Health System and Beneficiary Costs Associated With Intensive End-of-Life Medical Services | Critical Care Medicine | JAMA Network Open | JAMA Network
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Figure 1.  Health System Costs in the Last Month of Life due to Medically Intensive Services
Health System Costs in the Last Month of Life due to Medically Intensive Services

ED indicates emergency department; ICU, intensive care unit.

Figure 2.  Beneficiary Costs in the Last Month of Life Due to Medically Intensive Services
Beneficiary Costs in the Last Month of Life Due to Medically Intensive Services

ED indicates emergency department; ICU, intensive care unit.

Table 1.  Demographic Characteristics and Comorbidities
Demographic Characteristics and Comorbidities
Table 2.  Receipt of Medically Intensive Services in the Last 30 Days of Life
Receipt of Medically Intensive Services in the Last 30 Days of Life
Table 3.  Estimated Costs of Medically Intensive Care for the Health System and the Beneficiary in the Last Month of Life
Estimated Costs of Medically Intensive Care for the Health System and the Beneficiary in the Last Month of Life
1.
Hogan  C, Lunney  J, Gabel  J, Lynn  J.  Medicare beneficiaries’ costs of care in the last year of life.  Health Aff (Millwood). 2001;20(4):188-195. doi:10.1377/hlthaff.20.4.188PubMedGoogle ScholarCrossref
2.
Riley  GF, Lubitz  JD.  Long-term trends in Medicare payments in the last year of life.  Health Serv Res. 2010;45(2):565-576. doi:10.1111/j.1475-6773.2010.01082.xPubMedGoogle ScholarCrossref
3.
French  EB, McCauley  J, Aragon  M,  et al.  End-of-life medical spending in last twelve months of life is lower than previously reported.  Health Aff (Millwood). 2017;36(7):1211-1217. doi:10.1377/hlthaff.2017.0174PubMedGoogle ScholarCrossref
4.
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. doi:10.1089/109662101753381593PubMedGoogle ScholarCrossref
5.
National Quality Forum. NQF endorses cancer measures. https://www.qualityforum.org/News_And_Resources/Press_Releases/2012/NQF_Endorses_Cancer_Measures.aspx. Published Aug 10, 2012. Accessed April 16, 2019.
6.
IOM (Institute of Medicine).  Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, D.C.: The National Academies Press; 2015.
7.
Gidwani-Marszowski  R, Needleman  J, Mor  V,  et al.  Quality of end-of-life care is higher in the VA compared to care paid for by traditional Medicare.  Health Aff (Millwood). 2018;37(1):95-103. doi:10.1377/hlthaff.2017.0883PubMedGoogle ScholarCrossref
8.
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. doi:10.1001/jama.2012.207624PubMedGoogle ScholarCrossref
9.
Fisher  ES, Wennberg  DE, Stukel  TA, Gottlieb  DJ, Lucas  FL, Pinder  EL.  The implications of regional variations in Medicare spending: part 1, the content, quality, and accessibility of care.  Ann Intern Med. 2003;138(4):273-287. doi:10.7326/0003-4819-138-4-200302180-00006PubMedGoogle ScholarCrossref
10.
Rose  JH, O’Toole  EE, Dawson  NV,  et al.  Perspectives, preferences, care practices, and outcomes among older and middle-aged patients with late-stage cancer.  J Clin Oncol. 2004;22(24):4907-4917. doi:10.1200/JCO.2004.06.050PubMedGoogle ScholarCrossref
11.
Temel  JS, Greer  JA, Muzikansky  A,  et al.  Early palliative care for patients with metastatic non-small-cell lung cancer.  N Engl J Med. 2010;363(8):733-742. doi:10.1056/NEJMoa1000678PubMedGoogle ScholarCrossref
12.
Zhang  B, Nilsson  ME, Prigerson  HG.  Factors important to patients’ quality of life at the end of life.  Arch Intern Med. 2012;172(15):1133-1142. doi:10.1001/archinternmed.2012.2364PubMedGoogle ScholarCrossref
13.
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. doi:10.1001/jama.300.14.1665PubMedGoogle ScholarCrossref
14.
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. doi:10.1089/jpm.2000.3.287PubMedGoogle ScholarCrossref
15.
Barnato  AE, Herndon  MB, Anthony  DL,  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):386-393. doi:10.1097/01.mlr.0000255248.79308.41PubMedGoogle ScholarCrossref
16.
Himmelstein  DU, Thorne  D, Warren  E, Woolhandler  S.  Medical bankruptcy in the United States, 2007: results of a national study.  Am J Med. 2009;122(8):741-746. doi:10.1016/j.amjmed.2009.04.012PubMedGoogle ScholarCrossref
17.
National Cancer Institute. Surveillance, Epidemiology, and End Results Program. Cancer stat facts: cancer of any site. http://seer.cancer.gov/statfacts/html/all.html. Accessed February 21, 2019.
18.
Heron  M.  Deaths: Leading Causes for 2016.  Natl Vital Stat Rep. 2018;67(6):1-77.PubMedGoogle Scholar
19.
Bernard  DS, Farr  SL, Fang  Z.  National estimates of out-of-pocket health care expenditure burdens among nonelderly adults with cancer: 2001 to 2008.  J Clin Oncol. 2011;29(20):2821-2826. doi:10.1200/JCO.2010.33.0522PubMedGoogle ScholarCrossref
20.
Shankaran  V, Jolly  S, Blough  D, Ramsey  SD.  Risk factors for financial hardship in patients receiving adjuvant chemotherapy for colon cancer: a population-based exploratory analysis.  J Clin Oncol. 2012;30(14):1608-1614. doi:10.1200/JCO.2011.37.9511PubMedGoogle ScholarCrossref
21.
The Henry J Kaiser Family Foundation. Summary and chartpack: national survey of households affected by cancer. 2006. http://kff.org/health-costs/poll-finding/summary-and-chartpack-national-survey-of-households/. Published November 1, 2006. Accessed February 18, 2019.
22.
Kim  P.  Cost of cancer care: the patient perspective.  J Clin Oncol. 2007;25(2):228-232. doi:10.1200/JCO.2006.07.9111PubMedGoogle ScholarCrossref
23.
Allan  GM, Lexchin  J.  Physician awareness of diagnostic and nondrug therapeutic costs: a systematic review.  Int J Technol Assess Health Care. 2008;24(2):158-165. doi:10.1017/S0266462308080227PubMedGoogle ScholarCrossref
24.
Allan  GM, Lexchin  J, Wiebe  N.  Physician awareness of drug cost: a systematic review.  PLoS Med. 2007;4(9):e283. doi:10.1371/journal.pmed.0040283PubMedGoogle ScholarCrossref
25.
Pacetti  P, Paganini  G, Orlandi  M,  et al.  Chemotherapy in the last 30 days of life of advanced cancer patients.  Support Care Cancer. 2015;23(11):3277-3280. doi:10.1007/s00520-015-2733-6PubMedGoogle ScholarCrossref
26.
Näppä  U, Lindqvist  O, Rasmussen  BH, Axelsson  B.  Palliative chemotherapy during the last month of life.  Ann Oncol. 2011;22(11):2375-2380. doi:10.1093/annonc/mdq778PubMedGoogle ScholarCrossref
27.
Emanuel  EJ, Young-Xu  Y, Levinsky  NG, Gazelle  G, Saynina  O, Ash  AS.  Chemotherapy use among Medicare beneficiaries at the end of life.  Ann Intern Med. 2003;138(8):639-643. doi:10.7326/0003-4819-138-8-200304150-00011PubMedGoogle ScholarCrossref
28.
Department of Defense. Department of Defense Suicide Prevention Office. Suicide data repository. http://www.dspo.mil/About-Suicide/Suicide-Data-Repository/. Accessed November 30, 2017.
29.
National Cancer Institute. Surveillance, Epidemiology, and End Results Program. SEER cause of death recode 1969+.https://seer.cancer.gov/codrecode/1969_d04162012/index.html. Published April 16, 2012. Accessed August 6, 2019.
30.
Ederer  F, Geisser  MS, Mongin  SJ, Church  TR, Mandel  JS.  Colorectal cancer deaths as determined by expert committee and from death certificate: a comparison. The Minnesota Study.  J Clin Epidemiol. 1999;52(5):447-452. doi:10.1016/S0895-4356(99)00016-5PubMedGoogle ScholarCrossref
31.
Albertsen  PC, Walters  S, Hanley  JA.  A comparison of cause of death determination in men previously diagnosed with prostate cancer who died in 1985 or 1995.  J Urol. 2000;163(2):519-523. doi:10.1016/S0022-5347(05)67915-3PubMedGoogle ScholarCrossref
32.
Doria-Rose  VP, Marcus  PM.  Death certificates provide an adequate source of cause of death information when evaluating lung cancer mortality: an example from the Mayo Lung Project.  Lung Cancer. 2009;63(2):295-300. doi:10.1016/j.lungcan.2008.05.019PubMedGoogle ScholarCrossref
33.
Hynes  DM, Koelling  K, Stroupe  K,  et al.  Veterans’ access to and use of Medicare and Veterans Affairs health care.  Med Care. 2007;45(3):214-223. doi:10.1097/01.mlr.0000244657.90074.b7PubMedGoogle ScholarCrossref
34.
Humensky  J, Carretta  H, de Groot  K, Brown  MM, Tarlov  E, Hynes  DM.  Service utilization of veterans dually eligible for VA and Medicare fee-for-service: 1999-2004.  Medicare Medicaid Res Rev. 2012;2(3):mmrr.002.03.a06. doi:10.5600/mmrr.002.03.A06PubMedGoogle ScholarCrossref
