associated with any form of advertising. Appications for commercia reproduction shoud be addressed to: NIHR Journas Library, Nationa Institute for Heath Research, Evauation, Trias and Studies Coordinating Centre, Apha House, University of Southampton Science Park, Southampton SO16 7NS, UK. ix

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13 DOI: /hsdr02170 HEALTH SERVICES AND DELIVERY RESEARCH 2014 VOL. 2 NO. 17 List of figures FIGURE 1 Recruitment of famiy carers by genera practices 12 FIGURE 2 Proportion of deaths in hospita for ung cancer cases by IMD, FIGURE 3 Proportion of deaths in hospita for heart faiure cases by IMD, Queen s Printer and Controer of HMSO This work was produced by Hanratty et a. under the terms of a commissioning contract issued by the Secretary of State for Heath. This issue may be freey reproduced for the purposes of private research and study and extracts (or indeed, the fu report) may be incuded in professiona journas provided that suitabe acknowedgement is made and the reproduction is not associated with any form of advertising. Appications for commercia reproduction shoud be addressed to: NIHR Journas Library, Nationa Institute for Heath Research, Evauation, Trias and Studies Coordinating Centre, Apha House, University of Southampton Science Park, Southampton SO16 7NS, UK. xi

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15 DOI: /hsdr02170 HEALTH SERVICES AND DELIVERY RESEARCH 2014 VOL. 2 NO. 17 Gossary Carer Carer, caregiver and bereaved caregiver are terms used in this document to describe someone who provides unpaid support to famiy or friends. Care trust Care trusts are organisations that work in both heath and socia care. They carry out a range of services, incuding socia care, menta heath services and primary care services. Episode Term used in Hospita Episode Statistics: an episode is a singe period of care under one consutant. Spe Term used in Hospita Episode Statistics: a patient s entire stay in hospita is a spe. A spe can contain one episode, or severa episodes. If the patient is transferred to another hospita, dies or is discharged, the episode and the spe end. The vast majority of spes contain ony one episode. Queen s Printer and Controer of HMSO This work was produced by Hanratty et a. under the terms of a commissioning contract issued by the Secretary of State for Heath. This issue may be freey reproduced for the purposes of private research and study and extracts (or indeed, the fu report) may be incuded in professiona journas provided that suitabe acknowedgement is made and the reproduction is not associated with any form of advertising. Appications for commercia reproduction shoud be addressed to: NIHR Journas Library, Nationa Institute for Heath Research, Evauation, Trias and Studies Coordinating Centre, Apha House, University of Southampton Science Park, Southampton SO16 7NS, UK. xiii

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17 DOI: /hsdr02170 HEALTH SERVICES AND DELIVERY RESEARCH 2014 VOL. 2 NO. 17 List of abbreviations COPD FFS GP GSF chronic obstructive pumonary disease fee-for-service genera practitioner God Standards Framework ONS PCRN PCT QOF Office for Nationa Statistics primary care research network primary care trust Quaity and Outcomes Framework HES Hospita Episode Statistics REC research ethics committee IMD IT LCP Index of Mutipe Deprivation information technoogy Liverpoo Care Pathway SDO SHA Service Deivery and Organisation Strategic Heath Authority Queen s Printer and Controer of HMSO This work was produced by Hanratty et a. under the terms of a commissioning contract issued by the Secretary of State for Heath. This issue may be freey reproduced for the purposes of private research and study and extracts (or indeed, the fu report) may be incuded in professiona journas provided that suitabe acknowedgement is made and the reproduction is not associated with any form of advertising. Appications for commercia reproduction shoud be addressed to: NIHR Journas Library, Nationa Institute for Heath Research, Evauation, Trias and Studies Coordinating Centre, Apha House, University of Southampton Science Park, Southampton SO16 7NS, UK. xv

