1932

Abstract

This review proposes that the end of life is a uniquely contemporary life course stage. Epidemiologic, technological, and cultural shifts over the past two centuries have created a context in which dying has shifted from a sudden and unexpected event to a protracted, anticipated transition following an incurable chronic illness. The emergence of an end-of-life stage lasting for months or even years has heightened public interest in enhancing patient well-being, autonomy, and the receipt of medical care that accords with patient and family members’ wishes. We describe key components of end-of-life well-being and highlight socioeconomic and race disparities therein, drawing on fundamental cause theory. We describe two practices that are critical to end-of-life well-being (advance care planning and hospice) and identify limitations that may undermine their effectiveness. We conclude with recommendations for future sociological research that could inform practices to enhance patient and family well-being at the end of life.

Loading

Article metrics loading...

/content/journals/10.1146/annurev-soc-073018-022524
2019-07-30
2024-03-29
Loading full text...

Full text loading...

/deliver/fulltext/soc/45/1/annurev-soc-073018-022524.html?itemId=/content/journals/10.1146/annurev-soc-073018-022524&mimeType=html&fmt=ahah

Literature Cited

  1. Aldridge MD, Kelley AS. 2015. The myth regarding the high cost of end-of-life care. Am. J. Public Health 105:122411–15
    [Google Scholar]
  2. Aldridge MD, Schlesinger M, Barry CL, Morrison RS, McCorkle R et al. 2014. National hospice survey results: for-profit status, community engagement, and service. JAMA Intern. Med. 174:4500–6
    [Google Scholar]
  3. Aldridge Carlson MD, Barry CL, Cherlin EJ, McCorkle R, Bradley EH 2012. Hospices’ enrollment policies may contribute to underuse of hospice care in the United States. Health Aff 31:122690–98
    [Google Scholar]
  4. Am. Bar Assoc. Comm. Law Aging 2018. Default surrogate consent statutes Legis. Anal., Am. Bar Assoc. Chicago: https://www.americanbar.org/content/dam/aba/administrative/law_aging/2014_default_surrogate_consent_statutes.authcheckdam.pdf
  5. Anderson KO, Green CR, Payne R 2009. Racial and ethnic disparities in pain: causes and consequences of unequal care. J. Pain 10:121187–204
    [Google Scholar]
  6. Angus DC, Barnato AE, Linde-Zwirble WT, Weissfeld LA, Watson RS et al. 2004. Use of intensive care at the end of life in the United States: an epidemiologic study. Crit. Care Med. 32:3638–43
    [Google Scholar]
  7. Ardelt M, Edwards CA. 2015. Wisdom at the end of life: an analysis of mediating and moderating relations between wisdom and subjective well-being. J. Gerontol. Ser. B Psychol. Sci. Soc. Sci. 71:3502–13
    [Google Scholar]
  8. Arias E, Heron M, Xu J 2017. United States life tables, 2013. Natl. Vital Stat. Rep. 66:3)
    [Google Scholar]
  9. Ariès P. 1981. The Hour of Our Death, transl. H Weaver New York: Knopf
    [Google Scholar]
  10. Armour S. 2015. End-of-life discussions will be reimbursed by Medicare. Wall Street Journal Oct. 30. https://www.wsj.com/articles/end-of-life-discussions-will-be-reimbursed-by-medicare-1446240608
    [Google Scholar]
  11. Arnett JJ. 1998. Learning to stand alone: the contemporary American transition to adulthood in cultural and historical context. Hum. Dev. 41:5–6295–315
    [Google Scholar]
  12. Bäckman L, MacDonald SW. 2006. Death and cognition: synthesis and outlook. Eur. Psychol. 11:3224–35
    [Google Scholar]
