REPORT BY THE COMPTROLLER AND AUDITOR GENERAL HC

Transcription

1 Ed of Life Care REPORT BY THE COMPTROLLER AND AUDITOR GENERAL HC 1043 Sessio November 2008

2 The Natioal Audit Office scrutiises public spedig o behalf of Parliamet. The Comptroller ad Auditor Geeral, Tim Burr, is a Officer of the House of Commos. He is the head of the Natioal Audit Office which employs some 850 staff. He ad the Natioal Audit Office are totally idepedet of Govermet. He certifies the accouts of all Govermet departmets ad a wide rage of other public sector bodies; ad he has statutory authority to report to Parliamet o the ecoomy, efficiecy ad effectiveess with which departmets ad other bodies have used their resources. Our work saves the taxpayer millios of pouds every year: at least 9 for every 1 spet ruig the Office.

3 Desig ad Productio by NAO Marketig & Commuicatios Team DP Ref: This report has bee prited o Cosort Royal Silk ad is produced from a combiatio of ECF (Elemetal Chlorie Free) ad TCF (Totally Chlorie Free) wood pulp that is fully recyclable ad sourced from carefully maaged ad reewed commercial forests. The rage is maufactured withi a mill which is registered uder the BS EN ISO 9001 accreditatio, which provides the highest stadard of quality assurace.

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5 Ed of Life Care LONDON: The Statioery Office Ordered by the House of Commos to be prited o 24 November 2008 REPORT BY THE COMPTROLLER AND AUDITOR GENERAL HC 1043 Sessio November 2008

6 This report has bee prepared uder Sectio 6 of the Natioal Audit Act 1983 for presetatio to the House of Commos i accordace with Sectio 9 of the Act. Tim Burr Comptroller ad Auditor Geeral Natioal Audit Office 18 November 2008 The Natioal Audit Office study team cosisted of: Kare Jackso, Tom McBride, Shamail Ahmad, Rosie Buckley, Ady Nichols, Haah Paye, Kirste Paye, Duca Richmod, Coli Ross ad Steph Woodrow uder the directio of Kare Taylor. This report ca be foud o the Natioal Audit Office web site at For further iformatio about the Natioal Audit Office please cotact: Natioal Audit Office Press Office Buckigham Palace Road Victoria Lodo SW1W 9SP Tel: equiries@ao.gsi.gov.uk Natioal Audit Office 2008

7 CONTENTS SUMMARY 4 PART ONE The role of ed of life care services 10 PART TWO The extet ad quality of ed of life care 14 services i Eglad PART THREE Providig more effective ed of life care 25 APPENDICES 1 methodology 32 2 Detailed examiatio of patiet 36 records i Sheffield to idetify alteratives to hospital 3 Ecoomic modellig 39 4 Detailed PCT reviews 46 5 Iteratioal comparisos 48 6 Case examples 52 GLOSSARY 56 Cover, St. Christopher s Hospice, Lodo. Page 10 photograph courtesy of the Motor Neuroe Disease Associatio, Jacquelie Caitli, who lost her battle with MND i 2008, pictured with her childre. Page 14 Alamy.com. Page 25 Marie Curie Cacer Care.

8 SummARy 1 People are geerally livig loger ad, of the half a millio people who die each year i Eglad, two-thirds are over 75 years old. The majority of deaths occur i a acute hospital (hospital) ad do so followig a period of chroic illess such as heart disease, cacer, stroke, chroic respiratory disease, eurological disease or demetia. Most people wish to be cared for ad die i their home but the umber of people who are able to do so varies with age, geographical area ad, most sigificatly, by coditio. 2 Ed of life care services aim to support people approachig the ed of their life to live as well as possible util they die. Ed of life care is ofte delivered by a large umber ad wide variety of geeralist staff such as doctors, urses, allied health professioals ad social workers, although the exact umber of people ivolved i deliverig this care is ot kow. Specialist palliative care is a aspect of ed of life care delivered by health ad social care staff with specific traiig i the maagemet of pai ad other symptoms ad the provisio of psychological, social ad spiritual support. Aroud 5,500 staff work i specialist palliative care. 3 The provisio of ed of life care services has become icreasigly complex: people are livig loger ad the icidece of frailty ad multiple coditios i older people is icreasig. As a result, people approachig the ed of their life require a combiatio of health ad social care services provided i the commuity, hospitals, care homes, or hospices. Care is also provided by iformal carers such as family members, close frieds or voluteers. 4 END OF LIFE CARE

