"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 Palliative Care

Volumn 15, Issue 1, 2016, Pages

  Glogowska, Margaret ^a   Simmonds, Rosemary ^b   McLachlan, Sarah ^c   Cramer, Helen ^b   Sanders, Tom ^d   Johnson, Rachel ^b   Kadam, Umesh T ^c   Lasserson, Daniel S ^a   Purdy, Sarah ^b  

^a UNIVERSITY OF OXFORD   (United Kingdom)

^b UNIVERSITY OF BRISTOL   (United Kingdom)

^c KEELE UNIVERSITY   (United Kingdom)

^d UNIVERSITY OF SHEFFIELD   (United Kingdom)

Author keywords

Advance care planning; End of Life care; Heart failure; Palliative care

Indexed keywords

ARTICLE; ATTITUDE TO DEATH; CLINICAL DECISION MAKING; DEATH; HEALTH CARE PERSONNEL; HEALTH PERSONNEL ATTITUDE; HEART FAILURE; HOSPITAL ADMISSION; HUMAN; PATIENT CARE; PERCEPTION; QUALITATIVE RESEARCH; TERMINAL CARE; UNITED KINGDOM; ADULT; DOCTOR PATIENT RELATION; ENGLAND; FEMALE; INTERPERSONAL COMMUNICATION; MALE; PSYCHOLOGY;

ADULT; COMMUNICATION; DEATH; ENGLAND; FEMALE; HEALTH PERSONNEL; HEART FAILURE; HUMANS; MALE; PERCEPTION; PHYSICIAN-PATIENT RELATIONS; QUALITATIVE RESEARCH; TERMINAL CARE;

EID: 84954480878     PISSN: None     EISSN: 1472684X     Source Type: Journal    
DOI: 10.1186/s12904-016-0074-y     Document Type: Article

References (51)