  13. Barnato AE, Farrell MH, Chang C-CH, Lave JR, Roberts MS, Angus DC 2009. Development and validation of hospital “end-of-life” treatment intensity measures. Med. Care 47:1098–105
    [Google Scholar]
  14. Barone E. 2014. See which states allow assisted suicide. TIME Nov. 3. http://time.com/3551560/brittany-maynard-right-to-die-laws/
    [Google Scholar]
  15. Behrman RE, Field MJ. 2003. When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families Washington, DC: Natl. Acad. Press
  16. Bravell ME, Malmberg B, Berg S 2010. End-of-life care in the oldest old. Palliat. Support. Care 8:3335–44
    [Google Scholar]
  17. Brenan M. 2018. Americans’ strong support for euthanasia persists. Gallup May 31. https://news.gallup.com/poll/235145/americans-strong-support-euthanasia-persists.aspx
    [Google Scholar]
  18. Brown CE, Engelberg RA, Sharma R, Downey L, Fausto JA et al. 2018. Race/ethnicity, socioeconomic status, and healthcare intensity at the end of life. J. Palliat. Med. 21:91308–16
    [Google Scholar]
  19. Burgio KL, Williams BR, Dionne-Odom JN, Redden DT, Noh H et al. 2016. Racial differences in processes of care at end of life in VA Medical Centers: planned secondary analysis of data from the BEACON trial. J. Palliat. Med. 19:2157–63
    [Google Scholar]
  20. Byock I. 1997. Dying Well: Peace and Possibilities at the End of Life New York: Riverhead
  21. Carney MT, Fujiwara J, Emmert BE, Liberman TA, Paris B 2016. Elder orphans hiding in plain sight: a growing vulnerable population. Curr. Gerontol. Geriatr. Res. 2016:4723250
    [Google Scholar]
  22. Carr D. 2003. A ‘good death’ for whom? Quality of spouse's death and psychological distress among older widowed persons. J. Health Soc. Behav. 44:2215–32
    [Google Scholar]
  23. Carr D. 2011. Racial differences in end-of-life planning: Why don't Blacks and Latinos prepare for the inevitable. Omega 63:1–20
    [Google Scholar]
  24. Carr D. 2012a. Death and dying in the contemporary United States: What are the psychological implications of anticipated death. Soc. Pers. Psychol. Compass 6:2184–95
    [Google Scholar]
  25. Carr D. 2012b. “I don't want to die like that…” The impact of significant others’ death quality on advance care planning. Gerontologist 52:6770–81
    [Google Scholar]
  26. Carr D. 2012c. Racial and ethnic differences in advance care planning: identifying subgroup patterns and obstacles. J. Aging Health 24:923–47
    [Google Scholar]
  27. Carr D. 2012d. The social stratification of older adults’ preparations for end-of-life health care. J. Health Soc. Behav. 53:297–312
    [Google Scholar]
  28. Carr D, Khodyakov D. 2007. Health care proxies: Whom do young old adults choose and why. J. Health Soc. Behav. 48:2180–94
    [Google Scholar]
  29. Carr D, Luth EA. 2017. Advance care planning: contemporary issues and future directions. Innov. Aging 1:1igx012
    [Google Scholar]
  30. Carr D, Moorman SM. 2009. End‐of‐life treatment preferences among older adults: an assessment of psychosocial influences. Sociol. Forum 24:4754–78
    [Google Scholar]
  31. Carr D, Moorman SM, Boerner K 2013. End-of-life planning in a family context: Does relationship quality affect whether (and with whom) older adults plan. J. Gerontol. Ser. B Psychol. Sci. Soc. Sci. 68:4586–92
    [Google Scholar]
  32. Cent. Dis. Control Prev 1999. Ten great public health achievements–United States, 1900–1999. MMWR. Morb. Mortal. Wkly. Rep 48:12241–43
    [Google Scholar]
  33. Chau DL, Walker V, Pai L, Cho LM 2008. Opiates and elderly: use and side effects. Clin. Interv. Aging 3:2273–78
