Trends in Advance Care Planning in Patients With Cancer: Results From a National Longitudinal Survey | Oncology | JAMA Oncology | JAMA Network
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Institute of Medicine.  Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press; 2014.
Centers for Disease Control and Prevention. Leading causes of death. Accessed December 1, 2014.
Teno  JM, Weitzen  S, Fennell  ML, Mor  V.  Dying trajectory in the last year of life: does cancer trajectory fit other diseases?  J Palliat Med. 2001;4(4):457-464.PubMedGoogle ScholarCrossref
Lunney  JR, Lynn  J, Foley  DJ, Lipson  S, Guralnik  JM.  Patterns of functional decline at the end of life.  JAMA. 2003;289(18):2387-2392.PubMedGoogle ScholarCrossref
Levy  MH, Weinstein  SM, Carducci  MA; NCCN Palliative Care Practice Guidelines Panel.  NCCN: Palliative care.  Cancer Control. 2001;8(6)(suppl 2):66-71.PubMedGoogle Scholar
American Society of Clinical Oncology.  Cancer care during the last phase of life.  J Clin Oncol. 1998;16(5):1986-1996.PubMedGoogle Scholar
Peppercorn  JM, Smith  TJ, Helft  PR,  et al; American Society of Clinical Oncology.  American society of clinical oncology statement: toward individualized care for patients with advanced cancer.  J Clin Oncol. 2011;29(6):755-760.PubMedGoogle ScholarCrossref
Levy  MH, Smith  T, Alvarez-Perez  A,  et al.  Palliative care, Version 1.2014: featured updates to the NCCN Guidelines.  J Natl Compr Canc Netw. 2014;12(10):1379-1388.PubMedGoogle Scholar
Morden  NE, Chang  CH, Jacobson  JO,  et al.  End-of-life care for Medicare beneficiaries with cancer is highly intensive overall and varies widely.  Health Aff (Millwood). 2012;31(4):786-796.PubMedGoogle ScholarCrossref
Teno  JM, Gozalo  PL, Bynum  JP,  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):470-477.PubMedGoogle ScholarCrossref
Goodman  DC, Fisher  ES, Chang  C,  et al.  Quality of end-of-life cancer care for Medicare beneficiaries: Regional and hospital-specific analyses: a report of the Dartmouth Atlas Project. Accessed May 26, 2015.
Goodman  D, Morden  N, Chang  C, Fisher  E, Wennberg  J.  Trends in cancer care near the end of life: a Dartmouth Atlas health care brief. Accessed May 26, 2014.
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):548-554.PubMedGoogle ScholarCrossref
Anthony  DL, Herndon  MB, Gallagher  PM,  et al.  How much do patients’ preferences contribute to resource use?  Health Aff (Millwood). 2009;28(3):864-873.PubMedGoogle ScholarCrossref
Earle  CC, Neville  BA, Landrum  MB, Ayanian  JZ, Block  SD, Weeks  JC.  Trends in the aggressiveness of cancer care near the end of life.  J Clin Oncol. 2004;22(2):315-321.PubMedGoogle ScholarCrossref
Barnato  AE, Chang  CC, Farrell  MH, Lave  JR, Roberts  MS, Angus  DC.  Is survival better at hospitals with higher “end-of-life” treatment intensity?  Med Care. 2010;48(2):125-132.PubMedGoogle ScholarCrossref
Brooks  GA, Li  L, Sharma  DB,  et al.  Regional variation in spending and survival for older adults with advanced cancer.  J Natl Cancer Inst. 2013;105(9):634-642.PubMedGoogle ScholarCrossref
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(14):1665-1673.PubMedGoogle ScholarCrossref
Wright  AA, Hatfield  LA, Earle  CC, Keating  NL.  End-of-life care for older patients with ovarian cancer is intensive despite high rates of hospice use.  J Clin Oncol. 2014;32(31):3534-3539.PubMedGoogle ScholarCrossref
Zhang  B, Wright  AA, Huskamp  HA,  et al.  Health care costs in the last week of life: associations with end-of-life conversations.  Arch Intern Med. 2009;169(5):480-488.PubMedGoogle ScholarCrossref
Juster  FT, Suzman  R.  An overview of the Health and Retirement Study.  J Hum Resour. 1995;30(suppl):S7-S56.Google ScholarCrossref