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19 DOI: /hsdr02170 HEALTH SERVICES AND DELIVERY RESEARCH 2014 VOL. 2 NO. 17 Pain Engish summary At the end of ife, a move into or out of hospita, a care home or a hospice may be a disruptive event for an oder person, with consequences for their heath and we-being. Such moves are beieved to be common in the months before death, costy to services and are not aways of benefit to patients. This study combined the perspectives of a range of stakehoders with anaysis of hospita data to understand the infuences on, and consequences of, transitions at the end of ife for oder aduts in Engand. Interviews were conducted with oder patients in their ast year of ife, bereaved famiy carers of oder peope, and service providers and commissioners in primary care, hospita, hospice, socia care and ambuance services. Patients and carers experiences of transitions were of a disjointed system where the working of organisations often took priority over individua needs. Many famiy carers were co-ordinators and providers of care at home who perceived that they were overooked during hospita stays. Good reationships and communication between professionas in different settings and sectors were recognised by famiies as one of the most important infuences on transitions but this was rarey acknowedged by staff. Patients and carers manage many aspects of end-of-ife care for themseves. Identifying ways to strengthen their voices, particuary in hospita settings, woud be wecomed and may reduce unnecessary moves at the end of ife. It is not cear why the experiences of carers appear to have changed itte in recent years, despite the introduction of a range of reevant poicies. Queen s Printer and Controer of HMSO This work was produced by Hanratty et a. under the terms of a commissioning contract issued by the Secretary of State for Heath. This issue may be freey reproduced for the purposes of private research and study and extracts (or indeed, the fu report) may be incuded in professiona journas provided that suitabe acknowedgement is made and the reproduction is not associated with any form of advertising. Appications for commercia reproduction shoud be addressed to: NIHR Journas Library, Nationa Institute for Heath Research, Evauation, Trias and Studies Coordinating Centre, Apha House, University of Southampton Science Park, Southampton SO16 7NS, UK. xvii

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21 DOI: /hsdr02170 HEALTH SERVICES AND DELIVERY RESEARCH 2014 VOL. 2 NO. 17 Scientific summary Background As ife expectancy increases, oder aduts are iving and dying with mutipe conditions. Heath-care needs are therefore compex, and care may be deivered by a range of professionas in different settings. At the end of ife, a move into or out of hospita, a care home or a hospice is, potentiay, one of the most disruptive events for an oder adut, with consequences for the menta, physica and emotiona we-being of the oder adut and asting memories for their famiy. Oder aduts experiences as they move between paces of care offer an opportunity to expore the extent of coherence and integration at interfaces between professionas, services and approaches to care, from the perspectives of the care recipient and their famiy. Ensuring that the experience for the patient is co-ordinated, and that any moves are defined by individua needs rather than by system imperatives, is crucia to their we-being. Existing evidence from outside the UK suggests that such transitions occur frequenty in the months before death, contribute itte to improving symptom contro or we-being, and may be a source of distress to patients and unnecessary costs to services. This study sought to combine the perspectives of patients, famiy carers, providers and commissioners of care with anaysis of activity data to understand the infuences on, and consequences of, transitions between settings for oder aduts at the end of ife. Objectives The aim of this study was to understand the experiences of, infuences on and consequences of transitions between settings for oder aduts at the end of ife, using heart faiure, stroke and ung cancer as exempar conditions. It addressed the foowing research objectives: to expore the effect of transitions towards the end of ife on patient and carer experiences, incuding heath status, quaity of ife, symptom contro and satisfaction with care to understand the factors that infuence decisions about transitions in the nature and ocation of care to eicit patient and provider views on the appropriateness of different transition patterns and the factors that constrain or shape decisions to describe transitions in and out of hospita at the end of ife for oder peope with ung cancer and heart faiure in Engand to identify individua- and service-eve factors associated with frequency of transitions. Methods This was a mixed-methods study, composed of four parts: 1. in-depth interviews with oder aduts in the ast year of ife, diagnosed with heart faiure, ung cancer or stroke 2. quaitative interviews and structured questionnaire with bereaved carers of oder adut decedents 3. teephone interviews with commissioners and providers of heath, socia care and ambuance services, with case scenarios derived from the interviews with carers 4. anaysis of inked Hospita Episode Statistics and mortaity data. Queen s Printer and Controer of HMSO This work was produced by Hanratty et a. under the terms of a commissioning contract issued by the Secretary of State for Heath. This issue may be freey reproduced for the purposes of private research and study and extracts (or indeed, the fu report) may be incuded in professiona journas provided that suitabe acknowedgement is made and the reproduction is not associated with any form of advertising. Appications for commercia reproduction shoud be addressed to: NIHR Journas Library, Nationa Institute for Heath Research, Evauation, Trias and Studies Coordinating Centre, Apha House, University of Southampton Science Park, Southampton SO16 7NS, UK. xix