    [Google Scholar]
  34. Chi NC, Demiris G, Lewis FM, Walker AJ, Langer SL 2016. Behavioral and educational interventions to support family caregivers in end-of-life care: a systematic review. Am. J. Hosp. Palliat. Med. 33:9894–908
    [Google Scholar]
  35. Chochinov HM, Cann BJ. 2005. Interventions to enhance the spiritual aspects of dying. J. Palliat. Med. 8:Suppl. 1103–15
    [Google Scholar]
  36. Christakis NA. 2000. Death Foretold Chicago: Univ. Chicago Press
  37. Christakis NA, Iwashyna TJ. 2003. The health impact of health care on families: a matched cohort study of hospice use by decedents and mortality outcomes in surviving, widowed spouses. Soc. Sci. Med. 57:3465–75
    [Google Scholar]
  38. Christakis NA, Smith JL, Parkes CM, Lamont EB 2000. Extent and determinants of error in doctors' prognoses in terminally ill patients: prospective cohort study. Commentary: Why do doctors overestimate? Commentary: Prognoses should be based on proved indices not intuition. BMJ 320:7233469–73
    [Google Scholar]
  39. Cintron A, Morrison RS. 2006. Pain and ethnicity in the United States: a systematic review. J. Palliat. Med. 9:61454–73
    [Google Scholar]
  40. Clayton JM, Hancock KM, Butow PN, Tattersall MHN, Currow DC 2007. Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Med. J. Aust. 186:12S77
    [Google Scholar]
  41. Coleman EA, Boult C. 2003. Improving the quality of transitional care for persons with complex care needs. J. Am. Geriatr. Soc. 51:4556–57
    [Google Scholar]
  42. Dartm. Inst. Health Policy Clin. Pract 2018. Dartmouth Atlas of Health Care Accessed April 9, 2019. https://www.dartmouthatlas.org/interactive-apps/end-of-life-care/
  43. Degenholtz HB, Thomas SB, Miller MJ 2003. Race and the intensive care unit: disparities and preferences for end-of-life care. Crit. Care Med. 31:S373–78
    [Google Scholar]
  44. DeNavas-Walt C, Proctor BD, Mills RJ 2004. Income, poverty, and health insurance coverage in the United States: 2003 Curr. Popul. Rep. P60-226, US Census Bur Washington, DC: https://www.census.gov/prod/2004pubs/p60-226.pdf
  45. Detering KM, Hancock AD, Reade MC, Silvester W 2010. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 340:c1345
    [Google Scholar]
  46. Ditto PH, Danks JH, Smucker WD, Bookwala J, Coppola KM et al. 2001. Advance directives as acts of communication: a randomized controlled trial. Arch. Intern. Med. 161:3421–30
    [Google Scholar]
  47. Doukas DJ, Hardwig J. 2003. Using the family covenant in planning end‐of‐life care: obligations and promises of patients, families, and physicians. J. Am. Geriatr. Soc. 51:81155–58
    [Google Scholar]
  48. Emanuel EJ. 2002. Euthanasia and physician-assisted suicide: a review of the empirical data from the United States. Arch. Intern. Med. 162:2142–52
    [Google Scholar]
  49. Emanuel EJ, Emanuel LL. 1998. The promise of a good death. Lancet 351:21–29
    [Google Scholar]
  50. Field D. 1994. Palliative medicine and the medicalization of death. Eur. J. Cancer Care 3:258–62
    [Google Scholar]
  51. Field MJ, Cassel CK 1997. Approaching Death: Improving Care at the End of Life Washington, DC: Natl. Acad. Press
  52. Finlay IG, George R. 2011. Legal physician-assisted suicide in Oregon and the Netherlands: evidence concerning the impact on patients in vulnerable groups—another perspective on Oregon's data. J. Med. Ethics 37:3171–74
    [Google Scholar]
  53. Flory J, Young-Xu Y, Gurol I, Levinsky N, Ash A, Emanuel E 2004. Place of death: US trends since 1980. Health Aff 23:3194–200
