Skip to main content

Part of the book series: Respiratory Medicine ((RM))

Abstract

High-quality end-of-life care should be available to all individuals faced with a terminal illness. Essential components of quality end-of-life care include excellent communication, creation of a supportive environment for dying patients and their family members, and concerted efforts to address pain and suffering at the end of life. Each of these elements of care must be grounded in the individual patient’s values, goals, preferences, and needs. Importantly, these values, goals, preferences, and needs may vary based on patient characteristics such as gender, race/ethnicity, socioeconomic status, sexuality, or underlying illness. It is important that we identify and respect differences in informed patients’ values and preferences. However, we should strive to eradicate differences based on inequities in the way end-of-life care is discussed or delivered. In this chapter, we examine differences in end-of-life care across these important patient characteristics and identify areas in which differences may represent healthcare disparities.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 89.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 119.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 169.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. Mularski RA, Curtis JR, Billings JA, et al. Proposed quality measures for palliative care in the critically ill: a consensus from the Robert Wood Johnson Foundation Critical Care Workgroup. Crit Care Med. 2006;34(11 Suppl):S404–11.

    Article  PubMed  Google Scholar 

  2. Miesfeldt S, Murray K, Lucas L, Chang CH, Goodman D, Morden NE. Association of age, gender, and race with intensity of end-of-life care for Medicare beneficiaries with cancer. J Palliat Med. 2012;15(5):548–54.

    Article  PubMed  PubMed Central  Google Scholar 

  3. Lackan NA, Ostir GV, Freeman JL, Mahnken JD, Goodwin JS. Decreasing variation in the use of hospice among older adults with breast, colorectal, lung, and prostate cancer. Med Care. 2004;42(2):116–22.

    Article  PubMed  Google Scholar 

  4. Keating NL, Herrinton LJ, Zaslavsky AM, Liu L, Ayanian JZ. Variations in hospice use among cancer patients. J Natl Cancer Inst. 2006;98(15):1053–9.

    Article  PubMed  Google Scholar 

  5. Connor SR, Elwert F, Spence C, Christakis NA. Geographic variation in hospice use in the United States in 2002. J Pain Symptom Manage. 2007;34(3):277–85.

    Article  PubMed  Google Scholar 

  6. duPreez AE, Smith MA, Liou JI, et al. Predictors of hospice utilization among acute stroke patients who died within thirty days. J Palliat Med. 2008;11(9):1249–57.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Arias E. United States life tables, 2007. Natl Vital Stat Rep. 2011;59(9):1–60.

    PubMed  Google Scholar 

  8. Lee SJ, Go AS, Lindquist K, Bertenthal D, Covinsky KE. Chronic conditions and mortality among the oldest old. Am J Public Health. 2008;98(7):1209–14.

    Article  PubMed  PubMed Central  Google Scholar 

  9. Ferrucci L, Guralnik JM, Simonsick E, Salive ME, Corti C, Langlois J. Progressive versus catastrophic disability: a longitudinal view of the disablement process. J Gerontol A Biol Med Sci. 1996;51(3):M123–30.

    Article  CAS  Google Scholar 

  10. Tiainen K, Luukkaala T, Hervonen A, Jylha M. Predictors of mortality in men and women aged 90 and older: a nine-year follow-up study in the vitality 90+ study. Age Ageing. 2013;42(4):468–75.

    Article  PubMed  Google Scholar 

  11. Wachterman MW, Sommers BD. The impact of gender and marital status on end-of-life care: evidence from the National Mortality Follow-Back Survey. J Palliat Med. 2006;9(2):343–52.

    Article  PubMed  Google Scholar 

  12. Emanuel EJ, Fairclough DL, Slutsman J, Alpert H, Baldwin D, Emanuel LL. Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients. N Engl J Med. 1999;341(13):956–63.

    Article  CAS  PubMed  Google Scholar 

  13. Jones AL, Harris-Kojetin L, Valverde R. Characteristics and use of home health care by men and women aged 65 and over. Natl Health Stat Rep. 2012;52:1–7.

