Restricted accessResearch articleFirst published online 2020-12
The preferences of patients with chronic obstructive pulmonary disease are to discuss palliative care plans with familiar respiratory clinicians,but to delay conversations until their condition deteriorates: A study guided by interpretative phenomenological analysis
Chronic obstructive pulmonary disease is associated with an uncertain trajectory, which challenges prognostication and means that most patients are not involved in advance care planning and do not receive palliative and end-of-life care.
Aim:
To understand the preferences of patients with chronic obstructive pulmonary disease for discussions about palliative and advance care planning with clinicians.
Design:
Semi-structured interviews were conducted with patients with chronic obstructive pulmonary disease. Data analysis was guided by principles of interpretative phenomenological analysis, of which symbolic interactionism and interpretation principles were employed throughout.
Setting/Participants:
A total of 33 British patients with chronic obstructive pulmonary disease at different stages of their disease trajectory were recruited.
Results:
Patients preferred to discuss palliative care with clinicians they perceived had greater levels of competency and authority in care and with whom they had an established relationship, usually a specialist. Patients favoured large amounts of information about treatments and care, but reported a lack of illness-related information and problems accessing appointments with clinicians. Consequently, patients deferred discussions to the future, usually once their condition had deteriorated significantly or planned to wait for clinicians to initiate conversations. This was not rooted in patient preferences, but related to clinicians’ lack of time, absence of an established relationship and belief that appointments were for managing current symptoms, exacerbations and disease factors rather than future care and preferences.
Conclusion:
Different perceptions, competing priorities and service rationing inhibit patients from initiating early discussions with clinicians, so palliative care conversations should be initiated by respiratory-expert clinicians who know the patient well. After a sudden deterioration in the patient’s condition may be a suitable time.
National Institute for Health and Care Excellence (NICE). Chronic obstructive pulmonary disease – quality standard (ed Department of Health). Manchester: NICE, 2011.
2.
Department of Health (ed.). An outcomes strategy for Chronic Obstructive Pulmonary Disease (COPD) and Asthma in England. Department of Health, London, 2011, 56 pp.
World Health Organization (WHO). Palliative care for older people: better practices. Copenhagen: WHO, 2011.
8.
CurtisJR.Palliative and end-of-life care for patients with severe COPD. Eur Respir J2008; 32(3): 796–803.
9.
GoreJMBrophyCJGreenstoneMA.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. Thorax2000; 55(12): 1000–1006.
10.
CurtisJ.Palliative care for patients with chronic obstructive pulmonary disease. Respir Med: COPD Update2006; 2: 86–90.
11.
FitzsimonsDMullanDWilsonJS, et al. The challenge of patients’ unmet palliative care needs in the final stages of chronic illness. Palliat Med2007; 21(4): 313–322.
12.
GardenerACEwingGFarquharM.Enabling patients with advanced chronic obstructive pulmonary disease to identify and express their support needs to health care professionals: a qualitative study to develop a tool. Palliat Med2019; 33(6): 663–675.
13.
JohnstonBCooleCNarayanasamyMJ.An end-of-life care nurse service for people with COPD and heart failure: stakeholders’ experiences. Int J Palliat Nurs2016; 22(11): 549–559.
14.
DonnellyWJ.The SUPPORT project and improving care for seriously III patients. JAMA1996; 275(16): 1229–1230.
15.
ClaessensMTLynnJZhongZS, et al. Dying with lung cancer or chronic obstructive pulmonary disease: insights from SUPPORT. J Am Geriatr Soc2000; 48(5): S146–S153.
16.
JorgensonASidebottomACRichardsH, et al. A description of inpatient palliative care actions for patients with acute heart failure. Am J Hosp Palliat Care2016; 33(9): 863–870.
17.
National Institute for Health and Care Excellence (NICE). Opioids for pain relief in palliative care overview (ed Department of Health). Manchester: NICE, 2005.
