Palliative And End Of Life Care - Marie Curie

Palliative and end of life care for Black, Asian and Minority Ethnic (BAME) groups in the UKExecutive summaryBackground to this reportThere is growing evidence that ethnic and culturaldifferences can influence patterns of advanceddisease, illness experiences, healthcare seekingbehaviour, and the use of healthcare services.The End of Life Care Strategy highlights thatalthough much has been done, inequalities stillexist in the care that different groups of peoplereceive at the end of life. In light of increasingnational and international evidence of low useof end of life care services amongst Black, Asianand Minority Ethnic (BAME) groups it is critical tounderstand the influence of ethnicity and culturein the context of end of life care and to examinestrategies and recommendations to addressinequalities. This report therefore provides anevidence-base to understand the profile of BAMEpopulations living in the UK, and identifies theirunmet needs regarding palliative and end of lifecare. Firstly, we describe the characteristics ofBAME groups in the UK (ethnic groups by ageand geographical region, religion, language andcharacteristics of the foreign born population). Weexamine to what extent the BAME populationsare expected to increase and grow older in thenext few decades according to the most recentpopulation projections. Secondly, we appraise thestate of palliative and end of life care provision forBAME groups and present recommendations forpolicy, practice and research available from theliterature. Lastly, based on these two sources ofinformation we present further recommendationswith the aim to improve care for BAMEpopulations in the UK.What can the Census tell usabout BAME groups in the UK?EthnicityAccording to the 1991, 2001 and 2011 UKCensuses, the UK has become more ethnicallydiverse in the past 20 years. This was especiallytrue in England where both the numbers andproportions of people from BAME groups (allethnic groups other than White British) haveincreased; in 2011 they represented a fifth of thepopulation (10.7 million people). Wales, NorthernIreland and Scotland also experienced changesto the ethnic composition of their populations(especially due to a wave of migration since 2000).In England, Other White (4.6%), Indian (2.6%) andPakistani (2.1%) were the largest BAME groups in2011. However, Census data identify that ethnicgroups are not equally distributed across England.For example, while in London less than half of thepopulation was White British, in the North Eastthey represented over 90% of the population.AgeThe relationship between those from BAME groupsand age is important; data for England showthat in mid-2009 nine out of ten people over theage of 65 were White British (over 7.7 millionpeople), but there have been substantial increasesin the number of older people from BAMEgroups when comparing mid-2001 to mid-2009(reaching over 700,000 people in 2009, with widevariation across groups). About a third of the Irishpopulation was aged 65 in mid-2009 (the highestproportion across all BAME groups), followed bythe White British (18.0%) and the Black Caribbean(13.8%). In Wales there were around 18,500 peoplefrom BAME groups aged 65 in 2009 (comparedto over half a million White British residents in thisage group). In Scotland and Northern Ireland, dataon the foreign born residents show that they areusually younger than the UK born population.ReligionThe numbers and proportions of people whodescribed themselves as Christian in Englanddecreased from 2001 to 2011 (from 71.7% orover 35 million to 59.4% or over 31 million), whilenumbers and proportions of those having noreligion almost doubled (reaching over 13 millionpeople in 2011). Numbers and proportions ofpeople from religions other than Christian havealso increased, with Muslims being the secondlargest religious group in 2011. Certain religiousgroups tend to concentrate in particular areas,such as Muslims in London, Bradford, Luton,Slough and Birmingham; Hindus in London and7

