Patient and carer experiences of clinical uncertainty and deterioration, in the face of limited reversibility: A comparative observational study of the AMBER care bundle

Palliative Medicine

Volumn 29, Issue 9, 2015, Pages 797-807

  Bristowe, Katherine ^a   Carey, Irene ^b   Hopper, Adrian ^b   Shouls, Susanna ^b   Prentice, Wendy ^c   Caulkin, Ruth ^b   Higginson, Irene J ^a   Koffman, Jonathan ^a  

^a KING'S COLLEGE LONDON   (United Kingdom)

^b GUY'S AND ST THOMAS' NHS FOUNDATION TRUST   (United Kingdom)

^c KING'S COLLEGE HOSPITAL NHS FOUNDATION TRUST   (United Kingdom)

Author keywords

communication; end of life care; evaluation; home care; hospital care; Palliative care; satisfaction; terminal care

Indexed keywords

ADULT; AGED; ARTICLE; AWARENESS; CAREGIVER BURDEN; CLINICAL ARTICLE; COMPARATIVE STUDY; CONFUSION (UNCERTAINTY); DETERIORATION; DOCTOR PATIENT RELATION; FEMALE; HEALTH CARE DELIVERY; HUMAN; INTERMETHOD COMPARISON; INTERPERSONAL COMMUNICATION; LENGTH OF STAY; MALE; MALIGNANT NEOPLASTIC DISEASE; MEDICAL DECISION MAKING; MEDICAL HISTORY; MEDICAL INFORMATION; MORTALITY; NATIONAL HEALTH SERVICE; OBSERVATIONAL STUDY; PALLIATIVE THERAPY; PATIENT ATTITUDE; PATIENT CARE; PATIENT PREFERENCE; PROGNOSIS; SEMI STRUCTURED INTERVIEW; TERMINAL CARE; TERMINAL DISEASE; TERTIARY CARE CENTER; UNITED KINGDOM; VERY ELDERLY; ADVANCE CARE PLANNING; CARE BUNDLE; CAREGIVER; ENGLAND; HEALTH CARE SURVEY; HUMAN RELATION; MIDDLE AGED; PATIENT SATISFACTION; PROCEDURES; PSYCHOLOGY; STANDARDS; UNCERTAINTY;

ADULT; ADVANCE CARE PLANNING; AGED; AGED, 80 AND OVER; CAREGIVERS; COMMUNICATION; FEMALE; HEALTH CARE SURVEYS; HUMANS; LONDON; MALE; MIDDLE AGED; PALLIATIVE CARE; PATIENT CARE BUNDLES; PATIENT SATISFACTION; PROFESSIONAL-PATIENT RELATIONS; PROGNOSIS; TERMINAL CARE; UNCERTAINTY;

EID: 84941953376     PISSN: 02692163     EISSN: 1477030X     Source Type: Journal    
DOI: 10.1177/0269216315578990     Document Type: Article

References (41)

