Epidemiology and patterns of care at the end of life: Rising complexity, shifts in care patterns and sites of death

Health Affairs

Volumn 36, Issue 7, 2017, Pages 1175-1183

  Aldridge, Melissa D ^a   Bradley, Elizabeth H ^b  

^a MOUNT SINAI SCHOOL OF MEDICINE   (United States)

^b VASSAR COLLEGE   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CAUSE OF DEATH; DEATH; DECEDENT; EPIDEMIOLOGY; HEALTH CARE ACCESS; HEALTH CARE QUALITY; HOSPICE CARE; HUMAN; MANAGED CARE; MORTALITY; MULTIPLE CHRONIC CONDITIONS; RANDOMIZED CONTROLLED TRIAL (TOPIC); SYSTEMATIC REVIEW (TOPIC); TERMINAL CARE; TERMINAL DISEASE; AGED; ECONOMICS; FEMALE; MALE; MEDICARE; STATISTICS AND NUMERICAL DATA; TRENDS; UNITED STATES;

AGED; CAUSE OF DEATH; EPIDEMIOLOGY; FEMALE; HOSPICE CARE; HUMANS; MALE; MEDICARE; TERMINAL CARE; UNITED STATES;

EID: 85021781517     PISSN: 02782715     EISSN: 15445208     Source Type: Journal    
DOI: 10.1377/hlthaff.2017.0182     Document Type: Article

References (60)