Palliative and end of life care for Black, Asian and Minority Ethnic (BAME) groups in the UKLeicester; Buddhists and Jewish people in London.In Wales it was noted a decrease in numbersfor Jewish and Christian religions from 2001 to2011, while there was an increase for all otherreligions and for those reporting to have noreligion. In Northern Ireland there was an increasein numbers for religions other than Christian, butalso for Catholic, Other Christian religions and asubstantial increase for those either reporting tohave no religion or not stating their religion.LanguageWhen it comes to language, in England over 90%of people had English as their first language in2011, but one out of five people who did nothave it as a principal language either could notspeak it well or could not speak it at all (over800,000 people). This could indicate a demandfor translation services when in receipt of care. InWales 97.1% had English as the first language in2011 and 19,305 residents could not speak Englishwell or could not speak it at all. Similar to Wales, inNorthern Ireland 96.9% of residents had English astheir principal language, while 14,469 people couldnot speak it well or at all.Are the numbers of people fromBAME groups expected to increaseover time? Will people from BAMEgroups grow older?Population projections suggest that both thenumbers and proportions of people from BAMEgroups will increase in the UK, and they willrepresent a larger proportion of older people. InEngland and Wales it is estimated that by 2026there will be over 1.3 million people from BAMEgroups aged 65 (compared to over half a millionin 2001); in 2026 almost half a million people fromBAME groups will be aged 70 . Amongst BAMEgroups, the White Irish are expected to have thehighest proportion of people aged 65 (35.9%of its population is expected to be in this agegroup), followed by the Black Caribbean (13.4%),White Other (10.7%), Indian (10.6%) and OtherAsian (9.6%).8What do we know about the carebeing provided to BAME groups inthe UK at the end of life?We identified 45 literature reviews describingunmet needs and disparities in palliative andend of life care for BAME groups. These reviewsprincipally focused on two issues: access to,and receipt of care. Authors also recognised theimportance of understanding social inequities(such as deprivation, differences in access to carein general, social exclusion and racism) whenanalysing unmet needs and disparities. They alsoidentified several difficulties in relation to codingand monitoring ethnicity. Additionally, they warnedagainst assumptions and the use of stereotypeswhen providing care for BAME populations (forexample, assuming that everyone from the samegroup behaves the same way or not being awareof their own values).Access to palliative and end of life careIn terms of access to care, several authorsreported that BAME groups had lower accessto palliative and end of life care services whencompared to White British people. This wasassociated with lack of referrals, lack of awarenessof relevant services, previous bad experienceswhen accessing care, a lack of information inrelevant languages or formats and family/religiousvalues conflicting with the idea of hospice care.A number of authors stated that BAME groupsare usually younger and consequently experiencedifferent types of cancer compared to the majorityWhite population. However, they also stated thatthese trends are likely to change and so this shouldnot be seen as the only explanation to account forlower rates of service use.Receipt of palliative and end of life careDisparities and unmet needs when receiving carewere also examined, especially issues regardingcommunication, end of life decision making andhealth outcomes (for example, pain). The mostdiscussed issue was poor communication betweenthe healthcare professional and the patient/family.This was associated with lack of sensitivity tocultural/religious differences, lack of availabilityof translators and low availability of training forhealthcare professionals. Evidence on disparitieson end of life decision making was more common

Palliative and end of life care for Black, Asian and Minority Ethnic (BAME) groups in the UKin studies from the United States, with minorityethnic patients less likely to complete advancecare planning documents and more likely to desirelife-sustaining treatment (such as intubationand artificial feeding) than the majority Whitepopulation. The impact of mistrust (due toexperiences of discrimination and poor accessto care) and the possible influence of religion ondecisions were also emphasised. Many statedthat advance care planning is guided by Westernvalues of autonomy and self-determination whichare not applicable to several populations with acollective approach to decision making. Finally,some disparities regarding health outcomeswere reported, such as worse pain outcomesfor minority ethnic groups (mostly in the UnitedStates), differences in place of death (with minorityethnic groups dying at home less often); and lesssatisfaction with the care received.Recommendations on how toimprove care for BAME groupsThe reviews presented several recommendationson how to improve care; these are summarisedin this publication and include addressing socialinequities in healthcare as a whole, involvingBAME groups when developing new policies,providing palliative care for non-cancer patients,and improving ethnic monitoring nationwide.Authors emphasised the importance of culturalcompetency and communication skills trainingfor healthcare professionals. Being sensitiveand developing open, two-way conversationswith patients and families was also encouraged.Authors warned against assumptions about howpatients behave (or should behave). Authorssuggested that strategies to reach BAME groupsshould involve the BAME communities andencouraged the recruitment of people from BAMEgroups. Authors advised researchers to assessif interventions which aim to improve care forBAME groups actually work/make a difference topatients and families and also to evaluate the carecurrently being provided to BAME groups. Authorsrecommended the use of different researchmethods (for example analysing patients over timeinstead of only analysing data records) and theuse of standardised tools/measures. The need tobetter record/report ethnicity and develop morestudies with underrepresented minority groups(such as White minorities) was also highlighted.A few authors also described ‘best practices’ andinitiatives to improve care, but it was not alwaysreported how beneficial these were to patientsand families. These practices were usually basedin locations with a large number of people fromBAME groups instead of being part of a widernational initiative.Where do we go from here?Current evidence shows that, overall, palliativeand end of life care provision for BAME groupsis often inadequate. Demographic data tell usthat the number of people from BAME groupswill increase, and a substantial number of themwill be older people who might need care. Thisraises questions on how care, which is currentlyreported as inadequate, will meet the needs ofeven larger numbers of people, including thoseusually not represented in research, for examplethe White Irish (with one-third of their populationalready over the age of 65) and the Gypsy and IrishTraveller communities. Almost 900,000 people inthe UK either cannot speak English well or cannotspeak it at all. It is likely that there are older peopleamongst them and evidence shows that thereis a lack of (or inadequate) translation services.Examples of best practice are understandablylocalised in areas with more ethnic diversity.However, this raises questions about whetherminority ethnic groups living in less diverse areaswould benefit from good practice shown to beworking elsewhere. About two-thirds of thepopulation in England reported having a religion,and it is likely that a number of them would havespecific requirements at the end of life (whichcurrently are not always met).With all these issues and challenges in mind,we suggest studying the recommendationsdeveloped by authors and summarised in thispublication to then plan care for BAME groups inthe future. We also recommend the developmentof a national initiative to fund studies assessingthe effectiveness of interventions designed toimprove care for BAME groups (or, in other words,assessing how beneficial they are to patients andfamilies) and wide dissemination of results from9