9 summary 4 Primary care trusts (PCTs) spet a estimated 245 millio o specialist palliative care services i The Departmet of Health (the Departmet) estimates that the overall aual cost of ed of life care to NHS ad social care services is measured i billios of pouds. We estimate that the aual cost to NHS ad social care services of providig care to cacer patiets i the 12 moths prior to death (27 per cet of deaths) is 1.8 billio. 5 The Departmet has ackowledged that the priority give to ed of life care withi NHS ad social care services has bee relatively low, ad has worked to raise its profile i recet years. I July 2008, followig cosultatio over two years, the Departmet published its Ed of Life Care Strategy (the Strategy) which aims to improve the provisio of care for all adults approachig the ed of their life, icludig support for their families ad carers. The Strategy cetres o: improvig the provisio of commuity services by, for example, makig rapid respose commuity ursig services available i all areas 24 hours a day seve days a week, ad improvig coordiatio of care betwee local authorities ad PCTs; equippig health ad social care staff at all levels with the ecessary skills to commuicate with, ad deliver care to people approachig the ed of life, ad their carers; ad developig specialist palliative care outreach services by ecouragig PCTs ad hospices to work together to provide appropriate support to all adults i the commuity, regardless of their coditio. 6 The Departmet cosiders that the implemetatio of its Strategy should reduce iappropriate admissios to hospital ad eable more people approachig the ed of their life to live ad die i the place of their choice. To this ed the Departmet has committed additioal fudig of 286 millio over ad Agaist this backgroud, this report cosiders the scope for improvig the patter of care i light of the available evidece o the impact ad appropriateess of existig provisio. 7 I preparig this report, we drew o the kowledge ad experieces of a wide rage of health ad social care staff ivolved i the delivery of ed of life care ad, most importatly, people approachig the ed of their life ad those carig for them. I additio to our cesuses of PCTs ad idepedet ad NHS hospices ad our survey of care homes, three uique features of our methodology (Appedix 1) iclude a detailed examiatio of the patiet records of 348 people who died i Sheffield i October 2007 to idetify the potetial for people to die i their preferred place of care (Appedix 2); modellig of the provisio of ed of life care services to idetify whether the quality of such services ca be improved withi existig resources (Appedix 3); ad detailed reviews of ed of life care services provided by three PCTs (Appedix 4). Fidigs Place of care 8 Research suggests that the majority of people (betwee 56 ad 74 per cet) express a preferece to die at home, although this proportio may declie as death becomes more immiet ad people wat access to more extesive support, such as from a hospice. Mortality statistics for 2006 show, however, that 35 per cet of people die at home or i a care home. Fifty eight per cet of all deaths occur i a hospital, although this figure varies from 46 per cet to 77 per cet betwee PCTs. Place of death also varies by coditio, ad cacer patiets are more likely tha others to die at home or i a hospice; the majority of deaths from demetia occur i care homes; ad the vast majority of deaths from heart disease ad pulmoary disease occur i hospital. For some people approachig the ed of their life, however, there will be cliical reasos for admissio to hospital, ad for some it is their preferred place of care. 9 A lack of prompt access to services i the commuity leads to people approachig the ed of their life beig uecessarily admitted to hospital. The absece of 24 hour respose services ad timely access to advice ad medicatio leads to uplaed admissios. I additio, iformatio o patiets is ot always captured or shared effectively betwee the differet agecies ivolved i deliverig care. This ca lead to Do Not Attempt Resuscitatio orders ot beig kow or recogised to providers such as out of hours GPs ad the ambulace service, resultig i iappropriate admissios to hospitals. 10 The proportio of care home residets who die i hospital could be reduced. Our survey foud that a quarter of care home residet deaths occur i a hospital. There were also wide variatios betwee care homes i the umber of residets who die i hospital, ragig from oe to all residets. I oe PCT, the proportio of residets dyig i care homes could have bee icreased from 61 per cet to 80 per cet, if greater support ad advice had bee provided to those care homes. Ed of Life Care 5

10 summary 11 Idepedet hospices have a importat role i the delivery of ed of life care services, both i ipatiet care ad icreasigly i day care ad i services i care homes ad peoples homes. Idepedet hospices curretly provide aroud 2,150 ipatiet beds, compared to 450 provided by NHS hospices. Although traditioally focused o cacer, hospices are also icreasigly offerig services to people with other coditios. Whilst the proportio of o-cacer patiets receivig hospice services is low, it is growig. Meetig the eeds of patiets ad carers 12 NHS ad social care services are ot meetig the basic eeds of may people approachig the ed of their life. The fidigs of published research ad work carried out by the Healthcare Commissio were that people approachig the ed of their life are ot always afforded the digity ad respect they deserve. Our focus groups idetified a similar picture, where the stadard of hospital care ad social service provisio was below what had bee expected ad care plas for patiets had ot bee draw up ad agreed. These issues had uecessarily caused stress for people approachig the ed of their life ad those carig for them. 13 Despite all carers beig etitled to a assessmet of their health ad social care eeds, our cesus of PCTs foud that oly 29 per cet provided such assessmets as stadard. PCTs also do ot routiely record whether carers have received a assessmet. Carig for a perso approachig the ed of their life ca place a heavy burde o the physical, emotioal ad metal wellbeig of carers but oly 24 per cet of PCTs stated that they offer respite care to all who eed it. The skills ad traiig of health ad social care staff 14 May healthcare professioals will come ito cotact with people approachig the ed of their life, but our surveys foud that oly 29 per cet of doctors ad 18 per cet of urses had received ay pre-registratio traiig i ed of life care. I additio, oly 39 per cet of doctors ad 15 per cet of urses had received pre registratio traiig i commuicatig with patiets approachig the ed of their life. 15 Niety care homes respodig to our survey (74 per cet) stated that they provide specific traiig o ed of life care, but i less tha half of cases was this traiig compulsory. Data collected by Skills for Care i 2007 show that as few as seve per cet of care home workers ad five per cet of ursig care home workers have a NVQ level 3 qualificatio which icludes optioal traiig i supportig people at the ed of life. Staff turover rates also suggest that care homes are traiig fewer staff tha they lose o a aual basis. Approaches to improvig the delivery of ed of life care 16 Fifty four per cet of geeral urses ad a third of doctors reported beig traied i the use of at least oe of the three Natioal Istitute for Health ad Cliical Excellece (NICE) recommeded approaches to ed of life care (Gold Stadards Framework, Liverpool Care Pathway or Preferred Priorities for Care). For those specialisig i palliative care, the figures were 91 per cet of urses ad 95 per cet of doctors. These approaches, rolled out as part of the Ed of Life Care Programme betwee 2003 ad 2007, are well regarded by a rage of users ad both doctors ad urses reported that their use had improved their cofidece i deliverig ed of life care. There has, however, bee little measuremet of the beefits for patiets of usig these approaches ad the direct beefit to patiet care associated with their use has yet to be fully demostrated. What research has bee doe has show that their use ca decrease uecessary hospital utilisatio ad icrease the likelihood of people dyig i their preferred place of care. Commissioig services 17 PCTs expediture o specialist palliative care services does ot reflect the patter of eed. Although there is likely to be some variatio i expediture depedig o eed ad the delivery models used, our cesus of PCTs ad data collected by the Departmet foud large variatios i the average amout spet o specialist palliative care services for idividuals approachig the ed of their life ( 154 to 1,684 per death). There is also variatio i the availability of palliative care beds, ad i the umber of staff withi hospital ad commuity specialist palliative care teams. The provisio of care home places ad hospice services is also i may cases ot proportioal to eed. 18 Coordiatio betwee health ad social care services i relatio to the plaig, delivery ad moitorig of ed of life care is geerally poor ad is hampered by differet fudig streams. It ca be difficult to determie what proportio of patiets eeds are medical ad fall uder the NHS budget, or o-medical (social care) ad are fuded, i part, by local authorities ad by the patiet based o a eeds assessmet. A lack of itegrated services ad a absece of a sigle poit of cotact to coordiate care ca lead to particular frustratio. 6 Ed of Life Care

