The challenges of uncertainty and interprofessional collaboration in palliative care for non-cancer patients in the community: a systematic review of views from patients, carers and health-care professionals

Ai Oishi, Fliss E M Murtagh, Ai Oishi, Fliss E M Murtagh

Abstract

Background: Primary care has the potential to play significant roles in providing effective palliative care for non-cancer patients.

Aim: To identify, critically appraise and synthesise the existing evidence on views on the provision of palliative care for non-cancer patients by primary care providers and reveal any gaps in the evidence.

Design: Standard systematic review and narrative synthesis.

Data sources: MEDLINE, Embase, CINAHL, PsycINFO, Applied Social Science Abstract and the Cochrane library were searched in 2012. Reference searching, hand searching, expert consultations and grey literature searches complemented these. Papers with the views of patients/carers or professionals on primary palliative care provision to non-cancer patients in the community were included. The amended Hawker's criteria were used for quality assessment of included studies.

Results: A total of 30 studies were included and represent the views of 719 patients, 605 carers and over 400 professionals. In all, 27 studies are from the United Kingdom. Patients and carers expect primary care physicians to provide compassionate care, have appropriate knowledge and play central roles in providing care. The roles of professionals are unclear to patients, carers and professionals themselves. Uncertainty of illness trajectory and lack of collaboration between health-care professionals were identified as barriers to effective care.

Conclusions: Effective interprofessional work to deal with uncertainty and maintain coordinated care is needed for better palliative care provision to non-cancer patients in the community. Research into and development of a best model for effective interdisciplinary work are needed.

Keywords: Palliative care; chronic obstructive pulmonary disease; community health services; heart failure; interprofessional relations; primary health care.

Conflict of interest statement

Declaration of conflicting interests: The authors declare that there is no conflict of interest.

© The Author(s) 2014.

Figures

Figure 1.
Figure 1.
PRISMA flow diagram of study selection. PRISMA: Preferred Reporting Items for Systematic Reviews and Meta-Analyses.
Figure 2.
Figure 2.
Expectations and concerns between patients, carers and health-care professionals. GP: general practitioner; HCP: health-care professional.

