GoreJM, BrophyCJ, GreenstoneMA. 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.
2.
SolanoJP, GomesB, HigginsonIJ. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage2006; 31 (1):58–69.
3.
LacasseY, BrooksD, GoldsteinRS. Trends in the epidemiology of COPD in Canada, 1980 to 1995. COPD and Rehabilitation Committee of the Canadian Thoracic Society. Chest1999; 116 (2):306–313.
4.
Canadian Institute for Health Information, Canadian Lung Association, Health Canada, Statistics Canada.Respiratory Disease in Canada. Ottawa, Ontario: Authors, 2001.
5.
MurrayCJ, LopezAD. Alternative projections of mortality and disability by cause 1990–2020: global burden of disease study. Lancet1997; 349: 1498–1504.
6.
ElofssonL, ÖhlénJ.Meanings of being old and living with chronic obstructive pulmonary disease. Palliat Med2004; 18 (7):611–618.
7.
LynnJ, ElyEW, ZhongZ, LandrumMcNiff K, DawsonNV, ConnorsA, . Living and dying with chronic obstructive pulmonary disease. J Am Geriatr Soc2000; 48(5 suppl): S91–S100.
8.
ParnellH.Respiratory disease: Caring for the carers of chronic lung disease sufferers in the community. J Community Nurs2001; 15(5): 4,6,8.
9.
GuthrieSJ, HillKM, MuersME. Living with severe COPD. A qualitative exploration of the experience of patients in Leeds. Respir Med2001; 95 (3):196–204.
10.
SeamarkDA, BlakeSD, SeamarkCJ, HalpinDM. Living with severe chronic obstructive pulmonary disease (COPD): Perceptions of patients and their carers. An interpretative phenomenological analysis. Palliat Med2004; 18 (7):619–625.
11.
GoodridgeD.People with chronic obstructive pulmonary disease at the end of life: a review of the literature. Int J Palliat Nurs2006; 12 (8):390–396.
12.
BlacklerL, MooneyC, JonesC.Palliative care in the management of chronic obstructive pulmonary disease. Br J Nurs (Mark Allen Publishing)2004; 13 (9):518–521.
13.
ElkingtonH, WhiteP, Addington-HallJ, HiggsR, PettinariC.The last year of life of COPD: a qualitative study of symptoms and services. Respir Med2004; 98 (5):439–445.
14.
ElkingtonH, WhiteP, Addington-HallJ, HiggsR, EdmondsP.The healthcare needs of chronic obstructive pulmonary disease patients in the last year of life. Palliat Med2005; 19 (6):485–491.
15.
JoS, BrazilK, LohfeldL, WillisonK.Caregiving at the end of life: perspectives from spousal caregivers and care recipients. Palliat Support Care2007; 5: 11–17.
16.
EdmondsP, KarlsenS, KhanS, Addington-HallJ.A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer. Palliat Med2001; 15 (4):287–295.
17.
ArnoldR, RanchorAV, KoeterGH, deJongsteMJL, SandermanR.Consequences of chronic obstructive pulmonary disease and chronic heart failure: The relationship between objective and subjective health. Soc Sci Med2005; 61: 2144–2154.
18.
PeruzzaS, SergiG, VianelloA, PisentC, TiozzoF, ManzanA, . Chronic obstructive pulmonary disease (COPD) in elderly subjects: impact on functional status and quality of life. Respir Med2003; 97: 612–617.
19.
KohlerCL, FishL, GreenePG. The relationship of perceived self-efficacy to quality of life in chronic obstructive pulmonary disease. Health Psychol2002; 21 (6):610–614.
20.
AuDH, UdrisEM, FihnSD, McDonellMB, CurtisJR. Differences in health care utilization at the end of life among patients with chronic obstructive pulmonary disease and patients with lung cancer. Arch Intern Med2006; 166 (3):326–331.
21.
SkilbeckJ, MottL, PageH, SmithD, Hjelmeland-AhmedzaiS, ClarkD.Palliative care in chronic obstructive airways disease: a needs assessment. Palliat Med1998; 12 (4):245–254.
22.
BaileyPH. The dyspnea-anxiety-dyspnea cycle—COPD patients’ stories of breathlessness: “It's scary/when you can't breathe”. Qual Health Res2004; 14 (6):760–778.
23.
JonesI, KirbyA, OrmistonP, LoombaY, ChanK, RoutJ, . The needs of patients dying of chronic obstructive pulmonary disease in the community. Fam Pract2004; 21 (3):310–313.
24.
LangaK, FendrickA, FlahertyK, MartinezF, KabetoM, SaintS.Informal caregiving for chronic lung disease among older Americans. Chest2002; 122 (6):2197–2203.
25.
O'DonnellDE, AaronS, BourbeauJ, HernandezP, MarciniukD, BaiterM, . COPD recommendations—state of the art compendium: Canadian thoracic society recommendations for the management of chronic obstructive pulmonary disease. Can Respirol J2004; 11 (suppl B): 7B–59B.
26.
CurtisJR, RockerG.Chronic obstructive pulmonary disease. In: BrueraE, HigginsonIJ, RipamontiC, von GuntenCF (eds). Pallative Medicine in Respirology. London: Hodder Arnold; 2006, pp. 935–943.
27.
HeylandD, DodekP, RockerG, GrollD, GafniA, PichoraD.What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ2006; 174 (4):627–633.
28.