11 summary 19 I , hospices provided ipatiet services to over 38,000 people ad supported over 112,000 people i the commuity, yet curret cotractual arragemets with PCTs limit their ability to pla ad develop services. Sevety per cet of hospices have oly oe year cotracts with PCTs. O average, idepedet hospices received fudig of some 31 per cet of their et expediture (approximately 130 millio) from PCTs i , though some received as much as 62 per cet. 20 The Departmet has ot yet implemeted a atioal tariff to uderpi commissioig of palliative care for NHS ad volutary sector providers. I its respose to the House of Commos Health Committee s 2004 report o palliative care, the Departmet stated that it was o course to implemet a atioal tariff which would allow full cost recovery by all palliative care providers by A umber of factors (for example, the lack of robust costig data) mea that it has ot bee possible for the Departmet to deliver a atioal tariff to this timescale. Whilst the Departmet cotiues to work towards delivery of a atioal tariff for specialist palliative care, there is o specific timetable. The potetial for improvig ed of life care services withi existig resources 21 Our detailed examiatio of patiet records i oe PCT foud that 40 per cet of patiets who died i hospital i October 2007 did ot have medical eeds which required them to be treated i hospital, ad early a quarter of these had bee i hospital for over a moth. Alterative places of care for these patiets idetified by our work were equally split betwee home based alteratives (i a patiet s ow home or a care home) ad bed based care i a hospice. Local data suggest there was sufficiet ipatiet palliative care capacity to take may of the patiets who died i hospital. ability to exted this aalysis to other coditios. People with other chroic coditios typically sped a greater proportio of their last year of life i hospital followig emergecy admissios, so there is likely to be scope for further redistributio of resources. Overall coclusio 23 The majority of people would prefer ot to die i hospital, but a lack of NHS ad social care support services mea that may people do so whe there is o cliical reaso for them to be there. There is scope for more people to die i their home, care home, or a hospice by improvig traiig of all NHS ad social care staff i uderstadig ad awareess of ed of life care eeds, ad extedig specialist palliative care services for those that eed them, regardless of their coditio. Improved delivery of these services will require more effective commissioig ad partership workig betwee the NHS, social services ad the volutary sector. The skills i ed of life care which have bee developed i the hospice movemet, primarily i workig with cacer patiets, could be exteded to patiets with other termial coditios, ad to the care home sector through outreach services ad traiig. 24 Give the potetial to redistribute resources idetified i our work, there is scope for PCTs to improve services i all settigs by deployig existig ad future resources more efficietly ad effectively i supportig people i their preferred place of care. To achieve this improvemet, there will be a cotiuig eed for the Departmet to support PCTs as they recofigure services ad redeploy resources to better meet the eeds of their local populatio. The followig recommedatios set out the actios required to address the problems we have idetified ad are i lie with the aims ad recommedatios of the Departmet s Strategy. 22 Reducig the amout of time people approachig the ed of their life sped i hospital could make resources available which could be used to better support people i their preferred place of care. We estimate that carig for cacer patiets i the last year of their life costs some 1.8 billio, ad that 104 millio could be redistributed to meet people s prefereces for place of care by reducig emergecy hospital admissios by te per cet ad the average legth of stay followig admissio by three days (a reductio of aroud 25 per cet i the curret average legth of stay). The lack of robust data o the cost of deliverig ed of life care to people with coditios other tha cacer limits our Ed of Life Care 7

