What is the methodological rigour of palliative care research in long-term care facilities in Europe? A systematic review

Abstract

Background:

The European population is rapidly ageing, resulting in increasing numbers of older people dying in long-term care facilities. There is an urgent need for palliative care in long-term care facilities.

Aim:

The aim of this study was to systematically review the literature on palliative care research in long-term care facilities in Europe with respect to how the palliative care populations were described, and to determine the study designs and patient outcome measures utilized.

Methods:

We used a systematic literature review. The search strategy included searches of PubMed, Embase and PsychINFO databases from 2000 up to May 2010, using search terms related to ‘palliative care’ and ‘end-of-life care’ combined with search terms related to ‘long-term care’. We selected articles that reported studies on patient outcome data of palliative care populations residing in a long-term care facility in Europe.

Results:

This review demonstrated that there are few, and mainly descriptive, European studies on palliative care research in long-term care facilities. Fourteen studies were retained in the review, of which eight were conducted in the Netherlands. None of these studies described their study population specifically as a palliative care or end-of-life care population. Retrospective and prospective designs were applied using many different measurement instruments. Most instruments were proxy ratings. Symptom (management) was the most frequently measured outcome.

Conclusion:

To improve future research on palliative care in long-term care facilities, agreement on what can be considered as palliative care in long-term care facilities and, the availability of well-developed and tested measurement instruments is needed to provide more evidence, and to make future research more comparable.

Keywords

Long-term care outcome assessment palliative care review systematic research design

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References

Carone

Costello

. Can Europe afford to grow old? Int Monetary Fund Finance Dev Mag 2006; 43: 28–31.

Anderson

Hussey

. Health and population aging: A multinational comparison. New york: The Commonwealth Fund; October 1999.

Gomes

Higginson

. Where people die (1974–2030): past trends, future projections and implications for care. Palliat Med 2008; 22: 33–41.

Davies

Higginson

(eds) Better palliative care for older people. Geneva: World Health Organization, 2004. 2010.

World Health Organization. ‘Ageing and Life Course, http://www.who.int/ageing/en/ (17 March 2011).

West

. A guide to palliative care service development: a population based approach. Palliat Care Aust 2005; 1–48.

Bilsen

Vander

Broeckaert

Mortier

Deliens

. Changes in medical end-of-life practices during the legalization process of euthanasia in Belgium. Soc Sci Med 2007; 65: 803–808.

Cohen

Bilsen

Addington-Hall

Lofmark

Miccinesi

Kaasa

. Population-based study of dying in hospital in six European countries. Palliat Med 2008; 22: 702–710.

World Health Organization. ‘WHO Definition of Palliative Care’, http://www.who.int/cancer/palliative/definition/en/ (20 December 2010).

10.

Matthews

Dening

. Prevalence of dementia in institutional care. Lancet 2002; 360: 225–226.

11.

Brandt

Ooms

Deliens

van der

Ribbe

. The last two days of life of nursing home patients–a nationwide study on causes of death and burdensome symptoms in The Netherlands. Palliat Med 2006; 20: 533–540.

12.

Cartwright

. Nursing homes and assisted living facilities as places for dying. Annu Rev Nurs Res 2002; 20: 231–264.

13.

Oliver

Porock

Zweig

. End-of-life care in U.S. nursing homes: a review of the evidence. J Am Med Dir Assoc 2004; 5: 147–155.

14.

Froggatt

Wilson

Justice

MacAdam

Leibovici

Kinch

. End-of-life care in long-term care settings for older people: a literature review. Int J Older People Nurs 2006; 1: 45–50.

15.

Higginson

Hart

Koffman

Selman

Harding

. Needs assessments in palliative care: an appraisal of definitions and approaches used. J Pain Symptom Manage 2007; 33: 500–505.

16.

Harding

Higginson

. PRISMA: a pan-European co-ordinating action to advance the science in end-of-life cancer care. Eur J Canc 2010; 46: 1493–1501.

17.

Ribbe

Ljunggren

Steel

Topinkova

Hawes

Ikegami

. Nursing homes in 10 nations: a comparison between countries and settings. Age Ageing 1997; 26(Suppl 2): 3–12.

18.

Saysell

Routley

. Pilot project of an intermediate palliative care unit within a registered care home. Int J Palliat Nurs 2004; 10: 393–398.

19.

Van Iersel

Timmerman

Mullie

. Introduction of a pain scale for palliative care patients with cognitive impairment. Int J Palliat Nurs 2006; 12: 54–59.

20.

Achterberg

Pot

Scherder

Ribbe

. Pain in the nursing home: Assessment and treatment on different types of care wards. J Pain Symptom Manage 2007; 34: 480–487.

21.

Onwuteaka-Philipsen

Pasman

Kruit

van der

Ribbe

van der Wal

. Withholding or withdrawing artificial administration of food and fluids in nursing-home patients. Age Ageing 2001; 30: 459–465.

22.

Scocco

Fantoni

Rapattoni

de Girolamo

Pavan

. Death ideas, suicidal thoughts, and plans among nursing home residents. J Geriatr Psychiatr Neurol 2009; 22: 141–148.

23.

Veerbeek

van Zuylen

Swart

van der Maas

van der

. The last 3 days of life in three different care settings in The Netherlands. Support Care Canc 2007; 15: 1117–1123.

24.

Brandt

Deliens

van der Steen

Ooms

Ribbe

van der

. The last days of life of nursing home patients with and without dementia assessed with the palliative care outcome scale. Palliat Med 2005; 19: 334–342.