22 SCIENTIFIC SUMMARY Participants and methods Three groups of participants were recruited to this study: 1. Patients: thirty aduts aged years iving in the north-west region with heart faiure, ung cancer or stroke recruited via secondary care physicians and speciaist nurses and judged to be in the ast year of ife. (The referring heath professiona answered no to the question woud you be surprised if this patient was to die within 12 months?.) Patients were provided with written information about the study by heath professionas and invited to contact the research team to opt in to the study. 2. Bereaved carers: one hundred and eighteen bereaved famiy carers of oder aduts who died in the previous year with heart faiure, ung cancer or stroke (and sma numbers with chronic obstructive pumonary disease, breast and coorecta cancers). Participants in the north-west, south-centra and south-west regions were identified and invited into the study by the genera practitioners (GPs) of decedents. Around haf of the participants were from the same generation as the decedent, and haf were intergenerationa carers. 3. Heath, socia care and ambuance service providers and commissioners: forty-three professionas (senior managers, consutants, GPs) were recruited by direct approach to heads of departments in reevant organisations, known contacts of the research team and sef-referra foowing pubicity about the study in professiona and organisationa networks in the north-west, south-centra and south-west regions. Quaitative in-depth interviews Face-to-face quaitative in-depth interviews were conducted with patients and carers using separate topic guides. Professionas were interviewed by teephone in most cases, using a topic guide and case scenarios constructed from the data coected from carers. A interviews were recorded and transcribed verbatim. The data were anaysed using a framework approach. Structured questionnaire A structured questionnaire, based on the vaidated VOICES survey, was competed with bereaved carers and anaysed with descriptive statistics. Quantitative anaysis of inked hospita and mortaity data Data were obtained on hospita admissions in the ast year of ife for peope who died in Engand, aged over 75 years with a diagnosis of heart faiure or ung cancer, between 2001 and Patterns in use of hospita care in reation to time to death were described by socioeconomic status and diagnosis. Research findings Quaitative interviews Patients and carers experiences of transitions were of a disjointed system, in which organisationa processes were prioritised over individua needs. Carers fet unheard and unsupported, with itte contro or opportunities for effective advocacy. Carers were pivota to patients experiences across transitions, but there was no shared understanding with professionas of their roe, experiences or expectations. Many of them acked the knowedge and support to fufi their roe as they woud ike. There was a particuar need for more support in arranging transfers to care homes. Patients perceived carers to be a fexibe and essentia component of their end-of-ife care. Carers switched from being a service provider and co-ordinator, when the patient was at home, to a visitor roe when the patient went into hospita. Staff had dichotomised views of carers, as either patients in their own right, requiring hep, or resources who smooth the professionas path. xx NIHR Journas Library

23 DOI: /hsdr02170 HEALTH SERVICES AND DELIVERY RESEARCH 2014 VOL. 2 NO. 17 Choice was not a concept recognised by patients or carers, and a mismatch was observed between the rhetoric of choice and the seective appication of end-of-ife poicies. Choice was offered to patients and carers by some staff, ony if they were expected to make a professionay approved seection. An abiity to purchase services coud infuence the timing and nature of transitions. Out-of-hours GP services and care homes were perceived by many to be promoters of transitions at the end of ife. Care homes isoation from the NHS, staff confidence and training were proposed as potentia causes. Oder peope without carers or those iving aone were restricted in their care choices, and it was widey acknowedged by staff that their care might have been disadvantaged by their circumstances. GPs saw themseves as centra figures in end-of-ife transitions. Other discipines and carers concurred with this, but were critica of their abiities and expertise. Much of the confict arose from different views on the importance of adhering to guideines and protocos. The quaity of reationships and communication across settings and between heath and socia care was identified by carers as an important infuence on patients experiences of transitions. Interviews with professionas highighted differences in speed of working and approaches to patients or cients, as we as anguage and cuture. Co-ocation was perceived to hep buid stronger reationships. The dominance of the medica mode in end-of-ife care was fet by those in socia care to be a barrier to creating cose working reationships between heath and socia care. The impact of interprofessiona tensions on their own work was keeny fet, but the effect on patients transitions went unacknowedged by staff. The quaitative data identified patient, heath service and interface factors that were associated with more frequent or probematic transitions, as foows. Patient factors Oder age. Absence of a carer. Unanticipated deterioration in heath status. Non-cancer diagnoses. Heath service factors No ongoing reationship with a GP. Contact with out-of-hours doctors eading to hospita admission. Professionas abiity to prognosticate and communicate. Interface factors Structura factors such as separate heath and socia care budgets. Differing approaches to protocos and guideines. A ack of shared responsibiity for patients across settings. Provision of information and support to aid famiy decisions. Questionnaire with carers Anaysis of the structured questionnaire produced findings supportive of the quaitative data anaysis, with positive views of staff but ess satisfaction with overa experiences of transitions. Most decedents spent time at home in the ast year of ife, and were admitted to hospita at east once. One in five decedents in this study spent some time in a care home. A majority of hospita admissions were prompted by worsening symptoms or coapse (56%), and one in four respondents reported a change in quaity of ife (23%) or heath status (24%) as a resut of the transition. The GP was the main contact person for most famiies and the care they provided was rated highy. However, fewer than one in five respondents (17%) fet that a of the heath and socia services in the community worked we together (at east to some extent) and Queen s Printer and Controer of HMSO This work was produced by Hanratty et a. under the terms of a commissioning contract issued by the Secretary of State for Heath. This issue may be freey reproduced for the purposes of private research and study and extracts (or indeed, the fu report) may be incuded in professiona journas provided that suitabe acknowedgement is made and the reproduction is not associated with any form of advertising. Appications for commercia reproduction shoud be addressed to: NIHR Journas Library, Nationa Institute for Heath Research, Evauation, Trias and Studies Coordinating Centre, Apha House, University of Southampton Science Park, Southampton SO16 7NS, UK. xxi