12 summary Recommedatios For the Departmet of Health aimed at supportig implemetatio of its Strategy a b c The wishes of people approachig the ed of their life are ot always coveyed to those who eed to kow. Such data should ideally be captured i the Summary Care Record; but util it is fully operatioal, the Departmet through the atioal Ed of Life Care Programme should support PCTs ad strategic health authorities to develop protocols to help capture, documet, ad share accurate patiet iformatio o prefereces. This iformatio should be regularly updated ad shared with all providers across the health, social care, idepedet ad volutary sectors who ifluece decisios cocerig where ad how patiets receive care. There are sigificat gaps i the educatio ad traiig curricula for health ad social care professioals. The Departmet should work with the relevat professioal bodies to esure that all traiee doctors, urses, allied health professioals, ad registered social care staff receive a appropriate level of traiig i the delivery of ed of life care. Few care home staff have sufficiet traiig i providig ed of life care. The Departmet should stregthe the existig stadards agaist which care homes are assessed to iclude a requiremet to demostrate that staff have received such traiig, icludig: commuicatio skills; how to avoid uplaed emergecy admissios; the provisio of adequate pai maagemet; ad treatig all residets with digity ad respect. Further recommedatios for the Departmet of Health d The Gold Stadards Framework, Liverpool Care Pathway ad Preferred Priorities for Care provide a framework for improvig the delivery of ed of life care, icludig idetifyig the poit at which it should begi. Little is kow, however, about the direct patiet beefits associated with their use. The Departmet should commissio cliical evaluatios to determie whether their use results directly i better quality care for patiets. For example, the plaed survey of bereaved carers may be appropriate i the evaluatio of the Liverpool Care Pathway ad aspects of the Gold Stadards Framework ad Preferred Priorities for Care. e Commissioig ed of life care services is complex ad there is a limited uderstadig of the atioal picture of demad ad supply of ed of life care services. The Departmet should provide more iformatio ad, as appropriate, guidace to assist PCTs to meet ed of life care eeds ad allocate resources more efficietly ad effectively by buildig o the evidece from our work. The guidace should apply the World Class Commissioig Framework which was lauched i December 2007 ad aims to improve the way health ad social care services are commissioed. For PCTs as commissioers of ed of life care services i implemetig the Strategy f g h i Advace care plas seek to make clear a perso s wishes i aticipatio of a gradual deterioratio i their coditio, which may result i a loss of capacity to make decisios or to commuicate their wishes to others. PCTs should ecourage providers to develop care plas, icludig advace care plas, for those who wish to have oe, ad review ad update them as ecessary. A lack of coordiatio betwee services or a sigle poit of cotact ca lead to frustratio for patiets ad carers. PCTs should commissio effective coordiatio of ed of life care services through a sigle poit of cotact for patiets ad carers, icludig access to advice ad Carers Assessmets. PCTs geerally cotract with idepedet hospices o a aual basis leadig to ucertaity i plaig ad sometimes fiacial pressures. PCTs should work with idepedet hospices to develop three year cotracts, based o commissioed services ad levels of activity, to eable hospices to better pla the use of resources. These cotracts should be i accordace with the existig guidace o how the Govermet ad the volutary sector should work together. Hospitals will cotiue to have a importat role to play i ed of life care but these services do ot always meet the eeds of patiets ad carers. PCTs should use the World Class Commissioig Framework to commissio ed of life care services from hospitals to meet the eeds of patiets ad carers. They should obtai assurace from hospitals o whether staff have received sufficiet traiig; there is suitable ipatiet accommodatio icludig private, dedicated space for cosultatios for patiets, their relatives ad carers; ad there are timely ad effective discharge plaig arragemets. 8 Ed of Life Care

13 summary Further recommedatios for PCTs j k There is cosiderable variatio betwee PCTs i how specialist palliative care services are commissioed ad i the availability of such services to the local populatio. Whe workig with local authorities i carryig out Joit Strategic Needs Assessmets ad developig priorities for Local Area Agreemets, directors of public health should moitor whether the curret provisio of ed of life care services ad the eeds of the local populatio are fully assessed ad gaps addressed. PCTs should use our feedback reports o the results of our PCT cesus to compare ad cotrast the extet of their services. People s prefereces for place of care are geerally ot beig met ad access to hospice services is primarily for people with cacer. PCTs should explore the possibility of commissioig more services from hospices to support patiets with coditios other tha cacer. Such services could iclude the coordiatio of care i the locality, providig traiig to geeralist staff workig i other settigs, ad workig i partership with care homes to ehace the care that they provide. For the Geeral Medical Coucil ad the Nursig ad Midwifery Coucil l The curret reviews of medical ad ursig educatio preset a opportuity to improve the level of basic traiig which doctors ad urses receive i ed of life care. The Geeral Medical Coucil s Educatio Committee i its review of Tomorrow s Doctors should address how to improve skills i idetificatio, delivery, ad awareess of ed of life care. The review by the Nursig ad Midwifery Coucil of pre-registratio ursig educatio should address similar issues. Ed of Life Care 9

14 PART ONE The role of ed of life care services 1.1 Ed of life care services aim to support those with advaced, progressive, icurable illess to live as well as possible util they die. I Eglad, approximately 470,000 people die each year, almost two-thirds of whom are aged over 75 years. Aroud three quarters of deaths are predictable, 1 ad follow a period of chroic illess where people may eed access to ed of life care. Over the last 20 years, the populatio of Eglad has grow but the total umber of deaths per aum has declied. Curret projectios predict that the umber of deaths will cotiue to fall util 2012 ad thereafter there is likely to be a steady icrease i the umber of deaths. By 2030, it is predicted that the umber of deaths i the over 85s will have icreased from aroud a third to 44 per cet Faced with a termial illess such as cacer, pulmoary disease, heart failure or demetia, most people would prefer to die at home ad avoid dyig i hospital. 3,4,5,6 This proportio may declie as death becomes more immiet ad people wat access to more extesive support, such as from a hospice. Place of death is, however, iflueced by coditio ad the majority of deaths occur i hospital. As well as ot beig supported to die where they wish, the fidigs of published research ad work carried out by the Healthcare Commissio were that people approachig the ed of their life are ot always afforded the digity ad respect they deserve Ed of life care is a complex subject ad there is o precise poit at which it should begi. This lack of certaity leads to difficulties i idetifyig whe it is best to discuss with a perso how they would like to be cared for as they approach the ed of their life. People ofte require a complex mix of health ad social care services supplied by a rage of providers such as the NHS, social services, the volutary sector ad family ad frieds i a umber of settigs, icludig care homes, hospices ad the patiet s home. I may cases patiets will move betwee settigs durig the last year of their life. 1.4 The Departmet has recogised that much ca be leared from the holistic approach to care which has bee pioeered by hospices ad specialist palliative care services i Eglad over the past 40 years. The 2006 Mortality Statistics show that oly four per cet of people die i a hospice, the majority of whom have cacer. May more people receive other forms of hospice support through day care uits or i their ow home. I 2007, there were 174 hospice ipatiet uits 8 i Eglad offerig 2,600 beds. 9 Three quarters of uits ad beds are provided by the volutary sector, with the remaider provided by the NHS. 1.5 We estimate that the full cost of idepedet hospice services was some 500 millio i , of which PCTs fuded aroud 130 millio (26 per cet). PCTs report spedig a further 112 millio o specialist palliative care i NHS ru services, meaig the total sped o specialist palliative care i was just over 600 millio. 1 Based o the calculatio by Higgiso (2001) that the umber of people requirig palliative care is all cacer deaths ad two thirds of all deaths, 76 per cet (358,000) of deaths i Eglad i 2006 would have required some form of palliative care. Higgiso I (2001) The Palliative care for Lodoers: Needs, Experiece ad, Outcomes ad Future Strategy. NHS Executive Lodo Regio cited o page 32 of Marie Curie s Phase 1 Report o Baret. 2 Gomes B ad Higgiso I (2008) Where people die [ ]: past treds, future projectios ad implicatios for care. Palliative Medicie 22: See Views About Dyig at Home, 2004, survey commissioed by Marie Curie, carried out by You Gov. 4 Place of Care i Advaced Cacer: A Qualitative Systematic Literature Review of Patiet Prefereces, Higgiso I., Se-Gupta G. 2000, Joural of Palliative Medicie, vol.3, o.3. 5 Higgiso, I (2003) Priorities ad prefereces for ed of life care. 6 Norfolk Health Overview ad Scrutiy Committee (2005) How We Maage Death ad Dyig i Norfolk Couty ad Waveey. 7 Higgiso, I J ad Hall, S (2007). Rediscoverig Digity at the Bedside. British Medical Joural, vol. 335, o. 7612, pp Although there are 195 hospices i Eglad, ot all hospices offer ipatiet care. 9 Hospice ad Palliative Care Directory: Uited Kigdom ad Irelad END OF LIFE CARE