35.
Petersen  LA, Byrne  MM, Daw  CN, Hasche  J, Reis  B, Pietz  K.  Relationship between clinical conditions and use of Veterans Affairs health care among Medicare-enrolled veterans.  Health Serv Res. 2010;45(3):762-791. doi:10.1111/j.1475-6773.2010.01107.xPubMedGoogle ScholarCrossref
36.
Liu  CF, Chapko  M, Bryson  CL,  et al.  Use of outpatient care in Veterans Health Administration and Medicare among veterans receiving primary care in community-based and hospital outpatient clinics.  Health Serv Res. 2010;45(5, pt 1):1268-1286. doi:10.1111/j.1475-6773.2010.01123.xPubMedGoogle ScholarCrossref
37.
Liu  CF, Batten  A, Wong  ES, Fihn  SD, Hebert  PL.  Fee-for-service Medicare-enrolled elderly veterans are increasingly voting with their feet to use more VA and less Medicare, 2003-2014.  Health Serv Res. 2018;53(suppl 3):5140-5158. doi:10.1111/1475-6773.13029PubMedGoogle ScholarCrossref
38.
Lei  L, Cooley  SG, Phibbs  CS,  et al.  Attributable cost of dementia: demonstrating pitfalls of ignoring multiple health care system utilization.  Health Serv Res. 2018;53(suppl 3):5331-5351. doi:10.1111/1475-6773.13048PubMedGoogle ScholarCrossref
39.
US Department of Veterans Affairs. Community care: copayments. https://www.va.gov/COMMUNITYCARE/revenue_ops/copays.asp Published 2019. Updated June 13, 2019. Accessed June 14, 2019.
40.
Agency for Healthcare Research and Quality. Medical Expenditure Panel Survey. Using appropriate price indices for analyses of health care expenditures or income across multiple years. https://meps.ahrq.gov/about_meps/Price_Index.shtml. Updated August 2018. Accessed February 18, 2019.
41.
Neumann  PJ, Sanders  GD, Russell  LB, Siegel  JE, Ganiats  TG, eds.  Cost-Effectiveness in Health and Medicine. 2nd ed. New York, NY: Oxford University Press; 2016. doi:10.1093/acprof:oso/9780190492939.001.0001
42.
Manning  WG, Mullahy  J.  Estimating log models: to transform or not to transform?  J Health Econ. 2001;20(4):461-494. doi:10.1016/S0167-6296(01)00086-8PubMedGoogle ScholarCrossref
43.
Quan  H, Sundararajan  V, Halfon  P,  et al.  Coding algorithms for defining comorbidities in ICD-9-CM and ICD-10 administrative data.  Med Care. 2005;43(11):1130-1139. doi:10.1097/01.mlr.0000182534.19832.83PubMedGoogle ScholarCrossref
44.
Benjamini  Y, Hochberg  Y.  Controlling the false discovery rate: a practical and powerful approach to multiple testing.  J R Stat Soc Series B Stat Methodol. 1995;57(1):289-300.Google Scholar
45.
Byhoff  E, Harris  JA, Langa  KM, Iwashyna  TJ.  Racial and ethnic differences in end-of-life Medicare expenditures.  J Am Geriatr Soc. 2016;64(9):1789-1797. doi:10.1111/jgs.14263PubMedGoogle ScholarCrossref
46.
Chastek  B, Harley  C, Kallich  J, Newcomer  L, Paoli  CJ, Teitelbaum  AH.  Health care costs for patients with cancer at the end of life.  J Oncol Pract. 2012;8(6):75s-80s. doi:10.1200/JOP.2011.000469PubMedGoogle ScholarCrossref
47.
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):235-242. doi:10.7326/0003-4819-154-4-201102150-00004PubMedGoogle ScholarCrossref
48.
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. doi:10.1001/jama.2011.1410PubMedGoogle ScholarCrossref
49.
Barnato  AE, Bost  JE, Farrell  MH,  et al.  Relationship between staff perceptions of hospital norms and hospital-level end-of-life treatment intensity.  J Palliat Med. 2007;10(5):1093-1100. doi:10.1089/jpm.2006.0258PubMedGoogle ScholarCrossref
50.
Gomes  B, Calanzani  N, Gysels  M, Hall  S, Higginson  IJ.  Heterogeneity and changes in preferences for dying at home: a systematic review.  BMC Palliat Care. 2013;12:7. doi:10.1186/1472-684X-12-7PubMedGoogle ScholarCrossref
51.
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. doi:10.1200/JCO.2009.25.4672PubMedGoogle ScholarCrossref
52.
Weeks  JC, Catalano  PJ, Cronin  A,  et al.  Patients’ expectations about effects of chemotherapy for advanced cancer.  N Engl J Med. 2012;367(17):1616-1625. doi:10.1056/NEJMoa1204410PubMedGoogle ScholarCrossref
53.
The Henry J Kaiser Family Foundation. Income and assets of Medicare beneficiaries, 2014-2030. http://files.kff.org/attachment/issue-brief-income-and-assets-of-medicare-beneficiaries-2014-2030. Published September 2015. Accessed March 1, 2019.
54.
Narang  AK, Nicholas  LH.  Out-of-pocket spending and financial burden among Medicare beneficiaries with cancer.  JAMA Oncol. 2017;3(6):757-765. doi:10.1001/jamaoncol.2016.4865PubMedGoogle ScholarCrossref
55.
Kantarjian  H, Patel  Y.  High cancer drug prices 4 years later-Progress and prospects.  Cancer. 2017;123(8):1292-1297. doi:10.1002/cncr.30545PubMedGoogle ScholarCrossref
56.
Bach  PB, Giralt  SA, Saltz  LB.  FDA approval of tisagenlecleucel: promise and complexities of a $475 000 cancer drug.  JAMA. 2017;318(19):1861-1862. doi:10.1001/jama.2017.15218PubMedGoogle ScholarCrossref
57.
Keating  NL, Huskamp  HA, Kouri  E,  et al.  Factors contributing to geographic variation in end-of-life expenditures for cancer patients.  Health Aff (Millwood). 2018;37(7):1136-1143. doi:10.1377/hlthaff.2018.0015PubMedGoogle ScholarCrossref
58.
Ebell  MH.  Determining prognosis for patients with terminal cancer.  Am Fam Physician. 2005;72(4):668-669.PubMedGoogle Scholar
59.
Krishnan  MS, Epstein-Peterson  Z, Chen  YH,  et al.  Predicting life expectancy in patients with metastatic cancer receiving palliative radiotherapy: the TEACHH model.  Cancer. 2014;120(1):134-141. doi:10.1002/cncr.28408PubMedGoogle ScholarCrossref
60.
UpToDate. Survival estimates in advanced terminal cancer. https://www.uptodate.com/contents/survival-estimates-in-advanced-terminal-cancer. Accessed July 30, 2019.
61.
Henry J Kaiser Family Foundation. Sources of supplemental coverage among Medicare beneficiaries in 2016. https://www.kff.org/medicare/issue-brief/sources-of-supplemental-coverage-among-medicare-beneficiaries-in-2016/. November 28, 2018. Accessed April 1, 2019.
62.
Medicare.gov. Costs of Medigap policies. https://www.medicare.gov/find-a-plan/staticpages/learn/how-insurance-companies-price-policies.aspx. Published 2019. Accessed July 2, 2019.
63.
Dusetzina  SB, Keating  NL.  Mind the gap: why closing the doughnut hole is insufficient for increasing Medicare beneficiary access to oral chemotherapy.  J Clin Oncol. 2016;34(4):375-380. doi:10.1200/JCO.2015.63.7736PubMedGoogle ScholarCrossref
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    1 Comment for this article
    EXPAND ALL
    End-of-Life Costs. A Possible Solution to a Dilemma
    Edward Volpintesta, MD | Bethel, CT
    Providing care in end-of-life situations always will be a dilemma for physicians regardless of how capable they are.
    Why? Because even when we physicians are certain that the prognosis is dire and impending, it is difficult to take away hope from of patients in their last days. And the same pertains to the families.
    There is a human factor here that affects all three, in different ways and in different degrees, but nevertheless the cumulative effect can be soul-wrenching for the family and for the doctor.
    It is difficult to know how patients feel when death is imminent;
    some are anxious and physicians may use medication to relieve their mental pain. But some are at peace with themselves. In these situations, I feel a sense of relief as does the family. Often, I am overcome with emotion and a sense of my own mortality, and although I fight hard to hold back tears, I cannot hide them.
    It is important to study how the costs of intensive care at end-of-life probably effect beneficiaries and how those costs can be controlled when the care is deemed futile; but it is equally important to study the interactions between patient, doctor, and family, for the answer controlling futile care and the economic burden to beneficiaries may be as ‘simple’ as having a honest but compassionate conversation with the family; and even asking the patient if he/she would like to talk to a chaplain.
    This is a dilemma and the costs for futile care can be great, but there are emotional costs as well, for patients, families, and doctors.
    CONFLICT OF INTEREST: None Reported
    READ MORE
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    Original Investigation
    Geriatrics
    September 27, 2019