1. Centers for Disease Control and Prevention. CDC WONDER [Internet]. Atlanta (GA): CDC; [last reviewed 2017 Mar 16; cited 2017 May 12]. Available from: https://wonder .cdc.gov
2. Gillum RF, Yorrick R, Obisesan TO. Population surveillance of dementia mortality. Int J Environ Res Public Health. 2011;8(4):1244-57
3. Wachterman M, Kiely DK, Mitchell SL. Reporting dementia on the death certificates of nursing home residents dying with end-stage dementia. JAMA. 2008;300(22):2608-10
4. James BD, Leurgans SE, Hebert LE, Scherr PA, Yaffe K, Bennett DA. Contribution of Alzheimer disease to mortality in the United States. Neurology. 2014;82(12):1045-50
5. Freid VM, Bernstein AB, Bush MA. Multiple chronic conditions among adults aged 45 and over: trends over the past 10 years [Internet]. Hyattsville (MD): National Center for Health Statistics; 2012 Jul [cited 2017 May 12]. (NCHS Data Brief No. 100). Available from: https://www .cdc.gov/nchs/data/databriefs/db100.pdf
6. Jindai K, Nielson CM, Vorderstrasse BA, Quiñones AR. Multimorbidity and functional limitations among adults 65 or older, NHANES 2005-2012 Prev Chronic Dis. 2016;13:E151
7. Lochner KA, Cox CS. Prevalence of multiple chronic conditions among Medicare beneficiaries, United States, 2010. Prev Chronic Dis. 2013;10:120137
8. Diederichs C, Berger K, Bartels DB. The measurement of multiple chronic diseases-a systematic review on existing multimorbidity indices. J Gerontol A Biol Sci Med Sci. 2011;66(3):301-11
9. Kelley AS, Ettner SL, Morrison RS, Du Q, Wenger NS, Sarkisian CA. Determinants of medical expenditures in the last 6 months of life. Ann Intern Med. 2011;154(4):235-42
10. Wu S, Green A. Projection of chronic illness prevalence and cost inflation. Santa Monica (CA): RAND Corporation; 2000
11. Ritchie CS, Zulman DM. Research priorities in geriatric palliative care: multimorbidity. J Palliat Med. 2013;16(8):843-7
12. Institute of Medicine. Dying in America: improving quality and honoring individual preferences near the end of life. Washington (DC): National Academies Press; 2015
13. Davis MA, Nallamothu BK, Banerjee M, Bynum JP. Identification of four unique spending patterns among older adults in the last year of life challenges standard assumptions. Health Aff (Millwood). 2016;35(7): 1316-23
14. Aldridge MD, Kelley AS. Epidemiology of serious illness and high utilization of health care. In: Institute of Medicine. Dying in America: improving quality and honoring individual preferences near the end of life. Washington (DC): National Academies Press; 2015. p. 487-532
15. Aldridge MD, Kelley AS. The myth regarding the high cost of end-of-life care. Am J Public Health. 2015; 105(12):2411-5
16. Boyd CM, Darer J, Boult C, Fried LP, Boult L, Wu AW. Clinical practice guidelines and quality of care for older patients with multiple comorbid diseases: implications for pay for performance. JAMA. 2005;294(6): 716-24
17. Werner RM, Asch DA. Clinical concerns about clinical performance measurement. Ann Fam Med. 2007;5(2):159-63
18. Jadad AR, To MJ, Emara M, Jones J. Consideration of multiple chronic diseases in randomized controlled trials. JAMA. 2011;306(24):2670-2
19. Van Spall HG, Toren A, Kiss A, Fowler RA. Eligibility criteria of randomized controlled trials published in high-impact general medical journals: a systematic sampling review. JAMA. 2007;297(11): 1233-40
20. Zulman DM, Sussman JB, Chen X, Cigolle CT, Blaum CS, Hayward RA. Examining the evidence: a systematic review of the inclusion and analysis of older adults in randomized controlled trials. J Gen Intern Med. 2011;26(7):783-90
21. Fried TR, Bradley EH, Towle VR, Allore H. Understanding the treatment preferences of seriously ill patients. N Engl J Med. 2002;346(14): 1061-6
22. Currow DC, Phillips JL. Chronic conditions and cancer at the end of life. In: Koczwara B, editor. Cancer and chronic conditions: addressing the problem of multimorbidity in cancer patients and survivors. Singapore: Springer; c 2016. p. 455-75
23. Stevenson J, Abernethy AP, Miller C, Currow DC. Managing comorbidities in patients at the end of life. BMJ. 2004;329(7471):909-12
24. Teno JM, Gozalo P, Khandelwal N, Curtis JR, Meltzer D, Engelberg R, et al. Association of increasing use of mechanical ventilation among nursing home residents with advanced dementia and intensive care unit beds. JAMA Intern Med. 2016; 176(12):1809-16
25. National Alliance for Caregiving, AARP. Caregiving in the U.S.: 2009 [Internet]. Bethesda (MD): NAC; 2009 Nov [cited 2017 May 12]. Available from: http://www .caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf
26. Hebert RS, Schulz R. Caregiving at the end of life. J Palliat Med. 2006; 9(5):1174-87
27. Tarlow BJ, Wisniewski SR, Belle SH, Rubert M, Ory MG, Gallagher-Thompson D. Positive aspects of caregiving: contributions of the REACH Project to the development of new measures for Alzheimer's caregiving. Res Aging. 2004;26(4): 429-53
28. Jacobs S, Mazure C, Prigerson H. Diagnostic criteria for traumatic grief. Death Stud. 2000;24(3): 185-99
29. Prigerson HG, Cherlin E, Chen JH, Kasl SV, Hurzeler R, Bradley EH. The Stressful Caregiving Adult Reactions to Experiences of Dying (SCARED) Scale: a measure for assessing caregiver exposure to distress in terminal care. Am J Geriatr Psychiatry. 2003; 11(3):309-19
30. Feinberg L, Reinhard SC, Houser A, Choula R. Valuing the invaluable: 2011 update: the growing contribution and costs of family caregiving [Internet]. Washington (DC): AARP Public Policy Institute; 2011 [cited 2017 May 12]. Available from: http://assets.aarp.org/rgcenter/ppi/ltc/i51-caregiving.pdf