24 SCIENTIFIC SUMMARY one in three (32%) reported that a or most of the community staff knew enough about the decedent s condition. One in four (25%) carers reported that they did not discuss their concerns as much as they woud have iked, and a simiar proportion were invoved a itte, or not at a, in decisions about care. Overa, a minority of carers reported that heath and socia services were not we co-ordinated (31%) but ony 22% fet that any of the transitions in the ast 3 months coud have been avoided. Use of hospita services in the year before death Anaysis of inked Hospita Episode Statistics and mortaity data quantified the number of hospita transitions experienced by oder aduts in the ast year of ife. Between 2001 and 2010, 300,304 peope aged over 75 years were admitted to hospita in Engand at east once in their ast year of ife with a diagnosis of ung cancer or heart faiure. The median number of admissions per decedent in the 12 months before death was 1.0 (range 1 29 ung cancer, 1 39 heart faiure). Eighty-five per cent of ung cancer patients and 72% of heart faiure patients underwent a transition into hospita in the ast 3 months of ife. In mutivariate anaysis for heart faiure cases, ower socioeconomic status, given by the Index of Mutipe Deprivation (IMD), being mae and younger age were associated with numbers of hospita admissions above the 90th centie. For ung cancer cases, younger age and mae sex were associated with numbers of admissions above the 90th centie. Peope with ung cancer in the most disadvantaged IMD quintie were ess ikey to be admitted frequenty, adjusting for age and sex. In this data set, residence in a care home was not associated with frequent admissions to hospita. Impications This study identified deficiencies in care across transitions for oder peope at the end of ife, and a number of areas where intervention may enhance patient and famiy experiences. Transitions between settings occurred near to death and were characterised by a reiance on famiy members to co-ordinate the input and fi the gaps between services. In contrast to studies of end-of-ife transitions in other countries, the organisation and way in which services were deivered were a greater cause of concern than other aspects of care, such as symptom contro. Some of the issues noted, such as communication and providing care with dignity, were important to a patients, not ony in reation to transitions. Others, such as the need for a shared responsibiity for patient care in interprofessiona working, were more specific to transitions. Patients described diverse experiences of care, whereas many of the chaenges reported in carers accounts were common to a. One of the most important findings of this study was the observation that carers experiences are simiar to historica accounts, despite the introduction of reevant poicies. There is a need among heath and socia care professionas to agree on and promote the roe of caregivers in transitions. The data aso point to the benefits of carifying responsibiities for co-ordinating care from mutipe sources and promoting sef-management in care towards the end of ife, as this is the preference of patients and famiies. Our investigation into the care of oder aduts undergoing transitions at the end of ife compements studies of transitiona care for oder aduts from the USA. Combined with the existing iterature, it provides a robust foundation for the design of an intervention appropriate to the NHS context that wi enhance care across transitions for oder aduts with paiative care needs. Recommendations on priorities for future research Our findings suggest that the foowing shoud be high priorities for future research: 1. Investigation into why the experiences of end-of-ife carers appear to be unchanged, despite the impementation of severa reevant poicies in recent years. 2. Exporation of the acceptabiity, potentia scope and ways of faciitating sef-management with patients and carers, to reduce unnecessary end-of-ife transitions. xxii NIHR Journas Library