15 part oe Policies for ed of life care 1.6 I 2000, the NHS Cacer Pla idetified a eed to provide more support for specialist palliative care services, icludig hospices. Subsequetly, a cetral fud of 50 millio per aum was made available from From this additioal resource became available to PCTs as part of their baselie fudig. 1.7 I December 2003, followig the publicatio of Buildig o the Best: Choice, Resposiveess ad Equity i the NHS, the Departmet aouced that it would allocate 12 millio over three years to a NHS Ed of Life Care Programme. The Programme aimed to improve the quality of care at the ed of life for all people ad eable them to be cared for ad die i the place of their choice. It sought to do so by spreadig the best practice see i the palliative care admiistered to cacer patiets to those with other coditios through icreasig the umber of staff traied i the priciples of palliative care. 1.8 The Programme worked with strategic health authorities (SHAs) to ecourage the uptake i all healthcare settigs of the Gold Stadards Framework, the Liverpool Care Pathway ad Preferred Priorities for Care, which were recommeded by the Natioal Istitute for Health ad Cliical Excellece. 10 The Programme eded i March 2007 ad was subsequetly evaluated by the Sue Ryder Care Cetre for Palliative ad Ed of Life Studies at the Uiversity of Nottigham. 11 This work foud a umber of positive cosequeces were perceived by participats i the review although it was too early to assess the impact o patiet outcomes. 1.9 Lord Darzi s High Quality Care for All NHS Next Stage Review Fial Report, published i Jue 2008, provides a policy framework for the NHS i makig high quality care a cosistet part of everyoe s experiece of commuity care. This review recogises the eed for greater digity ad respect at the ed of life. As part of the review, all SHAs have produced a visio documet o eight cliical pathways, oe of which was ed of life care The Departmet s Strategy (Figure 1 overleaf), published i July 2008, attaches importace to ed of life care services, both for the people approachig the ed of their life ad also for their families ad frieds. The Departmet has made clear that a step chage is eeded to provide high quality care i all settigs to all patiets approachig the ed of their life. To this ed, the Strategy recommeds a care pathway approach to commissioig ad deliverig a itegrated service (Figure 2 o page 13).The Strategy committed to provide a extra 286 millio over two years to PCTs to improve ed of life care services. The scope of the study 1.11 Our work idetifies the curret picture of ed of life care services i Eglad ad what improvemets eed to be made to better meet the eeds of patiets ad carers. We evaluated whether: the services provided to people approachig the ed of their life ad their carers are fit for purpose; people are cared for i the place of their choice; health ad social care staff have sufficiet skills ad traiig to deliver ed of life care; the commissioig of ed of life care services meets the eeds of local populatios; the use of recommeded approaches to ed of life care (Gold Stadards Framework, Liverpool Care Pathway ad Preferred Priorities for Care) is improvig the delivery of ed of life care; ad ed of life care services could be improved withi existig ad plaed resources We focused o ed of life care for adults i their last year of life. Childre were excluded from the scope of our study because a report o childre s palliative care services was published i May We drew o a rage of methodologies set out i Appedix 1. We also examied the situatio i the USA, Caada, Scotlad, Wales ad Norther Irelad (Appedix 5). 10 Natioal Istitute for Health ad Cliical Excellece (2004) Improvig Supportive ad Palliative Care for Adults with Cacer. 11 The NHS Ed of Life Care Programme: A Evaluatio of Processes, Outcomes ad Impact Executive Summary. 12 Palliative Care Services for Childre ad Youg People i Eglad, Prof A Craft ad Sue Kiele (May 2007). Ed of Life Care 11

