In many countries, achieving a home death represents a successful outcome from both a patient welfare and commissioning viewpoint. Significant variation exists in the proportion of home deaths achieved internationally, with many countries unable to meet the wishes of a large number of patients. This review builds on previous literature investigating factors influencing home death, synthesising qualitative research to supplement evidence that quantitative research in this field may have been unable to reach.
Aim:
To identify and understand the barriers and facilitators influencing death at home.
Design:
Meta-ethnography.
Data sources:
The review adhered to the PRISMA guidelines. A systematic literature search was conducted using five databases: PubMed, EMBASE, Ovid, CINAHL and PsycINFO. Databases were searched from 2006 to 2016. Empirical, UK-based qualitative studies were included for analysis.
Results:
A total of 38 articles were included for analysis. Seven overarching barriers were identified: lack of knowledge, skills and support among informal carers and healthcare professionals; informal carer and family burden; recognising death; inadequacy of processes such as advance care planning and discharge; as well as inherent patient difficulties, either due to the condition or social circumstances. Four overarching facilitators were observed: support for patients and healthcare professionals, skilled staff, coordination and effective communication.
Conclusion:
Future policies and clinical practice should develop measures to empower informal carers as well as emphasise earlier commencement of advance care planning. Best practice discharge should be recommended in addition to addressing remaining inequity to enable non-cancer patients greater access to palliative care services.
HoareSMorrisZSKellyMPet al. Do patients want to die at home? A systematic review of the UK literature, focused on missing preferences for place of death. PLoS ONE2015; 10(11): e0142723.
2.
GomesBCalanzaniNGyselsMet al. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care2013; 12: 7.
3.
De RooMLMiccinesiGOnwuteaka-PhilipsenBDet al. Actual and preferred place of death of home-dwelling patients in four European countries: making sense of quality indicators. PLoS ONE2014; 9(4): e93762.
4.
BillinghamMJBillinghamSJ.Congruence between preferred and actual place of death according to the presence of malignant or non-malignant disease: a systematic review and meta-analysis. BMJ Supportive Palliat Care2013; 3(2): 144–154.
5.
BurgeFLawsonBJohnstonGet al. Preferred and actual location of death: what factors enable a preferred home death?J Palliat Med2015; 18(12): 1054–1059.
6.
FischerSMinSJCervantesLet al. Where do you want to spend your last days of life? Low concordance between preferred and actual site of death among hospitalized adults. J Hosp Med2013; 8(4): 178–183.
7.
CohenJHouttekierDOnwuteaka-PhilipsenBet al. Which patients with cancer die at home? A study of six European countries using death certificate data. J Clin Oncol2010; 28(13): 2267–2273.
8.
Palliative Gao. Life CatEo. Geneva: WHO, 2014.
9.
MaysNPopeC.Rigour and qualitative research. BMJ1995; 311(6997): 109–112.
10.
PayneSATurnerJM.Research methodologies in palliative care: a bibliometric analysis. Palliat Med2008; 22(4): 336–342.
11.
FroggattKAFieldDBaileyCet al. Qualitative research in palliative care 1990–1999: a descriptive review. Int J Palliat Nurs2003; 9(3): 98–104.
12.
ClarkD.From margins to centre: a review of the history of palliative care in cancer. Lancet Oncol2007; 8(5): 430–438.
13.
LutzS.The history of hospice and palliative care. Curr Probl Cancer2011; 35(6): 304–309.
14.
The National Council for Palliative Care. End of life care strategy. London: Department of Health, 2006.
15.
Care Quality Commission. A different ending: addressing inequalities in end of life care. Newcastle upon Tyne: Care Quality Commission, 2016.
16.
The Choice in End of Life Care Programme Board. What’s important to me: a review of choice in end of life care. London: The National Council for Palliative Care, 2015.
17.
Department of Health (ed.). End of life care strategy. London: Department of Health, 2008.
McCallKRiceAM.What influences decisions around the place of care for terminally ill cancer patients?Int J Palliat Nurs2005; 11(10): 541–547.
20.
AliMCapelMJonesGet al. The importance of identifying preferred place of death. BMJ Support Palliat Care. Epub ahead of print 25 September 2015. DOI: 10.1136/bmjspcare-2015-000878.
21.