25 DOI: /hsdr02170 HEALTH SERVICES AND DELIVERY RESEARCH 2014 VOL. 2 NO Exporation of the consequences for patients and famiies of interprofessiona tensions and identifying ways to reduce them. This shoud incude questioning or affirming the centraity of GP care. 4. Finding ways to ensure that peope who ive aone, or without carers, exercise choices and receive equitabe end-of-ife care. 5. Identification of any unmet needs for training for professionas invoved in co-ordinating end-of-ife care across settings. 6. Deveopment and testing of an intervention to enhance patients experiences across transitions. Our findings suggest that interventions in the foowing areas may offer the greatest potentia benefits: harmonising understanding of the carers roe and enhancing their abiity to infuence patients experiences of care in hospita settings improving carers and patients abiities to recognise deteriorating heath and pre-empt an urgent need for a transition promoting communication between professionas that is timey and crosses settings deveoping modes for shared responsibiity for patients across settings. Funding Funding for this study was provided by the Heath Services and Deivery Research programme of the Nationa Institute for Heath Research. Queen s Printer and Controer of HMSO This work was produced by Hanratty et a. under the terms of a commissioning contract issued by the Secretary of State for Heath. This issue may be freey reproduced for the purposes of private research and study and extracts (or indeed, the fu report) may be incuded in professiona journas provided that suitabe acknowedgement is made and the reproduction is not associated with any form of advertising. Appications for commercia reproduction shoud be addressed to: NIHR Journas Library, Nationa Institute for Heath Research, Evauation, Trias and Studies Coordinating Centre, Apha House, University of Southampton Science Park, Southampton SO16 7NS, UK. xxiii

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27 DOI: /hsdr02170 HEALTH SERVICES AND DELIVERY RESEARCH 2014 VOL. 2 NO. 17 Chapter 1 Background, context and scope Introduction As ife expectancy increases, oder aduts are iving and dying with mutipe conditions. Their heath-care needs are compex, and may invove a range of professionas working in different settings. Ensuring that the patients experience co-ordinated and coherent care, and that moves occur because of individua needs rather than system imperatives, is crucia to patients we-being. Such patient-focused care has attracted much attention in recent years in an effort to improve individua outcomes 1 and promote cost-containment and efficient use of resources. At the end of ife, a move into or out of hospita, a care home or a hospice is potentiay one of the most disruptive events for oder aduts and their carers, with consequences for their menta, physica and emotiona we-being. Oder aduts are particuary sensitive to the consequences of inadvertent aterations to their care, for exampe existing medication regimes faiing to be maintained or foow-up bood tests not being performed. Patients experiences of moving between paces of care offer an opportunity to expore the extent of integration at the interfaces between different professiona roes, services and approaches to care. Understanding the chaenges of providing high-quaity care at transitions between care settings for oder aduts is a crucia step towards improving patients and famiies experiences of care in the fina months, weeks and days of ife. Background More peope are iving into od age across the word. There are currenty 650 miion peope aged over 60 years, and expected to reach 2 biion by In Engand, amost two-thirds of the haf a miion peope who die each year are aged over 75 years. 3 Whie some deaths may be unexpected, most deaths foow a period of chronic iness requiring ongoing management, often in different care settings. Definition and importance of transitions A transition occurs between two ocations or settings of care, for exampe moving from hospita to a care home. It may aso represent a shift in the nature of care, such as the decision not to continue with curative treatments. For some oder aduts with chronic progressive conditions, the reaisation or acknowedgement that the aim of treatment is to contro symptoms, and no onger to proong ife, may come ate in the iness. In a number of common conditions, such as heart faiure, the course of an iness may be unpredictabe. In such cases, cinica considerations and the wishes of patients and famiy have to be weighed and discussed to judge the appropriate time to move towards paiative care. Therapies that improve symptoms may aso engthen surviva and the possibiity of a change of gear from curative to paiative care may never arise. The nature and ocation of care are interdependent and changing one may naturay infuence the other; a move to a hospice or a return to primary care, for exampe, may offer an opportunity to broach sensitive subjects that are overooked in the faster-paced word of acute medicine. Hence, athough this study has focused on transition as a change in setting, it wi have reevance to the reationship between active and paiative care. For many oder aduts, the majority of transitions wi take pace in the 12 months before death. The proportion of peope admitted to hospita in their ast year of ife rises with age. Peope over the age of 85 years are ess ikey to be admitted to hospita in their ast year, but, when they are, they remain in hospita for onger periods than younger aduts. 4 Athough improved detection and treatment of disease Queen s Printer and Controer of HMSO This work was produced by Hanratty et a. under the terms of a commissioning contract issued by the Secretary of State for Heath. This issue may be freey reproduced for the purposes of private research and study and extracts (or indeed, the fu report) may be incuded in professiona journas provided that suitabe acknowedgement is made and the reproduction is not associated with any form of advertising. Appications for commercia reproduction shoud be addressed to: NIHR Journas Library, Nationa Institute for Heath Research, Evauation, Trias and Studies Coordinating Centre, Apha House, University of Southampton Science Park, Southampton SO16 7NS, UK. 1