16 part oe 1 A summary of the Departmet s Ed of Life Care Strategy I July 2008, the Departmet published its Ed of Life Care Strategy, the aim of which is to improve access to high quality care for all adults approachig the ed of life, irrespective of age, geder, ethicity, religious belief, disability, sexual orietatio, diagosis or socio-ecoomic deprivatio. This care should be available wherever the perso may be: at home; i a care home; i hospital; i a hospice; or elsewhere. The Strategy was developed by a advisory board ad six workig groups cosultig over 300 stakeholders ad usig existig research. It builds o the moder hospice movemet; the NHS Ed of Life Care Programme; ad the Marie Curie Deliverig Choice Programme. Key areas to be addressed iclude: Raisig the profile of ed of life care ad chagig attitudes to death ad dyig i society. Strategic commissioig to provide a itegrated approach to the plaig ad delivery of ed of life care services across health ad social care, led by PCTs ad local authorities. Idetifyig people approachig the ed of life to allow a discussio about the perso s prefereces for the place ad type of care eeded. Care plaig to assess the eeds ad wishes of the perso ad to agree the subsequet care pla with the perso ad their carer. The care pla should be available to all who have a legitimate reaso to see it (for example, out of hours ad emergecy services). Coordiatio of care to esure that each perso approachig the ed of life receives coordiated care, perhaps with a cetral coordiatig facility providig a sigle poit of access for people. Rapid access to care with medical ad persoal care ad support for people 24 hours a day, seve days a week. The provisio of these services should prevet emergecy admissios to hospitals ad eable more people approachig the ed of their life to live ad die i the place of their choice. Delivery of high quality services i all locatios i the commuity, care homes, hospices, hospitals ad ambulace services. Last days of life ad care after death. The Liverpool Care Pathway or equivalet approach will be used to empower geeralist cliicias to care for the dyig ad maage pai ad other symptoms i the last days ad hours of life, ad to coordiate care after death. Ivolvig ad supportig carers i the provisio of care. Carers may eed practical ad emotioal support both durig the perso s life ad i bereavemet. Carers have the right to have their ow eeds assessed ad reviewed. Educatio ad traiig ad cotiuig professioal developmet to embed ed of life care i traiig curricula, iductio ad cotiuig professioal developmet for all registered ad uregistered health ad social care staff whether workig full time o such care or ot. Measuremet ad research of structure, process ad outcomes of care to moitor care give ad to develop further ed of life care services. The Departmet also wishes to ehace research ito ed of life care especially for those with coditios other tha cacer. Fudig. It is difficult to calculate the cost of ed of life care across health ad social care because of difficulties i defiig the boudaries of such care ad of idetifyig the cost to carers. The Departmet has provided extra fudig of 286 millio for ad but believes that may improvemets ca be made by better use of existig resources, for example by reductios i hospital admissios ad legth of stay. The Departmet also set out for patiets ad carers what the Strategy should mea for them. Source: Departmet of Health: Ed of Life Care Strategy 12 Ed of Life Care

17 part oe 2 The ed of life care pathway Step 1 Step 2 Step 3 Step 4 Step 5 Step 6 Discussios as ed of life approaches Assessmet, care plaig ad review Coordiatio of care Delivery of high quality services Care i the last days of life Care after death Ope, hoest commuicatio Idetifyig triggers for discussio Agreed care pla ad regular review of eeds ad prefereces Assessig eeds of carers Strategic coordiatio Coordiatio of idividual patiet care Rapid respose services High quality care provisio i all settigs Hospital, commuity, care homes, hospices, commuity hospitals, priso, secure hospitals ad hostels Ambulace services Idetificatio of the dyig phase Review of eeds ad prefereces for place of death Support for both patiet ad carer Recogitio of wishes regardig resuscitatio ad orga doatio Recogitio that ed of life care does ot stop at the poit of death Timely verificatio ad certificatio of death or referral to coroer Care ad support of carer ad family, icludig emotioal ad practical bereavemet support Support for carers ad families Iformatio Spiritual care services Source: Departmet of Health: Ed of Life Care Strategy Ed of Life Care 13

18 PART TWO The extet ad quality of ed of life care services i Eglad 2.1 This part of the Report evaluates the quality of ed of life care ad whether resources are used i the best way to beefit patiets. It draws o the fidigs from a cesus of PCTs; a survey of care homes; cesuses of NHS ad idepedet hospices; surveys of doctors ad urses; focus groups of patiets ad carers; ad existig research ad data. Place of care Place of death varies by age ad coditio 2.2 There are sigificat differeces i the place of death betwee age groups. Hospice death rates are highest for people aged 45 to 64 ad care home death rates highest for those over 85. There are also importat differeces i place of death accordig to cause of death. For example, cacer patiets are more likely to die i hospices, whilst patiets dyig from respiratory disease are more likely tha average to die i hospital. 2.3 Most people express a preferece to die at home (56 per cet to 74 per cet) 13,14 or i a hospice ad to avoid dyig i hospital (Figure 3). The proportio of patiets with cacer expressig a preferece for home care has bee show to decrease as death approaches (90 per cet to 50 per cet) ad be replaced by a preferece for hospice care (10 per cet to 40 per cet). 15 This may be because people do ot wat to die aloe or be a burde to their family, or because they wat access to more extesive support as death becomes more immiet. 3 Percetage A compariso betwee people s prefereces ad actual place of death Home/ Care home Hospice Hospital Other Do t kow Care settig Source: "Views About Dyig at Home", survey commissioed by Marie Curie i 2004 of 2,453 people i Great Britai, carried about by You Gov ad 2006 Office for Natioal Statistics Mortality Statistics for Eglad NOTE Care preferece Actual place of death As care home was ot a optio i the 2004 You Gov survey, but is recorded as a place of death i the 2006 Mortality Statistics, these categories have bee merged for the purposes of this compariso. 13 Higgiso, I (2003) Priorities ad prefereces for ed of life care. 14 Norfolk Health Overview ad Scrutiy Committee (2005) How We Maage Death ad Dyig i Norfolk Couty ad Waveey. 15 Hito J: Ca home care maitai a acceptable quality of life for patiets with termial cacer ad their relatives? Palliative Medicie 1994;8: END OF LIFE CARE