BeccaroMCostantiniMRossiPGet al. Actual and preferred place of death of cancer patients: results from the Italian Survey of the Dying of Cancer (ISDOC). J Epidemiol Community Health2006; 60(5): 412–416.
22.
PivodicLPardonKMorinLet al. Place of death in the population dying from diseases indicative of palliative care need: a cross-national population-level study in 14 countries. J Epidemiol Community Health2016; 70(1): 17–24.
23.
GomesBHigginsonIJ.Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ2006; 332(7540): 515–521.
24.
GomesBHigginsonIJ.Where people die (1974–2030): past trends, future projections and implications for care. Palliat Med2008; 22(1): 33–41.
25.
GomesBCalanzaniNHigginsonIJ.Reversal of the British trends in place of death: time series analysis 2004–2010. Palliat Med2012; 26(2): 102–107.
26.
PopeCMaysN.Qualitative research in health care. Hoboken, NJ: John Wiley & Sons, 2013.
27.
BrittenNCampbellRPopeCet al. Using meta ethnography to synthesise qualitative research: a worked example. J Health Serv Res Policy2002; 7(4): 209–215.
28.
HeyvaertMMaesBOnghenaP.Mixed methods research synthesis: definition, framework, and potential. Qual Quant2013; 47(2): 659–676.
29.
NoblitGWHareRD.Meta-ethnography: issues in the synthesis and replication of qualitative research. Health Technol Assess1983; 15: 1–164.
30.
CampbellRPoundPMorganMet al. Evaluating meta-ethnography: systematic analysis and synthesis of qualitative research. Health Technol Assess2011; 15(43): 1–164.
31.
CampbellRPoundPPopeCet al. Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care. Soc Sci Med2003; 56: 671–684.
32.
MoherDLiberatiATetzlaffJet al. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med2009; 6(7): e1000097.
33.
SealKMurrayDSeddonL.Family stories of end-of-life cancer care when unable to fulfill a loved one’s wish to die at home. Palliat Support Care2015; 13(3): 473–484.
34.
KnightingKO’BrienMRRoeBet al. Development of the Carers’ Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study. BMC Palliat Care2015; 14: 22.
35.
SeymourJPayneSChapmanAet al. Expectations of end-of-life care among white and Chinese older people in the UK. Sociol Health Illn2007; 29(6): 872–890.
36.
HassonFKernohanWGMcLaughlinMet al. An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease. Palliat Med2010; 24(7): 731–736.
37.
JohnstonBMMilliganSFosterCet al. Self-care and end of life care – patients’ and carers’ experience a qualitative study utilising serial triangulated interviews. Support Care Cancer2012; 20(8): 1619–1627.
38.
McLaughlinDSullivanKHassonF.Hospice at home service: the carer’s perspective. Support Care Cancer2007; 15(2): 163–170.
39.
PayneSBurtonCAddington-HallJet al. End-of-life issues in acute stroke care: a qualitative study of the experiences and preferences of patients and families. Palliat Med2010; 24(2): 146–153.
40.
JackBO’BrienM.Dying at home: community nurses’ views on the impact of informal carers on cancer patients’ place of death. Eur J Cancer Care2010; 19(5): 636–642.
41.
LowtonK.‘A bed in the middle of nowhere’: parents’ meanings of place of death for adults with cystic fibrosis. Soc Sci Med2009; 69(7): 1056–1062.
42.
PercivalJLasseterGPurdySet al. A qualitative study of the domiciliary care worker role in meeting the needs of families caring for those dying at home. Palliat Support Care2014; 12(6): 445–454.
43.
LucasBSmallNGreasleyPet al. A reassuring presence: an evaluation of Bradford District Hospice at Home service. BMC Palliat Care2008; 7: 9.
44.
O’BrienMJackB.Barriers to dying at home: the impact of poor co-ordination of community service provision for patients with cancer. Health Soc Care Community2010; 18(4): 337–345.
45.
SmallNBarnesSGottMet al. Dying, death and bereavement: a qualitative study of the views of carers of people with heart failure in the UK. BMC Palliat Care2009; 8: 6.
46.
GottMIngletonCBennettMIet al. Transitions to palliative care in acute hospitals in England: qualitative study. BMJ2011; 342: d1773.
47.
MomenNHadfieldPHarrisonKet al. Managing pain in advanced cancer: a survey of United Kingdom general practitioners and community nurses. J Pain Symptom Manage2013; 46(3): 345–354.
48.
VenkatasaluMRSeymourJEArthurA.Dying at home: a qualitative study of the perspectives of older South Asians living in the United Kingdom. Palliat Med2014; 28(3): 264–272.
49.
SeamarkDBlakeSBrearleySGet al. Dying at home: a qualitative study of family carers’ views of support provided by GPs community staff. Br J Gen Pract2014; 64(629): e796–e803.
50.
ExleyCAllenD.A critical examination of home care: end of life care as an illustrative case. Soc Sci Med2007; 65(11): 2317–2327.
51.
TotmanJPistrangNSmithSet al. ‘You only have one chance to get it right’: a qualitative study of relatives’ experiences of caring at home for a family member with terminal cancer. Palliat Med2015; 29(6): 496–507.
52.
IngletonCPayneSSargeantAet al. Barriers to achieving care at home at the end of life: transferring patients between care settings using patient transport services. Palliat Med2009; 23(8): 723–730.
53.
WilsonESeymourJAubeeluckA.Perspectives of staff providing care at the end of life for people with progressive long-term neurological conditions. Palliat Support Care2011; 9(4): 377–385.
54.
PayneSBrearleySMilliganCet al. The perspectives of bereaved family carers on dying at home: the study protocol of ‘unpacking the home: family carers’ reflections on dying at home. BMC Palliat Care2012; 11(1): 1–5.
55.
NobleBKingNWoolmoreAet al. Can comprehensive specialised end-of-life care be provided at home? Lessons from a study of an innovative consultant-led community service in the UK. Eur J Cancer Care2015; 24(2): 253–266.
56.
IngoldKHicksF.Using a public health approach to improve end-of-life care: results and discussion of a health needs assessment undertaken in a large city in northern England. BMJ Support Palliat Care2014; 5(2): 200–202.
57.
LeesCMaylandCWestAet al. Quality of end-of-life care for those who die at home: views and experiences of bereaved relatives and carers. Int J Palliat Nurs2014; 20(2): 63–67.
58.
Thompson-HillJHookeyCSaltEet al. The supportive care plan: a tool to improve communication in end-of-life care. Int J Palliat Nurs2009; 15(5): 250–255.
59.
WyeLLasseterGPercivalJet al. What works in ‘real life’ to facilitate home deaths and fewer hospital admissions for those at end of life? Results from a realist evaluation of new palliative care services in two English counties. BMC Palliat Care2014; 13: 37.
60.
MundayDPetrovaMDaleJ.Exploring preferences for place of death with terminally ill patients: qualitative study of experiences of general practitioners and community nurses in England. BMJ2009; 339: b2391.
61.
AlmackKCoxKMoghaddamNet al. After you: conversations between patients and healthcare professionals in planning for end of life care. BMC Palliat Care2012; 11: 15.
62.
NobleHKellyDHudsonP.Experiences of carers supporting dying renal patients managed without dialysis. J Adv Nurs2013; 69(8): 1829–1839.
63.
NewburyJ.Family carers’ experiences of paid domiciliary care at the end of life. End Life Care2009; 3(4): 37–44.
64.
CoxKMoghaddamNAlmackKet al. Is it recorded in the notes? Documentation of end-of-life care and preferred place to die discussions in the final weeks of life. BMC Palliat Care2011; 10(1): 1–9.
65.
IngletonCChatwinJSeymourJet al. The role of health care assistants in supporting district nurses and family carers to deliver palliative care at home: findings from an evaluation project. J Clin Nurs2011; 20(13–14): 2043–2052.
66.
LovattMNantonVRobertsJet al. The provision of emotional labour by health care assistants caring for dying cancer patients in the community: a qualitative study into the experiences of health care assistants and bereaved family carers. Int J Nurs Stud2015; 52(1): 271–279.
67.
PlummerSHearnshawC.Reviewing a new model for delivering short-term specialist palliative care at home. Int J Palliat Nurs2006; 12(4): 183–188.
68.
JackABaldryRGrovesEet al. Supporting home care for the dying: an evaluation of healthcare professionals’ perspectives of an individually tailored hospice at home service. J Clin Nurs2013; 22(19): 2778–2786.
69.
CowanMM.The lived experiences of the Sikh population of South East England when caring for a dying relative at home. Int J Palliat Nurs2014; 20(4): 179–186.
70.
LawrenceVSamsiKMurrayJet al. Dying well with dementia: qualitative examination of end-of-life care. Br J Psychiatry2011; 199(5): 417–422.
71.
TraueDCRossJR.Palliative care in non-malignant diseases. J R Soc Med2005; 98(11): 503–506.
72.
FallonMFoleyP.Rising to the challenge of palliative care for non-malignant disease. Palliat Med2012; 26(2): 99–100.
73.
RodgerDNeillMONugentL.Informal carers’ experiences of caring for older adults at home: a phenomenological study. Br J Community Nurs2015; 20(6): 280–285.
74.
MorrisSMKingCTurnerMet al. Family carers providing support to a person dying in the home setting: a narrative literature review. Palliat Med2015; 29(6): 487–495.
BeePEBarnesPLukerKA.A systematic review of informal caregivers’ needs in providing home-based end-of-life care to people with cancer. J Clin Nurs2009; 18(10): 1379–1393.
77.
AndershedB.Relatives in end-of-life care – part 1: a systematic review of the literature the five last years, January 1999-February 2004. J Clin Nurs2006; 15(9): 1158–1169.
78.
AndersonBAKralikD.Palliative care at home: carers and medication management. Palliat Support Care2008; 6(4): 349–356.
79.
LinderholmMFriedrichsenM.A desire to be seen: family caregivers’ experiences of their caring role in palliative home care. Cancer Nurs2010; 33(1): 28–36.
80.
AppelinGBrobackGBerteroC.A comprehensive picture of palliative care at home from the people involved. Eur J Oncol Nurs2005; 9(4): 315–324.
81.
ProotIMAbu-SaadHHCrebolderHFet al. Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity. Scand J Caring Sci2003; 17(2): 113–121.
82.
McCannTVBambergJMcCannF.Family carers’ experience of caring for an older parent with severe and persistent mental illness. Int J Ment Health Nurs2015; 24(3): 203–212.
83.
TanYYBlackfordJ.‘Rapid discharge’: issues for hospital-based nurses in discharging cancer patients home to die. J Clin Nurs2015; 24(17–18): 2601–2610.
84.
NosbuschJMWeissMEBobayKL.An integrated review of the literature on challenges confronting the acute care staff nurse in discharge planning. J Clin Nurs2011; 20(5–6): 754–774.
85.
MobackBGerrardRMintonOet al. Evaluating a fast-track discharge service for patients wishing to die at home. Int J Palliat Nurs2011; 17(10): 501–506.
86.
BischoffKESudoreRMiaoYet al. Advance care planning and the quality of end-of-life care among older adults. J Am Geriatr Soc2013; 61(2).
87.
Brinkman-StoppelenburgARietjensJAvan der HeideA.The effects of advance care planning on end-of-life care: a systematic review. Palliat Med2014; 28(8): 1000–1025.
88.
AbelJPringARichAet al. The impact of advance care planning of place of death, a hospice retrospective cohort study. BMJ Support Palliat Care2013; 3(2): 168–173.
89.
SteinGLFinebergIC.Advance care planning in the USA and UK: a comparative analysis of policy, implementation and the social work role. Brit J Soc Work2013; 43(2): 233–248.
90.
AhmedNBestallJCAhmedzaiSHet al. Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. Palliat Med2004; 18(6): 525–542.
91.
StielSHeckelMSeifertAet al. Comparison of terminally ill cancer- vs. non-cancer patients in specialized palliative home care in Germany: a single service analysis. BMC Palliat Care2015; 14: 34.
92.
LuddingtonLCoxSHigginsonIet al. The need for palliative care for patients with non-cancer diseases: a review of the evidence. Int J Palliat Nurs2001; 7(5): 221–226.
93.
HigginsonIJBauseweinCReillyCCet al. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. Lancet Respir Med2014; 2(12): 979–987.
94.
AtkinsSLewinSSmithHet al. Conducting a meta-ethnography of qualitative literature: lessons learnt. BMC Med Res Methodol2008; 8(1): 1–10.