    [Google Scholar]
  54. Fowler FJ Jr, Coppola KM, Teno JM. 1999. Methodological challenges for measuring quality of care at the end of life. J. Pain Symptom Manag. 17:2114–19
    [Google Scholar]
  55. French EB, McCauley J, Aragon M, Bakx P, Chalkley M et al. 2017. End-of-life medical spending in last twelve months of life is lower than previously reported. Health Aff 36:71211–17
    [Google Scholar]
  56. Gawande A. 2014. Being Mortal: Medicine and What Matters in the End New York: Metropolitan Books
  57. Gerstorf D, Ram N, Mayraz G, Hidajat M, Lindenberger U et al. 2010. Late-life decline in well-being across adulthood in Germany, the United Kingdom, and the United States: Something is seriously wrong at the end of life. Psychol. Aging 25:2477–85
    [Google Scholar]
  58. Gozalo P, Teno JM, Mitchell SL, Skinner J, Bynum J et al. 2011. End-of-life transitions among nursing home residents with cognitive issues. New Engl. J. Med. 365:131212–21
    [Google Scholar]
  59. Green CR, Anderson KO, Baker TA, Campbell LC, Decker S et al. 2003. The unequal burden of pain: confronting racial and ethnic disparities in pain. Pain Med 4:3277–94
    [Google Scholar]
  60. Hoffman KM, Trawalter S, Axt JR, Oliver MN 2016. Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. PNAS 113:164296–301
    [Google Scholar]
  61. Hogan C, Lunney J, Gabel J, Lynn J 2001. Medicare beneficiaries’ costs of care in the last year of life. Health Aff 20:4188–95
    [Google Scholar]
  62. House JS, Lantz PM, Herd P 2005. Continuity and change in the social stratification of aging and health over the life course: evidence from a nationally representative longitudinal study from 1986 to 2001/2002 (Americans' Changing Lives Study). J. Gerontol. Ser. B Psychol. Sci. Soc. Sci. 60:Special issue 2S15–26
    [Google Scholar]
  63. Hui D, Nooruddin Z, Didwaniya N, Dev R, De La Cruz M et al. 2014. Concepts and definitions for “actively dying,” “end of life,” “terminally ill,” “terminal care,” and “transition of care”: a systematic review. J. Pain Symptom Manag. 47:177–89
    [Google Scholar]
  64. Huynh TN, Kleerup EC, Wiley JF, Savitsky TD, Guse D et al. 2013. The frequency and cost of treatment perceived to be futile in critical care. JAMA Intern. Med. 173:201887–94
    [Google Scholar]
  65. Idler EL, McLaughlin J, Kasl S 2009. Religion and the quality of life in the last year of life. J. Gerontol. Ser. B Psychol. Sci. Soc. Sci. 64:4528–37
    [Google Scholar]
  66. Inst. Med 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Washington, DC: Natl. Acad. Press
  67. Johnson RW, Newby LK, Granger CB, Cook WA, Peterson ED et al. 2010. Differences in level of care at the end of life according to race. Am. J. Crit. Care 19:4335–43
    [Google Scholar]
  68. Kawachi I, Daniels N, Robinson DE 2005. Health disparities by race and class: why both matter. Health Aff 24:2343–52
    [Google Scholar]
  69. Kellehear A. 2009. Dying old: and preferably alone? Agency, resistance and dissent at the end of life. Int. J. Ageing Later Life 4:15–21
    [Google Scholar]
  70. Kennedy C, Brooks-Young P, Gray CB, Larkin P, Connolly M et al. 2014. Diagnosing dying: an integrative literature review. BMJ Support. Palliat. Care 4:263–270
    [Google Scholar]
  71. Khodyakov D, Carr D. 2009. The impact of late-life parental death on adult sibling relationships: Do parents' advance directives help or hurt. Res. Aging 31:5495–519
    [Google Scholar]