Sonnega  A, Faul  JD, Ofstedal  MB, Langa  KM, Phillips  JW, Weir  DR.  Cohort profile: the Health and Retirement Study (HRS).  Int J Epidemiol. 2014;43(2):576-585.PubMedGoogle ScholarCrossref
 Health and Retirement Study: sample sizes and response rates. Accessed December 1, 2014.
Wright  AA, Keating  NL, Balboni  TA, Matulonis  UA, Block  SD, Prigerson  HG.  Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers’ mental health.  J Clin Oncol. 2010;28(29):4457-4464.PubMedGoogle ScholarCrossref
Silveira  MJ, Kim  SY, Langa  KM.  Advance directives and outcomes of surrogate decision making before death.  N Engl J Med. 2010;362(13):1211-1218.PubMedGoogle ScholarCrossref
Nicholas  LH, Langa  KM, Iwashyna  TJ, Weir  DR.  Regional variation in the association between advance directives and end-of-life Medicare expenditures.  JAMA. 2011;306(13):1447-1453.PubMedGoogle ScholarCrossref
Heeringa  S, Connor  J.  Technical Description of the Health and Retirement Study Sample Design. Ann Arbor, MI: University of Michigan, Survey Research Center at the Institute for Social Research; 2011.
US Census Bureau.  Current Population Survey. Accessed December 1, 2014.
Kerr  CW, Donohue  KA, Tangeman  JC,  et al.  Cost savings and enhanced hospice enrollment with a home-based palliative care program implemented as a hospice-private payer partnership.  J Palliat Med. 2014;17(12):1328-1335.PubMedGoogle ScholarCrossref
Kelly  RJ, Smith  TJ.  Delivering maximum clinical benefit at an affordable price: engaging stakeholders in cancer care.  Lancet Oncol. 2014;15(3):e112-e118.PubMedGoogle ScholarCrossref
Ahluwalia  SC, Chuang  FL, Antonio  AL, Malin  JL, Lorenz  KA, Walling  AM.  Documentation and discussion of preferences for care among patients with advanced cancer.  J Oncol Pract. 2011;7(6):361-366.PubMedGoogle ScholarCrossref
Mack  JW, Weeks  JC, Wright  AA, Block  SD, Prigerson  HG.  End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences.  J Clin Oncol. 2010;28(7):1203-1208.PubMedGoogle ScholarCrossref
Mack  JW, Cronin  A, Keating  NL,  et al.  Associations between end-of-life discussion characteristics and care received near death: a prospective cohort study.  J Clin Oncol. 2012;30(35):4387-4395.PubMedGoogle ScholarCrossref
Bisognano  M, Goodman  E.  Engaging patients and their loved ones in the ultimate conversation.  Health Aff (Millwood). 2013;32(2):203-206.PubMedGoogle ScholarCrossref
Gundersen Health System.  Respecting Choices advance care planning. Accessed December 1, 2014.
Personalize Your Care Act of 2013. H.R.1173, 113th Congress, 1st Session (2013).
Medicare Choices Empowerment and Protection Act. S 2240, 113th Congress, 2nd Session (2014).
Vig  EK, Taylor  JS, Starks  H, Hopley  EK, Fryer-Edwards  K.  Beyond substituted judgment: How surrogates navigate end-of-life decision-making.  J Am Geriatr Soc. 2006;54(11):1688-1693.PubMedGoogle ScholarCrossref
Vig  EK, Starks  H, Taylor  JS, Hopley  EK, Fryer-Edwards  K.  Surviving surrogate decision-making: what helps and hampers the experience of making medical decisions for others.  J Gen Intern Med. 2007;22(9):1274-1279.PubMedGoogle ScholarCrossref
Fried  TR, O’Leary  JR.  Using the experiences of bereaved caregivers to inform patient- and caregiver-centered advance care planning.  J Gen Intern Med. 2008;23(10):1602-1607.PubMedGoogle ScholarCrossref
Schenker  Y, White  DB, Arnold  RM.  What should be the goal of advance care planning?  JAMA Intern Med. 2014;174(7):1093-1094.PubMedGoogle ScholarCrossref
Schenker  Y, Barnato  A.  Expanding support for “upstream” surrogate decision making in the hospital.  JAMA Intern Med. 2014;174(3):377-379.PubMedGoogle ScholarCrossref