References

    1. National Hospice and Palliative Care Organization. NHPCO facts and figures: hospice care in America, 2012 edition, 2012,
    1. The National Council for Palliative Care. National survey of patient activity data for specialist palliative care services: MDS full report for the year 2011–2012, 2012,
    1. Fukui S, Yoshiuchi K, Fujita J, et al. Japanese people’s preference for place of end-of-life care and death: a population-based nationwide survey. J Pain Symptom Manage 2011; 42(6): 882–892.
    1. Murtagh FEM, Bausewein C, Sleeman K, et al. Understanding place of death for patients with non malignant conditions: a systematic literature review. Southampton: National Institute of Health Research, 2012.
    1. Field D. Special not different: general practitioners’ accounts of their care of dying people. Soc Sci Med 1998; 46(9): 1111–1120.
    1. O’Connor M, Lee-Steere R. General practitioners’ attitudes to palliative care: a Western Australian rural perspective. J Palliat Med 2006; 9(6): 1271–1281.
    1. Burt J, Shipman C, White P, et al. Roles, service knowledge and priorities in the provision of palliative care: a postal survey of London GPs. Palliat Med 2006; 20(5): 487–492.
    1. Gott M, Seymour J, Ingleton C, 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 Med 2012; 26(3): 232–241.
    1. Addington-Hall JM, Hunt K. Non-cancer patients as an under-served group. In: Cohen J, Deliens L. (eds) A public health perspective on end of life care. Oxford: Oxford University Press, 2012, pp. 151–159.
    1. Gibbs JSR, McCoy ASM, Gibbs LME, et al. Living with and dying from heart failure: the role of palliative care. Heart 2002; 88(Suppl. 2): ii36–ii39.
    1. Giacomini M, DeJean D. Experiences of living and dying with COPD: a systematic review and synthesis of the qualitative empirical literature. Ont Health Technol Assess Ser 2012; 12(13): 1–47.
    1. Lorenz KA, Shugarman LR, Lynn J. Health care policy issues in end-of-life care. J Palliat Med 2006; 9(3): 731–748.
    1. World Health Organization. WHO definition of palliative care, 2002,
    1. Centre for Reviews and Dissemination. Systematic reviews: CRD’s guidance for undertaking reviews in health care. York: CRD, University of York, 2009.
    1. Liberati A, Altman DG, Tetzlaff J, et al. The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. Ann Intern Med 2009; 151(4): W65–W94.
    1. Popay J, Roberts H, Sowden A, et al. Guidance on the conduct of narrative synthesis in systematic reviews: a product from the ESRC methods programme, (2006)
    1. UK Clinical Research Network Study Portfolio Database.
    1. CareSearch Grey Literature.
    1. Open Grey.
    1. Cooke A, Smith D, Booth A. Beyond PICO: the SPIDER tool for qualitative evidence synthesis. Qual Health Res 2012; 22(10): 1435–1443.
    1. Waterworth S, Jorgensen D. It’s not just about heart failure – voices of older people in transition to dependence and death. Health Soc Care Community 2010; 18(2): 199–207.
    1. Wotton K, Borbasi S, Redden M. When all else has failed: nurses’ perception of factors influencing palliative care for patients with end-stage heart failure. J Cardiovasc Nurs 2005; 20(1): 18–25.
    1. Davison SN, Simpson C. Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ 2006; 333(7574): 886.
    1. Mahtani-Chugani V, Gonzalez-Castro I, De Ormijana-Hernandez AS, et al. How to provide care for patients suffering from terminal non-oncological diseases: barriers to a palliative care approach. Palliat Med 2010; 24(8): 787–795.
    1. Hawker S, Payne S, Kerr C, et al. Appraising the evidence: reviewing disparate data systematically. Qual Health Res 2002; 12(9): 1284–1299.
    1. Skilbeck J, Mott L, Page H, et al. Palliative care in chronic obstructive airways disease: a needs assessment. Palliat Med 1998; 12(4): 245–254.
    1. Oliver S. Living with failing lungs: the doctor-patient relationship. Fam Pract 2001; 18(4): 430–439.
    1. Jones I, Kirby A, Ormiston P, et al. The needs of patients dying of chronic obstructive pulmonary disease in the community. Fam Pract 2004; 21(3): 310–313.
    1. Gysels M, Higginson IJ. Access to services for patients with chronic obstructive pulmonary disease: the invisibility of breathlessness. J Pain Symptom Manage 2008; 36(5): 451–460.
