Measuring the quality of dying and quality of care when dying in long-term care settings: A qualitative content analysis of available instruments

Journal of Pain and Symptom Management

Volumn 42, Issue 6, 2011, Pages 852-863

  Van Soest Poortvliet, Mirjam C ^a   Van Der Steen, Jenny T ^a   Zimmerman, Sheryl ^b   Cohen, Lauren W ^b   Munn, Jean ^c   Achterberg, Wilco P ^d   Ribbe, Miel W ^a   De Vet, Henrica C W ^a  

^a VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^b UNIVERSITY OF NORTH CAROLINA   (United States)

^c FLORIDA STATE UNIVERSITY   (United States)

^d LEIDEN UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

assisted living; dementia; end of life; measurement instruments; nursing homes; palliative care; quality of care; Quality of dying; residential care

Indexed keywords

CLINICAL ASSESSMENT TOOL; CONTENT ANALYSIS; DYING; END OF LIFE IN DEMENTIA COMFORT ASSESSMENT IN DYING; END OF LIFE IN DEMENTIA SATISFACTION WITH CARE; END OF LIFE IN DEMENTIA SYMPTOM MANAGEMENT; FAMILY ASSESSMENT OF TREATMENT AT THE END OF LIFE SHORT VERSION; FAMILY PERCEPTION OF CARE SCALE; FAMILY PERCEPTION OF PHYSICIAN FAMILY CAREGIVER COMMUNICATION; HEALTH CARE QUALITY; HUMAN; LONG TERM CARE; MINI SUFFERING STATE EXAMINATION; NURSING HOME; PALLIATIVE CARE OUTCOME SCALE; PALLIATIVE THERAPY; PATIENT CARE; PATIENT SATISFACTION; REVIEW; TERMINAL CARE; TOOLKIT OF INSTRUMENTS TO MEASURE END OF LIFE CARE AFTER DEATH BEREAVED FAMILY MEMBER INTERVIEW;

EID: 82755187245     PISSN: 08853924     EISSN: 18736513     Source Type: Journal    
DOI: 10.1016/j.jpainsymman.2011.02.018     Document Type: Article

References (58)