Song  MK, Kirchhoff  KT, Douglas  J, Ward  S, Hammes  B.  A randomized, controlled trial to improve advance care planning among patients undergoing cardiac surgery.  Med Care. 2005;43(10):1049-1053.PubMedGoogle ScholarCrossref
Kirchhoff  KT, Hammes  BJ, Kehl  KA, Briggs  LA, Brown  RL.  Effect of a disease-specific planning intervention on surrogate understanding of patient goals for future medical treatment.  J Am Geriatr Soc. 2010;58(7):1233-1240.PubMedGoogle ScholarCrossref
Gillick  MR.  The critical role of caregivers in achieving patient-centered care.  JAMA. 2013;310(6):575-576.PubMedGoogle ScholarCrossref
Rocque  GB, Barnett  AE, Illig  LC,  et al.  Inpatient hospitalization of oncology patients: are we missing an opportunity for end-of-life care?  J Oncol Pract. 2013;9(1):51-54.PubMedGoogle ScholarCrossref
Obermeyer  Z, Makar  M, Abujaber  S, Dominici  F, Block  S, Cutler  DM.  Association between the Medicare hospice benefit and health care utilization and costs for patients with poor-prognosis cancer.  JAMA. 2014;312(18):1888-1896.PubMedGoogle ScholarCrossref
Hui  D, Elsayem  A, De la Cruz  M,  et al.  Availability and integration of palliative care at US cancer centers.  JAMA. 2010;303(11):1054-1061.PubMedGoogle ScholarCrossref
Hui  D, Kim  SH, Roquemore  J, Dev  R, Chisholm  G, Bruera  E.  Impact of timing and setting of palliative care referral on quality of end-of-life care in cancer patients.  Cancer. 2014;120(11):1743-1749.PubMedGoogle ScholarCrossref
Lopez-Acevedo  M, Havrilesky  LJ, Broadwater  G,  et al.  Timing of end-of-life care discussion with performance on end-of-life quality indicators in ovarian cancer.  Gynecol Oncol. 2013;130(1):156-161.PubMedGoogle ScholarCrossref
Smith  AK, Earle  CC, McCarthy  EP.  Racial and ethnic differences in end-of-life care in fee-for-service Medicare beneficiaries with advanced cancer.  J Am Geriatr Soc. 2009;57(1):153-158.PubMedGoogle ScholarCrossref
Loggers  ET, Maciejewski  PK, Paulk  E,  et al.  Racial differences in predictors of intensive end-of-life care in patients with advanced cancer.  J Clin Oncol. 2009;27(33):5559-5564.PubMedGoogle ScholarCrossref
Phelps  AC, Maciejewski  PK, Nilsson  M,  et al.  Religious coping and use of intensive life-prolonging care near death in patients with advanced cancer.  JAMA. 2009;301(11):1140-1147.PubMedGoogle ScholarCrossref
Fischer  SM, Sauaia  A, Min  SJ, Kutner  J.  Advance directive discussions: lost in translation or lost opportunities?  J Palliat Med. 2012;15(1):86-92.PubMedGoogle ScholarCrossref
US Department of Health and Human Services.  Administration on Aging: a profile of older Americans. Accessed December 1, 2014.
Garrido  MM, Harrington  ST, Prigerson  HG.  End-of-life treatment preferences: a key to reducing ethnic/racial disparities in advance care planning?  Cancer. 2014;120(24):3981-3986.PubMedGoogle ScholarCrossref
Teno  JM.  Measuring end-of-life care outcomes retrospectively.  J Palliat Med. 2005;8(suppl 1):S42-S49.PubMedGoogle ScholarCrossref
McPherson  CJ, Addington-Hall  JM.  Judging the quality of care at the end of life: can proxies provide reliable information?  Soc Sci Med. 2003;56(1):95-109.PubMedGoogle ScholarCrossref
Bischoff  KE, Sudore  R, Miao  Y, Boscardin  WJ, Smith  AK.  Advance care planning and the quality of end-of-life care in older adults.  J Am Geriatr Soc. 2013;61(2):209-214.PubMedGoogle ScholarCrossref
Tang  ST, McCorkle  R.  Use of family proxies in quality of life research for cancer patients at the end of life: a literature review.  Cancer Invest. 2002;20(7-8):1086-1104.PubMedGoogle ScholarCrossref
Original Investigation
August 2015