    Health System and Beneficiary Costs Associated With Intensive End-of-Life Medical Services

    Author Affiliations
    • 1Health Economics Resource Center, VA Palo Alto Health Care System, Menlo Park, California
    • 2Center for Innovation to Implementation, VA Palo Alto Health Care System, Menlo Park, California
    • 3Division of Primary Care and Population Health, Stanford University, Stanford, California
    • 4Department of Health Services, Policy, and Practice, Brown University School of Public Health, Providence, Rhode Island
    • 5Providence VA Medical Center, Providence, Rhode Island
    • 6Department of Surgery, Stanford University, Stanford, California
    • 7Alpert Medical School, Brown University, Providence, Rhode Island
    • 8VA Palo Alto Health Care System, Palo Alto, California
    • 9Division of Medical Oncology, Stanford University, Stanford, California
    • 10Center for Health Policy/Center for Primary Care and Outcomes Research, Stanford University, Stanford, California
    • 11Department of Health Policy and Management, UCLA Fielding School of Public Health, University of California, Los Angeles
    JAMA Netw Open. 2019;2(9):e1912161. doi:10.1001/jamanetworkopen.2019.12161
    Key Points español 中文 (chinese)

    Question  What is the cost associated with National Quality Forum–identified intensive medical services in the last month of life to beneficiaries and to the health care system?

    Findings  In this cohort study of 48 937 patients with cancer enrolled in Medicare and the Veterans Health Administration, those receiving no intensive service had a health system cost of $7660, whereas for the 59% of patients receiving 1 or more intensive services in the last month of life, the cost was $23 612. Expected beneficiary costs in the last month of life were $133 for patients with no intensive service and $1257 for patients with at least 1 intensive service.

    Meaning  Despite recommendations, more than half of patients with cancer receive intensive services at the end of life at a substantial cost to beneficiaries and the heath system.

    Abstract

    Importance  Despite recommendations to reduce intensive medical treatment at the end of life, many patients with cancer continue to receive such services.

    Objective  To quantify expected beneficiary and health system costs incurred in association with receipt of intensive medical services in the last month of life.

    Design, Setting, and Participants  This retrospective cohort study used data collected nationally from Medicare and the Veterans Health Administration for care provided in fiscal years 2010 to 2014. Participants were 48 937 adults aged 66 years or older who died of solid tumor and were continuously enrolled in fee-for-service Medicare and the Veterans Health Administration in the 12 months prior to death. The data were analyzed from February to August 2019.

    Exposures  American Society of Clinical Oncology metrics regarding medically intensive services provided in the last month of life, including hospital stay, intensive care unit stay, chemotherapy, 2 or more emergency department visits, or hospice for 3 or fewer days.

    Main Outcomes and Measures  Costs in the last month of life associated with receipt of intensive medical services were evaluated for both beneficiaries and the health system. Costs were estimated from generalized linear models, adjusting for patient demographics and comorbidities and conditioning on geographic region.

    Results  Of 48 937 veterans who received care through the Veterans Health Administration and Medicare, most were white (90.8%) and male (98.9%). More than half (58.9%) received at least 1 medically intensive service in the last month of life. Patients who received no medically intensive service generated a mean (SD) health system cost of $7660 ($1793), whereas patients who received 1 or more medically intensive services generated a mean (SD) health system cost of $23 612 ($5528); thus, the additional financial consequence to the health care system for medically intensive services was $15 952 (95% CI, $15 676-$16 206; P < .001). The biggest contributor to these differences was $21 093 (95% CI, $20 364-$21 689) for intensive care unit stay, while the smallest contributor was $3460 (95% CI, $2927-$3880) for chemotherapy. Mean (SD) expected beneficiary costs for the last month of life were $133 ($50) for patients with no medically intensive service and $1257 ($408) for patients with at least 1 medically intensive service (P < .001).

    Conclusions and Relevance  Given the low income of many elderly patients in the United States, the financial consequences of medically intensive services may be substantial. Costs of medically intensive services at the end of life, including patient financial consequences, should be considered by both physicians and families.

