Evidence on home palliative care: Charting past, present, and future at the cicely saunders institute - WHO collaborating centre for palliative care, policy and rehabilitation

Progress in Palliative Care

Volumn 21, Issue 4, 2013, Pages 204-213

  Gomes, Barbara ^a   Higginson, Irene J ^a  

^a KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

Health services research; Home care services; Hospice care; Palliative care; Patient preference

Indexed keywords

ARTICLE; CAREGIVER; CLINICAL EFFECTIVENESS; COST EFFECTIVENESS ANALYSIS; DEATH; HEALTH CARE DELIVERY; HEALTH CARE FACILITY; HEALTH CARE POLICY; HEALTH SURVEY; HOME CARE; HOME PALLIATIVE CARE; HUMAN; INTERSTITIAL LUNG DISEASE; META ANALYSIS (TOPIC); MULTIPLE SCLEROSIS; PATIENT ADVOCACY; PATIENT PREFERENCE; PHASE 2 CLINICAL TRIAL (TOPIC); RANDOMIZED CONTROLLED TRIAL (TOPIC); SYSTEMATIC REVIEW (TOPIC); TELECONSULTATION; TERMINAL CARE; WORLD HEALTH ORGANIZATION;

EID: 84881628530     PISSN: 09699260     EISSN: 1743291X     Source Type: Journal    
DOI: 10.1179/1743291X13Y.0000000065     Document Type: Article

References (49)

