Pre-print (also known as author final version).

1 Marie Curie Cancer Care. Marie Curie Cancer Care
Launches ‘Supporting the Choice to Die at Home’ campaign,
2004. http://www.mariecurie.org.uk/aboutus/news/
news_archive/news_archive_2004/marie_curie_cancer_
care+launches_supporting_the_choice_to_die_at_home_
campaign.htm (site accessed 8 June 2007).
2 BMJ. ‘What is your idea of a good death? Results of an
on-line survey’, 2003. http://bmj.bmjjournals.com/misc/
good_death.shtml (site accessed 9 May 2005)
3 Higginson, IJ, Sen-Gupta, GJA. Place of care in
advanced cancer: a qualitative systematic literature
review of patient preferences. J Palliat Med 2000; 3:
287–300.
4 Ellershaw, J, Ward, C. Care of the dying patient: the last
hours or days of life. BMJ 2003; 326: 30–34.
5 House of Commons; Health Committee. Palliative Care.
Fourth Report of Session 2003-04. London: House of
Commons, 2004.
6 Higginson, IJ, Finlay, IG, Goodwin, DM, et al. Is there
evidence that palliative care teams alter end-of-life
experiences of patients and their caregivers? J Pain Symptom
Manage 2003; 25: 150–168.
7 Taylor, D, Carter, S. Valuing Choice-Dying at Home: A
Case for the More Equitable Provision of High Quality
Support for People who Wish to Die at Home. An Economic
and Social Policy Opinion Commissioned by
Marie Curie Cancer Care. London: Marie Curie Cancer
Care, 2004.
8 Gomes, B, Higginson, IJ. Factors influencing death at
home in terminally ill patients with cancer: systematic
review. BMJ 2006; 332: 515–518.
9 Harding, R, Higginson, IJ. What is the best way to help
caregivers in cancer and palliative care? A systematic literature
review of interventions and their effectiveness.
Palliat Med 2003; 17: 63–74.
10 Hudson, P. A critical review of supportive interventions
for family caregivers of patients with palliative-stage cancer.
J Psychosocial Oncology 2003; 22: 77–92.
11 Hughes, PM, Ingleton, MC, Noble, B, Clark, D. Providing
cancer and palliative care in rural areas: a review of
patient and caregiver needs. J Palliat Care 2004; 20: 44–
49.
12 Hawker, S, Payne, S, Kerr, C, Hardey, M, Powell, J.
Appraising the evidence: reviewing disparate data systematically.
Qual Health Res 2002; 12: 1284–1299.
13 Aldred, H, Gott, M, Gariballa, S. Advanced heart failure:
impact on older patients and informal carers. Journal
of Advanced Nursing 2005; 49: 116–124.
14 Aranda, S, Yates, P, Edwards, H, Nash, R, Skerman, H,
McCarthy, A. Barriers to effective cancer pain management:
a survey of Australian family caregivers. Eur J
Cancer Care (Engl) 2004; 13: 336–343.
15 Beach, DL. Caregiver discourse: perceptions of illnessrelated
dialogue. Hosp J 1995; 10: 13–25.
16 Berry, P-E, Ward, S-E. Barriers to pain management in
hospice: a study of family caregivers. Hosp J 1995; 10: 19.
17 Cameron, JI, Shin, JL, Williams, D, Stewart, DE. A brief
problem-solving intervention for family caregivers to
individuals with advanced cancer. J Psychosom Res
2004; 57: 137–143.
18 Caron, C, Griffith, D, Arcand, M. Decision making at
the end of life in dementia: how family caregivers perceive
their interactions with health care providers in long term
care settings. Journal of Applied Gerontology 2005; 24:
231–247.
19 Clayton, J, Butow, P, Tattersal, M. The needs of terminally
ill cancer patients versus those of caregivers for
information regarding prognosis and end of life issues.
Cancer 2005; 103: 1957–1964.
20 Exley, C, Field, D, Jones, L, Stokes, T. Palliative care in
the community for cancer and end-stage cardiorespiratory
disease: the views of patients, lay-caregivers and
health care professionals. Palliat Med 2005; 19: 76–83.
21 Field, D, Douglas, C, Jagger, C, Dand, P. Terminal illness:
views of patients and their lay caregivers. Palliat
Med 1995; 9: 45–54.
22 Fine, PG, Busch, MA. Characterization of breakthrough
pain by hospice patients and their caregivers. J Pain
Symptom Manage 1998; 16: 179–183.
23 Fukui, S. Information needs and the related variables of
Japanese family caregivers of terminally ill cancer
patients. Nurs Health Sci 2004; 6: 29–36.
24 Gagnon, P, Charbonneau, C, Allard, P, Soulard, C,
Dumont, S, Fillion, L. Delirium in advanced cancer: a
psychoeducational intervention for family caregivers. J
Palliat Care 2002; 18: 253–261.
25 Harding, R, Higginson, IJ, Leam, C, et al. Evaluation of
a short-term group intervention for informal caregivers of
patients attending a home palliative care service. J Pain
Symptom Manage 2004; 27: 396–408.