    Google Scholar 

  14. Shugarman LR, Bird CE, Schuster CR, Lynn J. Age and gender differences in medicare expenditures and service utilization at the end of life for lung cancer decedents. Womens Health Issues. 2008;18(3):199–209.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Gomes B, Higginson IJ. Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ. 2006;332(7540):515–21.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Brazil K, Thabane L, Foster G, Bedard M. Gender differences among Canadian spousal caregivers at the end of life. Health Soc Care Community. 2009;17(2):159–66.

    Article  PubMed  Google Scholar 

  17. Fromme EK, Drach LL, Tolle SW, et al. Men as caregivers at the end of life. J Palliat Med. 2005;8(6):1167–75.

    Article  PubMed  Google Scholar 

  18. Bookwala J, Coppola KM, Fagerlin A, Ditto PH, Danks JH, Smucker WD. Gender differences in older adults’ preferences for life-sustaining medical treatments and end-of-life values. Death Stud. 2001;25(2):127–49.

    Article  CAS  PubMed  Google Scholar 

  19. Webb NM, Tucker D. Young adults’ opinions about hospice and home death. J Palliat Med. 2009;12(4):337–42.

    Article  PubMed  Google Scholar 

  20. Perkins HS, Cortez JD, Hazuda HP. Advance care planning: does patient gender make a difference? Am J Med Sci. 2004;327(1):25–32.

    Article  PubMed  Google Scholar 

  21. Fletcher K, Prigerson HG, Paulk E, et al. Gender differences in the evolution of illness understanding among patients with advanced cancer. J Support Oncol. 2013;11(3):126–32.

    Article  PubMed  PubMed Central  Google Scholar 

  22. Richardson DK, Zive DM, Newgard CD. End-of-life decision-making for patients admitted through the emergency department: hospital variability, patient demographics, and changes over time. Acad Emerg Med. 2013;20(4):381–7.

    Article  PubMed  Google Scholar 

  23. Johnson RW, Newby LK, Granger CB, et al. Differences in level of care at the end of life according to race. Am J Crit Care. 2010;19(4):335–43; quiz 344.

    Article  PubMed  PubMed Central  Google Scholar 

  24. Muni S, Engelberg RA, Treece PD, Dotolo D, Curtis JR. The influence of race/ethnicity and socioeconomic status on end-of-life care in the ICU. Chest. 2011;139(5):1025–33.

    Article  PubMed  PubMed Central  Google Scholar 

  25. Cohen LL. Racial/ethnic disparities in hospice care: a systematic review. J Palliat Med. 2008;11(5):763–8.

    Article  PubMed  Google Scholar 

  26. Hardy D, Chan W, Liu CC, et al. Racial disparities in the use of hospice services according to geographic residence and socioeconomic status in an elderly cohort with nonsmall cell lung cancer. Cancer. 2011;117(7):1506–15.

    Article  PubMed  Google Scholar 

  27. Johnson KS, Kuchibhatla M, Tanis D, Tulsky JA. Racial differences in hospice revocation to pursue aggressive care. Arch Intern Med. 2008;168(2):218–24.

    Article  PubMed  Google Scholar 

  28. Kapo J, MacMoran H, Casarett D. “Lost to follow-up”: ethnic disparities in continuity of hospice care at the end of life. J Palliat Med. 2005;8(3):603–8.

    Article  PubMed  Google Scholar 

  29. Hanchate A, Kronman AC, Young-Xu Y, Ash AS, Emanuel E. Racial and ethnic differences in end-of-life costs: why do minorities cost more than whites? Arch Intern Med. 2009;169(5):493–501.

    Article  PubMed  PubMed Central  Google Scholar 

  30. Cooper-Patrick L, Gallo JJ, Gonzales JJ, et al. Race, gender, and partnership in the patient-physician relationship. JAMA. 1999;282(6):583–9.

    Article  CAS  PubMed  Google Scholar 

  31. Gordon HS, Street Jr RL, Sharf BF, Souchek J. Racial differences in doctors’ information-giving and patients’ participation. Cancer. 2006;107(6):1313–20.