    1. Shipman C, White S, Gysels M, et al. Access to care in advanced COPD: factors that influence contact with general practice services. Prim Care Respir J 2009; 18(4): 273–278.
    1. Brumley R, Enguidanos S, Jamison P, et al. Increased satisfaction with care and lower costs: results of a randomized trial of in-home palliative care. J Am Geriatr Soc 2007; 55(7): 993–1000.
    1. Seamark DA, Blake SD, Seamark CJ, et al. Living with severe chronic obstructive pulmonary disease (COPD): perceptions of patients and their carers. An interpretative phenomenological analysis. Palliat Med 2004; 18(7): 619–625.
    1. Edmonds P, Vivat B, Burman R, et al. ‘Fighting for everything’: service experiences of people severely affected by multiple sclerosis. Mult Scler 2007; 13(5): 660–667.
    1. Whitehead B, O’Brien MR, Jack BA, et al. Experiences of dying, death and bereavement in motor neurone disease: a qualitative study. Palliat Med 2011; 26(4): 368–378.
    1. Pinnock H, Kendall M, Murray SA, et al. Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study. BMJ 2011; 342(7791): d142.
    1. Murray SA, Boyd K, Kendall M, et al. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ 2002; 325(7370): 929.
    1. Boyd KJ, Murray SA, Kendall M, et al. Living with advanced heart failure: a prospective, community based study of patients and their carers. Eur J Heart Fail 2004; 6(5): 585–591.
    1. Boyd KJ, Worth A, Kendall M, et al. Making sure services deliver for people with advanced heart failure: a longitudinal qualitative study of patients, family carers, and health professionals. Palliat Med 2009; 23(8): 767–776.
    1. Waterworth S, Gott M, Raphael D, et al. Older people with heart failure and general practitioners: temporal reference frameworks and implications for practice. Health Soc Care Community 2011; 19(4): 412–419.
    1. Hughes RA, Sinha A, Higginson IJ, et al. Living with motor neurone disease: lives, experiences of services and suggestions for change. Health Soc Care Community 2005; 13(1): 64–74.
    1. Exley C, Field D, Jones L, et al. Palliative care in the community for cancer and end-stage cardiorespiratory disease: the views of patients, lay-carers and health care professionals. Palliat Med 2005; 19(1): 76–83.
    1. Fitzsimons D, Mullan D, Wilson JS, et al. The challenge of patients’ unmet palliative care needs in the final stages of chronic illness. Palliat Med 2007; 21(4): 313–322.
    1. Elkington H, White P, Addington-Hall JM, et al. The last year of life of COPD: a qualitative study of symptoms and services. Respir Med 2004; 98(5): 439–445.
    1. Herz H, McKinnon PM, Butow PN. Proof of love and other themes: a qualitative exploration of the experience of caring for people with motor neurone disease. Prog Palliat Care 2006; 14(5): 209–214.
    1. Addington-Hall JM, Lay M, Altmann D, et al. Symptom control, communication with health professionals, and hospital care of stroke patients in the last year of life as reported by surviving family, friends, and officials. Stroke 1995; 26(12): 2242–2248.
    1. Young AJ, Rogers A, Addington-Hall JM. The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire. Health Soc Care Community 2008; 16(4): 419–428.
    1. Hasson F, Kernohan WG, McLaughlin M, et al. An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease. Palliat Med 2010; 24(7): 731–736.
    1. McLaughlin D, Hasson F, Kernohan WG, et al. Living and coping with Parkinson’s disease: perceptions of informal carers. Palliat Med 2011; 25(2): 177–182.
    1. Disler R, Jones A. District nurse interaction in engaging with end-stage chronic obstructive pulmonary disease patients: a mixed methods study. J Nurs Healthc Chronic Illn 2010; 2(4): 302–312.
    1. Hanratty B, Hibbert D, Mair F, et al. Doctors’ perceptions of palliative care for heart failure: focus group study. BMJ 2002; 325(7364): 581–585.
    1. Hanratty B, Hibbert D, Mair F, et al. Doctor’s understanding of palliative care. Palliat Med 2006; 20(5): 493–497.
    1. Waterworth S, Raphael D, Horsburgh M. Yes, but it’s somewhat difficult-managing end of life care in primary health care. Ageing Int 2010; 37(4): 459–469.
    1. Waterworth S, Gott M. Involvement of the practice nurse in supporting older people with heart failure: GP perspectives. Prog Palliat Care 2012; 20(1): 7–12.