RockerG, HeylandD, GrollD, DodekP, KutsogianisD, LazarN.Meeting the needs of patients with COPD: a multicenter study. Am J Respir Crit Care Med2004; 169: A50.
29.
LynnJ.Living long in fragile health: the new demographics shape end-of-life care. Hastings Ctr Rep2005; Spec No: S14–S18.
30.
CannuscioC, JonesC, KawachiI, ColditzG, BerkmanL, RimmE.Reverberations of family illness: a longitudinal assessment of informal caregiving and mental health status in the nurses’ health study. Am J Pub Health2002; 92 (8):1305–1311.
31.
BrazilK, BedardM, KruegerP, AbernathyT, LohfeldL, WillisonK.Service preferences among family caregivers of the terminally ill. J Palliat Med2005; 8 (1):69–78.
32.
StajduharKI. Examining the perspectives of family members involved in the delivery of palliative care at home. J Palliat Care2003; 19 (1):27–35.
33.
FaisonK, FariaSH, FrankD.Caregivers of chronically ill elderly: perceived burden. J Community Health Nurs1999; 16 (4):243–253.
34.
KasuyaR, Polgar-BaileyP, TakeuchiR.Caregiver burden and burnout. Postgrad Med2000; 108 (7):119–123.
35.
BainbridgeHTJ, CreganC, KulikCT. The effect of multiple roles on caregiver stress outcomes. J Applied Psychol2006; 91 (2):490–497.
36.
DoranTDF, WhiteheadM.Health of young and elderly informal carers: Analysis of UK census data. BMJ2003; 327 (7428):1388.
37.
HardingR, HigginsonI.What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliat Med2003; 17: 63–74.
38.
HudsonP.A conceptual model and key variables for guiding supportive interventions for family caregivers of people receiving palliative care. Palliat Support Care2003; 1: 353–365.
39.
StajduharKI, DaviesB.Variations and factors influencing family members’ decisions for palliative home care. Palliat Med2005; 19: 21–32.
40.
BergsD.“The hidden client”—women caring for husbands with COPD: their experience of quality of life. J Clin Nurs2002; 11 (5):613–621.
41.
WaldropDP, KramerBJ, SkretnyJA, MilchRA, FinnW.Final transitions: family caregiving at the end of life. J Palliat Med2005; 8 (3):623–638.
42.
OhmanM, SoderbergS.The experiences of close relatives living with a person with serious chronic illness. Qual Health Res2004; 14 (3):396–410.
43.
VitalianoP, KatonW.Special Report: Stress. Effects of stress on family caregivers: Recognition and management. Psychiatric Times2006; 23 (7):24.
44.
ProotI, Abu-SaadH, CrebolderH, GoldsteenM, LukerKA, WiddershovenG.Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity. Scand J Caring Sci2003; 17 (2):113–121.
45.
LeeH, KimDK, KimJH. Stress in caregivers of demented people in Korea—a modification of Pearlin and colleagues’ stress model. Int J Geriatr Psychiatry2006; 21: 784–791.
46.
YatesME, TennstedtS, ChangBH. Contributors to and mediators of psychological well-being for informal caregivers. J Gerontol1999; 54B(1): P12–P22.
47.
BookwalaJ, SchulzR.A comparison of primary stressors, secondary stressors, and depressive symptoms between elderly caregiving husbands and wives: The Caregiver Health Effects Study. Psychol Aging2000; 15 (4):607–616.
48.
HardingR, HigginsonI.Working with ambivalence: informal caregivers of patients at the end of life. Support Care Cancer2001; 9: 642–645.
49.
HogstelMO, CurryLC, WalkerC.Caring for older adults: The benefits of informal family caregiving. J Theory Construction & Testing2005; 9 (2):55–60.
50.
BaileyPH. Death stories: acute exacerbation of chronic obstructive pulmonary disease. Qual Health Res2001; 11 (3):322–338.
51.
BoothS, SilvesterS, ToddC.Breathlessness in cancer and chronic obstructive pulmonary disease: using a qualitative approach to describe the experience of patients and carers. Palliat Support Care2003; 1: 337–344.
52.
FriedT, BradleyE, O'LearyJ, ByersA.Unmet desire for caregiver-patient communication and increased caregiver burden. J Am Geriatr Soc2005; 53 (1):59–65.
53.
LowG, GutmanG.Couples’ ratings of chronic obstructive pulmonary disease patients’ quality of life. Clin Nurs Res2003; 12 (1):28–48.
54.
MurraySA, BoydK, SheikhA.Palliative care in chronic illness. BMJ2005; 330 (7492):611–612.
55.
CurtisJR, EngelbergRA, WenrichMD, AuDH. Communication about palliative care for patients with chronic obstructive pulmonary disease. J Palliat Care2005; 21 (3):157–164.
56.
GoldsteinNE, MorrsionRS. The intersection between geriatrics and palliative care: a call for a new research agenda. J Am Geriatr Soc2005; 53: 1593–1598.
57.
BoothS, FarquharM, GyselsM, BauseweinC, HigginsonIJ. The impact of a breathlessness intervention service (BIS) on the lives of patients with intractable dyspnea: a qualitative phase 1 study. Palliat Support Care2006; 4: 287–293.
58.
AndershedB.Relatives in end-of-life care—Part 1: A systematic review of the literature the five last years, January 1999–February 2004. J Clin Nurs2006; 15 (9):1158–1169.
59.
VarkeyB.Palliative care for end-stage lung disease patients. Clin Pulmonary Med2003; 10 (5):269–277.