    Article  PubMed  Google Scholar 

  32. Welch LC, Teno JM, Mor V. End-of-life care in black and white: race matters for medical care of dying patients and their families. J Am Geriatr Soc. 2005;53(7):1145–53.

    Article  PubMed  Google Scholar 

  33. Borum ML, Lynn J, Zhong Z. The effects of patient race on outcomes in seriously ill patients in SUPPORT: an overview of economic impact, medical intervention, and end-of-life decisions. Study to understand prognoses and preferences for outcomes and risks of treatments. J Am Geriatr Soc. 2000;48(5 Suppl):S194–8.

    Article  CAS  PubMed  Google Scholar 

  34. Murphy ST, Palmer JM, Azen S, Frank G, Michel V, Blackhall LJ. Ethnicity and advance care directives. J Law Med Ethics. 1996;24(2):108–17.

    Article  CAS  PubMed  Google Scholar 

  35. Degenholtz HB, Thomas SB, Miller MJ. Race and the intensive care unit: disparities and preferences for end-of-life care. Crit Care Med. 2003;31(5 Suppl):S373–8.

    Article  PubMed  Google Scholar 

  36. Barnato AE, Anthony DL, Skinner J, Gallagher PM, Fisher ES. Racial and ethnic differences in preferences for end-of-life treatment. J Gen Intern Med. 2009;24(6):695–701.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Krakauer EL, Crenner C, Fox K. Barriers to optimum end-of-life care for minority patients. J Am Geriatr Soc. 2002;50(1):182–90.

    Article  PubMed  Google Scholar 

  38. Born W, Greiner KA, Sylvia E, Butler J, Ahluwalia JS. Knowledge, attitudes, and beliefs about end-of-life care among inner-city African Americans and Latinos. J Palliat Med. 2004;7(2):247–56.

    Article  PubMed  Google Scholar 

  39. Blackhall LJ, Frank G, Murphy ST, Michel V, Palmer JM, Azen SP. Ethnicity and attitudes towards life sustaining technology. Soc Sci Med. 1999;48(12):1779–89.

    Article  CAS  PubMed  Google Scholar 

  40. Waters CM. Understanding and supporting African Americans’ perspectives of end-of-life care planning and decision making. Qual Health Res. 2001;11(3):385–98.

    Article  CAS  PubMed  Google Scholar 

  41. Wicher CP, Meeker MA. What influences African American end-of-life preferences? J Health Care Poor Underserved. 2012;23(1):28–58.

    Article  PubMed  Google Scholar 

  42. Kwak J, Haley WE. Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist. 2005;45(5):634–41.

    Article  PubMed  Google Scholar 

  43. Hopp FP, Duffy SA. Racial variations in end-of-life care. J Am Geriatr Soc. 2000;48(6):658–63.

    Article  CAS  PubMed  Google Scholar 

  44. Phipps E, True G, Harris D, et al. Approaching the end of life: attitudes, preferences, and behaviors of African-American and white patients and their family caregivers. J Clin Oncol. 2003;21(3):549–54.

    Article  PubMed  Google Scholar 

  45. Johnson KS, Kuchibhatla M, Tulsky JA. What explains racial differences in the use of advance directives and attitudes toward hospice care? J Am Geriatr Soc. 2008;56(10):1953–8.

    Article  PubMed  PubMed Central  Google Scholar 

  46. Kiely DK, Mitchell SL, Marlow A, Murphy KM, Morris JN. Racial and state differences in the designation of advance directives in nursing home residents. J Am Geriatr Soc. 2001;49(10):1346–52.

    Article  CAS  PubMed  Google Scholar 

  47. Degenholtz HB, Arnold RA, Meisel A, Lave JR. Persistence of racial disparities in advance care plan documents among nursing home residents. J Am Geriatr Soc. 2002;50(2):378–81.