    1. Grisaffi K, Robinson L. Timing of end-of-life care in dementia: difficulties and dilemmas for GPs. J Dement Care 2010; 18(3): 36–39.
    1. Brännström M, Forssell A, Pettersson B. Physicians’ experiences of palliative care for heart failure patients. Eur J Cardiovasc Nurs 2011; 10(1): 64–69.
    1. Mitchell GK. How well do general practitioners deliver palliative care? A systematic review. Palliat Med 2002; 16(6): 457–464.
    1. Grande GE, Farquhar MC, Barclay SI, et al. Valued aspects of primary palliative care: content analysis of bereaved carers’ descriptions. Br J Gen Pract 2004; 54(507): 772–778.
    1. Borgsteede S. Good end-of-life care according to patients and their GPs. Br J Gen Pract 2006; 56(522): 20–26.
    1. Lunney JR, Lynn J, Foley DJ, et al. Pattern of functional decline at the end of life. JAMA 2003; 289(18): 2387–2392.
    1. Murray SA, Kendall M, Boyd K, et al. Illness trajectories and palliative care. BMJ 2005; 330(7498): 1007–1011.
    1. Murtagh FEM, Preston M, Higginson IJ. Patterns of dying: palliative care for non-malignant disease. Clin Med 2004; 4(1): 39–44.
    1. Coventry PA, Grande GE, Richards DA, et al. Prediction of appropriate timing of palliative care for older adults with non-malignant life-threatening disease: a systematic review. Age Ageing 2005; 34(3): 218–227.
    1. Elkington H, White P, Addington-Hall JM, et al. The healthcare needs of chronic obstructive pulmonary disease patients in the last year of life. Palliat Med 2005; 19(6): 485–491.
    1. Walshe C, Luker KA. District nurses’ role in palliative care provision: a realist review. Int J Nurs Stud 2010; 47(9): 1167–1183.
    1. Barclay S, Rogers M, Todd C. Communication between GPs and cooperatives is poor for terminally ill patients. BMJ 1997; 315(7117): 1235–1236.
    1. Goldsmith J, Wittenberg-Lyles E, Rodriguez D, et al. Interdisciplinary geriatric and palliative care team narratives: collaboration practices and barriers. Qual Health Res 2010; 20(1): 93–104.
    1. Meier DE, Beresford L. The palliative care team. J Palliat Med 2008; 11(5): 677–681.
    1. Low J, Pattenden J, Candy B, et al. Palliative care in advanced heart failure: an international review of the perspectives of recipients and health professionals on care provision. J Card Fail 2011; 17(3): 231–252.
    1. Thomas K, Noble B. Improving the delivery of palliative care in general practice: an evaluation of the first phase of the Gold Standards Framework. Palliat Med 2007; 21(1): 49–53.
    1. Walshe C, Caress A, Chew-Graham C, et al. Implementation and impact of the Gold Standards Framework in community palliative care: a qualitative study of three primary care trusts. Palliat Med 2008; 22(6): 736–743.
    1. Munday D, Mahmood K, Dale J, et al. Facilitating good process in primary palliative care: does the Gold Standards Framework enable quality performance? Fam Pract 2007; 24(5): 486–494.
    1. The National GSF Centre. The gold standards framework in primary care: GSF primary care briefing paper, 2009,
    1. Watson J, Hockley J, Murray S. Evaluating effectiveness of the GSFCH and LCP in care homes. End Life J 2010; 4(3): 42–49.
    1. Shaw KL, Clifford C, Thomas K, et al. Review: improving end-of-life care: a critical review of the gold standards framework in primary care. Palliat Med 2010; 24(3): 317–329.
    1. Gardiner C, Gott M, Ingleton C. Factors supporting good partnership working between generalist and specialist palliative care services: a systematic review. Br J Gen Pract 2012; 62(598): e353–e362.
    1. Daley A, Matthews C, Williams A. Heart failure and palliative care services working in partnership: report of a new model of care. Palliat Med 2006; 20(6): 593–601.
    1. Royal College of General Practitioners. Medical generalism: Why expertise in whole person medicine matters London: Royal College of General Practitioners, 2012,
    1. Murray SA, Boyd K, Sheikh A. Palliative care in chronic illness. BMJ 2005; 330(7492): 611–612.
    1. Barclay S. Palliative care for non-cancer patients: a UK perspective from primary care. In: Addington-Hall JM, Higginson IJ. (eds) Palliative care for non-cancer patients. Oxford: Oxford University Press, 2001, pp. 172–185.

Source: PubMed

Patrocinadores y Colaboradores

Condiciones médicas

Intervenciones de drogas

3
Suscribir