31. Redfoot D, Feinberg L, Houser A. The aging of the baby boom and the growing care gap: a look at future declines in the availability of family caregivers [Internet]. Washington (DC): AARP Public Policy Institute; 2013 [cited 2017 May 12]. Available from: http://www.aarp.org/content/dam/aarp/research/public_policy_institute/ltc/2013/baby-boom-and-the-growing-caregap-in-brief-AARP-ppi-ltc.pdf
32. Gill TM, Gahbauer EA, Han L, Allore HG. The role of intervening hospital admissions on trajectories of disability in the last year of life: prospective cohort study of older people. BMJ. 2015;350:h2361
33. Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361(16):1529-38
34. Gozalo P, Teno JM, Mitchell SL, Skinner J, Bynum J, Tyler D, et al. End-of-life transitions among nursing home residents with cognitive issues. N Engl J Med. 2011;365(13): 1212-21
35. De Vries EN, Ramrattan MA, Smorenburg SM, Gouma DJ, Boermeester MA. The incidence and nature of in-hospital adverse events: a systematic review. Qual Saf Health Care. 2008;17(3):216-23
36. Covinsky KE, Pierluissi E, Johnston CB. Hospitalization-associated disability: "She was probably able to ambulate, but I'm not sure." JAMA. 2011;306(16):1782-93
37. Gill TM, Allore HG, Gahbauer EA, Murphy TE. Change in disability after hospitalization or restricted activity in older persons. JAMA. 2010;304(17):1919-28
38. Higginson IJ, Sen-Gupta GJ. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med. 2000;3(3):287-300
39. Barnato AE, Herndon MB, Anthony DL, Gallagher PM, Skinner JS, Bynum JP, et al. Are regional variations in end-of-life care intensity explained by patient preferences? A study of the US Medicare population. Med Care. 2007;45(5):386-93
40. Fischer S, Min SJ, Cervantes L, Kutner J. Where do you want to spend your last days of life? Low concordance between preferred and actual site of death among hospitalized adults. J Hosp Med. 2013; 8(4):178-83
41. Riley GF, Lubitz JD. Long-term trends in Medicare payments in the last year of life. Health Serv Res. 2010;45(2):565-76
42. 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(5):470-7
43. Wang SY, Aldridge MD, Gross CP, Canavan M, Cherlin E, Johnson-Hurzeler R, et al. End-of-life care intensity and hospice use: a regionallevel analysis. Med Care. 2016; 54(7):672-8
44. Aldridge MD, Epstein AJ, Brody AA, Lee EJ, Cherlin E, Bradley EH. The impact of reported hospice preferred practices on hospital utilization at the end of life. Med Care. 2016; 54(7):657-63
45. Aldridge MD, Epstein EJ, Brody AA, Lee EJ, Morrison RS, Bradley EH. Hospices with higher spending on patient care have lower rates of hospitalization. Oral presentation at: AcademyHealth Annual Research Meeting; 2016 Jun 27; Boston, MA
46. Wang SY, Aldridge MD, Gross CP, Canavan M, Cherlin E, Johnson-Hurzeler R, et al. Transitions between healthcare settings of hospice enrollees at the end of life. J Am Geriatr Soc. 2016;64(2):314-22
47. National Hospice and Palliative Care Organization. NHPCO's facts and figures: hospice care in America [Internet]. Alexandria (VA): NHPCO; 2015 Sep [cited 2017 May 12]. Available from: http://www .nhpco.org/sites/default/files/public/Statistics_Research/2015_Facts_Figures.pdf
48. Authors' estimates based on National Vital Statistics System mortality data for 2014 and National Hospice and Palliative Care Organization data (see Note 48)
49. Aldridge MD, Canavan M, Cherlin E, Bradley EH. Has hospice use changed? 2000-2010 utilization patterns. Med Care. 2015;53(1): 95-101
50. Teno JM, Plotzke M, Gozalo P, Mor V. A national study of live discharges from hospice. J Palliat Med. 2014; 17(10):1121-7
51. Carlson MD, Herrin J, Du Q, Epstein AJ, Barry CL, Morrison RS, et al. Impact of hospice disenrollment on health care use and Medicare expenditures for patients with cancer. J Clin Oncol. 2010;28(28):4371-5
52. Mitchell SL, Black BS, Ersek M, Hanson LC, Miller SC, Sachs GA, et al. Advanced dementia: state of the art and priorities for the next decade. Ann Intern Med. 2012;156(1 Pt 1): 45-51
53. Medicare Payment Advisory Commission. Report to the Congress: Medicare Payment Policy [Internet]. Washington (DC): MedPAC; 2013 Mar. Chapter 12, Hospice services; [cited 2017 May 12]. p. 261-84. Available from: http://www .medpac.gov/docs/default-source/reports/mar13_entirereport.pdf
54. Carlson MD, Morrison RS, Bradley EH. Improving access to hospice care: informing the debate. J Palliat Med. 2008;11(3):438-43
55. Paradis LF, Cummings SB. The evolution of hospice in America toward organizational homogeneity. J Health Soc Behav. 1986;27(4): 370-86
56. Wennberg JE, Fisher ES, Stukel TA, Skinner JS, Sharp SM, Bronner KK. Use of hospitals, physician visits, and hospice care during last six months of life among cohorts loyal to highly respected hospitals in the United States. BMJ. 2004; 328(7440):607
57. Kelley AS, Deb P, Du Q, Aldridge Carlson MD, Morrison RS. Hospice enrollment saves money for Medicare and improves care quality across a number of different lengthsof-stay. Health Aff (Millwood). 2013;32(3):552-61
58. Wang SY, Aldridge MD, Gross CP, Canavan M, Cherlin E, Johnson-Hurzeler R, et al. Geographic variation of hospice use patterns at the end of life. J Palliat Med. 2015; 18(9):771-80
59. Aldridge Carlson MD, Barry CL, Cherlin EJ, McCorkle R, Bradley EH. Hospices' enrollment policies may contribute to underuse of hospice care in the United States. Health Aff (Millwood). 2012;31(12):2690-8
60. CMS.gov. Medicare Care Choices Model [Internet]. Baltimore (MD): Centers for Medicare and Medicaid Services; [last updated 2017 Feb 13; cited 2017 May 12]. Available from: http://innovation.cms.gov/initiatives/Medicare-Care-Choices