Trends in Advance Care Planning in Patients With Cancer: Results From a National Longitudinal Survey

Author Affiliations
  • 1Department of Radiation Oncology and Molecular Radiation Sciences, Johns Hopkins School of Medicine, Baltimore, Maryland
  • 2Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts
  • 3Harvard Medical School, Boston, Massachusetts
  • 4Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
  • 5Department of Surgery, Johns Hopkins School of Medicine, Baltimore, Maryland
JAMA Oncol. 2015;1(5):601-608. doi:10.1001/jamaoncol.2015.1976

Importance  Advance care planning (ACP) may prevent end-of-life (EOL) care that is nonbeneficial and discordant with patient wishes. Despite long-standing recognition of the merits of ACP in oncology, it is unclear whether participation in ACP by patients with cancer has increased over time.

Objectives  To characterize trends in durable power of attorney (DPOA) assignment, living will creation, and participation in discussions of EOL care preferences and to explore associations between ACP subtypes and EOL treatment intensity as reflected in EOL care decisions and terminal hospitalizations.

Design, Setting, and Participants  We analyzed prospectively collected survey data from 1985 next-of-kin surrogates of Health and Retirement Study (HRS) participants with cancer who died between 2000 and 2012, including data from in-depth “exit” interviews conducted with the surrogates after the participant’s death. The HRS is a nationally representative, biennial, longitudinal panel study of US residents older than 50 years. Trends in ACP subtypes were tested, and multivariable logistic regression models examined for associations between ACP subtypes and measures of treatment intensity.

Main Outcomes and Measures  Trends in the surrogate-reported frequency of DPOA assignment, living will creation, and participation in discussions of EOL care preferences; associations between ACP subtypes and both surrogate-reported EOL care decisions and terminal hospitalizations.

Results  From 2000 to 2012, there was an increase in DPOA assignment (52% to 74%, P = .03), without significant change in use of living wills (49% to 40%, P = .63) or EOL discussions (68% to 60%, P = .62). Surrogate reports that patients received “all care possible” at EOL increased during the period (7% to 58%, P = .004), and rates of terminal hospitalizations were unchanged (29% to 27%, P = .70). Limiting or withholding treatment was associated with living wills (adjusted odds ratio [AOR], 2.51; 95% CI, 1.53-4.11; P < .001) and EOL discussions (AOR, 1.93; 95% CI, 1.53-3.14; P = .002) but not with DPOA assignment.

Conclusions and Relevance  Use of DPOA increased significantly between 2000 and 2012 but was not associated with EOL care decisions. Importantly, there was no growth in key ACP domains such as discussions of care preferences. Efforts that bolster communication of EOL care preferences and also incorporate surrogate decision makers are critically needed to ensure receipt of goal-concordant care.