    Introduction

    A disproportionate share of medical spending is provided to patients in their last year of life.1-3 Much of that difference is no doubt because of unavoidable costs of serious illness.4 However, for patients with cancer, it is often possible to predict when intensive medical services have lost much of their potential benefit.4 For that reason, the National Academy of Medicine and the American Society of Clinical Oncology (ASCO) recommend a reduction in use of intensive medical services at the end of life, noting it is at odds with the focus on palliation and reduction in patient suffering that should characterize health care at this time.5,6

    Despite such recommendations, patients continue to receive intensive medical services in the last month of life.7,8 Intensive services at the end of life are not linked to better outcomes,9-11 are associated with poorer patient quality of life,12,13 and are considered undesirable by many patients.14,15 An ancillary consequence of poor-quality end-of-life care is its cost, both to the health care system and to patients, who often bear nontrivial cost-sharing. Medical care is the leading cause of personal bankruptcy in the United States, and insurance is not sufficiently protective against patient financial consequences; most persons experiencing medical bankruptcy were insured at the time of their illness.16

    Few studies have tried to quantify the financial consequences associated with these end-of-life intensive medical services. In the present study, we evaluate the additional costs incurred for patients who receive intensive medical services at the end of life, from both a health system and a beneficiary perspective. Although the medical community is no doubt aware that costs increase as use of health services increases, our goals in the present study are (1) to quantify the magnitude of that association, including for specific intensive medical services, and (2) to shed light on patient financial responsibility for medically intensive end-of-life services.

    We focus the present study on patients dying of cancer, for 5 reasons. First, almost 40% of people in the United States will develop cancer at some point in their lives17; and cancer accounts for nearly 1 in 4 US deaths.18 Second, patient financial consequences for cancer care are especially high,19 with almost half of patients reporting cancer care–related financial strain,20,21 and many patients forgoing or discontinuing cancer treatment partly for financial reasons.21,22 Third, literature indicates death from solid tumor may be easier to prognosticate than death from other chronic illness.4 Fourth, the National Quality Forum (NQF)-endorsed ASCO guidelines for appropriate end-of-life care are premised on the assumption that death from cancer is able to be anticipated; therefore, there is a growing consensus that cancer-related death can often be forecast and that care decisions can be made based on that understanding. Fifth, in recognition of the high costs and limited health benefit of some cancer care, ASCO has recommended physicians discuss the value—the costs and likely outcomes—of treatment strategies with their patients. Yet physicians often have limited knowledge of the costs of care,23,24 making informed discussions challenging if not impossible. The present study quantifies the financial consequences of medically intensive end-of-life services and provides physicians with reference estimates that may be of use.

    Methods

    Consistent with ASCO/NQF measures, we evaluated total costs of care in the last month of life for patients who did or who did not receive the following medically intensive services: 2 or more emergency department visits; chemotherapy; a hospital admission without an intensive care unit (ICU) stay; an ICU stay; or hospice for fewer than 3 days in the last month of life. We evaluated both oral and intravenous chemotherapy. Of note, ASCO/NQF include metrics for chemotherapy use in the last 14 days of life. Others have included chemotherapy use in the last 30 days of life to evaluate end-of-life care quality.25-27 Recognizing that the specific definition of “end of life” is subjective, and with a goal of being more inclusive, we similarly chose to evaluate chemotherapy in the last 30 days of life. This study followed the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) reporting guideline for cohort studies. This study was approved by and received a waiver of informed consent from the Stanford University Institutional Review Board because the research involved no more than minimal risk to the participants and the waiver would not adversely affect the rights and welfare of the participants.

    Study Population

    Cohort members were veterans who died of cancer in fiscal years 2010 to 2014 and were identified using Surveillance, Epidemiology, and End Results–Medicare International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) codes for underlying cause of death from National Death Index death certificate data.28,29 Underlying cause of death data have more than 89% sensitivity and more than 90% specificity for multiple solid tumor types.30-32 We made 2 adjustments to ASCO/NQF metrics to increase the likelihood that physicians were better able to anticipate their patients’ deaths: we limited the cohort to persons dying of solid tumor and to those who had an ICD-9 code for cancer for at least 6 months in administrative data. These criteria have the effect of providing more conservative estimates of intensive medical services at the end of life than would strict ASCO/NQF criteria.

    Cohort members were aged 66 years or older and were continuously enrolled in fee-for-service Medicare in the 12 months prior to death; the latter criterion allowed for full capture of use. Veterans aged 65 years or older are eligible to enroll in Medicare, and most dually enrolled veterans use both the Veterans Health Administration (VA) and Medicare for services.33-37 Medicare data were included in this analysis because other work indicates excluding Medicare substantially underestimates total costs of veteran care.38 We excluded patients who were also enrolled in Medicaid owing to the unavailability of those cost data; our cohort was limited to patients for whom we had complete capture of costs and utilization.

    Costs

    The health system costs of intensive medical services in the VA were obtained from VA Managerial Cost Accounting data that we linked to inpatient, outpatient, and pharmacy administrative utilization data. Beneficiary costs in the VA are not directly available and were assigned using VA national office guidance, based on patients’ utilization of outpatient primary care, specialty care, and days of inpatient service use and enrollment priority.39 For example, patients who have an enrollment priority of 7 or 8 are eligible for copayments in VA. Patients in priority group 8 have the highest copayments; if these patients received inpatient care, their cost-sharing was $10 per day plus approximately $1200 for the first 90 days, and $600 for the next 90 days. Medicare health system and beneficiary costs and utilization were obtained from the MEDPAR, Outpatient, Carrier, Durable Medical Equipment, Hospice, Home Health and Part D administrative files. Beneficiary costs are a separate variable in the claims data present in these files. We also included care that was delivered in the community and paid for by the VA, known as Fee-Basis care. Taken together, these represent the entirety of costs incurred by patients in their last month of life. Medicare data are reimbursements for care provided, whereas VA data are cost estimates based on activity-based cost accounting. Patient costs in both systems are beneficiary expectations of payment, rather than patient copayments because the latter are not available in the Medicare or VA research data. They therefore represent the starting point for patient copayments, rather than final patient copayments; yet they remain the most comprehensive data available for research purposes. For simplicity, we refer to all as costs. Costs were inflation adjusted to 2014 dollars using the personal consumption expenditures index,40 as recommended by the Second Panel on Cost-Effectiveness in Health and Medicine.41

    Statistical Analysis

    We estimated the association between receipt of medically intensive services and costs in the last month of life using a generalized linear model. A modified Park test and a Box-Cox regression recommended a gamma distribution with a log link function.42 Models were adjusted for age as a categorical variable, race, the cancer category representing the underlying cause of death, and Elixhauser comorbidities.43 Models were conditioned on geographic area (hospital referral region) to account for both geographic differences in the practice of end-of-life care9 and geographic variation in wages; this method allows for interpretation of the cost differences between medically intensive and nonmedically intensive services within geographic regions.

    Models were used to estimate the additional costs associated with medically intensive services, with bias-corrected 95% CIs generated through bootstrapping with 1000 replications. We adjusted for multiple hypothesis testing by constraining the familywise error rate to no more than 0.05 (2-tailed level of significance) across the 5 outcomes studied.44 All analyses were conducted in Stata/MP, version 15.1 (StataCorp), from February to August 2019.

    Results

    The study cohort consisted of 48 937 veterans who received care through the VA and Medicare. Our cohort was majority white (90.8%), male (98.9%), and had a mean (SD) of 8.8 (3.9) comorbidities (Table 1). Cohort members were most likely to die of lung and bronchus cancer (31.1%) or prostate cancer (20.8%). Cohort members had a cancer diagnosis for a median (interquartile range) of 34.6 (16.0-54.8) months before death. In unadjusted analyses, patients who received a medically intensive service had a longer time from cancer diagnosis to death than patients who did not (P < .001 using a Wilcoxon rank sum test) (Table 1).

