Understanding the experience of patients with chronic obstructive pulmonary disease who access specialist palliative care: A qualitative study

Palliative Medicine

Volumn 27, Issue 9, 2013, Pages 861-868

  Hayle, Catherine ^a   Coventry, Peter A ^b   Gomm, Stephanie ^a   Caress, Ann Louise ^b  

^a SALFORD ROYAL NHS FOUNDATION TRUST   (United Kingdom)

^b UNIVERSITY OF MANCHESTER   (United Kingdom)

Author keywords

Chronic obstructive; palliative care; pulmonary disease; qualitative research

Indexed keywords

ARTICLE; CHRONIC OBSTRUCTIVE LUNG DISEASE; DISTRESS SYNDROME; DYING; HEALTH CARE ACCESS; HOSPICE CARE; HOSPITAL ADMISSION; MEDICAL SPECIALIST; PALLIATIVE THERAPY; PATIENT REFERRAL; PHYSIOTHERAPY; PROGNOSIS; PSYCHOLOGICAL WELL BEING; QUALITATIVE RESEARCH; SEMI STRUCTURED INTERVIEW; UNITED KINGDOM;

CHRONIC OBSTRUCTIVE; PALLIATIVE CARE; PULMONARY DISEASE; QUALITATIVE RESEARCH;

AGED; ENGLAND; FEMALE; HUMANS; MALE; MIDDLE AGED; PALLIATIVE CARE; PATIENT ADMISSION; PATIENT DISCHARGE; PATIENT SATISFACTION; PATIENTS; PULMONARY DISEASE, CHRONIC OBSTRUCTIVE; QUALITATIVE RESEARCH; QUALITY OF HEALTH CARE; SOCIAL ISOLATION;

EID: 84884520922     PISSN: 02692163     EISSN: 1477030X     Source Type: Journal    
DOI: 10.1177/0269216313486719     Document Type: Article

References (49)