19 part two 2.4 I 2006, 58 per cet of all deaths i Eglad occurred i a hospital, ragig from 46 per cet to 77 per cet across PCTs. May people are admitted to hospital for emergecy treatmet or symptom maagemet ad, for some people, hospitals remai their preferred place of care. Our aalysis of mortality statistics i PCTs shows that the icidece of home deaths is ot strogly related to the level of deprivatio, a factor which is commoly thought to ihibit choosig to die at home. Type of illess does, however, ifluece the settig where people are likely to die. For example, 94 per cet of all hospice deaths are patiets with cacer ad over half of deaths from demetia occur i care homes (Figure 4). 2.5 Variatio i place of death ca partly be explaied by the way differet diseases progress (Figure 5). For cacer, the disease trajectory is relatively predictable, with patiets tedig to experiece a period of relatively rapid declie at the ed of life, whilst demetia has a more gradual deterioratio. For other coditios, the trajectory is less predictable. For example, people with chroic obstructive pulmoary disease experiece sudde dips i their health leadig to emergecy admissios, followed by a period of relative stability, whilst motor euroe disease (MND) ca progress rapidly from diagosis to death (Appedix 6, Example 1). I the less predictable cases it is more difficult to idetify whe death is likely to occur ad whe ed of life care should begi, leadig to a icreased icidece of deaths i hospital. 4 Percetage 80 Place of death varies by coditio 5 Fuctio High Low High Low High Low Chroic, progressive, ad evetually fatal illesses typically follow three trajectories Mostly cacer Time Short period of evidet declie Mostly heart ad lug failure Time Log-term limitatios with itermittet serious episodes Mostly frailty ad demetia Time Prologed dwidlig Death Source: Ly ad Adamso (2003) Livig Well at the Ed of Life: Adaptig Health Care to Serious Chroic Illess i Old Age Cacer Demetia Pulmoary Disease Heart Failure Coditio Hospital Hospice Care Home Home Source: Natioal Audit Office aalysis of 2006 Mortality Statistics for Eglad Ed of Life Care 15

20 part two Meetig the eeds of patiets ad carers 2.6 Whilst there is o sigle defiitio of good ed of life care, the Departmet has idetified that it should iclude treatig people as idividuals, with digity ad respect; esurig that their pai ad other symptoms are well cotrolled; i familiar surroudigs; ad i the compay of close family ad frieds. I additio to meetig the eeds of the patiet, good quality ed of life care should also take ito accout the eeds of carers A failure to treat patiets as idividuals was a cosistet cocer of the patiets ad carers we cosulted. Commo themes for improvemet are highlighted i Figure 6. Positive experieces were ofte liked to beig treated by specific idividuals who uderstood, appreciated ad empathised with the ed of life process, with GPs ad volutary staff receivig particular praise. 2.8 I its secod Spotlight o Complaits report, published i April 2008, the Healthcare Commissio 17 looked i detail at 50 complaits specifically related to ed of life care. Commo issues icluded poor support for basic comfort, family ad patiet privacy, ad spiritual, cultural ad psychological eeds. I may cases, poor commuicatio limited a patiet s sese of empowermet ad their ability to make a iformed decisio about their care. Ofte the decisio to move from curig to carig was ot clearly commuicated, leadig to eedless ad paiful itervetios that dimiished the patiet s quality of life, ad referrals to specialist palliative care teams were sometimes made too late, or ot at all. 2.9 From April 2009, the ewly established Care Quality Commissio (the Commissio) will have resposibility for regulatig services across health ad social care icludig may of the key providers of ed of life care such as hospitals, hospices, care homes ad commuity based services. I March 2008, the Departmet lauched a public cosultatio o the framework for the registratio of health ad adult social care providers with the Commissio. This cosultatio recogises the eed for all care to be tailored to idividual eeds, to offer appropriate levels of digity ad respect ad to esure all care staff are properly traied. 6 Suggestios for improvemets to ed of life care services made by patiets ad carers Improvemets i equity ad cosistecy of access to services across all disease groups. Access to high quality respite care should be available to all idividuals receivig ed of life care services. More iformatio should be made available regardig accessig direct paymets. Traiig, particularly aroud digity ad respect at ed of life, should be made compulsory for all health ad social care staff, icludig GP receptioists. The removal of all mixed sex wards to improve digity of ad respect for patiets. Easy access to cousellig for both patiets ad carers. There should be oe key cotact for patiets ad carers to access iformatio ad support regardig their specific eeds. Improved iformatio provisio, icludig iformatio packs cotaiig health ad social care iformatio, ad a metorig service for patiets ad carers. There should be adequate permaet ursig staff o hospital wards i order to improve cotiuity of care. Improvemets i the availability of electric wheelchair provisio. Improved access to carer s assessmets. Improvemets i PCT procedures regardig reviewig access to life-prologig drug therapies. Source: Focus groups carried out by Arup o behalf of the Natioal Audit Office 16 Departmet of Health. Ed of Life Care Strategy. July Healthcare Commissio (April 2008) Spotlight o complaits A report o secod-stage complaits about the NHS i Eglad. 16 Ed of Life Care

21 part two Access to specialist palliative care services 2.10 I the Strategy, the Departmet states that all people approachig the ed of their life should be able to access high quality ed of life care irrespective of diagosis. Some patiets, however, face barriers to accessig ed of life care services. Whe asked i our survey, PCTs rated the groups with the most umet eed as patiets with coditios other tha cacer, people with metal health problems or demetia, ad older people (Figure 7). 7 Groups with the most umet eeds i terms of ed of life care People with diagoses other tha cacer People with metal health problems ad/or demetia Older people Black ad miority ethic commuities People from socially deprived groups Those ot registered with a GP Those livig aloe Disease specific groups People with learig difficulties Disabled people Other Percetage of PCTs Group with greatest umet eed Group with secod greatest umet eed Group with third greatest umet eed Source: Natioal Audit Office cesus of primary care trusts NOTE PCTs were asked to rak three local populatio groups which they thought had the most umet eeds i terms of ed of life care. Some of these categories may overlap, for example, people with demetia ad older people. Ed of Life Care 17