1. Parkes CM. Terminal care: evaluation of an advisory domiciliary service at St Christopher's Hospice. Postgrad Med J 1980;56: 685-9.
2. Saunders C. The 'medicalization of death'. Eur J Cancer Care 1994;3:148.
3. Flory J, Yinong YX, Gurol I, Levinsky N, Ash A, Emanuel E. Place of death: U.S. trends since 1980. Health Aff (Millwood) 2004;23:194-200.
4. Wilson DM, Truman CD, Thomas R, Fainsinger R, Kovacs Burns K, Froggatt K, et al. The rapidly changing location of death in Canada, 1994-2004. Soc Sci Med 2009;68:1752-8.
5. Teno JM, Gozalo PL, Bynum JP, Leland NE, Miller SC, Morden NE, et al. Change in end-of-life care for medicare beneficiaries: site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA 2013;309:470-7.
6. Gomes B, Calanzani N, Higginson IJ. Reversal of the British trends in place of death: time series analysis 2004-2010. Palliat Med 2012;26:102-7.
7. Gao W, Ho YK, Verne J, Glickman M, Higginson IJ, project GUC. Changing patterns in place of cancer death in England: a population-based study. PLoS Med 2013;10:e1001410.
8. Instituto Nacional de Estatistica (INE). Deaths of residents in Portugal by place of death, gender, age and region (NUTS2001 and NUTS2002) - 2010 [Óbitos de residentes em Portugal por local do óbito, sexo, idade e geografia (NUTS2001 e NUTS2002) - 2010]. Lisbon: Instituto Nacional de Estatistica; 2012.
9. Lazenby M, Ma T, Moffat HJ, Funk M, Knobf MT, McCorkle R. Influences on place of death in Botswana. Palliat Support Care 2010;8:177-85.
10. Addington-Hall J, McCarthy M. Regional study of care for the dying: methods and sample characteristics. Palliat Med 1995;9: 27-35.
11. Grande GE, Addington-Hall J,Todd CJ. Place of death and access to home care services: are certain patient groups at a disadvantage? Soc Sci Med 1998;47:565-79.
12. Gomes B, Higginson IJ. Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ 2006;332:515-21.
13. Burt J, Shipman C, Richardson A, Ream E, Addington-Hall J. The experiences of older adults in the community dying from cancer and non-cancer causes: a national survey of bereaved relatives. Age Ageing 2010;39:86-91.
14. Radbruch L, Payne S, the EAPC Board of Directors. White paper on standards and norms for hospice and palliative care in Europe: part 2. Eur J Palliat Care 2010;17:22-33.
15. The National Council for Palliative Care. National Survey of Patient Activity Data for specialist palliative care services. MDS Full Report for the year 2010-2011: National End of Life Care Intelligence Network; 2012.
16. Higginson IJ, Astin P, Dolan S. Where do cancer patients die? Ten-year trends in the place of death of cancer patients in England. Palliat Med 1998;12:353-63.
17. Higginson IJ, Jarman B, Astin P, Dolan S. Do social factors affect where patients die: an analysis of 10 years of cancer deaths in England. J Public Health Med 1999;21:22-8.
18. Koffman J, Higginson IJ. Dying to be home? Preferred location of death of first-generation black Caribbean and native-born white patients in the United Kingdom. J Palliat Med 2004;7: 628-36.
19. Gomes B, Higginson IJ. Where people die (1974-2030): past trends, future projections and implications for care. Palliat Med 2008;22:33-41.
20. Harding R, Higginson IJ, Leam C, Donaldson N, Pearce A, George R, et al. Evaluation of a short-term group intervention for informal carers of patients attending a home palliative care service. J Pain Symptom Manage 2004;27:396-408.
21. Gomes B, McCrone P, Hall S, Koffman J, Higginson IJ. Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study. BMC Cancer 2010;10:400.
22. Bajwah S, Higginson I, Wells A, Koffman J, Ross JR, Birring SS, et al. Developing and evaluating a Hospital2Home Palliative Care Service for patients with advanced progressive idiopathic fibrotic interstitial lung disease: Phase 0-II. Palliat Med 2012; 26:545 (Abstract: P208).
23. Lowther K, Simms V, Selman L, Sherr L, Gwyther L, Kariuki H, et al. Treatment outcomes in palliative care: the TOPCare study. A mixed methods phase III randomised controlled trial to assess the effectiveness of a nurse-led palliative care intervention for HIV positive patients on antiretroviral therapy. BMC Infect Dis 2012;12:288.
24. Higginson IJ, Sen-Gupta GJ. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med 2000;3:287-300.
25. Gomes B, Calanzani N, Gysels M, Hall S, Higginson IJ. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat Care 2013;12:7.
26. Murtagh F, Bausewein C, Petkova H, Sleeman KE, Dodd RH, Gysels M, et al. Understanding place of death for patients with non malignant conditions: a systematic literature review. London: Published on the National Institute for Health Research Service Delivery and Organisation Programme website, 2012: [Accessed 2013 April 21]. Available from: http://www.netscc.ac.uk/hsdr/files/project/SDO_FR_08-1813-257_V01.pdf.
27. Harding R, Higginson IJ; PRISMA. PRISMA: a pan-European co-ordinating action to advance the science in end-of-life cancer care. Eur J Cancer 2010;46:1493-501.
28. Gomes B, Higginson IJ, Calanzani N, Cohen J, Deliens L, Daveson BA, et al. Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Ann Oncol 2012;23:2006-15.
29. Higginson IJ, Sarmento V, Calanzani N, Benalia H, Gomes B. Dying at home - is it better: what we have learned and where are we going? Palliat Med 2013 May 22. [Epub ahead of print].
30. Department of Health. End of life care strategy - promoting high quality care of all adults at the end of life. London: Department of Health, 2008.
31. Pivodic L, Higginson I, Sarmento V, Gomes B. Standardize records of place of death. Nature 2013;495:449.
32. Simon ST, Gomes B, Koeskeroglu P, Higginson IJ, Bausewein C. Population, mortality and place of death in Germany (1950-2050) - implications for end-of-life care in the future. Public Health 2012;126:937-46.
33. Gomes B, Cohen J, Deliens L, Higginson IJ. International trends in circumstances of death and dying. In: Gott M, Ingleton C, (eds.) Living with ageing and dying palliative and end of life care for older people. Oxford: Oxford University Press; 2011. p. 3-18.
34. Higginson IJ, Wilkinson S. Marie Curie nurses: enabling patients with cancer to die at home. Br J Community Nurs 2002;7:240-4.
35. Costantini M, Higginson IJ, Boni L, Orengo MA, Garrone E, Henriquet F, et al. Effect of a palliative home care team on hospital admissions among patients with advanced cancer. Palliat Med 2003;17:315-21.
36. Higginson IJ, McCrone P, Hart SR, Burman R, Silber E, Edmonds PM. Is short-term palliative care cost-effective in multiple sclerosis? A randomized phase II trial. J Pain Symptom Manage 2009;38:816-26.
37. Higginson IJ, Vivat B, Silber E, Saleem T, Burman R, Hart S, et al. Study protocol: delayed intervention randomised controlled trial within Medical Research Council (MRC) framework to assess the effectiveness of a new palliative care service. BMC Palliat Care 2006;5:7.
38. Higginson IJ, Hart S, Burman R, Silber E, Saleem T, Edmonds P. Randomised controlled trial of a new palliative care service: compliance, recruitment and completeness of follow-up. BMC Palliat Care 2008;7:7.
39. Edmonds P, Hart S, Wei G, Vivat B, Burman R, Silber E, et al. Palliative care for people severely affected by multiple sclerosis: evaluation of a novel palliative care service. Mult Scler 2010; 16:627-36.
40. Higginson IJ, Costantini M, Silber E, Burman R, Edmonds P. Evaluation of a new model of short-term palliative care for people severely affected with multiple sclerosis: a randomised fast-track trial to test timing of referral and how long the effect is maintained. Postgrad Med J 2011;87:769-75.
41. Grande GE, Todd CJ, Barclay SI, Farquhar MC. Does hospital at home for palliative care facilitate death at home? Randomised controlled trial. BMJ 1999;319:1472-5.
42. Jordhoy MS, Fayers P, Saltnes T, Ahlner-Elmqvist M, Jannert M, Kaasa S. A palliative-care intervention and death at home: a cluster randomised trial. Lancet 2000;356:888-93.
43. Brumley R, Enguidanos S, Jamison P, Seitz R, Morgenstern N, Saito S, et al. Increased satisfaction with care and lower costs: results of a randomized trial of in-home palliative care. J Am Geriatr Soc 2007;55:993-1000.
44. Bakitas M, Lyons KD, Hegel MT, Balan S, Brokaw FC, Seville J, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA 2009;302:741-9.
45. Shepperd S, Wee B, Straus SE. Hospital at home: home-based end of life care. Cochrane Database Syst Rev 2011;7: pCD009231.
46. Gomes B, Calanzani N, Curiale V, McCrone P, Higginson IJ. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev 2013;6: pCD007760.
47. Gysels MH, Higginson IJ. Caring for a person in advanced illness and suffering from breathlessness at home: threats and resources. Palliat Support Care 2009;7:153-62.
48. Shipman C, Addington-Hall J, Thompson M, Pearce A, Barclay S, Cox I, et al. Building bridges in palliative care: evaluating a GP Facilitator programme. Palliat Med 2003;17:621-7.
49. Higginson IJ. Priorities and preferences for end of life care in England, Wales and Scotland. The Cicely Saunders Foundation, Scottish Partnership for Palliative Care and the National Council for Hospice and Specialist Palliative Care Services; 2003.