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

Palliative Medicine

Volumn 28, Issue 9, 2014, Pages 1081-1098

  Oishi, Ai ^a   Murtagh, Fliss E M ^a  

^a KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

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

Indexed keywords

CANCER PATIENT; CHRONIC OBSTRUCTIVE LUNG DISEASE; COMMUNITY CARE; GENERAL PRACTITIONER; HEALTH CARE ACCESS; HEALTH CARE PERSONNEL; HEART FAILURE; HUMAN; PALLIATIVE THERAPY; PATIENT SATISFACTION; PRIMARY HEALTH CARE; REVIEW; SYSTEMATIC REVIEW; UNITED KINGDOM; ATTITUDE TO HEALTH; HEALTH CARE DELIVERY; HEALTH PERSONNEL ATTITUDE; HEALTH SERVICE; HEALTH SERVICES RESEARCH; ORGANIZATION AND MANAGEMENT; PROFESSIONAL STANDARD; PUBLIC RELATIONS; STANDARDS;

ATTITUDE OF HEALTH PERSONNEL; DELIVERY OF HEALTH CARE; GREAT BRITAIN; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEALTH SERVICES NEEDS AND DEMAND; HEALTH SERVICES RESEARCH; HUMANS; INTERPROFESSIONAL RELATIONS; PALLIATIVE CARE; PATIENT SATISFACTION; PROFESSIONAL ROLE;

EID: 84907189057     PISSN: 02692163     EISSN: 1477030X     Source Type: Journal    
DOI: 10.1177/0269216314531999     Document Type: Review

References (79)

1. National Hospice and Palliative Care Organization. NHPCO facts and figures: hospice care in America, 2012 edition, 2012, http://www.nhpco.org/sites/default/files/public/Statistics-Research/2012-Facts-Figures.pdf
2. 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, http://www.ncpc.org.uk/sites/default/files/MDS%20Full%20Report%202012.pdf
3. 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
4. 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 :
5. Field D.. Special not different: general practitioners' accounts of their care of dying people. Soc Sci Med. 1998 ; 46 (9). 1111-1120
6. 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
7. 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
8. 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
9. Addington-Hall JM, Hunt K. A public health perspective on end of life care. Cohen J Deliens L, ed. Oxford: Oxford University Press ; 2012: 151-159.
10. Gibbs JSR, McCoy ASM, Gibbs LME, et al. Living with and dying from heart failure: the role of palliative care. Heart. 2002 ; 88: ii36 - ii39
11. 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
12. Lorenz KA, Shugarman LR, Lynn J.. Health care policy issues in end-of-life care. J Palliat Med. 2006 ; 9 (3). 731-748
13. World Health Organization. WHO definition of palliative care, 2002, http://www.who.int/cancer/palliative/definition/en/
14. Systematic reviews: CRD's guidance for undertaking reviews in health care. York: CRD, University of York ; 2009 :
15. 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
16. PopayJRobertsHSowdenA. Guidance on the conduct of narrative synthesis in systematic reviews: a product from the ESRC methods programme, http://www.lancaster.ac.uk/shm/research/nssr/research/dissemination/publications.php (2006)
17. UK Clinical Research Network Study Portfolio Database. http://public.ukcrn.org.uk/search/
18. CareSearch Grey Literature. http://www.caresearch.com.au/caresearch/FindingEvidence/CareSearchGreyLiterature/tabid/82/Default.aspx
19. Open Grey. http://www.opengrey.eu/
20. Cooke A, Smith D, Booth A.. Beyond PICO: the SPIDER tool for qualitative evidence synthesis. Qual Health Res. 2012 ; 22 (10). 1435-1443
21. 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
22. 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
23. Davison SN, Simpson C.. Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ. 2006 ; 333 (7574). 886
24. 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
25. Hawker S, Payne S, Kerr C, et al. Appraising the evidence: reviewing disparate data systematically. Qual Health Res. 2002 ; 12 (9). 1284-1299
26. 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
27. Oliver S.. Living with failing lungs: the doctor-patient relationship. Fam Pract. 2001 ; 18 (4). 430-439
28. 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
29. 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
30. 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
31. 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
32. 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
33. 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
34. 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
35. 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
36. 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
37. 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
38. 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
39. 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
40. 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
41. 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
42. 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
43. 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
44. 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
45. 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
46. 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
47. 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
48. 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
49. 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
50. 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
51. Hanratty B, Hibbert D, Mair F, et al. Doctor's understanding of palliative care. Palliat Med. 2006 ; 20 (5). 493-497
52. 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
53. 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
54. 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
55. Brännström M, Forssell A, Pettersson B.. Physicians' experiences of palliative care for heart failure patients. Eur J Cardiovasc Nurs. 2011 ; 10 (1). 64-69
56. Mitchell GK.. How well do general practitioners deliver palliative care? A systematic review. Palliat Med. 2002 ; 16 (6). 457-464
57. 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
58. Borgsteede S.. Good end-of-life care according to patients and their GPs. Br J Gen Pract. 2006 ; 56 (522). 20-26
59. Lunney JR, Lynn J, Foley DJ, et al. Pattern of functional decline at the end of life. JAMA. 2003 ; 289 (18). 2387-2392
60. Murray SA, Kendall M, Boyd K, et al. Illness trajectories and palliative care. BMJ. 2005 ; 330 (7498). 1007-1011
61. Murtagh FEM, Preston M, Higginson IJ.. Patterns of dying: palliative care for non-malignant disease. Clin Med. 2004 ; 4 (1). 39-44
62. 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
63. 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
64. Walshe C, Luker KA.. District nurses' role in palliative care provision: a realist review. Int J Nurs Stud. 2010 ; 47 (9). 1167-1183
65. Barclay S, Rogers M, Todd C.. Communication between GPs and cooperatives is poor for terminally ill patients. BMJ. 1997 ; 315 (7117). 1235-1236
66. 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
67. Meier DE, Beresford L.. The palliative care team. J Palliat Med. 2008 ; 11 (5). 677-681
68. 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
69. 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
70. 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
71. 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
72. The National GSF Centre. The gold standards framework in primary care: GSF primary care briefing paper, 2009, http://www.thewpca.org/EasysiteWeb/getresource.axd?AssetID=93083&type=Full&servicetype=Attachment\FINAL%20GSF%20Brochure%20UK%20(1).pdf
73. Watson J, Hockley J, Murray S.. Evaluating effectiveness of the GSFCH and LCP in care homes. End Life J. 2010 ; 4 (3). 42-49
74. 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
75. 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
76. 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
77. Royal College of General Practitioners. Medical generalism: Why expertise in whole person medicine mattersLondon: Royal College of General Practitioners, 2012, http://www.rcgp.org.uk/policy/rcgp-policy-areas/∼/media/Files/Policy/A-Z-policy/Medical-Generalism-Why-expertise-in-whole-person-medicine-matters.ashx
78. Murray SA, Boyd K, Sheikh A.. Palliative care in chronic illness. BMJ. 2005 ; 330 (7492). 611-612
79. Barclay S. Palliative care for non-cancer patients. Addington-Hall JM Higginson IJ, ed. Oxford: Oxford University Press ; 2001: 172-185.