18.
FordDWKochKARayDE, et al. Palliative and end-of-life care in lung cancer: diagnosis and management of lung cancer, 3rd ed: American College of chest physicians evidence-based clinical practice guidelines. Chest2013; 143(5, Suppl.): e498S–e512S.
19.
The National Council for Palliative Care (NCPC). Commissioning guidance for specialist palliative care: helping to deliver commissioning objectives. Southampton: NCPC, 2012.
20.
National Institute for Health and Care Excellence (NICE). End of life care for adults – quality standard (ed Department of Health). Manchester: NICE, 2017.
21.
TavaresNJarrettNHuntK, et al. Palliative and end-of-life care conversations in COPD: a systematic literature review. ERJ Open Res2017; 3(2): 00068-2016.
22.
SullivanKEHébertPCLoganJ, et al. What do physicians tell patients with end-stage COPD about intubation and mechanical ventilation. Chest1996; 109(1): 258–264.
23.
McNeelyPDHébertPCDalesRE, et al. Deciding about mechanical ventilation in end-stage chronic obstructive pulmonary disease: how respirologists perceive their role. CMAJ1997; 156(2): 177–183.
24.
CurtisJR.Communicating with patients and their families about advance care planning and end-of-life care. Respir Care2000; 45(11): 1385–1394; discussion 1394.
25.
GasparCAlfarrobaSTeloL, et al. End-of-life care in COPD: a survey carried out with Portuguese pulmonologists. Rev Port Pneumol2014; 20(3): 123–130.
26.
JabbarianLJZwakmanMvan der HeideA, et al. Advance care planning for patients with chronic respiratory diseases: a systematic review of preferences and practices. Thorax2018; 73(3): 222–230.
27.
Siu-Hung WongJGottwaldM. Advance care planning discussions in chronic obstructive pulmonary disease: a critical review. J Palliat Care2015; 31(4): 258–264.
28.
GrayJRGroveSKSutherlandS.Burns and Grove’s the practice of nursing research: appraisal, synthesis and generation of evidence, 8th ed.St. Louis, MO: Elsevier, 2017.
29.
ReinkeLFFeemsterLCMcDowellJ, et al. The long term impact of an end-of-life communication intervention among veterans with COPD. Heart Lung2017; 46(1): 30–34.
30.
VestboJHurdSSAgustíAGet al. Global strategy for the diagnosis, management, and prevention of chronic obstructive pulmonary disease. Am J Respir Crit Care Med2013; 187(4): 347–365.
31.
SmithJA.Qualitative psychology: a practical guide to research methods, 3rd ed.London: SAGE, 2015.
32.
LarkinMThompsonA.Interpretative phenomenological analysis. In: Andrew ThompsonDH (ed.) Qualitative research methods in mental health and psychotherapy – a guide for students and practitioners. Oxford: John Wiley & Sons, 2012, pp. 99–116.
33.
SmithJA.Beyond the divide between cognition and discourse: using interpretative phenomenological analysis in health psychology. Psychol Heal1996; 11(2): 261–271.
34.
SmithJA.Evaluating the contribution of interpretative phenomenological analysis. Heal Psychol Rev2011; 5(1): 9–27.
35.
SmithJAFlowerPLarkinM.Interpretative phenomenological analysis: theory, method and research. London: SAGE, 2009.
36.
PietkiewiczISmithJ.A practical guide to using Interpretative Phenomenological Analysis in qualitative research psychology. Czasopismo Psychologiczne Psychological Journal 2014; 20(1): 7–14.
37.
TongACraigJSainsburyP.Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care2007; 19(6): 349–357.
38.
JanssenDJSpruitMAScholsJM, et al. A call for high-quality advance care planning in outpatients with severe COPD or chronic heart failure. CHEST2011; 139(5): 1081–1088.
39.