1. Cochrane J,. The experience of uncertainty for individuals with HIV/AIDS and the palliative care paradigm. Int J Palliat Nurs 2003; 9 (9): 382-388.
2. Brown M, Levack W, McPherson KM, et al. Survival, momentum, and things that make me me: patients perceptions of goal setting after stroke. Disabil Rehabil 2014; 36 (12): 1020-1026.
3. Fouquet C, Bredart A, Bouleuc C,. Coping among patients with advanced cancer and medical communication. Bull Cancer 2013; 100 (9): 887-895.
4. Politi M, Street RJ,. The importance of communication in collaborative decision making: facilitating shared mind and the management of uncertainty. J Eval Clin Pract 2011; 17 (4): 579-584.
5. Katz J,. Why doctors dont disclose uncertainty? Hastings Cent Rep 1984; 14 (1): 35-44.
6. Braddock C 3rd, Edwards KA, Hasenberg NM, et al. Informed decision making in outpatient practice: time to get back to basics. JAMA 1999; 282 (24): 2313-2320.
7. Sorenson J,. Biomedical innovation, uncertainty, and doctor-patient interaction. J Health Soc Behav 1974; 15: 366-374.
8. Epstein R, Hadee T, Carroll J, et al. Could this be something serious? Reassurance, uncertainty, and empathy in response to patients expressions of worry. J Gen Intern Med 2007; 22: 1731-1739.
9. Gordon G, Joos S, Byrne J,. Physician expressions of uncertainty during patient encounters. Patient Educ Couns 2000; 40: 59-65.
10. Johnson CG, Levenkron JC, Suchman AL, et al. Does physician uncertainty affect patient satisfaction? J Gen Intern Med 1988; 3 (2): 144-149.
11. Fisher M, Ridley S,. Uncertainty in end-of-life care and shared decision making. Crit Care Resusc 2012; 14 (1): 81-87.
12. Ogden J, Fuks K, Gardner M, et al. Doctors expressions of uncertainty and patient confidence. Patient Educ Couns 2002; 48: 71-176.
13. Clayton JM, Butow PN, Arnold RM, et al. Discussing life expectancy with terminally ill cancer patients and their carers: a qualitative study. Support Care Cancer 2005; 13 (9): 733-742.
14. Department of Health. More care, less pathway: a review of the Liverpool Care Pathway. London: Department of Health, 2013.
15. The Stationery Office. The Mid Staffordshire NHS Foundation Trust Public Enquiry, Chaired by Robert Francis QC. London: The Stationery Office, 2013.
16. Dalgaard K, Thorsell G, Delmar C,. Identifying transitions in terminal illness trajectories: a critical factor in hospital-based palliative care. Int J Palliat Nurs 2010; 16 (2): 87-92.
17. Gott M, Ingleton C, Bennett MI, et al. Transitions to palliative care in acute hospitals in England: qualitative study. BMJ 2011; 342: d1773.
18. National End of Life Care Intelligence Network. What do we know that we didnt know a year ago? New intelligence on end of life care in England. London: National End of Life Care Programme.
19. Gomes B, Higginson IJ, Calanzani N, et al. Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Ann Oncol 2012; 23 (8): 2006-2015.
20. Schwartz C, Wheeler HB, Hammes B, et al. Early intervention in planning end-of-life care with ambulatory geriatric patients. Arch Intern Med 2002; 162 (14): 1611-1618.
21. Carey I, Shouls S, Bristowe K, et al. Improving care for patients whose recovery is uncertain. The AMBER care bundle: design, implementation and clinical outcomes. BMJ Support Palliat Care 2015; 5 (1): 12-18.
22. National End of Life Care Programme. The route to success in end of life care-achieving quality in acute hospitals. London: National End of Life Care Programme-improving end of life care, 2010.
23. Currow DC, Higginson IJ,. Time for a prospective study to evaluate the AMBER care bundle. BMJ Support Palliat Care 2013; 3 (4): 376-377.
24. OCathain A, Murphy E, Nicholl JP,. Three techniques for integrating qualitative and quantitative methods in health services research. BMJ 2010; 341: 1147-1150.
25. Miles M, Huberman A,. Qualitative data analysis. London: SAGE, 1994.
26. Ritchie J, Lewis J, Elam G,. Designing and selecting samples. In: Ritchie J, Lewis J, (eds) Qualitative research practice. London: SAGE, 2003, pp. 77-108.
27. Gomes B, McCrone P, Hall S, et al. Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study. BMC Cancer 2010; 10: 400.
28. Koffman J, Higginson IJ, Hall S, et al. Bereaved relatives views about participating in cancer research. Palliat Med 2012; 26 (4): 379-383.
29. McCarthy M, Addington-Hall JM, Altmann D,. The experience of dying with dementia: a retrospective survey. Int J Geriatr Psychiatry 1997; 12: 404-409.
30. Addington-Hall JM, Fakhoury W, McCarthy M,. Specialist palliative care in non-malignant disease. Palliat Med 1998; 12: 417-427.
31. McCarthy M, Addington-Hall JM, Lay M,. Communication and choice in dying from heart disease. J R Soc Med 1997; 90: 128-131.
32. Hunt KJ, Shlomo N, Addington-Hall J,. End-of-life care and achieving preferences for place of death in England: results of a population-based survey using the VOICES-SF questionnaire. Palliat Med 2014; 28 (5): 412-421.
33. Cresswell JW, Plano Clark VL,. Designing and conducting mixed methods research. Thousand Oaks, CA: SAGE, 2011.
34. Bruera E, Sweeney C, Calder K, et al. Patient preferences versus physician perceptions of treatment decisions in cancer care. J Clin Oncol 2001; 19: 2883-2885.
35. Gattellari M, Butow P,. Informational needs and decisional preferences in women with breast cancer. JAMA 2001; 277: 1485-1492.
36. Garfield S, Smith F, Francis SA, et al. Can patients preferences for involvement in decision-making regarding the use of medicines be predicted? Patient Educ Couns 2007; 66 (3): 361-367.
37. Hudak P, Frankel RM, Braddock C 3rd, et al. Do patients communication behaviors provide insight into their preferences for participation in decision making? Med Decis Making 2008; 28 (3): 385-393.
38. Shin D, Cho J, Kim SY, et al. Discordance among patient preferences, caregiver preferences, and caregiver predictions of patient preferences regarding disclosure of terminal status and end-of-life choices. Psychooncology 2015; 24 (2): 212-219.
39. Addington-Hall J, McPherson C,. After-death interviews with surrogates/bereaved family members: some issues of validity. J Pain Symptom Manage 2001; 22 (3): 784-790.
40. McPherson CJ, Addington-Hall JM,. Judging the quality of care at the end of life: can proxies provide reliable information? Soc Sci Med 2003; 56 (1): 95-109.
41. Koffman J, Higginson IJ, Donaldson N,. Symptom severity in advanced cancer, assessed in two ethnic groups by interviews with bereaved family members and friends. J R Soc Med 2003; 96 (1): 10-16.