1. L.F.J. Velden van der, A.L. Francke, L. Hingstman, and D.L. Willems Dying from cancer or other chronic diseases in the Netherlands: ten-year trends derived from death certificate data BMC Palliat Care 8 2009 4
2. P.D. Sloane, S. Zimmerman, C.W. Williams, and L. Hanson Dying with dementia in long-term care Gerontologist 48 2008 741 751
3. Center for Gerontology and Healthcare Research. Facts on dying: policy relevant data on care at the end of life. 2005. Available from www.chcr.brown.edu/dying/factsondying.htm. Accessed March 25, 2010.
4. J. Kayser-Jones The experience of dying: an ethnographic nursing home study Gerontologist 42 2002 11 19 (Pubitemid 35231151)
5. E. Davies, and I.J. Higginson Better palliative care for older people 2004 World Health Organization Copenhagen, Denmark
6. M. Mezey, N.N. Dubler, E. Mitty, and A.A. Brody What impact do setting and transitions have on the quality of life at the end of life and the quality of the dying process? Gerontologist 42 2002 54 67 (Pubitemid 35231157)
7. S.T. Pinderhughes, and R.S. Morrison Evidence-based approach to management of fever in patients with end-stage dementia J Palliat Med 6 2003 351 354 (Pubitemid 36807915)
8. D. Parker-Oliver, D. Porock, and S. Zweig End-of-life care in U.S. nursing homes: a review of the evidence J Am Med Dir Assoc 6 2005 S21 S30
9. E.L. Sampson, C.W. Ritchie, R. Lai, P.W. Raven, and M.R. Blanchard A systematic review of the scientific evidence for the efficacy of a palliative care approach in advanced dementia Int Psychogeriatr 17 2005 31 40 (Pubitemid 40593645)
10. G.A. Sachs, J.W. Shega, and D. Cox-Hayley Barriers to excellent end-of-life care for patients with dementia J Gen Intern Med 19 2004 1057 1063 (Pubitemid 39431144)
11. Z.V. Blasi, A.C. Hurley, and L. Volicer End-of-life care in dementia: a review of problems, prospects, and solutions in practice J Am Med Dir Assoc 3 2002 57 65 (Pubitemid 34256808)
12. P. Ketti Helping families with end-of-life care in Alzheimer's disease J Clin Psychiatry 68 2006 445 450
13. R.E. Thomas, D. Wilson, and S. Sheps A literature review of randomized controlled trials of the organization of care at the end of life Can J Aging 25 2006 271 293 (Pubitemid 44600138)
14. J.T. Steen van der Dying with dementia: what we know after a decade with research J Alzheimers Dis 22 2010 37 55
15. L. Volicer, A.C. Hurley, and Z.V. Blasi Scales for evaluation of end-of-life care in dementia Alzheimer Dis Assoc Disord 15 2001 194 200 (Pubitemid 33117035)
16. D.J. Casarett, A. Pickerd, and A. Bailey A nationwide VA palliative care quality measure: the family assessment of treatment at the end of life J Palliat Med 11 2008 68 75
17. J.U. Vohra, K. Brazil, S. Hanna, and J. Abelson Family perceptions of end-of-life care in long-term care facilities J Pall Care 20 2004 297 302 (Pubitemid 40137573)
18. H. Biola, P.D. Sloane, and C.S. Williams Physician communication with family caregivers of long-term care residents at the end of life J Am Geriatr Soc 55 2007 846 856 (Pubitemid 47011038)
19. Steel RK. InterRAI PC - palliative care. 2007. Available from http://www.interrai.org. Accessed August 26, 2010.
20. K. Steel, B.E. Fries, and J.N. Morris Users guide for the InterRAI PC 2000 InterRAI Washington, DC
21. B.Z. Aminoff, E. Purits, S. Noy, and A. Adunsky Measuring the suffering of end-stage dementia: reliability and validity of the mini-suffering state examination Arch Gerontol Geriatr 38 2004 123 130 (Pubitemid 38096304)
22. J. Hearn, and I.J. Higginson Development and validation of a core outcome measure for palliative care: Palliative Care Outcome Scale Qual Health Care 8 1999 219 227
23. J.C. Munn, S. Zimmerman, and L.C. Hanson Measuring the quality of dying in long-term care J Am Geriatr Soc 55 2007 1371 1379 (Pubitemid 47329233)
24. Teno J. Toolkit of instruments to measure end of life care. After death bereaved family interviewer: NH version. 2000. Available from http://www.chcr.brown.edu/pcoc/linkstoinstrumhtm.htm. Accessed August 26, 2010.
25. J.M. Teno, B. Clarrigdge, V. Casey, S. Edgman-Levitan, and J. Fowler Validation of toolkit after-death bereaved family member interview J Pain Symptom Manage 22 2001 752 758 (Pubitemid 32776586)
26. A.L. Stewart, J. Teno, D.L. Patrick, and J. Lynn The concept of quality of life of dying persons in the context of health care J Pain Symptom Manage 17 1999 93 108 (Pubitemid 29096209)
27. S.M. Dy, L.R. Shugarman, K.A. Lorenz, R.A. Mularski, and J. Lynn A systematic review of satisfaction with care at the end of life J Am Geriatr Soc 56 2008 160 162
28. D. Howell, and K. Brazil Reaching common ground: a patient-family-based conceptual framework of quality of EOL care J Pall Care 21 2005 19 26 (Pubitemid 40544256)
29. K.A. Lorenz, J. Lynn, and S.M. Dy Evidence for improving palliative care at the end of life: a systematic review Ann Intern Med 148 2008 147 159 (Pubitemid 351651557)
30. M.T. Nolan, and V. Mock A conceptional framework for end-of-life care: a reconsideration of factors influencing the integrity of the human person J Prof Nurs 20 2004 351 360 (Pubitemid 39654801)