    Article  PubMed  Google Scholar 

  48. Reynolds KS, Hanson LC, Henderson M, Steinhauser KE. End-of-life care in nursing home settings: do race or age matter? Palliat Support Care. 2008;6(1):21–7.

    Article  PubMed  Google Scholar 

  49. Frahm KA, Brown LM, Hyer K. Racial disparities in end-of-life planning and services for deceased nursing home residents. J Am Med Dir Assoc. 2012;13(9):819.e7–11.

    Article  Google Scholar 

  50. Mack JW, Paulk ME, Viswanath K, Prigerson HG. Racial disparities in the outcomes of communication on medical care received near death. Arch Intern Med. 2010;170(17):1533–40.

    Article  PubMed  PubMed Central  Google Scholar 

  51. Crawley L, Payne R, Bolden J, Payne T, Washington P, Williams S. Palliative and end-of-life care in the African American community. JAMA. 2000;284(19):2518–21.

    Article  CAS  PubMed  Google Scholar 

  52. Yancu CN, Farmer DF, Leahman D. Barriers to hospice use and palliative care services use by African American adults. Am J Hosp Palliat Care. 2010;27(4):248–53.

    Article  PubMed  Google Scholar 

  53. Rhodes RL, Teno JM, Welch LC. Access to hospice for African Americans: are they informed about the option of hospice? J Palliat Med. 2006;9(2):268–72.

    Article  PubMed  Google Scholar 

  54. Benton K, Stephens J, Vogel R, et al. The influence of race on end-of-life choices following a counselor-based palliative consultation. Am J Hosp Palliat Care. 2015;32:84–9.

    Article  PubMed  Google Scholar 

  55. Wagstaff A. Poverty and health sector inequalities. Bull World Health Organ. 2002;80(2):97–105.

    PubMed  PubMed Central  Google Scholar 

  56. Lewis JM, DiGiacomo M, Currow DC, Davidson PM. Dying in the margins: understanding palliative care and socioeconomic deprivation in the developed world. J Pain Symptom Manage. 2011;42(1):105–18.

    Article  PubMed  Google Scholar 

  57. Rhodes RL, Xuan L, Paulk ME, Stieglitz H, Halm EA. An examination of end-of-life care in a safety net hospital system: a decade in review. J Health Care Poor Underserved. 2013;24(4):1666–75.

    Article  PubMed  Google Scholar 

  58. Mack JW, Chen K, Boscoe FP, et al. Underuse of hospice care by Medicaid-insured patients with stage IV lung cancer in New York and California. J Clin Oncol. 2013;31(20):2569–79.

    Article  PubMed  PubMed Central  Google Scholar 

  59. Grande GE, Addington-Hall JM, Todd CJ. Place of death and access to home care services: are certain patient groups at a disadvantage? Soc Sci Med. 1998;47(5):565–79.

    Article  CAS  PubMed  Google Scholar 

  60. Barclay JS, Kuchibhatla M, Tulsky JA, Johnson KS. Association of hospice patients’ income and care level with place of death. JAMA Intern Med. 2013;173(6):450–6.

    Article  PubMed  PubMed Central  Google Scholar 

  61. 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.

    Article  CAS  PubMed  Google Scholar 

  62. Carr D. The social stratification of older adults’ preparations for end-of-life health care. J Health Soc Behav. 2012;53(3):297–312.

    Article  PubMed  Google Scholar 

  63. Rao JK, Anderson LA, Lin FC, Laux JP. Completion of advance directives among U.S. consumers. Am J Prev Med. 2014;46(1):65–70.

    Article  PubMed  PubMed Central  Google Scholar 

  64. Sudore RL, Mehta KM, Simonsick EM, et al. Limited literacy in older people and disparities in health and healthcare access. J Am Geriatr Soc. 2006;54(5):770–6.

    Article  PubMed  Google Scholar 

  65. Castillo LS, Williams BA, Hooper SM, Sabatino CP, Weithorn LA, Sudore RL. Lost in translation: the unintended consequences of advance directive law on clinical care. Ann Intern Med. 2011;154(2):121–8.