LeungJMUdrisEMUmanJ, et al. The effect of end-of-life discussions on perceived quality of care and health status among patients with COPD. Chest2011; 142(1): 128–133.
40.
SeamarkDBlakeSSeamarkC, et al. Is hospitalisation for COPD an opportunity for advance care planning? A qualitative study. Prim Care Respir J2012; 21(3): 261–266.
41.
HofmannJCWengerNSDavisRB, et al. Patient preferences for communication with physicians about end-of-life decisions. SUPPORT Investigators. Study to understand prognoses and preference for outcomes and risks of treatment. Ann Intern Med1997; 127(1): 1–12.
KnauftENielsenELEngelbergRA, et al. Barriers and facilitators to end-of-life care communication for patients with COPD. Chest2005; 127(6): 2188–2196.
46.
AslaksonRAWyskielRThorntonI, et al. Nurse-perceived barriers to effective communication regarding prognosis and optimal end-of-life care for surgical ICU patients: a qualitative exploration. J Palliat Med2012; 15(8): 910–915.
47.
DugdaleDCEpsteinRPantilatSZ.Time and the patient-physician relationship. J Gen Int Med1999; 14(Suppl. 1): S34–S40.
48.
EricksonSMRockwernBKoltovM, et al. Putting patients first by reducing administrative tasks in health care: a position paper of the American College of Physicians. Ann Intern Med2017; 166(9): 659–661.
49.
HjortdahlPLaerumE.Continuity of care in general practice: effect on patient satisfaction. BMJ1992; 304(6837): 1287–1290.
50.
GuthrieBWykeS.Personal continuity and access in UK general practice: a qualitative study of general practitioners’ and patients’ perceptions of when and how they matter. BMC Fam Pract2006; 7: 11.
51.
AdlerRVasiliadisABickellN.The relationship between continuity and patient satisfaction: a systematic review. Fam Pract2010; 27(2): 171–178.
52.
BarkerISteventonADeenySR.Association between continuity of care in general practice and hospital admissions for ambulatory care sensitive conditions: cross sectional study of routinely collected, person level data. BMJ2017; 356: j84.
53.
RobertsNJGhiassiRPartridgeMR.Health literacy in COPD. Int J Chron Obstruct Pulm Dis2008; 3(4): 499–507.
54.
GauronskaiteRZemnickieneSLiustrickyteI, et al. How COPD patients understand their disease and what are their future expectations?Euro Resp J2016; 48(Suppl. 60): PA4342.
55.
PrescottEVestboJ.Socioeconomic status and chronic obstructive pulmonary disease. Thorax1999; 54(8): 737–741.
56.
Joseph-WilliamsNElwynGEdwardsA.Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Educ Couns2014; 94(3): 291–309.
57.
LaueJMelbyeHRisørMB.Self-treatment of acute exacerbations of chronic obstructive pulmonary disease requires more than symptom recognition – a qualitative study of COPD patients’ perspectives on self-treatment. BMC Fam Pract2017; 18(1): 8.
58.
SimonJ.Attitudes of Hungarian asthmatic and COPD patients affecting disease control: empirical research based on Health Belief Model. Front Pharmacol2013; 4: 135.
59.
SayREThomsonR.The importance of patient preferences in treatment decisions – challenges for doctors. BMJ2003; 327(7414): 542–545.
60.
JohnsonJLCampbellACBowersM, et al. Understanding the social consequences of chronic obstructive pulmonary disease. Proc Am Thorac Soc2007; 4(8): 680–682.
61.
BergerBEKapellaMCLarsonJL.The experience of stigma in chronic obstructive pulmonary disease. West J Nurs Res2010; 33(7): 916–932.
62.
GardenerACEwingGKuhnI, et al. Support needs of patients with COPD: a systematic literature search and narrative review. Int J Chron Obstruct Pulmon Dis2018; 13: 1021–1035.
63.