22 part two 2.11 Cacer patiets accout for 27 per cet of deaths, yet make up the majority of patiets receivig specialist palliative care services. Our survey of PCTs foud that active case maagemet occurs more frequetly i all settigs for cacer patiets. Our work also foud that may services were aimed solely at patiets with cacer ad that the level of iformatio provided to these patiets is ot replicated for other coditios. Of those patiets accessig specialist palliative care services, the proportio who have coditios other tha cacer is icreasig but remais low (Figure 8) Although patiets we cosulted were positive about their experieces of usig hospice services, some cited their ow perceptios of what hospices offer ad whom they serve as a reaso for ot iitially takig up these services. Some were reluctat to use hospice services because they cosidered hospices to be istitutios predomiatly focused o providig ipatiet care to those very close to death. I other cases, a commo theme was the issue of pride ad the belief that others were more deservig of services I our survey of idepedet hospices, four per cet of patiets who died i were from ethic miority commuities, suggestig that these commuities may be uderrepreseted as a proportio of those accessig hospice services. Research idicates that this lower proportio may be because of the lower prevalece of cacer amog ethic miorities, which is the primary diagosis of the majority of hospice patiets, ad cultural differeces such as attitudes towards death ad the resposibility of family members. 18 A rage of commuity outreach activities are adopted by some hospices to lear more about the eeds of their local populatios ad to raise awareess of their services Whilst a third of all deaths were people aged over 85, oly 14 per cet of this group had accessed a hospice service i This situatio may be explaied by the lower prevalece of cacer i this age group, with cacer recorded as the primary cause of death i oly 18 per cet of cases The percetage of patiets accessig specialist palliative care services who have coditios other tha cacer has rise, but remais low Percetage Specialist palliative care uit/hospice Home/commuity care Day care cetre Hospital support team Source: Natioal Coucil for Palliative Care 18 Smaje ad Field. Abset miorities? Ethicity ad the use of palliative care services Office for Natioal Statistics 2006 Mortality Statistics. 18 Ed of Life Care

23 part two 2.15 I our July 2007 report, Improvig Services ad Support for People with Demetia, we foud that over 60 per cet of all care home residets are estimated to have demetia 20 ad that people with demetia ofte face difficulties accessig ed of life care services. The steady declie i metal ad physical fuctio which is a symptom of demetia (Figure 5) meas that patiet wishes for ed of life care eed to be sought early eough to eable the perso to participate fully, which i tur requires the diagosis to be made early eough i the disease progressio. Such wishes ca be set out i advace through the Metal Capacity Act, which came ito force i October The Act eables people to pla what they would like to happe should they be uable to make decisios about their care i the future, but i may cases of demetia diagosis is ot made early eough Fifty five per cet of people with demetia die i their care home, five per cet i their ow home, ad the rest die i hospital. Our July 2007 report foud that although care for people with ed stage demetia is begiig to be better uderstood, there is a lack of skill ad uderstadig o the part of care home ad commuity staff. Challeges i the delivery of ed of life care to people with demetia iclude deterioratig mobility, forgetfuless ad iability to commuicate about pai. Whilst the ed stage ca be difficult to defie, Natioal Istitute for Health ad Cliical Excellece ad Social Care Istitute for Excellece 21 guidelies state that demetia care should icorporate a palliative care approach from time of diagosis to death. A accout of how specialist palliative care ca play a role i carig for people with advaced demetia i care homes ca be foud i Appedix 6, Example 2. Ed of life care provided by iformal carers 2.17 The 2001 cesus foud that 5.2 millio people i Eglad ad Wales provide some form of upaid care to a family member or fried, icludig ed of life care. Of these, over a millio provide more tha 50 hours of care per week. I 2007, Carers UK estimated that to replace all the care provided iformally by carers i Eglad with a professioal service would cost 71 billio per year, although this amout would cover all aspects of care ot just ed of life care. Research by the Motor Neuroe Disease Society estimates that i the last year of life each patiet with motor euroe disease receives iformal care which would cost 101,000 to provide professioally Carers are ofte overwhelmed by the umber of services they eed to cotact to get support. A lack of itegrated services or a sigle poit of cotact to coordiate care ca lead to frustratio, ad there was cosesus amog those we cosulted that cotiuity of care was a key factor i positive experieces. A example of a PCT which provides a sigle poit of cotact for carers is give i Appedix 6, Example Providig iformal care ca have a adverse impact o carers metal ad physical health. 23 With the correct support, however, a carer s role ca be a rewardig experiece, kowig that they have played a vital role i eablig the perso to be cared for i a place of their choice amogst family ad frieds. Not seeig themselves as carers but as fulfillig family duties, ca, however, be a barrier to carers accessig available services All carers are etitled to a assessmet by a social worker, to discuss the help they eed to care, to maitai their ow health, ad to balace carig with other commitmets. Social services may set eligibility thresholds o the services they provide accordig to the availability of resources. Amogst PCTs respodig to our cesus, 19 per cet stated that carer s assessmets were ot provided, 29 per cet stated that they were provided as stadard, ad 52 per cet stated that assessmets were provided for some carers but ot all. The average proportio of carers receivig a assessmet across all PCTs was 16 per cet, but 104 PCTs could ot provide this iformatio. Twety four per cet of PCTs provide respite care to all those approachig the ed of their life who eed it, whilst 69 per cet provide it subject to eligibility criteria. The remaiig seve per cet do ot provide ay respite care. 20 Improvig services ad support for people with demetia: Report by the Comptroller ad Auditor Geeral HC 604 Sessio / 4 July Natioal Istitute for Health ad Cliical Excellece ad Social Care Istitute for Excellece (2006). Demetia: Supportig people with demetia ad their carers. 22 Carers UK ad Uiversity of Leeds (2007) Valuig Carers calculatig the value of upaid care. 23 Barrows ad Harriso, RA (2005) Usug heroes who put their lives at risk? Iformal carig, health ad eighbourhood attachmet. Joural of Public Health, 27(3): Ed of Life Care 19