    More than half of the cohort (58.9%) received at least 1 medically intensive service in the last month of life (Table 2). Patients who received medically intensive services were significantly more likely to have comorbidities, although the difference was small (Table 1). The most frequently occurring intensive service was insufficient hospice exposure (36.6%), followed by a hospital stay without an ICU admission (30.3%); the least frequently occurring intensive service was chemotherapy (11.0%) (Table 2). Patients were most likely to receive 1 (28.6%) or 2 (22.1%) intensive services in the last month of life; few patients had 3 or more intensive services.

    Receipt of medically intensive services was associated with higher costs of care, for both the health system and the beneficiary. Patients with at least 1 medically intensive service had $15 952 (95% bias-corrected CI, $15 676-$16 206; P < .001) greater health system costs in the last month of life compared with patients who did not have any medically intensive service (mean [SD], $23 612 [$5528] vs $7660 [$1793]). They also had $1123 (95% CI, $1115-$1143) greater expected beneficiary costs (Table 3).

    Costs varied substantially by type of intensive service provided, with ICU stays associated with highest additional financial consequence and chemotherapy associated with lowest additional financial consequence for the health system (Figure 1 and Figure 2). Patients with an ICU stay in the last month of life had $21 093 (95% CI, $20 364-$21 689) higher health system costs and $1222 (95% CI, $1178-$1238) higher expected beneficiary costs than those who did not have an ICU stay. Patients with a non-ICU hospital stay had $8590 (95% CI, $8224-$8772) higher health system costs and $771 (95% CI, $749-$778) higher expected beneficiary costs than those who did not have a non-ICU hospital stay. Patients with 2 or more emergency department visits in the last month of life had $11 140 (95% CI, $10 623-$11 495) higher health system costs and $879 (95% CI, $853-$901) higher expected beneficiary costs. Patients who received 3 or fewer days of hospice had $13 134 (95% CI, $12 713-$13 501) higher health system costs and $811 (95% CI, $778-$825) higher expected beneficiary costs than those who received hospice for the greater (recommended) number of days. Patients who received chemotherapy had $3460 (95% CI, $2927-$3880) higher health system costs and $942 (95% CI, $888-$969) higher expected beneficiary costs than those who did not receive any chemotherapy in the last month of life.

    The total estimated mean (SD) health care system costs for patients with intensive services were as follows: $23 612 ($5528) for any intensive service; $35 235 ($10 067) for hospital admission with ICU stay; $27 007 ($8629) for 2 or more emergency department visits; $25 438 ($6729) for hospice lasting 3 or fewer days; $23 289 ($7495) for hospital admission without ICU stay; and $20 379 ($6646) for chemotherapy.

    The total estimated mean (SD) expected beneficiary costs for patients with intensive services were as follows: $1257 ($468) for any intensive service; $1830 ($652) for hospital admission with ICU stay; $1621 ($591) for chemotherapy; $1553 ($585) for 2 or more emergency department visits; $1327 ($515) for hospital admission without ICU stay; and $1300 ($474) for hospice lasting 3 or fewer days (Table 3).

    In models evaluating the association between the number of intensive services provided and costs, (mean [SD]) health care systems costs were similar for patients with 2 ($27 979 [$6432]), 3 ($28 641 [$6589]), or 4 ($28 854 [$6638]) intensive services (all P > .05). The greatest differences in health system costs were between 0 and 1 intensive services (mean [SD], $7617 [$1752] vs $17 814 [$4099]); P < .001). There were also significant differences in costs between 2 services vs 0 services and 2 services vs 1 service (both P < .001). However, the differences in health system costs between 2 services and 3 or 4 services was not significant (P = .13 for 2 vs 3; P = .39 for 2 vs 4; P = .85 for 3 vs 4). By contrast, expected beneficiary costs increased significantly with each intensive service provided (mean [SD]: $133 [50] for no intensive services; $820 [$309] for 1 intensive service; $1463 [$552] for 2 intensive services; $1830 [$691] for 3 intensive services; and $2230 [$842] for 4 intensive services). For expected beneficiary costs, all P values were .01 or less for each number of service vs other numbers of services (2 services vs 0 services, 2 services vs 1 service, etc).

    Discussion

    Despite recommendations to the contrary, more than half of cancer decedents receive medically intensive services in the last month of life. We found the costs associated with nonrecommended intensive services added a mean of almost $16 000 to health care system costs and more than $1100 to expected beneficiary costs in the last month of life alone, bringing total spending in the last month of life to a mean of $24 000 for the health system and $1300 for the beneficiary. Although it is not surprising that intensive medical services cost more, quantifying the magnitude of these costs can help spur efforts to reduce it.

    Prior studies have estimated overall health system costs in the last 6 months of life for Medicare beneficiaries to range from means of $41 712 to $74 21245,46 and medians around $22 000.47,48 To our knowledge, no other study has quantified the additional costs associated with intensive medical services at the end of life, and there is no other published evaluation of beneficiary expectations of payment or patient costs associated with intensive medical services at the end of life. In this work, we found ICU stays were associated with the highest excess financial consequence to the health system, of more than $21 000. Chemotherapy was associated with the lowest excess financial consequence to the health system of approximately $3500. The low excess financial consequence of chemotherapy is partially because patients not receiving chemotherapy were still receiving other intensive services in the last month of life, contributing to their total costs.

    Many factors influence the patient-clinician decision to pursue medically intensive services. These may include patient desire for such care, clinician belief that it will provide significant medical or palliative benefit, patient denial of limited prognosis, or miscommunication about prognosis. However, when querying patients about what they would hypothetically prefer, they often assert that intensive services at the end of life are undesirable.49-51 Evidence also indicates that patients and clinicians may not always share the same understanding about prognosis; in 1 large sample study, more than two-thirds of patients with metastatic solid tumor were unaware that their chemotherapy had no curative intent.52 Thus, miscommunication or misunderstanding of prognosis is of particular concern.

    Ideally, patient-clinician decisions to pursue medically intensive services should involve discussions of the likelihood of benefit, risks, and side effects, including potential financial consequences, of these interventions. The present study provides reference cost estimates that may help inform those discussions. The present analysis indicates that patients experience approximately $1250 out-of-pocket health costs in the last month of life due to medically intensive services. To place this number in context, the median annual household income of a Medicare beneficiary in 2014, the last year of this analysis, was $24 150,53 or $2013 a month. Using these figures, expected beneficiary spending on medical services that have a low likelihood of helping them and could harm them may represent 62% of the household income of the typical Medicare enrollee in the last month of his life. Indeed, analyses of Medicare-only beneficiaries find that beneficiaries with a new cancer diagnosis have out-of-pocket costs that are a mean of 24% of their household income.54 The present study indicates that as cancer progresses, expected beneficiary responsibility for intensive medical services represents a higher proportion of household income, rising to almost two-thirds of household income in the last month of life. This study also identified costs in the last month of life only, and almost 90% of our cohort received no chemotherapy in this time frame. Thus, analyses looking farther back from death would yield much higher estimates of drug costs. This, coupled with the high cost of chemotherapies and immunotherapies that have come to market after fiscal year 2014 (the last year of our data),55,56 indicate that the financial consequences due to cancer care will only grow.

    The purchasing of medical care, including chemotherapy and end-of-life care, is largely guided by physicians; recent work finds that physician beliefs, rather than patient beliefs, explain much of oft-noted geographic variation in end-of-life spending.57 Thus, physicians have a strong opportunity to limit medically intensive interventions at the end of life in ways that can avoid patient financial consequences. For example, early goals-of-care conversations with patients may help to ensure that patients receive the care they want and need. The present study also highlighted that given the low likelihood of benefit and the potential for financial consequences, as well as patient concerns about the cost of cancer care,21,22 it may be worthwhile for physicians to discuss this openly with patients before proceeding with medically intensive interventions.