28 BACKGROUND, CONTEXT AND SCOPE means that some oder aduts are surviving with mutipe comorbidities and compex heath-care needs, recent decades have seen reductions in morbidity and functiona decine among oder aduts. 5 7 Increasing surviva has not invariaby ed to more years of sickness and disabiity, and the tota time spent in hospita at oder ages has not increased, though the ast year of ife remains a time of high heath service utiisation Patterns of hospita and other service utiisation suggest that rapid increases in the costs of end-of-ife care are unikey to be reaised. Nevertheess, the arge number of oder decedents wi mean that costs are sti considerabe. Findings from time-to-death cost anayses are not entirey consistent across different heath systems and study methodoogies. Approaching death is associated with increased heath service expenditures, and costs of care for decedents in the year before death are greater than for comparabe survivors In some countries, this effect is diminished in extreme od age because of substitution of care in other settings (such as care homes) for hospita admission. 17,18 The overa effect of increased surviva appears to be to deay the years of high spending to the end of ife, with some shift away from acute care costs. Transitions, therefore, are ikey to be a major contributor to overa heath-care costs. Ensuring that they are necessary and that they enhance heath outcomes and experiences shoud, therefore, be a priority. Terminoogy There are many different, overapping, concepts, processes and abes appied to the organisation of care that is provided by mutipe payers. Many of them originate from work in the US heath-care market, and have meanings specific to their origina context. Transitiona care, for exampe, is focused on processes and defined as a set of actions to ensure co-ordination and continuity of heath care as patients transfer between different ocations or eves of care within the same ocation. 19 This is simiar to the more broady defined integrated care a process of reducing fragmentation, improving connections between the different components of heath and socia services and deivering continuity of care. 20,21 Case management is a too that is we estabished within the US-managed care system, 22 which aims to integrate services around the needs of peope with compex ong-term conditions. 23 Case management encompasses case-finding, assessment, care panning, and care co-ordination. Amid some definitiona and conceptua confusion, it is possibe to observe common components of initiatives to improve care across settings. Mutidiscipinary teams have been identified as a means of providing integrated care, though moves to achieve this have not focused specificay on transitions between settings. Many initiatives to integrate care rey on having a dedicated worker, often a nurse, who co-ordinates, and may aso provide care. The evidence for such approaches to management preventing readmissions to hospita or improving quaity of care at the end of ife is imited, as studies have focused on highy seected patient groups, often excuding peope who are known to be terminay i, or iving in the community. 24,25 In some circumstances, case management has been abe to improve the experience of patients and carers and reduce use of hospita services, 23 and there is some evidence to support the adoption of disease-specific strategies to improve transitions between care settings for oder aduts. Cameron and Gignac 26 recommended that recognising the changing needs of reatives caring for stroke survivors who moved from hospita to home woud assist professionas in providing more timey and appropriate support. For heart faiure patients, a nurse-directed, mutidiscipinary intervention was found to improve the quaity of ife and reduce hospita use for edery patients. 27 Continuity of care is a common thread across amost a of this work, either as a core component or as an outcome of any intervention. Care across transitions and continuity of care In the ast decade, Service Deivery and Organisation (SDO) has funded a range of work on the concept, measurement and promotion of continuity of care. 28 Freeman et a. 29 originay defined continuity as the experience of a co-ordinated and smooth progression of care from the patient s point of view. He went on to propose a six-dimension mode of continuity, that was ater refined to three: (1) informationa continuity reates to the use of past information to ensure that current care is appropriate; (2) reationship continuity 2 NIHR Journas Library