1. The global burden of disease 2004 update. Geneva, Switzerland: World Health Organization ; 2008 :
2. Habraken JM, ter Riet G, Gore JM, et al. Health-related quality of life in end-stage COPD and lung cancer patients. J Pain Symptom Manage. 2009 ; 37: 973-981
3. Gore JM, Brophy CJ, Greenstone MA. How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax. 2000 ; 55: 1000-1006
4. Elkington H, White P, Addington-Hall J, et al. The healthcare needs of chronic obstructive pulmonary disease patients in the last year of life. Palliat Med. 2005 ; 19: 485-491
5. Blinderman CD, Homel P, Billings JA, et al. Symptom distress and quality of life in patients with advanced chronic obstructive pulmonary disease. J Pain Symptom Manage. 2009 ; 38: 115-123
6. Skilbeck J, Mott L, Page H, et al. Palliative care in chronic obstructive airways disease: a needs assessment. Palliat Med. 1998 ; 12: 245-254
7. Edmonds P, Karlsen S, Khan S, et al. A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer. Palliat Med. 2001 ; 15: 287-295
8. Zhang MW, Ho RC, Cheung MW, et al. Prevalence of depressive symptoms in patients with chronic obstructive pulmonary disease: a systematic review, meta-analysis and meta-regression. Gen Hosp Psychiatry. 2011 ; 33: 217-223
9. Eisner MD, Blanc PD, Yelin EH, et al. Influence of anxiety on health outcomes in COPD. Thorax. 2010 ; 65: 229-234
10. Soriano JB, Maier WC, Egger P, et al. Recent trends in physician diagnosed COPD in women and men in the UK. Thorax. 2000 ; 55: 789-794
11. Goodridge D, Lawson J, Duggleby W, et al. Health care utilization of patients with chronic obstructive pulmonary disease and lung cancer in the last 12 months of life. Respir Med. 2008 ; 102: 885-891
12. Rocker GM, Dodek PM, Heyland DK. Toward optimal end-of-life care for patients with advanced chronic obstructive pulmonary disease: insights from a multicentre study. Can Respir J. 2008 ; 15: 249-254
13. Partridge MR, Khatri A, Sutton L, et al. Palliative care services for those with chronic lung disease. Chron Respir Dis. 2009 ; 6: 13-17
14. Chronic obstructive pulmonary disease: management of chronic obstructive pulmonary disease in adults in primary and secondary care. London: National Institute for Health and Clinical Excellence ; 2010 :
15. End of life care strategy - promoting high quality care for all adults at the end of life. London: Department of Health ; 2008 :
16. A fresh approach: palliative and end of life care for people with chronic respiratory disease. London: National Council for Palliative Care ; 2008 :
17. Consultation on a strategy for services for chronic obstructive pulmonary disease (COPD) in England. London: Department of Health ; 2010 :
18. Buxton KL, Stone RA, Buckingham RJ, et al. Current and planned palliative care service provision for chronic obstructive pulmonary disease patients in 239 UK hospital units: comparison with the gold standards framework. Palliat Med. 2010 ; 24: 480-485
19. Van Manen M Researching lived experience: human science for an action sensitive pedagogy. 2 nd ed.Ontario, Canada: The Althouse Press, 1990. Ontario, Canada: The Althouse Press ; 1990 :
20. Richardson J. Health promotion in palliative care: the patients' perception of therapeutic interaction with the palliative nurse in the primary care setting. J Adv Nurs. 2002 ; 40: 432-440
21. Goldschmidt D, Schmidt L, Krasnik A, et al. Expectations to and evaluation of a palliative home-care team as seen by patients and carers. Support Care Cancer. 2006 ; 14: 1232-1240
22. Rabow MW, Schanche K, Petersen J, et al. Patient perceptions of an outpatient palliative care intervention: "It had been on my mind before, but I did not know how to start talking about death". J Pain Symptom Manage. 2003 ; 26: 1010-1015
23. Mok E, Chiu PC. Nurse-patient relationships in palliative care. J Adv Nurs. 2004 ; 48: 475-483
24. Ingleton C. The views of patients and carers on one palliative care service. Int J Palliat Nurs. 1999 ; 5: 187-195
25. McKinlay ME. Within the circle of care: patient experiences of receiving palliative care. J Palliat Care. 2001 ; 17: 22-29
26. Johnston B, Smith LON. Nurses' and patients' perceptions of expert palliative nursing care. J Adv Nurs. 2006 ; 54: 700-709
27. Fisher C, O'Connor M, Abel K. The role of palliative care in supporting patients: a therapeutic community space. Int J Palliat Nurs. 2008 ; 14: 117-125
28. Larkin JPG, Dierckx de Casterle B, Schotsmans P. Transition towards end of life in palliative care: an exploration of its meaning for advanced cancer patients in Europe. J Palliat Care. 2007 ; 23: 69-79
29. McKechnie R, MacLeod R, Keeling S. Facing uncertainty: the lived experience of palliative care. Palliat Support Care. 2007 ; 5: 367-376
30. Chapple A, Ziebland S, McPherson A. The specialist palliative care nurse: a qualitative study of the patients' perspective. Int J Nurs Stud. 2006 ; 43: 1011-1022
31. Kennett C, Payne M. Understanding why palliative care patients 'like day care' and 'getting out'. J Palliat Care. 2005 ; 21: 292-298
32. Seamark DA, Blake SAD, 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: 619-625
33. 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: 310-313
34. 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
35. Hall S, Legault A, Cote J. Dying means suffocating: perceptions of people living with severe COPD facing the end of life. Int J Palliat Nurs. 2010 ; 16: 451-457
36. Gardiner C, Gott M, Small N, et al. Living with advanced chronic obstructive pulmonary disease: patients concerns regarding death and dying. Palliat Med. 2009 ; 23: 691-697
37. Ek K, Ternestedt BM. Living with chronic obstructive pulmonary disease at the end of life: a phenomenological study. J Adv Nurs. 2008 ; 62: 470-478
38. Hasson F, Spence A, Waldron M, et al. I can not get a breath: experiences of living with advanced chronic obstructive pulmonary disease. Int J Palliat Nurs. 2008 ; 14: 526-531
39. Fraser DD, Kee CC, Minick P. Living with chronic obstructive pulmonary disease: insiders' perspectives. J Adv Nurs. 2006 ; 55: 550-558
40. Gullick J, Stainton MC. Living with chronic obstructive pulmonary disease: developing conscious body management in a shrinking life-world. J Adv Nurs. 2008 ; 64: 605-614
41. Habraken JM, Pols J, Bindels JPG, et al. The silence of patients with end-stage COPD: a qualitative study. Br J Gen Pract. 2008 ; 58: 844-849
42. McMillan BC, Hill BP, Mossey S. Chronic obstructive pulmonary disease as disability: dilemma stories. Qual Health Res. 2011 ; 21: 187-198
43. Guthrie SJ, Hill KM, Muers ME. Living with severe COPD. A qualitative exploration of the experience of patients in Leeds. Respir Med. 2001 ; 95: 196-204
44. O'Neill ES. Illness representations and coping of women with chronic obstructive pulmonary disease: a pilot study. Heart Lung. 2002 ; 31: 295-302
45. Barnett M. Chronic obstructive pulmonary disease: a phenomenological study of patients' experiences. J Clin Nurs. 2005 ; 14: 805-812
46. Goodwin DM, Higginson IJ, Myers K, et al. What is palliative day care? A patient perspective of five UK services. Support Care Cancer. 2002 ; 10: 556-562
47. Vernooij-Dassen MLS, Olde Rikkert M. Quality of care in frail older people: the balance between receiving and giving. BMJ. 2011 ; 342: 1062-1063
48. Kernohan WG, Hasson F, Hutchinson P, et al. Patient satisfaction with hospice day care. Support Care Cancer. 2006 ; 14: 462-468
49. Low J, Perry R, Wilkinson S. A qualitative evaluation of the impact of palliative care day services: the experiences of patients, informal carers, day unit managers and volunteer staff. Palliat Med. 2005 ; 19: 65-70