An opportunity to care? preliminary insights from a qualitative study on advance care planning in advanced COPD

Progress in Palliative Care

Volumn 19, Issue 5, 2011, Pages 243-253

  Simpson, A Catherine ^a  

^a QUEEN ELIZABETH II HEALTH SCIENCES CENTRE   (Canada)

Author keywords

Advance care planning; Communication; COPD; Prognostic uncertainty; Qualitative research

Indexed keywords

ADULT; ARTICLE; CHRONIC OBSTRUCTIVE LUNG DISEASE; CLINICAL ARTICLE; CONTROLLED STUDY; DECISION MAKING; FEMALE; HOPE; HUMAN; MALE; PATIENT CARE; PROGNOSIS; QUALITATIVE RESEARCH; TERMINAL CARE; TREATMENT PLANNING;

EID: 80053442935     PISSN: 09699260     EISSN: 1743291X     Source Type: Journal    
DOI: 10.1179/1743291X11Y.0000000007     Document Type: Article

References (55)

1. Buist AS, McBurnie MA, Vollmer WM, Gillespie S, Burney P, Mannino DM, et al. International variation in the prevalence of COPD (The BOLD Study): a population-based prevalence study. Lancet 2007;370(9589):741-50.
2. Mannino DM, Buist AS. Global burden of COPD: risk factors, prevalence, and future trends. Lancet 2007;370(9589): 765-73.
3. Gysels M, Bausewein C, Higginson I. Experiences of breathlessness: a systematic review of the qualitative literature. Palliat Support Care 2007;5:281-302.
4. Rocker GM, Sinuff T, Horton R, Hernandez P. Advanced chronic obstructive pulmonary disease: innovative approaches to palliation. J Palliat Med 2007;10(3):783-97.
5. Yohannes AM. Palliative care provision for patients with chronic obstructive pulmonary disease. Health Qual Life Outcomes 2007;5(1):17-22.
6. Simpson AC, Rocker GM. Advanced chronic obstructive pulmonary disease: impact on informal-givers. J Palliat Care 2008;24(1):49-54.
7. Simpson AC, Young J, Donahue MM, Rocker GM. A day at a time: caregiving on the edge in advanced COPD. Int J COPD 2010;5:1-11.
8. Solano JP, Gomes B, Higginson IJ. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage 2006;31(1):58-69.
9. Curtis JR, Engleberg, R, Young JP, Vig LK, Reinke LF, Wenrich MD, et al. An approach to understanding the interaction of hope and desire for explicit prognostic information among individuals with severe chronic obstructive pulmonary disease or advanced cancer. J Palliat Med 2008;11:610-20.
10. Gardiner, C, Gott, M, Small N, Payne S, Seamark, D, Barnes S, et al. Living with advanced chronic obstructive pulmonary disease: patients concerns regarding death and dying. Palliat Med [serial on the Internet] 2009;0(00).
11. Gott M, Gardiner C, Small N, Payne S, Seamark D, Barnes S, et al. Barriers to advance care planning in chronic obstructive pulmonary disease. Palliat Med 2009;23(7):642-8.
12. Pinnock H, Kendall M, Murray SA, Worth A, Levack, P, Porter M, et al. Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study. BMJ [serial on the Internet] 2011;342.
13. Spence A, Hasson F, Waldron M, Kernohan, WG, McLaughlin, D, Watson B, et al. Professionals delivering palliative care to people with COPD: qualitative study. Palliat Med 2009;23: 126-31.
14. Davison, SN, Simpson, C, Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ 2006;333(7574).
15. Curtis JR, Engelberg RA, Wenrich MD, Au DH. Communication about palliative care for patients with chronic obstructive pulmonary disease. J Palliat Care 2005;21(3): 157-64.
16. Goodridge D. People with chronic obstructive pulmonary disease at the end of life: a review of the literature. Int J Palliat Nurs 2006;12(8):390-6.
17. Larson DG, Tobin DR. End-of-life conversations: evolving practice and theory. JAMA 2000;284(12):1573-8.
18. Tulsky JA, Fischer GS, Rose MA, Arnold RM. Opening the black box: how do physicians communicate about advance directives? Ann Intern Med 1998;129:441-9.
19. Murray SA, Boyd K, Sheikh A. Palliative care in chronic illness. BMJ 2005;330(7492):611-2.
20. Murray SA, Pinnock H, Sheikh A. Palliative care for people with COPD: we need to meet the challenge. Prim Care Respir J 2006;15:362-4.
21. Seamark DA, Seamark CJ, Halpin DM. Palliative care in chronic obstructive pulmonary disease: a review for clinicians. J R Soc Med 2007;100:225-33.
22. Back AL, Young JP, McCown E, Engelberg RA, Vig EK, Reinke LF, et al. Abandonment at the end of life from patient, caregiver, nurse, and physician perspectives: loss of continuity and closure. Arch Intern Med 2009;169(5):474-9.
23. Crawford A. Respiratory practitioners' experience of end-of-life discussions in COPD. Br J Nurs 2010;19(18):1164-9.
24. Simpson AC, Rocker GM. Advanced chronic obstructive pulmonary disease: rethinking models of care. Quat J Math 2008;101(9):697-704.
25. Curtis JR. Palliative care for patients with chronic obstructive pulmonary disease. Respir Med 2006;2:86-90.