    Limitations

    The present study was subject to certain limitations. First, this study was a retrospective evaluation of cancer decedents, and although we examined care for patients provided in the month prior to death, patients and their treating oncologists may have been less certain that the patients were in their final month of life. However, oncologists regularly use many clinical indicators to help prognosticate life expectancy, including understanding the expected trajectory of a specific solid tumor as it metastasizes, recognizing the rapidity of a patient’s personal disease progression, and identifying symptoms that death is becoming imminent. Several tools have been developed to aid in this prognostication.58-60 In fact, ASCO has created specific metrics regarding care in the last 30 days of life, indicating the importance the oncology community places on attempting to anticipate when patients are approaching death.

    Second, as noted above, this study evaluates the beneficiary expectation of payment, rather than the actual costs paid by patients, as the latter are not available in Medicare and VA research databases. On the Medicare side, the majority of enrollees in traditional Medicare have supplemental insurance,61 often referred to as Medigap insurance, that covers much of their cost-sharing. However, while supplemental insurance reduces patients’ out-of-pocket costs, it does not eliminate them. Survey analyses found 1-year out-of-pocket payments by patients with cancer and Medigap insurance were $5670 vs $8115 for patients without Medigap insurance.54 When factoring in premiums for Medigap insurance and Part D plans (the former conservatively estimated to be $1440 per year),62 the differences in patient total cost-sharing between patients with cancer and with or without Medigap insurance narrows further (estimated to be $8115 vs $7110 for patients with and without Medigap, not including the cost of Part D premiums). Part D coverage for oral medications, including oral chemotherapy, also does not fully protect patients from cost-sharing. Even after closure of the Medicare Part D “coverage gap,” Part D patient out-of-pocket costs for oral chemotherapy are estimated to be $5663 for an average course of treatment.63 Taken together, our results as well as published information about Medicare cost-sharing indicate substantial patient financial responsibility for care provided in the last month of life, regardless of supplemental insurance status. In addition, the premiums patients pay for supplemental insurance are heavily influenced by Medigap expenditures for previous years. Finally, because VA care is not eligible for supplemental insurance, our VA-measured costs are a reasonable approximation or actual out-of-pocket payments, as is the cost-sharing associated with Medicare Part D services. Furthermore, 20% of the eligible Medicare population does not have supplemental insurance61; beneficiary payments do equal out-of-pocket spending for that group, and given that their income distribution of that population tends to skew low,61 the beneficiary costs we present are particularly relevant for that group. Given all of these factors, understanding the amount beneficiaries are expected to pay or must have reimbursed through secondary insurance they purchase remains important yet understudied.

    Third, our work combined VA and Medicare data for a cohort of veterans. This produces conservative estimates of expected beneficiary responsibility for care because our beneficiary cost data include both VA and Medicare expenses, and patient cost-sharing in VA is nominal. Many veterans pay no copayments. In our cohort, approximately one-third of veterans were eligible for copayments in VA (although all were eligible for copayments in Medicare). Even those veterans who are eligible for cost-sharing in the VA have greater financial protection than veterans seeking care through Medicare. For example, veterans who are eligible for VA copayments pay $15 per primary care visit, and $50 per specialty care visit. By contrast, Medicare charges a 20% coinsurance for outpatient services, including for infused chemotherapies. In addition, unlike Medicare, VA has a drug formulary and negotiates drug prices. Thus, an analysis evaluating a nonveteran cohort would yield much higher figures for expected beneficiary costs in the last month of life. However, although the use of a veteran cohort limits the generalizability of our findings, it has the advantage of ensuring findings regarding intensive services are not driven by the fee-for-service incentives for overuse of services present in Medicare. Indeed, our results point to the need for further efforts to improve the value of end-of-life care in both integrated and fee-for-service environments.

    Conclusions

    The present study is, to our knowledge, the first analysis of both health system costs and beneficiary costs associated with medically intensive end-of-life care. Our results indicated that receipt of medically intensive services in the last month of life was associated with substantial costs, a nontrivial portion of which was borne by beneficiaries and their decedents. Efforts to more appropriately use medical care may benefit by considering beneficiary financial consequences as well as health system costs associated with intensive medical interventions. Our results provide further support for the consideration of value in cancer care.

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    Article Information

    Accepted for Publication: August 8, 2019.

    Published: September 27, 2019. doi:10.1001/jamanetworkopen.2019.12161

    Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2019 Gidwani-Marszowski R et al. JAMA Network Open.

    Corresponding Author: Risha Gidwani-Marszowski, DrPH, Health Economics Resource Center, VA Palo Alto Health Care System, 795, Willow Rd (152 MPD), Menlo Park, CA 94025 (rgidwani@stanford.edu).

    Author Contributions: Dr Gidwani-Marszowski had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

    Concept and design: Gidwani-Marszowski, Asch, Mor, Wagner, Faricy-Anderson, Hsin, Patel.

    Acquisition, analysis, or interpretation of data: Gidwani-Marszowski, Mor, Wagner, Faricy-Anderson, Illarmo, Hsin, Patel, Ramchandran, Lorenz, Needleman.

    Drafting of the manuscript: Gidwani-Marszowski, Illarmo, Patel, Lorenz.

    Critical revision of the manuscript for important intellectual content: Gidwani-Marszowski, Asch, Mor, Wagner, Faricy-Anderson, Hsin, Patel, Ramchandran, Lorenz, Needleman.

    Statistical analysis: Gidwani-Marszowski, Wagner, Faricy-Anderson.

    Obtained funding: Gidwani-Marszowski.

    Administrative, technical, or material support: Asch, Wagner, Faricy-Anderson, Illarmo, Hsin.

    Supervision: Gidwani-Marszowski, Asch, Mor, Wagner, Ramchandran.

    Conflict of Interest Disclosures: Dr Wagner reported receiving grants from the US Department of Veterans Affairs during the conduct of the study. No other disclosures were reported.

    Funding/Support: This work was supported by Merit Review Award number I01 HX001627 from the US Department of Veterans Affairs, Office of Research and Development, Health Services Research and Development Service. Support for Veterans Health Administration and Centers for Medicare and Medicaid Services data provided by project numbers SDR 02-237 and 98-004 from the US Department of Veterans Affairs, Office of Research and Development, Health Services Research and Development Service, Information Resource Center.

    Role of the Funder/Sponsor: The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; or the decision to submit the manuscript for publication.

    Disclaimer: The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the US government.