31. D.L. Patrick, R.A. Engelberg, and J.R. Curtis Evaluating the quality of dying and death J Pain Symptom Manage 22 2001 717 726 (Pubitemid 32780510)
32. G.N. Thompson, and H.M. Chochinov Methodological challenges in measuring quality care at the end of life in the long-term care environment J Pain Symptom Manage 32 2006 378 391 (Pubitemid 44416153)
33. A. Donabedian The quality of care: how can it be assessed? JAMA 260 1988 1743 1748
34. R.J. Siegert, W. Gao, F.H. Walkey, and I.J. Higginson Psychological well-being and quality of care: a factor-analytic examination of the palliative care outcome scale J Pain Symptom Manage 40 2010 67 74
35. S. Zimmerman, A.L. Gruber-Baldini, and P.D. Sloane Assisted living and nursing homes: apples and oranges? Gerontologist 43 2003 107 117 (Pubitemid 41185037)
36. D. Parker, and B. Hodgkinson A comparison of palliative care outcome measures used to assess the quality of palliative care provided in residential aged care facilities: A systematic review 2009 University of Queensland/Blue Care Research and Practice Development Centre Milton, Queensland
37. D. Parker, and B. Hodgkinson A comparison of palliative care outcome measures used to assess the quality of palliative care provided in long-term care facilities: a systematic review Palliat Med 25 2011 5 20
38. H. Chan, and S. Pang Applicability of the modified Quality-of-Life Concerns in the End of Life Questionnaire (mQOLC-E) for frail older people Asian J Gerontol Geriatr 3 2008 126 132
39. J. Curtis, D. Patrick, and R. Engelberg A measure of quality of dying and death: initial validation using after death interviews with family members J Pain Symptom Manage 24 2002 17 31
40. S.M.C. Pang, K. Chan, and B.P.M. Chung Assessing quality of life of patients with advanced chronic obstructive pulmonary disease in the end of life J Pall Care 21 2005 180 187 (Pubitemid 41444990)
41. L. Volicer, A.C. Hurley, and Z.V. Blasi Characteristics of dementia end-of-life care across care settings Am J Hosp Palliat Care 20 2003 191 200 (Pubitemid 39420595)
42. D.K. Kiely, L. Volicer, and J. Teno The validity and reliability of scales for the evaluation of end-of-life care in advanced dementia Alzheimer Dis Assoc Disord 20 2006 176 181 (Pubitemid 44259792)
43. D.J. Casarett, A. Pickerd, and F.A. Bailey Do palliative consultations improve patient outcomes? J Am Geriatr Soc 56 2008 593 599 (Pubitemid 351473505)
44. E. Finlay, S. Shreve, and D.J. Casarett Nationwide Veterans Affairs quality measure for cancer: the family assessment of treatment at the end of life J Clin Oncol 26 2008 3838 3844
45. Y. Alici, D. Smith, and H.L. Lu Families' perceptions of veterans' distress due to post-traumatic stress disorder-related symptoms at the end of life J Pain Symptom Manage 39 2010 507 514
46. K. Steel, G. Ljunggren, and E. Topinkova The RAI-PC: an assessment instrument for palliative care in all settings Am J Hosp Palliat Care 20 2003 211 219 (Pubitemid 39420598)
47. B.Z. Aminoff, and A. Adunsky Dying dementia patients: too much suffering, too little palliation Am J Hosp Palliat Care 22 2005 344 348 (Pubitemid 41432861)
48. B.Z. Aminoff, and A. Adunsky Their last 6 months: suffering and survival of end-stage dementia patients Age Ageing 35 2006 597 601 (Pubitemid 44614155)
49. R. Schols, R.-J. Schipper, A. Brabers, and J. Schols [The Mini-Suffering State Exam (MSSE) has been studies in a Dutch nursing home] Tijdschrift voor Verpleeghuisgeneeskunde 27 2003 14 18 (Pubitemid 38081862)
50. A. Adunsky, B.Z. Aminoff, M. Arad, and M. Bercovitch Mini Suffering State Examination: suffering and survival of end-of-life cancer patients in hospice settings Am J Hosp Palliat Care 24 2008 493 498
51. H.E. Brandt, L. Deliens, and J.T. van der Steen The last days of life of patients with and without dementia assessed with the Palliative Care Outcome Scale Palliat Med 19 2005 334 342 (Pubitemid 40872764)
52. I.J. Higginson, and N. Donaldson Relationship between three palliative care outcome scales Health Qual Life Outcomes 2 2004 68
53. I.J. Higginson, and W. Gao Caregiver assessment of patients with advanced cancer: concordance with patients, effect of burden and positivity Health Qual Life Outcomes 6 2008 42
54. C. Bausewein, M. Fegg, and L. Radbruch Validation and clinical application of the German version of the Palliative Care Outcome Scale J Pain Symptom Manage 30 2005 51 62 (Pubitemid 41021679)
55. M.A. Echteld, L. Deliens, G. van der Wal, M.E. Ooms, and M.W. Ribbe Palliative care units in The Netherlands: changes in patients' functional status and symptoms J Pain Symptom Manage 28 2010 233 243
56. J.H. Eisenchlas, R. Harding, and M.L. Daud Use of Palliative Outcome Scale in Argentina: a cross cultural adaptation and validation study J Pain Symptom Manage 35 2008 188 202
57. A.J. Caprio, L.C. Hanson, and J.C. Munn Pain, dyspnea and the quality of dying in long term care J Am Geriatr Soc 56 2008 683 688 (Pubitemid 351473508)
58. S.L. Mitchell, D.K. Kiely, and R.N. Jones Advanced dementia research in the nursing home: the CASCADE study Alzheimer Dis Assoc Disord 20 2006 166 175 (Pubitemid 44259791)