  72. Koss CS, Baker TA. 2017. Race differences in advance directive completion: the narrowing gap between White and African American older adults. J. Aging Health 29:324–42
    [Google Scholar]
  73. Koss CS, Baker TA. 2018. Where there's a will: the link between estate planning and disparities in advance care planning by white and black older adults. Res. Aging 40:281–302
    [Google Scholar]
  74. Kramer BJ, Yonker JA. 2011. Perceived success in addressing end-of-life care needs of low-income elders and their families: What has family conflict got to do with it. J. Pain Symptom Manag. 41:135–48
    [Google Scholar]
  75. Lamont EB, Christakis NA. 2001. Prognostic disclosure to patients with cancer near the end of life. Ann. Intern. Med. 134:121096–105
    [Google Scholar]
  76. Lendon JP, Ahluwalia SC, Walling AM, Lorenz KA, Oluwatola OA et al. 2015. Measuring experience with end-of-life care: a systematic literature review. J. Pain Symptom Manag. 49:5904–15
    [Google Scholar]
  77. Loggers ET, Maciejewski PK, Paulk E, DeSanto-Madeya S, Nilsson M et al. 2009. Racial differences in predictors of intensive end-of-life care in patients with advanced cancer. J. Clin. Oncol. 27:5559–64
    [Google Scholar]
  78. Lunney JR, Foley KM, Smith TJ, Gelband H 2003a. Describing Death in America: What We Need to Know Washington, DC: Natl. Acad. Press
  79. Lunney JR, Lynn J, Foley DJ, Lipson S, Guralnik JM 2003b. Patterns of functional decline at the end of life. JAMA 289:182387–92
    [Google Scholar]
  80. Luth EA. 2017. A case for death as equalizer: fundamental causes as non-predictors of multidimensional end-of-life care quality PhD Diss., Rutgers Univ New Brunswick, NJ:
  81. Luth EA, Prigerson HG. 2018. Unintended harm? Race differences in the relationship between advance care planning and psychological distress at the end-of-life. J. Pain Symptom Manag. 56:5752–59
    [Google Scholar]
  82. Mack JW, Paulk M, Viswanath K, Prigerson HG 2010. Racial disparities in the outcomes of communication on medical care received near death. Arch. Intern. Med. 170:1533–40
    [Google Scholar]
  83. Manning WD, Brown SL. 2011. The demography of unions among older Americans, 1980–present: a family change approach. Handbook of Sociology of Aging RA Settersten, JL Angel 193–210 New York: Springer
    [Google Scholar]
  84. Matsuyama RK, Balliet W, Ingram K, Lyckholm LJ, Wilson-Genderson M, Smith TJ 2011. Will patients want hospice or palliative care if they do not know what it is?. J. Hosp. Palliat. Nurs. 13:41–46
    [Google Scholar]
  85. McPherson CJ, Addington-Hall JM. 2003. Judging the quality of care at the end of life: Can proxies provide reliable information?. Soc. Sci. Med. 56:195–109
    [Google Scholar]
  86. Meghani SH, Byun E, Gallagher RM 2012. Time to take stock: a meta-analysis and systematic review of analgesic treatment disparities for pain in the United States. Pain Med 13:2150–74
    [Google Scholar]
  87. Meier DE. 2010. The development, status, and future of palliative care. Palliative Care: Transforming the Care of Serious Illness DE Meier, SL Isaacs, RG Hughes 3–76 San Francisco: Jossey-Bass
    [Google Scholar]
  88. Meier EA, Gallegos JV, Thomas LPM, Depp CA, Irwin SA, Jeste DV 2016. Defining a good death (successful dying): literature review and a call for research and public dialogue. Am. J. Geriatr. Psychiatry 24:4261–71
    [Google Scholar]
  89. Miller SC, Mor V, Teno JM 2003. Hospice enrollment and pain assessment and management in nursing homes. J. Pain Symptom Manag. 26:3791–99
    [Google Scholar]