1. Whellan DJ, Goodlin SJ, Dickinson MG, et al. Consensus Statement: End-of-Life Care in Patients with Heart Failure. J Card Fail. 2014;20(2):121-34.
2. Hobbs FD, Roalfe AK, Davis RC, et al. Prognosis of all-cause heart failure and borderline left ventricular systolic dysfunction: 5 year mortality follow-up of the Echocardiographic Heart of England Screening Study (ECHOES). Eur Heart J. 2007;28:1128-34.
3. National Institute for Health and Clinical Excellence (NICE). Chronic heart failure: Management of chronic heart failure in adults in primary and secondary care. NICE clinical guideline 108. National Institute for Health and Care Excellence. 2010.
4. 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):767-76.
5. Jaarsma T, Beattie JM, Ryder M, et al. Palliative care in heart failure: a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology. Eur J Heart Fail. 2009;11:433-43.
6. Iqbal J, Francis L, Reid J, et al. Quality of life in patients with chronic heart failure and their carers: a 3-year follow-up study assessing hospitalization and mortality. Eur J Heart Fail. 2010;12:1002-8.
7. Rogers AE, Addington-Hall JM, Abery AJ, et al. Knowledge and communication difficulties for patients with chronic heart failure: qualitative study. BMJ. 2000;321:605-7.
8. Horne G, Payne S. Removing the boundaries: palliative care for patients with heart failure. Palliat Med. 2004;18:291-6.
9. 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;6:585-91.
10. Hogg KJ, Jenkins SMM. Prognostication or identification of palliative needs in advanced heart failure: where should the focus lie? Heart. 2012;98:523-4.
11. Gadoud A, Kane E, Macleod U, et al. Palliative Care among Heart Failure Patients in Primary Care: A Comparison to Cancer Patients Using English Family Practice Data. PLoS ONE 9(11): e113188. doi: 10.1371/journal.pone.0113188.
12. 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;325:929.
13. 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:d142.
14. Gott M, Gardiner C, Small N, et al. Barriers to advance care planning in chronic obstructive pulmonary disease. Palliat Med. 2009;23:642-8.
15. Hancock K, Clayton JM, Parker SM, et al. Truth-telling in discussion prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med. 2007;21:507-17.
16. Ward C. The need for palliative care in the management of heart failure. Heart. 2002;87:294-8.
17. Murray SA, Boyd K, Sheikh A, et al. Developing primary palliative care. BMJ. 2004;329:1056-7.
18. Gadoud A, Shona MM, Jenkins SMM, et al. Palliative care for people with heart failure: Summary of current evidence and future direction. Palliat Med. 2013;27:822-8.
19. O'Leary N, Murphy NF, O'Loughlin C, et al. A comparative study of the palliative care needs of heart failure and cancer patients. Eur J Heart Fail. 2009;11:406-12.
20. Glogowska M, Simmonds, R, McLachlan S, et al. Experiences of managing patients with heart failure: a qualitative study of multidisciplinary teams with specialist heart failure nurses. Ann Fam Med. 2015;13:466-471.
21. Strauss A, Corbin J. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. 2nd ed. Thousand Oaks, CA: Sage; 1990.
22. Silverman D. Doing Qualitative Research. 3rd ed. London: Sage; 2010.
23. Lincoln YS, Guba EH. Naturalistic inquiry. Beverly Hills: Sage; 1985.
24. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349-57.
25. Barnes S, Gott M, Payne S, et al. Communication in heart failure: perspectives from older people and primary care professionals. Health Soc Care Commun. 2006;14(6):482-90.
26. Department of Health. End of life care strategy: Promoting high quality care for all adults at the end of life. London: Department of Health. https://www.gov.uk/government/uploads/system/uploads/attachment-data/file/136431/End-of-life
27. Barclay S, Momen N, Case-Upton S, et al. End-of-life care conversations with heart failure patients: a systematic literature review and narrative synthesis. Br J Gen Pract. 2011. doi: 10.3399/bjgp11X549018.
28. Ahluwalia SC, Levin JR, Lorenz KA, et al. Missed opportunities for advance care planning communication during outpatient clinic visits. J Gen Intern Med. 2011;27(4):445-51.
29. Ahluwalia SC, Levin JR, Lorenz KA, et al. "There's no cure for this condition": How physicians discuss advance care planning in heart failure. Patient Educ Couns. 2013;91:200-5.
30. Murray SA, Boyd K, Sheikh A. Palliative care in chronic illness. BMJ. 2005;330:611-2.
31. Dev S, Abernethy AP, Rogers JG, et al. Preferences of people with advanced heart failure - a structured narrative literature review to inform decision making in the palliative care setting. Am Heart J. 2012;164:313-319.e5.
32. Selman L, Harding R, Beynon T, et al. Modelling services to meet the palliative care needs of chronic heart failure patients and their families: current practice in the UK. Palliat Med. 2007;21:385-90.
33. Gold Standards Framework. Prognostic indicator guidance: to aid identification of adult patients with advanced disease, in the last months/years of life, who are in need of supportive and palliative care. http://goldstandardsframework.org.uk/cd-content/uploads/files/General%20Files/Prognostic%20Indicator%20Guidance%20October%202011.pdf (2011, accessed 02/07/2014)
34. Haga K, Murray S, Reid J, et al. Identifying community based chronic heart failure patients in the last year of life: a comparison of the Gold Standards Framework Prognostic Indicator Guide and the Seattle Heart Failure Model. Heart. 2012;98:579-83.
35. O'Callaghan A, Laking G, Frey R, et al. Can we predict which hospitalised patients are in their last year of life? A prospective cross-sectional study of the Gold Standards Framework Prognostic Indicator Guidance as a screening tool in the acute hospital setting. Palliat Med. 2014;28(8):1046-52.
36. Stewart S, McMurray JJV. Palliative care for heart failure. BMJ. 2002;325:915-6.
37. Hancock HC, Close H, Fuat A, et al. Barriers to accurate diagnosis and effective management of heart failure have not changed in the past 10 years: a qualitative study and national survey. BMJ Open. 2014;4, e003866.
38. Gibbs JSR, McCoy ASM, Gibbs LME, et al. Living with and dying from heart failure: the role of palliative care. Heart. 2002;88(Suppl II):i36-ii39.
39. Seamark DA, Ryan M, Smallwood N, et al. Deaths from heart failure in general practice: implications for palliative care. Palliat Med. 2002;16:495-8.
40. Seow H, Brazil K, Sussman J, et al. Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis. BMJ. 2014;348:g3496.
41. Field D, Addington-Hall J. Extending specialist palliative care to all? Soc Sci Med. 1999;48:1271-80.
42. Blue L, Stewart S. New frontiers in specialist nurse management of heart failure. In: Stewart S, Blue L, editors. Improving outcomes in chronic heart failure: Specialist nurse intervention from research to practice. London: BMJ Books; 2004. p. 187-97.
43. Johnson MJ, Houghton T. Palliative care for patients with heart failure: description of a service. Palliat Med. 2006;20:211-4.
44. Pattenden J. Better together: A study of the development and impact of the British Heart Foundation and Marie Curie Nurses supportive and palliative care initiative for patients with heart failure and their families. York: Department of Health Sciences, University of York; 2009.
45. 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;17:231-52.
46. Anderson H, Ward C, Eardley A, et al. The concerns of patients under palliative care and a heart failure clinic are not being met. Palliat Med. 2001;15:279-86.
47. Barnes S, Gott M, Payne S, et al. Characteristics and views of family carers of older people with heart failure. Int J Palliat Nurs. 2005;12(8):380-9.
48. Selman L, Harding R, Beynon T, et al. Improving end-of-life care for patients with chronic heart failure: "Let's hope it'll get better, when I know in my heart of hearts it won't". Heart. 2007;93:963-7.
49. 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;34:218-27.
50. Oishi A, Murtagh FEM. 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. Palliat Med. 2014;28(9):1081-98.
51. Wye L, Lasseter G, Percival J, et 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 Palliative Care. 2014;13:37.