26 Harrington, V, Lackey, NR, Gates, MF. Needs of caregivers
of clinic and hospice cancer patients. Cancer Nurs
1996; 19: 118–125.
27 Hauser, J, Chih-Hung, C, Alpert, H, Baldwin, D,
Emanuel, E, Emanuel, L. Who’s caring for whom? Differing
perspectives between seriously ill patients and their
family caregivers. Am J Hospice Palliat Med 2006; 23:
105–112.
28 Hudson, P, Aranda, S, McMurray, N. Intervention
development for enhanced lay palliative caregiver support
– the use of focus groups. Eur J Cancer Care
(Engl) 2002; 11: 262–270.
29 Jansma, FF, Schure, LM, de Jong, BM. Support requirements
for caregivers of patients with palliative cancer.
Patient Educ Couns 2005; 58: 182–126.
30 Kasanowski, M. Commitment to the end: family caregivers
medication management of symptoms in patients
with cancer near death. Dissertation, Boston, MA, 1998.
31 Keefe, F, Ahles, T, Sulton, L, et al. Partner guided cancer
pain management at the end of life: a preliminary study. J
Pain Symptom Manage 2005; 29: 263–272.
32 Kessler, D, Peters, T, Lee, L, Parr, S. Social class and
access to specialist palliative care services. Palliat Med
2005; 19: 105–110.
33 Koffman, J, Higginson, IJ. Accounts of caregivers’ satisfaction
with health care at the end of life: a comparison of
first generation black Caribbeans and white patients with
advanced disease. Palliat Med 2001; 15: 337–345.
34 Lecouturier, J, Jacoby, A, Bradshaw, C, Lovel, T,
Eccles, M. Lay caregivers’ satisfaction with community
palliative care: results of a postal survey. South Tyneside
MAAG Palliative Care Study Group. Palliat Med 1999;
13: 275–283.
35 Lin, CC. Barriers to the analgesic management of cancer
pain: a comparison of attitudes of Taiwanese patients and
their family caregivers. Pain 2000; 88: 7–14.
36 Lin, CC, Lai, YL, Lo, EC. Life-extending therapies
among patients with advanced cancer: patients’ levels of
pain and family caregivers’ concerns about pain relief.
Cancer Nurs 2001; 24: 430–435.
37 Lin, CC, Wang, P, Lai, YL, Lin, CL, Tsai, SL, Chen, TT.
Identifying attitudinal barriers to family management of
cancer pain in palliative care in Taiwan. Palliat Med
2000; 14: 463–470.
38 Lin, WC, Tsao, CJ. Information needs of family caregivers
of terminal cancer patients in Taiwan. Am J Hosp
Palliat Care 2004; 21: 438–444.
39 Lobchuk, MM, Vorauer, JD. Family caregiver
perspective-taking and accuracy in estimating cancer
patient symptom experiences. Soc Sci Med 2003; 57:
2379–2384.
40 Mazanec, P, Bartel, J. Family caregiver perspectives of
pain management. Cancer Pract 2002; 10 Suppl 1: S66–
S69.
41 Milberg, A, Strang, P, Carlsson, M, Borjesson, S.
Advanced palliative home care: next-of-kin’s perspective.
J Palliat Med 2003; 6: 749–756.
42 Seamark, DA, Williams, S, Hall, M, Lawrence, CJ,
Gilbert, J. Dying from cancer in community hospitals
or a hospice: closest lay caregivers’ perceptions. Br J
Gen Pract 1998; 48: 1317–1321.
43 Spruyt, O. Community-based palliative care for Bangladeshi
patients in east London. Accounts of bereaved caregivers.
Palliat Med 1999; 13: 119–129.
44 Terry, W, Olson, L, Wilss, L, Boulton-Lewis, G. Experience
of dying: concerns of dying patients and of carers.
Intern Med J 2006; 36: 338–346.
45 Waldrop, D, Kramer, B, Skretny, JA, Milch, RA,
Finn, W. Final transitions: family caregiving at the end
of life. J Palliat Med 2005; 8: 623–638.
46 Ward, SE, Berry, PE, Misiewicz, H. Concerns about
analgesics among patients and family caregivers in a hospice
setting. Res Nurs Health 1996; 19: 205–211.
47 Grande, GE, Todd, CJ. Why are trials in palliative care
so difficult? Palliat Med 2000; 14: 69–74.
48 Higginson, IJ. It would be NICE to have more evidence?
Palliat Med 2004; 18: 85–86.
49 Mays, N, Pope, C. Qualitative research in health care:
assessing quality in qualitative research. BMJ 2000; 320:
50–52.
50 Faull, C. The context and principles of palliative care. In
Faull, C, Carter, Y, Daniels, G, The Handbook of Palliative
Care. Oxford: Blackwell, 2005: 1–20.
51 Murray, SA, Kendall, M, Boyd, K, Sheikh, A. Illness
trajectories in palliative care. BMJ 2005; 330: 1007–1011.