26. Heyland D, Groll D, Rocker G, Dodek P, et al. End-of-life care in acute care hospitals in Canada: a quality finish? J Palliat Care 2005;21(3):142-50.
27. Knauft E, Nielsen EL, Engelberg RA, Patrick DL, Curtis JR. Barriers and facilitators to end-of-life care communication for patients with COPD. Chest 2005;127(6):2188-96.
28. Barnes K, Jones L, Tookman A, King M. Acceptability of an advance care planning interview schedule: a focus group study. Palliat Med 2007;21:23-8.
29. Emanuel EJ, Fairclough DL, Wolfe P, Emanuel LL. Talking with terminally ill patients and their caregivers about death, dying, and bereavement. Arch Intern Med 2004;164: 1999-2004.
30. Hawkins NA, Ditto PH, Danks JH, Smucker WD. Micromanaging death: process preferences, values, and goals in end-of-life medical decision making. Gerontologist 2005; 45(1):107-17.
31. Heyland D, Dodek P, Rocker G, Groll D, Gafni A, Pichora D. What matters most in end-of-life care: perceptions of seriously ill patients and their family members. Can Med Assoc J 2006; 174(4):627-33.
32. Heyland DK, Allan DE, Rocker G, Dodek P, Pichora D, Gafni A. Discussing prognosis with patients and their families near the end of life: impact on satisfaction with end-of-life care. Open Med 2009;3(2):71-80.
33. Stewart M. Towards a global definition of patient centred care: the patient should be the judge of patient centred care. BMJ 2001;322(7284):444-5.
34. Barnard D. Advance care planning is not about 'Getting it Right'. J Palliat Med 2002;5(4):475-82.
35. Jordens C, Little M, Kerridge I, McPhee J. From advance directives to advance care planning: current legal status, ethical rationales and a new research agenda. Intern Med J 2005;35(9):563-6.
36. Lynn J, Goldstein NE. Advance care planning for fatal chronic illness: avoiding commonplace errors and unwarranted suffering. Ann Intern Med 2003;138(10):812-8.
37. Hickman SE, Hammes BJ, Moss AH, Tolle SW. Hope for the future: achieving the original intent of advance directives. Hastings Center Report 2005(Special Report 35):S26-30.
38. Tulsky JA. Beyond advance directives: importance of communication skills at the end of life. JAMA 2005;294(3): 359-65.
39. Weiner JS, Cole SA. Three principles to improve clinician communication for advance care planning: overcoming emotional, cognitive, and skill barriers. J Palliat Med 2004;7(6):817-29.
40. Thorne S, Interpretive description. In: Morse J, (ed.) Walnut creek. California: Left Coast Press, Inc. 2008.
41. Hines SC, Coping with uncertainties in advance care planning. J Commun 2001;51(3):498-513.
42. Attride-Stirling J. Thematic networks: an analytical tool for qualititative research. Qual Res 2001;1(3):385-405.
43. Beauchamp TL, Childress JF, Principles of biomedical ethics. New York: Oxford University Press, Inc.; 2001.
44. Bergum V, Dossetor J. Relational ethics type contributor the full book meaning of respect Hagerstown, MD University Publishing Group 2005.
45. Gadow S. Ethical narratives in practice. Nurs Sci Q 1996 9(1):8-9.
46. Sulmasy DP, Snyder L. Substituted interests and best judgments: an integrated model of surrogate decision making. JAMA 2010;304(17):1946-7.
47. Hines SC, Glover JJ, Babrow AS, Holley JL, Badzek LA, Moss AH. Improving advance care planning by accommodating family preferences. J Palliat Med 2001;4(4):481-9.
48. Wagner GJ, Riopelle D, Steckart J, Lorenz KA, Rosenfeld KE. Provider communication and patient understanding of life-limiting illness and their relationship to patient communication of treatment preferences. J Pain Symptom Manage 2010;39(3): 527-34.
49. Kreps GL, O'Hair D, Clowers M. The influences of human communication on health outcomes. Am Behav Sci 1994; 38(2):248-56.
50. Sharf BF. Physician-patient communication as interpersonal rhetoric: a narrative approach. Health Commun 1990;2(4): 217-31.
51. Sharf BF, Vanderford ML. Illness narratives and the social construction of health. In: Thompson TL, Dorsey AM, Miller KI, Parrott R, (eds.) Handbook of health communication. Mahwah, NJ: Lawrence Erlbaum Associates, Inc.; 2003. p. 9-34.
52. Trenholm A, Jensen A. Interpersonal communication. 5th ed. New York, NY: Oxford University Press, Inc.; 2004.
53. Leach MJ. Rapport: a key to treatment success. Complement Ther Clin Pract 2005;11:262-5.
54. Goodridge D, Marciniuk DD, Brooks D, van Dam A, Hutchinson S, Bailey P, et al. End-of-life care for persons with advanced chronic obstructive pulmonary disease: report of a national interdisciplinary consensus meeting. Can Respir J 2009;16(5):e51-e3.
55. O'Donnell DE, Aaron S, Bourbeau J, Hernandez P, Marciniuk D, Balter M, et al. COPD RECOMMENDATIONS - State of the art compendium: Canadian Thoracic Society recommendations for the management of chronic obstructive pulmonary disease. Can Respirology J 2004;11(Suppl B):7B-59B.