Palliative and end of life care for Black, Asian and Minority Ethnic (BAME) groups in the UKthese studies. It is important that those involvedwith care make the most of the demographicinformation available for free from nationalstatistical bodies (especially data from the 2011Census) to understand better the demographicprofile of their local population. We alsorecommend the systematic, organised examinationof practices which seem to be effective so10these can be disseminated and adapted to otherpopulations. Finally, research needs a strongerfocus on assessing health outcomes for BAMEpatients and family caregivers. This should be donein collaboration with both policy and practice.Researchers should analyse data from the 2011Census further and develop new populationprojections with the most recent data available.

Palliative and end of life care for Black, Asian and Minority Ethnic (BAME) groups in the UK1. IntroductionWe emerge deserving of little credit; wewho are capable of ignoring the conditionsthat make muted people suffer. Thedissatisfied dead cannot noise abroad thenegligence they have experienced1.Nearly forty years ago the medical doctor, JohnHinton, drew attention to the deficiencies thatwere evident in the care offered to many patientswith advanced disease, and their families. Whilewe have witnessed a growing understanding ofthe palliative care needs of patients and theirfamilies and an acceptance that death is universal,which makes it a universal public health concern,the actual provision of care at the end of life isstill not always adequate. In recent years, both inthe United Kingdom and elsewhere, questions arebeing asked about how much palliative care weneed, from whom, where, and at what cost, giventhat accessible and good quality care towards theend of life must be recognised as a basic humanright to all those who can benefit from it2, 3:Everyone has the right to ( ) securityin the event of sickness, disability,widowhood, old age or other lack oflivelihood in circumstances beyond his[or her] control(Article 25, United Nations UniversalDeclaration of Human Rights 2001)Treating people equally and promoting dignityand respect are the key principles containedwithin this declaration. Since its introduction, allnew legislation must comply with its principles.In recent years human rights in health and socialcare services have been given more attention4and extended to many groups in society. A JointCommittee on Human Rights (appointed by theHouses of Lords and Commons to consider mattersrelating to human rights in the UK) has reportedon people with disabilities5, people with learningdisabilities6, on children7, and older people8. Todate, however, this interest in ensuring that humanrights extend to all sectors of society has notgiven enough attention to those at the end oflife, specifically, the growing numbers of oldermembers from Black, Asian and Minority Ethnic(BAME) groups living with and dying from cancerand other life limiting conditions including heartfailure and dementia. This represents a critical timein their lives when there is no second opportunityto redress failings in care to them or their families.The National End of Life Care Strategy recognisesthat high quality care should be provided for allpeople approaching the end of life, ‘irrespectiveof age, gender, ethnicity, religious belief, disability,sexual orientation, diagnosis or socioeconomicstatus’9. It adopts a pathways approach (Figure A1in the Appendix) focusing on addressing the needsof the individual, with an open communication andassessment of needs and preferences. The Strategyacknowledges, however, that although much hasbeen achieved in the past few years, there is stillmuch to be done in order to address inequities inthe care provided at the end of life10.1.1 Differences thatmake a differenceThroughout human history, individuals, families,and groups have emigrated from their nativehomes to other places globally for many reasons:the prospect of education, economic, or socialadvantage; the need to escape war, politicaltorture or other conflicts; or the desire to reunitewith other family members. In 2005 alone, therewere an estimated 191 million immigrants acrossthe globe: approximately 64 million of theseimmigrants arrived in Europe and 44 millionin North America, a tripling of the immigrantpopulations in these regions compared to twentyyears earlier11. This trend is expected to continueto increase12. In Europe, the first decade of the21st century has seen large waves of migrationfrom both within and outside Europe. The numberof European citizens migrating to a MemberState other than their own country of citizenshipincreased on average by 12% per year during theperiod 2002–0813. Spain, Germany and the UnitedKingdom were the European countries with the11