  90. Mintz S. 2004. Huck's Raft: A History of American Childhood Cambridge, MA: Harvard Univ. Press
  91. Moorman SM, Carr D, Boerner K 2014. The role of relationship biography in advance care planning. J. Aging Health 26:6969–92
    [Google Scholar]
  92. Morrison RS, Wallenstein S, Natale DK, Senzel RS, Huang LL 2000. “We don't carry that”—failure of pharmacies in predominantly nonwhite neighborhoods to stock opioid analgesics. New Engl. J. Med. 342:141023–26
    [Google Scholar]
  93. Murphy SL, Xu J, Kochanek KD, Curtin SC, Arias E 2017. Deaths: final data for 2015. Natl. Vital Stat. Rep. 66:6)
    [Google Scholar]
  94. Natl. Acad. Sci. Eng. Med 2016. Families caring for an aging America Rep., Natl. Acad. Sci. Eng. Med Washington, DC: Natl. Acad. Press https://doi.org/10.17226/23606
    [Crossref]
  95. Natl. Cent. Health Stat 2011. Health, United States, 2010: with special feature on death and dying US Dep. Health Hum Serv. Rep. 2011-1232, Natl. Cent. Health Stat Hyattsville, MD: https://www.cdc.gov/nchs/data/hus/hus10.pdf
  96. NHPCO (Natl. Hosp. Palliat. Care Organ.) 2010. Standards of Practice for Hospice Programs Alexandria, VA: NHPCO
  97. NHPCO (Natl. Hosp. Palliat. Care Organ.) 2018. Facts and figures: hospice care in America Rep., NHPCO Alexandria, VA: https://www.nhpco.org/sites/default/files/public/Statistics_Research/2017_Facts_Figures.pdf
  98. Nicholas LH, Langa KM, Iwashyna TJ, Weir DR 2011. Regional variation in the association between advance directives and end-of-life Medicare expenditures. JAMA 306:131447–53
    [Google Scholar]
  99. Olshansky SJ, Ault AB. 1986. The fourth stage of the epidemiologic transition: the age of delayed degenerative diseases. Milbank Q 64:3355–91
    [Google Scholar]
  100. Omran AR. 2005. The epidemiologic transition: a theory of the epidemiology of population change. Milbank Q 83:4731–57
    [Google Scholar]
  101. Patel KV, Guralnik JM, Dansie EJ, Turk DC 2013. Prevalence and impact of pain among older adults in the United States: findings from the 2011 National Health and Aging Trends Study. Pain 154:122649–57
    [Google Scholar]
  102. Pattison EM. 1977. The Experience of Dying Englewood Cliffs, NJ: Prentice-Hall
  103. Pew Res. Cent 2013. Views on end-of-life medical treatments Rep., Pew Res. Cent Washington, DC: http://www.pewresearch.org/wp-content/uploads/sites/7/2013/11/end-of-life-survey-report-full-pdf.pdf
  104. Pfeifer MP, Mitchell CK, Chamberlain L 2003. The value of disease severity in predicting patient readiness to address end-of-life issues. Arch. Intern. Med. 163:5609–12
    [Google Scholar]
  105. Phelan JC, Link BG, Tehranifar P 2010. Social conditions as fundamental causes of health inequalities: theory, evidence, and policy implications. J. Health Soc. Behav. 51:S28–40
    [Google Scholar]
  106. Phillips JA, Luth EA. 2018. Beliefs about suicide acceptability in the United States: How do they affect suicide mortality. J. Gerontol. Ser. B. https://doi.org/10.1093/geronb/gbx153
    [Crossref] [Google Scholar]
  107. Pres. Counc. Bioeth 2005. Taking care: ethical caregiving in our aging society Rep., Pres. Counc. Bioeth Washington, DC:
  108. Qaseem A, Snow V, Shekelle P, Casey DE, Cross JT, Owens DK 2008. Evidence-based interventions to improve the palliative care of pain, dyspnea, and depression at the end of life: a clinical practice guideline from the American College of Physicians. Ann. Intern. Med. 148:2141–46
    [Google Scholar]
  109. Quill TE. 2007. Physician assisted death in vulnerable populations. BMJ 335:7621625–26