    Article  PubMed  PubMed Central  Google Scholar 

  66. Volandes AE, Paasche-Orlow M, Gillick MR, et al. Health literacy not race predicts end-of-life care preferences. J Palliat Med. 2008;11(5):754–62.

    Article  PubMed  Google Scholar 

  67. Volandes AE, Barry MJ, Chang Y, Paasche-Orlow MK. Improving decision making at the end of life with video images. Med Decis Making. 2010;30(1):29–34.

    Article  PubMed  Google Scholar 

  68. Smolinski KM, Colon Y. Silent voices and invisible walls: exploring end of life care with lesbians and gay men. J Psychosoc Oncol. 2006;24(1):51–64.

    Article  PubMed  Google Scholar 

  69. Hash KM, Netting FE. Long-term planning and decision-making among midlife and older gay men and lesbians. J Soc Work End Life Palliat Care. 2007;3(2):59–77.

    Article  PubMed  Google Scholar 

  70. Labella A, Singh D. Turning loss into legislation. Am J Public Health. 2008;98(6):971–3.

    Article  PubMed  PubMed Central  Google Scholar 

  71. Wahlert L, Fiester A. A false sense of security: lesbian, gay, bisexual, and transgender (LGBT) surrogate health care decision-making rights. J Am Board Fam Med. 2013;26(6):802–4.

    Article  PubMed  Google Scholar 

  72. Harding R, Epiphaniou E, Chidgey-Clark J. Needs, experiences, and preferences of sexual minorities for end-of-life care and palliative care: a systematic review. J Palliat Med. 2012;15(5):602–11.

    Article  PubMed  Google Scholar 

  73. Wachter RM, Luce JM, Hearst N, Lo B. Decisions about resuscitation: inequities among patients with different diseases but similar prognoses. Ann Intern Med. 1989;111(6):525–32.

    Article  CAS  PubMed  Google Scholar 

  74. Gore JM, Brophy CJ, Greenstone MA. How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax. 2000;55(12):1000–6.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  75. Lau KS, Tse DM, Tsan Chen TW, Lam PT, Lam WM, Chan KS. Comparing noncancer and cancer deaths in Hong Kong: a retrospective review. J Pain Symptom Manage. 2010;40(5):704–14.

    Article  PubMed  Google Scholar 

  76. Beernaert K, Cohen J, Deliens L, et al. Referral to palliative care in COPD and other chronic diseases: a population-based study. Respir Med. 2013;107(11):1731–9.

    Article  PubMed  Google Scholar 

  77. Evans N, Pasman HR, Donker GA, Deliens L, Van den Block L, Onwuteaka-Philipsen B. End-of-life care in general practice: a cross-sectional, retrospective survey of ‘cancer’, ‘organ failure’ and ‘old-age/dementia’ patients. Palliat Med. 2014;28:965–75.

    Article  PubMed  Google Scholar 

  78. Dalgaard KM, Bergenholtz H, Nielsen ME, Timm H. Early integration of palliative care in hospitals: a systematic review on methods, barriers, and outcome. Palliat Support Care. 2014;13:1–19.

    Google Scholar 

  79. Curtis JR, Wenrich MD, Carline JD, Shannon SE, Ambrozy DM, Ramsey PG. Patients’ perspectives on physician skill in end-of-life care: differences between patients with COPD, cancer, and AIDS. Chest. 2002;122(1):356–62.

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Ann C. Long M.D., M.S. .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2016 Springer International Publishing Switzerland

About this chapter

Cite this chapter

Long, A.C., Curtis, J.R. (2016). Health Disparities in End-of-Life Care. In: Gerald, L., Berry, C. (eds) Health Disparities in Respiratory Medicine. Respiratory Medicine. Humana Press, Cham. https://doi.org/10.1007/978-3-319-23675-9_15

Download citation

  • DOI: https://doi.org/10.1007/978-3-319-23675-9_15

  • Publisher Name: Humana Press, Cham

  • Print ISBN: 978-3-319-23674-2

  • Online ISBN: 978-3-319-23675-9

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics