Healthcare providers working in hospitals are frequently exposed to patients with palliative care needs. For most patients, these reflect non-specialist rather than specialist palliative care needs. Embedding palliative care principles early in patients’ disease trajectories within acute care delivery in hospitals, however, is a challenge. How to best understand the experiences of those providing non-specialist palliative care in hospitals has not been systematically assessed.
Aim:
To synthesise the evidence on healthcare providers’ views and experiences of non-specialist palliative care in hospitals.
Design:
A qualitative systematic review and thematic synthesis using Thomas and Harden’s thematic synthesis framework.
Data sources:
Databases of MEDLINE, CINAHL, PsycINFO and EMBASE were searched from date of inception to March 2018. Studies were eligible for inclusion if they reported on healthcare providers’ views and experiences of non-specialist palliative care in hospitals. Studies were appraised for quality but not excluded on that basis. The review was prospectively registered with the International Prospective Register of Systematic Reviews.
Results:
Thirty-nine papers of 37 studies were included, representing 985 hospital healthcare providers’ views and experiences. Four major analytical themes emerged; ‘Understanding of Palliative Care’, ‘Complexities of Communication’, ‘Hospital Ecosystem’ and ‘Doctors and Nurses – a Different Lens’.
Conclusions:
Non-specialist palliative care in hospitals is operationalised as care in the last weeks and days of life. The organisation of acute care, inter-disciplinary working practices, clinician attitudes, poor communication structures and lack of education and training in palliative care principles exacerbates poor implementation of this care earlier for patients in hospitals.
ClarkDArmstrongMAllanA, et al. Imminence of death among hospital inpatients: prevalent cohort study. Palliat Med2014; 28(6): 474–479.
9.
Health Service Executive. National service plan. Dublin: Health Service Executive, 2018.
10.
CohenJBilsenJAddington-HallJ, et al. Population-based study of dying in hospital in six European countries. Palliat Med2008; 22(6): 702–710.
11.
BroadJBGottMKimH, et al. Where do people die? An international comparison of the percentage of deaths occurring in hospital and residential aged care settings in 45 populations, using published and available statistics. Int J Public Health2013; 58(2): 257–267.
12.
Health Service Executive and The Irish Hospice Foundation. Palliative care for all: integrating palliative care into disease management frameworks: key messages. Dublin: Health Service Executive (HSE), Irish Hospice Foundation, 2009.
13.
GardinerCGottMIngletonC, et al. Extent of palliative care need in the acute hospital setting: a survey of two acute hospitals in the UK. Palliat Med2013; 27(1): 76–83.
14.
HynesGKavanaghFHoganC, et al. Understanding the challenges of palliative care in everyday clinical practice: an example from a COPD action research project. Nurs Inq2015; 22(3): 249–260.
15.
MurraySBoydK.Using the ‘surprise question’ can identify people with advanced heart failure and COPD who would benefit from a palliative care approach. Palliat Med2011; 25(4): 382.
16.
GottMSeymourJIngletonC, et al. ‘That’s part of everybody’s job’: the perspectives of health care staff in England and New Zealand on the meaning and remit of palliative care. Palliat Med2012; 26(3): 232–241.
17.
MoussaviSChatterjiSVerdesE, et al. Depression, chronic diseases, and decrements in health: results from the World Health Surveys. Lancet2007; 370(9590): 851–858.
18.
GardinerCCobbMGottM, et al. Barriers to providing palliative care for older people in acute hospitals. Age Ageing2011; 40(2): 233–238.
19.
MurraySAKendallMBoydK, et al. Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: secondary analysis of serial qualitative interviews. BMJ2010; 340: c2581.
20.
HynesGCoghlanDMcCarronM.Developing practice in healthcare: the contribution of Bildung to negotiating the tensions among practical, professional and organisational knowing. Int J Action Res2012; 8: 159–184.
21.
ChanLSMacdonaldMECarnevaleFA, et al. ‘I’m only dealing with the acute issues’: how medical ward ‘busyness’ constrains care of the dying. Health2018; 22: 451–468.
22.
BergenholtzHJarlbaekLHolge-HazeltonB.The culture of general palliative nursing care in medical departments: an ethnographic study. Int J Palliat Nurs2015; 21(4): 193–201.
23.
KirbyEBroomAGoodP.The role and significance of nurses in managing transitions to palliative care: a qualitative study. BMJ Open2014; 4(9): e006026.
24.
IngramC.A paradigm shift: healing, quality of life, and a professional choice. J Pain Symptom Manage2014; 47(1): 198–201.
25.
FirnJPrestonNWalsheC.What are the views of hospital-based generalist palliative care professionals on what facilitates or hinders collaboration with in-patient specialist palliative care teams? A systematically constructed narrative synthesis. Palliat Med2016; 30(3): 240–256.
26.
GardinerCGottMIngletonC.Factors supporting good partnership working between generalist and specialist palliative care services: a systematic review. Br J Gen Pract2012; 62(598): e353–e362.
27.
ThornHUhrenfeldtL.Experiences of non-specialist nurses caring for patients and their significant others undergoing transitions during palliative end-of-life cancer care: a systematic review. JBI Database System Rev Implement Rep2017; 15(6): 1711–1746.
28.
CooperEHutchinsonASheikhZ, et al. Palliative care in the emergency department: a systematic literature qualitative review and thematic synthesis. Palliat Med2018; 32(9): 1443–1454.
29.
GottMIngletonCBennettMI, et al. Transitions to palliative care in acute hospitals in England: qualitative study. BMJ2011; 342: d1773.
30.
JohanssonKLindahlB.Moving between rooms – moving between life and death: nurses’ experiences of caring for terminally ill patients in hospitals. J Clin Nurs2012; 21(13–14): 2034–2043.
31.
LewisEGOatesLLRogathiJ, et al. ‘We never speak about death’. Healthcare professionals’ views on palliative care for inpatients in Tanzania: a qualitative study. Palliat Support Care2018; 16: 566–579.
32.
OliverTO’ConnorSJ.Perceptions of a ‘good death’ in acute hospitals. Nurs Times2015; 111(21): 24–27.
33.
ThomasJHardenA.Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol2008; 8: 45.
34.
TongAFlemmingKMcInnesE, et al. Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Med Res Methodol2012; 12: 181.
35.
FlemmingKBoothAGarsideR, et al. Qualitative evidence synthesis for complex interventions and guideline development: clarification of the purpose, designs and relevant methods. BMJ Glob Health2019; 4(Suppl. 1): e000882.
36.
HannesKMacaitisK.A move to more systematic and transparent approaches in qualitative evidence synthesis: update on a review of published papers. Qual Res2012; 12: 402–442.
37.
SheaBJReevesBCWellsG, et al. AMSTAR 2: a critical appraisal tool for systematic reviews that include randomised or non-randomised studies of healthcare interventions, or both. BMJ2017; 358: j4008.
38.
ThomasJSutcliffeKHardenA, et al. Children and healthy eating: a systematic review of barriers and facilitators. London: EPPI-Centre, Social Science Research Unit, Institute of Education, University of London, 2003.
HanrattyBHibbertDMairF, et al. Doctors’ perceptions of palliative care for heart failure: focus group study. BMJ2002; 325: 581–585.
41.
HanrattyBHibbertDMairF, et al. Doctors’ understanding of palliative care. Palliat Med2006; 20(5): 493–497.
42.
BroomAKirbyEGoodP, et al. The art of letting go: referral to palliative care and its discontents. Soc Sci Med2013; 78: 9–16.
43.
BroomAKirbyEGoodP, et al. The troubles of telling: managing communication about the end of life. Qual Health Res2014; 24(2): 151–162.
44.
BloomerMJEndacottRO’ConnorM, et al. The ‘dis-ease’ of dying: challenges in nursing care of the dying in the acute hospital setting. A qualitative observational study. Palliat Med2013; 27(8): 757–764.
45.
CaseyDMurphyKNi LeimeA, et al. Dying well: factors that influence the provision of good end-of-life care for older people in acute and long-stay care settings in Ireland. J Clin Nurs2011; 20(13–14): 1824–1833.
46.
CaswellGPollockKHarwoodR, et al. Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study. BMC Palliat Care2015; 14: 35.
47.
De AraujoMMda SilvaMJFranciscoMC.Nursing the dying: essential elements in the care of terminally ill patients. Int Nurs Rev2004; 51(3): 149–158.
48.
FortinMLBouchardL.Caring for persons at the end of life in a curative care unit: privileges and heartbreaks. Can Oncol Nurs J2009; 19(3): 110–116.
49.
GardinerCHarrisonMRyanT, et al. Provision of palliative and end-of-life care in stroke units: a qualitative study. Palliat Med2013; 27(9): 855–860.
50.
GélinasCFillionLRobitailleMA, et al. Stressors experienced by nurses providing end-of-life palliative care in the intensive care unit. Can J Nurs Res2012; 44(1): 18–39.
51.
GlogowskaMSimmondsRMcLachlanS, et al. ‘Sometimes we can’t fix things’: a qualitative study of health care professionals’ perceptions of end of life care for patients with heart failure. BMC Palliat Care2016; 15: 3.
52.
HolmesSPopeSLamondD.General nurses’ perceptions of palliative care. Int J Palliat Nurs1997; 3: 92–99.
53.
HopkinsonJBHallettCELukerKA.Caring for dying people in hospital. J Adv Nurs2003; 44: 525–533.
54.
IranmaneshSAbbaszadehADargahiH, et al. Caring for people at the end of life: Iranian oncology nurses’ experiences. Indian J Palliat Care2009; 15(2): 141–147.
55.
JackBOldhamJWilliamsA.Do hospital-based palliative care clinical nurse specialists de-skill general staff?Int J Palliat Nurs2002; 8(7): 336–340.
56.
KawaguchiSMirzaRNissimR, et al. Internal medicine residents’ beliefs, attitudes, and experiences relating to palliative care: a qualitative study. Am J Hosp Palliat Care2017; 34(4): 366–372.
57.
KongsuwanWMatchimYNilmanatK, et al. Lived experience of caring for dying patients in emergency room. Int Nurs Rev2016; 63(1): 132–138.
58.
LeBaronVTPalatGSinhaS, et al. Recommendations to support nurses and improve the delivery of oncology and palliative care in India. Indian J Palliat Care2017; 23(2): 188–198.
59.
LedfordCJWCanzonaMRCaffertyLA, et al. Negotiating the equivocality of palliative care: a grounded theory of team communicative processes in inpatient medicine. Health Commun2016; 31(5): 536–543.
60.
LuthyCCedraschiCPautexS, et al. Difficulties of residents in training in end-of-life care. Palliat Med2009; 23(1): 59–65.
61.
MyttonEJAdamsA.Do clinical nurse specialists in palliative care de-skill or empower general ward nurses?Int J Palliat Nurs2003; 9: 64–72.
62.
O’SheaMF.Staff nurses’ perceptions regarding palliative care for hospitalized older adults. Am J Nurs2014; 114(11): 26–34.
Reimer-KirkhamSSawatzkyRRobertsD, et al. ‘Close to’ a palliative approach: nurses’ and care aides’ descriptions of caring for people with advancing chronic life-limiting conditions. J Clin Nurs2016; 25(15–16): 2189–2199.
65.
Roche-FahyVDowlingM.Providing comfort to patients in their palliative care trajectory: experiences of female nurses working in an acute setting. Int J Palliat Nurs2009; 15(3): 134–141.
66.
SmithAKFisherJSchonbergMA, et al. Am I doing the right thing? Provider perspectives on improving palliative care in the emergency department. Ann Emerg Med2009; 54(1): 86–9393.
67.
ThompsonGMcClementSDaeninckP.Nurses’ perceptions of quality end-of-life care on an acute medical ward. J Adv Nurs2006; 53(2): 169–177.
68.
YangMHMcIlfatrickS.Intensive care nurses’ experiences of caring for dying patients: a phenomenological study. Int J Palliat Nurs2001; 7(9): 435–441.
69.
ZambranoSCChur-HansenACrawfordGB.On the emotional connection of medical specialists dealing with death and dying: a qualitative study of oncologists, surgeons, intensive care specialists and palliative medicine specialists. BMJ Support Palliat Care2012; 2(3): 270–275.
70.
African Palliative Care Association. A framework of core competencies for palliative care providers in Africa. Kampala, Uganda: African Palliative Care Association, 2012.
71.
Canadian Hospice Palliative Care Association and Gov-ernment of Canada. The way forward national framework: a roadmap for integrated palliative approach to care. Ottawa, ON, Canada: The Way Forward Initiative, 2015.
72.
National Clinical Programme for Palliative Care Clinical Strategy and Programmes Division. Role delineation framework for adult palliative care services. Dublin: Health Service Executive, 2015.
73.
National Coalition for Hospice and Palliative Care. Clinical practice guidelines for quality palliative care. 4th ed.Richmond, VA: National Coalition for Hospice and Palliative Care, 2018.
74.
GartnerJDaunMWolfJ, et al. Early palliative care: pro, but please be precise!. Oncol Res Treat2019; 42(1–2): 11–18.
75.
KnaulFMFarmerPEKrakauerEL, et al. Alleviating the access abyss in palliative care and pain relief – an imperative of universal health coverage: the Lancet Commission report. Lancet2017; 391: 1391–1454.
76.
AslaksonRDySMWilsonRF, et al. Assessment tools for palliative care. Technical brief no. 30 (Prepared by Johns Hopkins University under contract no. 290-2015-00006-I.) AHRQ publication no. 14-17-EHC007-EF. Rockville, MD. Agency for Healthcare Research and Quality, 2017.
77.
National Clinical Programme for Palliative Care Clinical Strategy and Programmes Division. Palliative care needs assessment guidance. Dublin: Health Service Executive, 2014.
78.
HynesGCoghlanDMcCarronM.Participation as a multi-voiced process: action research in the acute hospital environment. Action Research2012; 10: 293–312.
79.
MannionRDaviesH.Understanding organisational culture for healthcare quality improvement. BMJ2018; 363: k4907.
80.
LaiteerapongNHuangES.The pace of change in medical practice and health policy: collision or coexistence?J Gen Intern Med2015; 30: 848–852.
81.
LateefF.Patient expectations and the paradigm shift of care in emergency medicine. J Emerg Trauma Shock2011; 4(2): 163–167.
82.
SaundersCBainesM.Living with dying; the management of terminal disease. Oxford: Oxford University Press, 1983.
83.
FirnJPrestonNWalsheC.Ward social workers’ views of what facilitates or hinders collaboration with specialist palliative care team social workers: a grounded theory. BMC Palliat Care2018; 17: 7.
84.
WilsonCMStillerCHDohertyDJ, et al. The role of physical therapists within hospice and palliative care in the United States and Canada. Am J Hosp Palliat Care2017; 34(1): 34–41.
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