    [Google Scholar]
  110. Rahman AN. 2017. Who knew? Hospice is a business. What that means for all of us. Gerontologist 57:112–18
    [Google Scholar]
  111. Rajkomar A, Oren E, Chen K, Dai AM, Hajaj N et al. 2018. Scalable and accurate deep learning with electronic health records. NPJ Digit. Med. 1:118
    [Google Scholar]
  112. Rao JK, Abraham LA, Anderson LA 2009. Novel approach, using end-of-life issues, for identifying items for public health surveillance. Prev. Chronic Dis. 6:2A57
    [Google Scholar]
  113. Reid VL, McDonald R, Nwosu AC, Mason SR, Probert C et al. 2017. A systematically structured review of biomarkers of dying in cancer patients in the last months of life; an exploration of the biology of dying. PLOS ONE 12:4e0175123
    [Google Scholar]
  114. Rhodes RL, Teno JM. 2009. What's race got to do with it?. J. Clin. Oncol. 27:335496–98
    [Google Scholar]
  115. Rhodes RL, Teno JM, Welch LC 2006. Access to hospice for African Americans: Are they informed about the option of hospice?. J. Palliat. Med. 9:268–72
    [Google Scholar]
  116. Rickerson E, Harrold J, Kapo J, Carroll JT, Casarett D 2005. Timing of hospice referral and families' perceptions of services: Are earlier hospice referrals better?. J. Am. Geriatr. Soc. 53:5819–23
    [Google Scholar]
  117. Sanders JJ, Robinson MT, Block SD 2016. Factors impacting advance care planning among African Americans: results of a systematic integrated review. J. Palliat. Med. 19:202–27
    [Google Scholar]
  118. Schafer MH, Ferraro KF. 2011. Childhood misfortune as a threat to successful aging: avoiding disease. Gerontologist 52:1111–20
    [Google Scholar]
  119. Schockett ER, Teno JM, Miller SC, Stuart B 2005. Late referral to hospice and bereaved family member perception of quality of end-of-life care. J. Pain Symptom Manag. 30:5400–7
    [Google Scholar]
  120. Sharma RK, Freedman VA, Mor V, Kasper JD, Gozalo P, Teno JM 2017. Association of racial differences with end-of-life care quality in the United States. JAMA Intern. Med. 177:1858–60
    [Google Scholar]
  121. Shneidman E. 1995. Voices of Death New York: Kodansha Int.
  122. Silveira MJ, Kim SY, Langa KM 2010. Advance directives and outcomes of surrogate decision making before death. New Engl. J. Med. 362:131211–18
    [Google Scholar]
  123. Silveira MJ, Wiitala W, Piette J 2014. Advance directive completion by elderly Americans: a decade of change. J. Am. Geriatr. Soc. 62:4706–10
    [Google Scholar]
  124. Simmons CP, McMillan DC, McWilliams K, Sande TA, Fearon KC et al. 2017. Prognostic tools in patients with advanced cancer: a systematic review. J. Pain Symptom Manag. 53:5962–70
    [Google Scholar]
  125. Singer PA, Martin DK, Kelner M 1999. Quality end-of-life care: patients' perspectives. JAMA 281:2163–68
    [Google Scholar]
  126. Smith AK, Glare P. 2016. Ethical issues in prognosis and prognostication. The Oxford Handbook of Ethics at the End of Life SJ Younger, RM Arnold 170–92 New York: Oxford Univ. Press
    [Google Scholar]
  127. Smith S, Newhouse JP, Freeland MS 2009. Income, insurance, and technology: Why does health spending outpace economic growth. Health Aff 28:51276–84
    [Google Scholar]
  128. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA 2000a. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 284:2476–81
    [Google Scholar]
  129. Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA 2000b. In search of a good death: observations of patients, families, and providers. Ann. Intern. Med. 132:10825–32