GiacominiMDeJeanDSimeonovD, et al. Experiences of living and dying with COPD: a systematic review and synthesis of the qualitative empirical literature. Ont Health Technol Assess Ser2012; 12(13): 1–47.
64.
BrownAJShenMJRamondettaLM, et al. Does death anxiety affect end-of-life care discussions. Int J Gynecol Cancer2014; 24(8): 1521–1526.
65.
ShermanDWNormanRMcSherryCB.A comparison of death anxiety and quality of life of patients with advanced cancer or AIDS and their family caregivers. J Assoc Nurses AIDS Care2010; 21(2): 99–112.
66.
CellaDFTrossS.Death anxiety in cancer survival: a preliminary cross-validation study. J Pers Assess1987; 51(3): 451–461.
67.
WackerMEJörresRAKarchA, et al. Assessing health-related quality of life in COPD: comparing generic and disease-specific instruments with focus on comorbidities. BMC Pulm Med2016; 16(1): 70.
68.
ZamzamMAAzabNYEl WahshRA, et al. Quality of life in COPD patients. Egyptian J Chest Dis Tuber2012; 61(4): 281–289.
69.
HardinKAMeyersFLouieS.Integrating palliative care in severe chronic obstructive lung disease. COPD2008; 5(4): 207–220.
70.
ShipmanCGyselsMWhiteP, et al. Improving generalist end of life care: national consultation with practitioners, commissioners, academics, and service user groups. BMJ2008; 337: a1720.
71.
GoffSLEneanyaNDFeinbergR, et al. Advance care planning: a qualitative study of dialysis patients and families. Clin J Am Soc Nephrol2015; 10(3): 390–400.
72.
HalliwellJMulcahyPBuetowS, et al. GP discussion of prognosis with patients with severe chronic obstructive pulmonary disease: a qualitative study. Br J Gen Pract2004; 54(509): 904–908.
73.
SundhJJansonCLisspersK, et al. The Dyspnoea, Obstruction, Smoking, Exacerbation (DOSE) index is predictive of mortality in COPD. Prim Care Respir J2012; 21(3): 295–301.
74.
PowrieDJ.The BODE index: a new grading system in COPD. Thorax2004; 59(5): 427.
75.
EstebanCQuintanaJMMorazaJ, et al. BODE-Index vs HADO-score in chronic obstructive pulmonary disease: which one to use in general practice?BMC Med2010; 8: 28.
76.
den Herder-van der EerdenMHasselaarJPayneS, et al. How continuity of care is experienced within the context of integrated palliative care: a qualitative study with patients and family caregivers in five European countries. Palliat Med2017; 31(10): 946–955.
77.
ScheerensCChambaereKPardonK, et al. Development of a complex intervention for early integration of palliative home care into standard care for end-stage COPD patients: a phase 0-I study. PLoS ONE2018; 13(9): e0203326.
78.
SioutaNClementPAertgeertsB, et al. Professionals’ perceptions and current practices of integrated palliative care in chronic heart failure and chronic obstructive pulmonary disease: a qualitative study in Belgium. BMC Palliat Care2018; 17(1): 103.
79.
PinnockHKendallMMurraySA, et al. Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study. BMJ: Br Med J2011; 342: d142.
80.
HarbNFosterJMDoblerCC.Patient-perceived treatment burden of chronic obstructive pulmonary disease. Int J Chron Obstruct Pulmon Dis2017; 12: 1641–1652.
81.
BerezaBGTroelsgaard NielsenAValgardssonS, et al. Patient preferences in severe COPD and asthma: a comprehensive literature review. Int J Chron Obstruct Pulmon Dis2015; 10: 739–744.
82.
JohanssonGMushnikovVBäckströmT, et al. Exacerbations and healthcare resource utilization among COPD patients in a Swedish registry-based nation-wide study. BMC Pulm Med2018; 18(1): 17.
Supplementary Material
Please find the following supplemental material available below.
For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.
For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.