25.

van der Steen

Gijsberts

Knol

Deliens

Muller

. Ratings of symptoms and comfort in dementia patients at the end of life: comparison of nurses and families. Palliat Med 2009; 23: 317–324.

26.

Jordhoy

Saltvedt

Fayers

Loge

Ahlner-Elmqvist

Kaasa

. Which cancer patients die in nursing homes? Quality of life, medical and sociodemographic characteristics. Palliat Med 2003; 17: 433–444.

27.

Pautex

Berger

Chatelain

Herrmann

Zulian

. Symptom assessment in elderly cancer patients receiving palliative care. Crit Rev Oncol Hematol 2003; 47: 281–286.

28.

Di Giulio

Toscani

Villani

Brunelli

Gentile

Spadin

. Dying with advanced dementia in long-term care geriatric institutions: a retrospective study. J Palliat Med 2008; 11: 1023–1028.

29.

Pautex

Herrmann

Le Lous

Ghedira

Zulian

Michon

. Symptom relief in the last week of life: Is dementia always a limiting factor? J Am Geriatr Soc 2007; 55: 1316–1317.

30.

van der Steen

Pasman

Ribbe

van der

Onwuteaka-Philipsen

. Discomfort in dementia patients dying from pneumonia and its relief by antibiotics. Scand J Infect Dis 2009; 41: 143–151.

31.

van der Steen

Ooms

Mehr

van der Wal

Ribbe

. Severe dementia and adverse outcomes of nursing home-acquired pneumonia: evidence for mediation by functional and pathophysiological decline. J Am Geriatr Soc 2002; 50: 439–448.

32.

van der Steen

Kruse

Ooms

Ribbe

van der Wal

Heintz

. Treatment of nursing home residents with dementia and lower respiratory tract infection in the United States and the Netherlands: an ocean apart. J Am Geriatr Soc 2004; 52: 691–699.

33.

EAARP. European leadership study: European experiences with long-term care France, the Netherlands, Norway, and the United Kingdom. EAARP, 2006.

34.

Ministry of Welfare, Health and Cultural Affairs. Health care in the Netherlands, Fact Sheet V-7-E. The Hague: The Netherlands, 2003.

35.

Ribbe

. Care for the elderly: the role of the nursing home in the Dutch health care system. Int Psychogeriatr 1993; 5: 213–222.

36.

Hoek

Ribbe

Hertogh

van der Vleuten

. The role of the specialist physician in nursing homes: the Netherlands’ experience. Int J Geriatr Psychiatr 2003; 18: 244–249.

37.

Grimes

Schulz

. Descriptive studies: what they can and cannot do. Lancet 2002; 359: 145–149.

38.

Evans

. Hierarchy of evidence: a framework for ranking evidence evaluating healthcare interventions. J Clin Nurs 2003; 12: 77–84.

39.

Muir Gray

. Evidence-based healthcare. New York: Churchill Livingstone, 1997.

40.

Mulrow

Oxman

. Cochrane collaboration handbook. Oxford: The Cochrane Library, The Cochrane Collaboration, 1997.

41.

Sackett

Richardson

Rosenberg

Haynes

. Evidence Based medicine: how to practice and teach EBM. New York: Churchill Livingstone, 1997.

42.

Mathews

Finch

. Using the Liverpool Care Pathway in a nursing home. Nurs Times 2006; 102: 34–35.

43.

Hewison

Badger

Clifford

Thomas

. Delivering ’Gold Standards’ in end-of-life care in care homes: a question of teamwork? J Clin Nurs 2009; 18: 1756–1765.

44.

Froggatt

Payne

. A survey of end-of-life care in care homes: issues of definition and practice. Health Soc Care Community 2006; 14: 341–348.

45.

Ferrell

Connor

Cordes

Dahlin

Fine

Hutton

. The national agenda for quality palliative care: the National Consensus Project and the National Quality Forum. J Pain Symptom Manage 2007; 33: 737–744.

46.

Ferrell

. Overview of the domains of variables relevant to end-of-life care. J Palliat Med 2005; 8 Suppl 1: S22–S29.

47.

Higginson

Priest

McCarthy

. Are bereaved family members a valid proxy for a patient’s assessment of dying? Soc Sci Med 1994; 38: 553–557.

48.

Kristjanson

Nikoletti

Porock

Smith

Lobchuk

Pedler

. Congruence between patients’ and family caregivers’ perceptions of symptom distress in patients with terminal cancer. J Palliat Care 1998; 14: 24–32.

49.

Nekolaichuk

Bruera

Spachynski

MacEachern

Hanson

Maguire

. A comparison of patient and proxy symptom assessments in advanced cancer patients. Palliat Med 1999; 13: 311–323.

50.

Nekolaichuk

Maguire

Suarez-Almazor

Rogers

Bruera

. Assessing the reliability of patient, nurse, and family caregiver symptom ratings in hospitalized advanced cancer patients. J Clin Oncol 1999; 17: 3621–3630.

51.

Zloklikovits

Andritsch

Frohlich

Verebes

Dietmaier

Samonigg

. Assessing symptoms of terminally-ill patients by different raters: a prospective study. Palliat Support Care 2005; 3: 87–98.

52.

Pautex

Curiale

Pfisterer

Rexach

Ribbe

Van Den

. A common definition of geriatric palliative medicine. J Am Geriatr Soc 2010; 58: 790–791.