Factors Predicting Bereaved Caregiver Perception of Quality of Care in the Final Week of Life: Implications for Health Care Providers

Journal of Palliative Medicine

Volumn 18, Issue 10, 2015, Pages 849-857

  Higgins, Philip C ^a   Garrido, Melissa M ^b,c   Prigerson, Holly G ^d  

^a BRIGHAM AND WOMEN S HOSPITAL   (United States)

^b VETERANS AFFAIRS MEDICAL CENTER   (United States)

^c MOUNT SINAI SCHOOL OF MEDICINE   (United States)

^d WEILL CORNELL MEDICAL COLLEGE   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ADVANCED CANCER; ARTICLE; ASSESSMENT OF HUMANS; BEREAVEMENT; CANCER PATIENT; CAREGIVER; CAREGIVER BURDEN; CAREGIVER EVALUATION OF QUALITY OF END OF LIFE CARE; COPING BEHAVIOR; DYING; FEMALE; HEALTH BEHAVIOR; HEALTH CARE PERSONNEL; HEALTH CARE QUALITY; HEALTH CARE UTILIZATION; HOSPICE CARE; HUMAN; LENGTH OF STAY; MAJOR CLINICAL STUDY; MALE; MENTAL HEALTH; MENTAL HEALTH SERVICE; MIDDLE AGED; PATIENT CARE; QUALITY OF LIFE; SHORT FORM 36; TERMINAL CARE; TERMINAL DISEASE; TOBACCO USE; WELLBEING; ADAPTIVE BEHAVIOR; ADVANCE CARE PLANNING; AGED; ATTITUDE TO DEATH; ATTITUDE TO HEALTH; DOCTOR PATIENT RELATION; HOSPITAL PATIENT; HUMAN RELATION; NEOPLASMS; PERCEPTION; PSYCHOLOGY; REGRESSION ANALYSIS; RELIGION; SOCIAL SUPPORT; STANDARDS; VERY ELDERLY; YOUNG ADULT;

ADAPTATION, PSYCHOLOGICAL; ADULT; ADVANCE CARE PLANNING; AGED; AGED, 80 AND OVER; ATTITUDE TO DEATH; ATTITUDE TO HEALTH; BEREAVEMENT; CAREGIVERS; FEMALE; HUMANS; INPATIENTS; LENGTH OF STAY; MALE; MIDDLE AGED; NEOPLASMS; PERCEPTION; PHYSICIAN-PATIENT RELATIONS; PROFESSIONAL-FAMILY RELATIONS; QUALITY OF HEALTH CARE; QUALITY OF LIFE; REGRESSION ANALYSIS; RELIGION AND MEDICINE; SOCIAL SUPPORT; TERMINAL CARE; YOUNG ADULT;

EID: 84943529301     PISSN: 10966218     EISSN: 15577740     Source Type: Journal    
DOI: 10.1089/jpm.2015.29001.hp     Document Type: Article

References (64)

1. Teno JM, Casey VA, Welch LC, et al. : Patient-focused, family-centered end-of-life medical care: Views of the guidelines and bereaved family members. J Pain Symptom Manage 2001;22:738-751.
2. Barry LC, Kasl SV, Prigerson HG: Psychiatric disorders among bereaved persons: The role of perceived circumstances of death and preparedness for death. Am J Geriatr Psychiatry 2002;10:447-457.
3. Hanson LC, Danis M, Garrett J; What is wrong with endof-life care? Opinions of bereaved family members. J Am Geriatr Soc 1997;45:1339-1344.
4. Koop PM, Strang VR: The bereavement experience following home-based family caregiving for persons with advanced cancer. Clin Nurs Res 2003;12:127-144.
5. Wendler D, Rid A: Systematic review: The effect on surrogates of making treatment decisions for others. Ann Intern Med 2011;154:336-346.
6. Wright AA, Zhang B, Ray A, et al. : Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008;300:1665-1673.
7. Hudson PL, Thomas K, Trauer T, et al. : Psychological and social profile of family caregivers on commencement of palliative care. J Pain Symptom Manage 2011;41:522-534.
8. Vanderwerker LC, Laff RE, Kadan-Lottick NS, et al. : Psychiatric disorders and mental health service use among caregivers of advanced cancer patients. J Clin Oncol 2005;23:6899-6907.
9. Cherlin EJ, Barry CL, Prigerson HG, et al. : Bereavement services for family caregivers: How often used, why, and why not. J Palliat Med 2007;10:148-158.
10. Guildin M, Vedsted P, Zachariae R, et al. : Complicated grief and need for professional support in family caregivers of cancer patients in palliative care: A longitudinal cohort study. Support Care Cancer 2012;20:1679-1685.
11. Lichtenthal WG, Nilsson M, Kissane DW, et al. : Underutilization of mental health services among bereaved caregivers with Prolonged Grief Disorder. Psychiatr Serv 2011;62:1225-1229.
12. Gries CJ, Engelberg RA, Kross EK, et al. : Predictors of symptoms of posttraumatic stress and depression in family members after patient death in the ICU. Chest 2010;137:280-287.
13. Azoulay E, Pochard F, Kentish-Barnes N, et al. : Risk of post-traumatic stress symptoms in members of intensive care unit patients. Am J Respir Crit Care Med 2005;171:987-994.
14. Wright AA, Keating NL, Balboni TA, et al. : Place of death: Correlations with quality of life of patients with cancer and predictors of bereaved caregivers' mental health. J Clin Oncol 2010;28:4457-4464.
15. Emanuel LL, Alpert HR, Baldwin DC, et al. : What terminally ill patients care about: Towards a validated construct of patients' perspectives. J Palliat Med 2000;3:419-431.
16. Gutierrez KM: Experiences and needs of families regarding prognostic communication in an intensive care unit: Supporting families at the end of life. Crit Care Nurs Q 2012;35:299-313.
17. Russ AJ, Kaufman SR. Family perceptions of prognosis, silence, and the 'suddenness' of death. Cult Med Psychiatry 2005;29:103-123.
18. Steinhauser KE, Christakis NA, Clipp EC, et al. : Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000;284:2476-2482.
19. Byock IR, Merriman MP: Measuring quality of life for patients with terminal illness: The Missoula-VITAS quality of life index. Palliat Med 1998;12:231-244.
20. Curtis JR, Patrick DL, Engelberg RA, et al. : A measure of the quality of dying and death: Initial validation using afterdeath interviews with family members. J Pain Symptom Manage 2002;24:17-31.
21. Hales S, Zimmermann C, Rodin G: The quality of dying and death: A systematic review of measures. Palliat Med 2010;24:127-144.
22. Steinhauser KE, Bosworth HB, Clipp EC, et al. : Initial assessment of a new instrument to measure quality of life at the end of life. J Palliat Med 2002;5:829-841.
23. Teno JM, Clarridge BR, Casey V, et al. : Family perspectives on end-of-life care at the last place of care. JAMA 2004;291:88-93.
24. Teno JM, Claridge B, Casey V, et al. : Validation of toolkit after-death bereaved family member interview. J Pain Symptom Manage 2001;22:752-758.
25. Engelberg RA, Downey L, Wenrich MD, et al. : Measuring the quality of end-of-life care. J Pain Symptom Manage 2010;39:951-971.
26. Cassel EJ: The nature of suffering and the goals of medicine. N Engl J Med 1982;306:639-645.
27. Akiyama A, Numata K, Mikami H: Importance of end-oflife support to minimize caregiver's regret during bereavement of the elderly for better subsequent adaptation to bereavement. Arch Gerontol Geriatr 2010;50:175-178.
28. Higgins PC, PrigersonHG: Caregiver Evaluation of the Quality of End-Of-Life Care (CEQUEL) Scale: The caregiver's perception of patient care near death. PloS One 2013;8:e66066.
29. Garrido MM, Prigerson HG: The end-of-life experience: Modifiable predictors of caregivers' bereavement adjustment. Cancer 2014;120:918-925.
30. Zhang B, Nilsson ME, Prigerson HG: Factors important to patients' quality of life at the end of life. JAMA Intern Med 2012;172:1133-1142.
31. Ersek M, Smith D, Cannuscio C, et al. : A nationwide study comparing end-of-life care for men and women veterans. J Palliat Med 2013;16:734-740.
32. Cohen SR, Mount BM, Strobel MG, et al. : The McGill Quality of Life Questionnaire: A measure of quality of life appropriate for people with advanced disease: A preliminary study of validity and acceptability. Palliat Med 1995;9:207-219.
33. Cohen SR,Mount BM, Bruera E, et al. : Validity of theMcGill Quality of Life Questionnaire in the palliative care setting: A multi-centre Canadian study demonstrating the importance of the existential domain. Palliat Med 1997;11:3-20.
34. Cohen SR, Mount BM, Tomas JJ, et al. : Existential wellbeing is an important determinant of quality of life: Evidence from the McGill Quality of Life Questionnaire. Cancer 1996;77:576-586.
35. First MB, Spitzer RL, Gibbon M, et al. : Structured Clinical Interview for the DSM-IV Axis I Disorders, Research Version, Patient Edition (SCID-I/P). New York: Biometrics Research, New York State Psychiatric Institute, 1995.
36. Mack JW, Nilsson M, Balboni T, et al. : Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE). Cancer 2008;112:2509-2517.
37. Wright AA, Mack JW, Kritek PA, et al. : Influence of patients' preferences and treatment site on cancer patients' end-of-life care. Cancer 2010;116:4656-4663.
38. Balboni TA, Paulk ME, Balboni MJ, et al. : Provision of spiritual care to patients with advanced cancer: Associations with medical care and quality of life near death. J Clin Oncol 2010;28:445-452.
39. Balboni T, Balboni M, Paulk ME, et al. : Support of cancer patients' spiritual needs and associations with medical care costs at the end of life. Cancer 2011;117:5383-5391.
40. Pargament KI, Koenig HG, Perez LM: The many methods of religious coping: Development and initial validation of the RCOPE. J Clin Psychol 2000;56:519-543.
41. Pargament K, Feuille M. , Burdzy D: The Brief RCOPE: Current psychometric status of a short measure of religious coping. Religions (Basel) 2011;2:51-76.
42. Mack JW, Block SD, Nilsson M, et al. : Measuring therapeutic alliance between oncologists and patients with advanced cancer: The Human Connection Scale. Cancer 2009;115:3302-3311.
43. RAND Corporation: 36-item short form survey from the RAND Medical Outcomes Study. RAND Corporation, 2013. www. rand. org/health/surveys-tools/mos/mos-core-36item . html. Last accessed July 6, 2015.
44. Pearce MJ, Singer JL, Prigerson HG: Religious coping among caregivers of terminally ill cancer patients: Main effects and psychosocial mediators. J Health Psychol 2006;11: 743-759.
45. Cohen S, Mermelstein R, Kamarck T, et al. : Measuring the functional components of social support. In: Sarason IG, Sarason BR (eds): Social Support: Theory, Research, and Applications. New York: Springer-Verlag, 1997, pp. 73-94.
46. Moos RH, Moos BS: Family Environment Scale manual. Washington, DC: Consulting Psychologists Press, 1991.
47. Andren S, Elmstahl S: Family caregivers' subjective experiences of satisfaction in dementia care: Aspects of burden, subjective health and sense of coherence. Scand J Caring Sci 2005;19:157-168.
48. Kinoshita H, Maeda I, Morita T, et al. : Place of death and the differences in patient quality of death and dying and caregiver burden. J Clin Oncol 2015;33:357-363.
49. Norton SA, Tilden VP, Tolle SW, et al. : Life support withdrawal: Communication and conflict. Am J Crit Care 2003;12:548-555.
50. Gries CJ, Curtis JR, Wall RJ, et al. : Family member satisfaction with end-of-life decision making in the ICU. Chest 2008;133:704-712.
51. Radwany S, Albanese T, Clough L, et al. : End-of-life decision making and emotional burden: Placing family meetings in context. Am J Hosp Palliat Care 2009;26:376-383.
52. Tilden VP, Tolle SW, Nelson CA, et al. : Family decisionmaking to withdraw life-sustaining treatments from hospitalized patients. Nurs Res 2001;50:105-115.
53. Bradley EH, Prigerson H, Carlson MDA, et al. : Depression among surviving caregivers: Does length of hospice enrollment matter? Am J Psychiatry 2004;161:2257-2262.
54. Kris AE, Cherlin EJ, Prigerson H, et al. : Length of hospice enrollment and subsequent depression in family caregivers: 13-month follow-up study. Am J Geriatr Psychiatry 2006;14: 264-269.
55. WaldropDP, RinfretteES: Canshort hospice enrollment be long enough? Comparing the perspectives of hospice professionals and family caregivers. Palliat Support Care 2009;7:37-47.
56. Goodman DC, Morden NE, Chang C, et al. : Trends in cancer care near the end of life: A Dartmouth Atlas of Health Care brief. The Dartmouth Atlas of Health Care, 2013. www. dart mouthatlas. org/downloads/reports/Cancer-brief-090413. pdf. Last accessed July 6, 2015.
57. Teno JM, Gozalo PL, Bynum JPW, et al. : Change in endof-life care for Medicare beneficiaries: Site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA 2013;309:470-477.
58. Bernacki RE, Ko DN, Higgins P, et al. : Improving access to palliative care through an innovative quality improvement initiative: An opportunity for pay-for-performance. J Palliat Med 2012;15:192-199.
59. Bookbinder M, Glajchen M, McHugh M, et al. : Nurse practitioner-based models of specialist palliative care at home: Sustainability and evaluation of feasibility. J Pain Symptom Manage 2011;41:25-34.
60. O'Mahony S, Blank A, Simpson J, et al. : Preliminary report of a palliative care and case management project in an emergency department for chronically ill elderly patients. J Urban Health 2008;85:443-451.
61. Cutler D, Skinner J, Stern AD, et al. : Physician beliefs and patient preferences: A new look at regional variation in health care spending. National Bureau of Economic Research, Cambridge, MA. 2013. www. nber. org/papers/w19320. Last accessed July 6, 2015.
62. Quill TE, Abernethy AP: Generalist plus specialist palliative care: Creating a more sustainable model. N Engl J Med 2013;368:1173-1175.
63. Alcorn SR, Balboni MJ, Prigerson HG, et al. : 'If God wanted me yesterday, I wouldn't be here today': Religious and spiritual themes in patients' experiences of advanced cancer. J Palliat Med 2010;13:581-588.
64. Morrison RS: 'We haven't got a prayer' (Or much of anything else for that matter). J Palliat Med 2015;5:1-2.