    References
    1.
    Hogan  C, Lunney  J, Gabel  J, Lynn  J.  Medicare beneficiaries’ costs of care in the last year of life.  Health Aff (Millwood). 2001;20(4):188-195. doi:10.1377/hlthaff.20.4.188PubMedGoogle ScholarCrossref
    2.
    Riley  GF, Lubitz  JD.  Long-term trends in Medicare payments in the last year of life.  Health Serv Res. 2010;45(2):565-576. doi:10.1111/j.1475-6773.2010.01082.xPubMedGoogle ScholarCrossref
    3.
    French  EB, McCauley  J, Aragon  M,  et al.  End-of-life medical spending in last twelve months of life is lower than previously reported.  Health Aff (Millwood). 2017;36(7):1211-1217. doi:10.1377/hlthaff.2017.0174PubMedGoogle ScholarCrossref
    4.
    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. doi:10.1089/109662101753381593PubMedGoogle ScholarCrossref
    5.
    National Quality Forum. NQF endorses cancer measures. https://www.qualityforum.org/News_And_Resources/Press_Releases/2012/NQF_Endorses_Cancer_Measures.aspx. Published Aug 10, 2012. Accessed April 16, 2019.
    6.
    IOM (Institute of Medicine).  Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, D.C.: The National Academies Press; 2015.
    7.
    Gidwani-Marszowski  R, Needleman  J, Mor  V,  et al.  Quality of end-of-life care is higher in the VA compared to care paid for by traditional Medicare.  Health Aff (Millwood). 2018;37(1):95-103. doi:10.1377/hlthaff.2017.0883PubMedGoogle ScholarCrossref
    8.
    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. doi:10.1001/jama.2012.207624PubMedGoogle ScholarCrossref
    9.
    Fisher  ES, Wennberg  DE, Stukel  TA, Gottlieb  DJ, Lucas  FL, Pinder  EL.  The implications of regional variations in Medicare spending: part 1, the content, quality, and accessibility of care.  Ann Intern Med. 2003;138(4):273-287. doi:10.7326/0003-4819-138-4-200302180-00006PubMedGoogle ScholarCrossref
    10.
    Rose  JH, O’Toole  EE, Dawson  NV,  et al.  Perspectives, preferences, care practices, and outcomes among older and middle-aged patients with late-stage cancer.  J Clin Oncol. 2004;22(24):4907-4917. doi:10.1200/JCO.2004.06.050PubMedGoogle ScholarCrossref
    11.
    Temel  JS, Greer  JA, Muzikansky  A,  et al.  Early palliative care for patients with metastatic non-small-cell lung cancer.  N Engl J Med. 2010;363(8):733-742. doi:10.1056/NEJMoa1000678PubMedGoogle ScholarCrossref
    12.
    Zhang  B, Nilsson  ME, Prigerson  HG.  Factors important to patients’ quality of life at the end of life.  Arch Intern Med. 2012;172(15):1133-1142. doi:10.1001/archinternmed.2012.2364PubMedGoogle ScholarCrossref
    13.
    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. doi:10.1001/jama.300.14.1665PubMedGoogle ScholarCrossref
    14.
    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. doi:10.1089/jpm.2000.3.287PubMedGoogle ScholarCrossref
    15.
    Barnato  AE, Herndon  MB, Anthony  DL,  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):386-393. doi:10.1097/01.mlr.0000255248.79308.41PubMedGoogle ScholarCrossref
    16.
    Himmelstein  DU, Thorne  D, Warren  E, Woolhandler  S.  Medical bankruptcy in the United States, 2007: results of a national study.  Am J Med. 2009;122(8):741-746. doi:10.1016/j.amjmed.2009.04.012PubMedGoogle ScholarCrossref
    17.
    National Cancer Institute. Surveillance, Epidemiology, and End Results Program. Cancer stat facts: cancer of any site. http://seer.cancer.gov/statfacts/html/all.html. Accessed February 21, 2019.
    18.
    Heron  M.  Deaths: Leading Causes for 2016.  Natl Vital Stat Rep. 2018;67(6):1-77.PubMedGoogle Scholar
    19.
    Bernard  DS, Farr  SL, Fang  Z.  National estimates of out-of-pocket health care expenditure burdens among nonelderly adults with cancer: 2001 to 2008.  J Clin Oncol. 2011;29(20):2821-2826. doi:10.1200/JCO.2010.33.0522PubMedGoogle ScholarCrossref
    20.
    Shankaran  V, Jolly  S, Blough  D, Ramsey  SD.  Risk factors for financial hardship in patients receiving adjuvant chemotherapy for colon cancer: a population-based exploratory analysis.  J Clin Oncol. 2012;30(14):1608-1614. doi:10.1200/JCO.2011.37.9511PubMedGoogle ScholarCrossref
    21.
    The Henry J Kaiser Family Foundation. Summary and chartpack: national survey of households affected by cancer. 2006. http://kff.org/health-costs/poll-finding/summary-and-chartpack-national-survey-of-households/. Published November 1, 2006. Accessed February 18, 2019.
    22.
    Kim  P.  Cost of cancer care: the patient perspective.  J Clin Oncol. 2007;25(2):228-232. doi:10.1200/JCO.2006.07.9111PubMedGoogle ScholarCrossref
    23.
    Allan  GM, Lexchin  J.  Physician awareness of diagnostic and nondrug therapeutic costs: a systematic review.  Int J Technol Assess Health Care. 2008;24(2):158-165. doi:10.1017/S0266462308080227PubMedGoogle ScholarCrossref
    24.
    Allan  GM, Lexchin  J, Wiebe  N.  Physician awareness of drug cost: a systematic review.  PLoS Med. 2007;4(9):e283. doi:10.1371/journal.pmed.0040283PubMedGoogle ScholarCrossref
    25.
    Pacetti  P, Paganini  G, Orlandi  M,  et al.  Chemotherapy in the last 30 days of life of advanced cancer patients.  Support Care Cancer. 2015;23(11):3277-3280. doi:10.1007/s00520-015-2733-6PubMedGoogle ScholarCrossref
    26.
    Näppä  U, Lindqvist  O, Rasmussen  BH, Axelsson  B.  Palliative chemotherapy during the last month of life.  Ann Oncol. 2011;22(11):2375-2380. doi:10.1093/annonc/mdq778PubMedGoogle ScholarCrossref
    27.
    Emanuel  EJ, Young-Xu  Y, Levinsky  NG, Gazelle  G, Saynina  O, Ash  AS.  Chemotherapy use among Medicare beneficiaries at the end of life.  Ann Intern Med. 2003;138(8):639-643. doi:10.7326/0003-4819-138-8-200304150-00011PubMedGoogle ScholarCrossref
    28.
    Department of Defense. Department of Defense Suicide Prevention Office. Suicide data repository. http://www.dspo.mil/About-Suicide/Suicide-Data-Repository/. Accessed November 30, 2017.
    29.
    National Cancer Institute. Surveillance, Epidemiology, and End Results Program. SEER cause of death recode 1969+.https://seer.cancer.gov/codrecode/1969_d04162012/index.html. Published April 16, 2012. Accessed August 6, 2019.
    30.
    Ederer  F, Geisser  MS, Mongin  SJ, Church  TR, Mandel  JS.  Colorectal cancer deaths as determined by expert committee and from death certificate: a comparison. The Minnesota Study.  J Clin Epidemiol. 1999;52(5):447-452. doi:10.1016/S0895-4356(99)00016-5PubMedGoogle ScholarCrossref
    31.
    Albertsen  PC, Walters  S, Hanley  JA.  A comparison of cause of death determination in men previously diagnosed with prostate cancer who died in 1985 or 1995.  J Urol. 2000;163(2):519-523. doi:10.1016/S0022-5347(05)67915-3PubMedGoogle ScholarCrossref
    32.
    Doria-Rose  VP, Marcus  PM.  Death certificates provide an adequate source of cause of death information when evaluating lung cancer mortality: an example from the Mayo Lung Project.  Lung Cancer. 2009;63(2):295-300. doi:10.1016/j.lungcan.2008.05.019PubMedGoogle ScholarCrossref
    33.