    [Google Scholar]
  130. Stevenson DG, Dalton JB, Grabowski DC, Huskamp HA 2015. Nearly half of all Medicare hospice enrollees received care from agencies owned by regional or national chains. Health Aff 34:130–38
    [Google Scholar]
  131. Suitor JJ, Gilligan M, Pillemer K, Fingerman KL, Kim K et al. 2017. Applying within-family differences approaches to enhance understanding of the complexity of intergenerational relations. J. Gerontol. Ser. B. 73:140–53
    [Google Scholar]
  132. Sykes N, Thorns A. 2003. The use of opioids and sedatives at the end of life. Lancet Oncol 4:5312–18
    [Google Scholar]
  133. Tait RC, Chibnall JT. 2014. Racial/ethnic disparities in the assessment and treatment of pain: psychosocial perspectives. Am. Psychol. 69:2131–41
    [Google Scholar]
  134. Teno JM, Casey VA, Welch LC, Edgman-Levitan S 2001. Patient-focused, family-centered end-of-life medical care: views of the guidelines and bereaved family members. J. Pain Symptom Manag. 22:738–51
    [Google Scholar]
  135. Teno JM, Freedman VA, Kasper JD, Gozalo P, Mor V 2015. Is care for the dying improving in the United States. J. Palliat. Med. 18:662–66
    [Google Scholar]
  136. Teno JM, Gozalo PL, Bynum JP, Leland NE, Miller SC et al. 2013. 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 309:5470–77
    [Google Scholar]
  137. Teno JM, Gozalo PL, Trivedi AN, Bunker J, Lima J et al. 2018. Site of death, place of care, and health care transitions among US Medicare beneficiaries, 2000–2015. JAMA 320:3264–71
    [Google Scholar]
  138. Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle T 2007. Association between advance directives and quality of end-of-life care: a national study. J. Am. Geriatr. Soc. 55:189–94
    [Google Scholar]
  139. Teno JM, Mitchell SL, Gozalo PL, Dosa D, Hsu A et al. 2010. Hospital characteristics associated with feeding tube placement in nursing home residents with advanced cognitive impairment. JAMA 303:6544–50
    [Google Scholar]
  140. van den Beuken-van Everdingen MHJ, de Rijke JM, Kessels AG, Schouten HC, van Kleef M, Patijn J 2007. Prevalence of pain in patients with cancer: a systematic review of the past 40 years. Ann. Oncol. 18:91437–49
    [Google Scholar]
  141. Warraich HJ. 2017. Modern Death: How Medicine Changed the End of Life New York: St. Martin's
  142. Warraich HJ, Allen LA, Mukamal KJ, Ship A, Kociol RD 2016. Accuracy of physician prognosis in heart failure and lung cancer: comparison between physician estimates and model predicted survival. Palliat. Med. 30:7684–89
    [Google Scholar]
  143. Wright AA, Zhang B, Ray A, Mack JW, Trice E et al. 2008. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 300:1665–73
    [Google Scholar]
  144. Xu J, Murphy SL, Kochanek KD, Bastian BA 2016. Deaths: final data for 2013. Natl. Vital Stat. Rep. 64:2)
    [Google Scholar]
  145. Yadav KN, Gabler NB, Cooney E, Kent S, Kim J et al. 2017. Approximately one in three US adults completes any type of advance directive for end-of-life care. Health Aff 36:71244–51
    [Google Scholar]
  146. Zimmer Z, Rubin S. 2016. Life expectancy with and without pain in the US elderly population. J. Gerontol. Ser. A Biomed. Sci. Med. Sci. 71:91171–76
    [Google Scholar]
/content/journals/10.1146/annurev-soc-073018-022524
Loading
  • Article Type: Review Article
This is a required field
Please enter a valid email address
Approval was a Success
Invalid data
An Error Occurred
Approval was partially successful, following selected items could not be processed due to error