Palliative and end of life care for Black, Asian and Minority Ethnic (BAME) groups in the UKhighest immigration, receiving more than half ofall immigrants in 200813. Diversity is therefore areality, with an increased proportion of people notliving within their own native country or culture14.Ethnicity is a commonly used term when referringto social diversity; it is also a concept surroundedby enormous controversy and confusion (Box 1).Ethnicity is a ‘multi-faceted and changingphenomenon’ that may reflect a combinationof a number of features including country ofbirth, nationality, language spoken at home,ancestral country of birth, skin colour, national orgeographical origin, racial group and religion15.Ethnic minority health is increasingly recognisedas a crucial ‘tracer’ for measuring the success inachieving health and patient preferred outcomesfor the population in general23, and for palliative/end of life care in particular24–26, where there isgrowing evidence that we are not all equal indeath. As cancer and chronic conditions affectmore and more people from different ethnicand cultural backgrounds27 it is important tounderstand how services best serve all people,and whether (and how), outcomes of care mayvary. Robust and relevant intelligence is critical,particularly as growing evidence suggests that asignificant number of people living with advanceddisease miss out on palliative care and end oflife care28, 29. For example, older patients30–33, thepoor26, 34–36, and specifically those from BAMEcommunities37, are less likely than youngerpatients, White patients, and more affluent groupsto use appropriate specialist services includinginpatient hospices. This situation exists in theUK despite palliative care being free at the pointof delivery from the NHS and the independentBox 1 – Conceptual confusion and the language of diversityRace, ethnicity and culture have the potentialto be presented as explosive concepts15. Allthese terms have been used to explain patternsof disease, illness experiences, responses totreatment, and the use of services. However,confusion is still common. Firstly, researchersrarely define the terms they use12. Secondly,over the years, all terms have been usedinterchangeably, have been subject to misuse,or combined with other social metrics, forexample social class or education16. Race can beunderstood as the classification of people on thebasis of their physical appearance – with skincolour the most popular characteristic17. In thepast it has also been used as a way of dividinghumankind which has denoted inferiorityand superiority, linked to subordination anddomination18. Ethnicity, sometimes employedas a softer synonym for race, can be definedas: Shared origins or social backgrounds; sharedculture and traditions that are distinctive,maintained between generations, and lead toa sense of identity and group; and a commonlanguage or religious tradition19.Ethnicity is fluid and depends greatly on context.For practical and theoretical reasons, the current12preference is to permit the self-assessmentof ethnicity19. Amongst other factors, cultureunderpins our ethnic identity. This too is acomplex and problematic social concept withseveral definitions. Culture is a patternedbehavioural response that develops over time asa result of imprints on the mind through social,religious, intellectual and artistic structures20.From this definition culture can be seen as a‘recipe’ for living in the world21. However, this isa limited understanding of culture that, if usedhere, risks minimising discussions of culturalaspects of palliative and end of life care tolists of beliefs and practices from a range ofso-called ‘cultural’ groups. This has also beenreferred to as the ‘fact-file’ or ‘checklist’22approach that, while informative in interpretingbehaviours, symbols, rituals, and other culturalpractices of certain ethnic or religious groupsthat may be important and meaningful atthe end of life, runs the risk of encouraginggeneralisations about individuals and groupsbased on cultural identity. This in turn maythen lead to the development of stereotypes,prejudices, and misunderstandings.

Palliative and end of life care for Black, Asian and Minority Ethnic (BAME) groups in the UKcharitable sector.In this report we aim, firstly, to present keyintelligence on the current demographic profileof BAME populations living in the UK accordingto the most up-to-date estimates from the 2011Census. We also aim to examine and ap

4.4 Key findings on the current state of palliative and end of life care provision 37 4.4.1 Unmet needs and disparities in access to palliative and end of life care 38 4.4.2 Unmet needs and disparities when in receipt of palliative and end of life care 39 4.5 Ways forward: Recommendations for policy, practice and research