    Hynes  DM, Koelling  K, Stroupe  K,  et al.  Veterans’ access to and use of Medicare and Veterans Affairs health care.  Med Care. 2007;45(3):214-223. doi:10.1097/01.mlr.0000244657.90074.b7PubMedGoogle ScholarCrossref
    34.
    Humensky  J, Carretta  H, de Groot  K, Brown  MM, Tarlov  E, Hynes  DM.  Service utilization of veterans dually eligible for VA and Medicare fee-for-service: 1999-2004.  Medicare Medicaid Res Rev. 2012;2(3):mmrr.002.03.a06. doi:10.5600/mmrr.002.03.A06PubMedGoogle ScholarCrossref
    35.
    Petersen  LA, Byrne  MM, Daw  CN, Hasche  J, Reis  B, Pietz  K.  Relationship between clinical conditions and use of Veterans Affairs health care among Medicare-enrolled veterans.  Health Serv Res. 2010;45(3):762-791. doi:10.1111/j.1475-6773.2010.01107.xPubMedGoogle ScholarCrossref
    36.
    Liu  CF, Chapko  M, Bryson  CL,  et al.  Use of outpatient care in Veterans Health Administration and Medicare among veterans receiving primary care in community-based and hospital outpatient clinics.  Health Serv Res. 2010;45(5, pt 1):1268-1286. doi:10.1111/j.1475-6773.2010.01123.xPubMedGoogle ScholarCrossref
    37.
    Liu  CF, Batten  A, Wong  ES, Fihn  SD, Hebert  PL.  Fee-for-service Medicare-enrolled elderly veterans are increasingly voting with their feet to use more VA and less Medicare, 2003-2014.  Health Serv Res. 2018;53(suppl 3):5140-5158. doi:10.1111/1475-6773.13029PubMedGoogle ScholarCrossref
    38.
    Lei  L, Cooley  SG, Phibbs  CS,  et al.  Attributable cost of dementia: demonstrating pitfalls of ignoring multiple health care system utilization.  Health Serv Res. 2018;53(suppl 3):5331-5351. doi:10.1111/1475-6773.13048PubMedGoogle ScholarCrossref
    39.
    US Department of Veterans Affairs. Community care: copayments. https://www.va.gov/COMMUNITYCARE/revenue_ops/copays.asp Published 2019. Updated June 13, 2019. Accessed June 14, 2019.
    40.
    Agency for Healthcare Research and Quality. Medical Expenditure Panel Survey. Using appropriate price indices for analyses of health care expenditures or income across multiple years. https://meps.ahrq.gov/about_meps/Price_Index.shtml. Updated August 2018. Accessed February 18, 2019.
    41.
    Neumann  PJ, Sanders  GD, Russell  LB, Siegel  JE, Ganiats  TG, eds.  Cost-Effectiveness in Health and Medicine. 2nd ed. New York, NY: Oxford University Press; 2016. doi:10.1093/acprof:oso/9780190492939.001.0001
    42.
    Manning  WG, Mullahy  J.  Estimating log models: to transform or not to transform?  J Health Econ. 2001;20(4):461-494. doi:10.1016/S0167-6296(01)00086-8PubMedGoogle ScholarCrossref
    43.
    Quan  H, Sundararajan  V, Halfon  P,  et al.  Coding algorithms for defining comorbidities in ICD-9-CM and ICD-10 administrative data.  Med Care. 2005;43(11):1130-1139. doi:10.1097/01.mlr.0000182534.19832.83PubMedGoogle ScholarCrossref
    44.
    Benjamini  Y, Hochberg  Y.  Controlling the false discovery rate: a practical and powerful approach to multiple testing.  J R Stat Soc Series B Stat Methodol. 1995;57(1):289-300.Google Scholar
    45.
    Byhoff  E, Harris  JA, Langa  KM, Iwashyna  TJ.  Racial and ethnic differences in end-of-life Medicare expenditures.  J Am Geriatr Soc. 2016;64(9):1789-1797. doi:10.1111/jgs.14263PubMedGoogle ScholarCrossref
    46.
    Chastek  B, Harley  C, Kallich  J, Newcomer  L, Paoli  CJ, Teitelbaum  AH.  Health care costs for patients with cancer at the end of life.  J Oncol Pract. 2012;8(6):75s-80s. doi:10.1200/JOP.2011.000469PubMedGoogle ScholarCrossref
    47.
    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):235-242. doi:10.7326/0003-4819-154-4-201102150-00004PubMedGoogle ScholarCrossref
    48.
    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. doi:10.1001/jama.2011.1410PubMedGoogle ScholarCrossref
    49.
    Barnato  AE, Bost  JE, Farrell  MH,  et al.  Relationship between staff perceptions of hospital norms and hospital-level end-of-life treatment intensity.  J Palliat Med. 2007;10(5):1093-1100. doi:10.1089/jpm.2006.0258PubMedGoogle ScholarCrossref
    50.
    Gomes  B, Calanzani  N, Gysels  M, Hall  S, Higginson  IJ.  Heterogeneity and changes in preferences for dying at home: a systematic review.  BMC Palliat Care. 2013;12:7. doi:10.1186/1472-684X-12-7PubMedGoogle ScholarCrossref
    51.
    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. doi:10.1200/JCO.2009.25.4672PubMedGoogle ScholarCrossref
    52.
    Weeks  JC, Catalano  PJ, Cronin  A,  et al.  Patients’ expectations about effects of chemotherapy for advanced cancer.  N Engl J Med. 2012;367(17):1616-1625. doi:10.1056/NEJMoa1204410PubMedGoogle ScholarCrossref
    53.
    The Henry J Kaiser Family Foundation. Income and assets of Medicare beneficiaries, 2014-2030. http://files.kff.org/attachment/issue-brief-income-and-assets-of-medicare-beneficiaries-2014-2030. Published September 2015. Accessed March 1, 2019.
    54.
    Narang  AK, Nicholas  LH.  Out-of-pocket spending and financial burden among Medicare beneficiaries with cancer.  JAMA Oncol. 2017;3(6):757-765. doi:10.1001/jamaoncol.2016.4865PubMedGoogle ScholarCrossref
    55.
    Kantarjian  H, Patel  Y.  High cancer drug prices 4 years later-Progress and prospects.  Cancer. 2017;123(8):1292-1297. doi:10.1002/cncr.30545PubMedGoogle ScholarCrossref
    56.
    Bach  PB, Giralt  SA, Saltz  LB.  FDA approval of tisagenlecleucel: promise and complexities of a $475 000 cancer drug.  JAMA. 2017;318(19):1861-1862. doi:10.1001/jama.2017.15218PubMedGoogle ScholarCrossref
    57.
    Keating  NL, Huskamp  HA, Kouri  E,  et al.  Factors contributing to geographic variation in end-of-life expenditures for cancer patients.  Health Aff (Millwood). 2018;37(7):1136-1143. doi:10.1377/hlthaff.2018.0015PubMedGoogle ScholarCrossref
    58.
    Ebell  MH.  Determining prognosis for patients with terminal cancer.  Am Fam Physician. 2005;72(4):668-669.PubMedGoogle Scholar
    59.
    Krishnan  MS, Epstein-Peterson  Z, Chen  YH,  et al.  Predicting life expectancy in patients with metastatic cancer receiving palliative radiotherapy: the TEACHH model.  Cancer. 2014;120(1):134-141. doi:10.1002/cncr.28408PubMedGoogle ScholarCrossref
    60.
    UpToDate. Survival estimates in advanced terminal cancer. https://www.uptodate.com/contents/survival-estimates-in-advanced-terminal-cancer. Accessed July 30, 2019.
    61.
    Henry J Kaiser Family Foundation. Sources of supplemental coverage among Medicare beneficiaries in 2016. https://www.kff.org/medicare/issue-brief/sources-of-supplemental-coverage-among-medicare-beneficiaries-in-2016/. November 28, 2018. Accessed April 1, 2019.
    62.
    Medicare.gov. Costs of Medigap policies. https://www.medicare.gov/find-a-plan/staticpages/learn/how-insurance-companies-price-policies.aspx. Published 2019. Accessed July 2, 2019.
    63.
    Dusetzina  SB, Keating  NL.  Mind the gap: why closing the doughnut hole is insufficient for increasing Medicare beneficiary access to oral chemotherapy.  J Clin Oncol. 2016;34(4):375-380. doi:10.1200/JCO.2015.63.7736PubMedGoogle ScholarCrossref
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