Opinion
Editorials represent the opinions of the authors and JAMA and not those of the American Medical Association.
EDITORIAL
Quality and Costs of End-of-Life Care The Need for Transparency and Accountability Joan M. Teno, MD, MS; Pedro L. Gozalo, PhD
Increasing attention to the quality of end-of-life care for seriously ill, dying adults has included evaluation of the site of death, place of care, and health care transitions 1 with an important concern being whether these patRelated article page 1888 terns of c are, espec ially receipt of aggressive care, is consistent with patient preferences and improved quality of life. Choices involving these and other aspects of end-of-life care, such as for hospice care, are complex decisions that involve patients, their families, and their physicians. However, as elegantly stated by Levine using the metaphor of “Goldilocks and the Three Bears,”2 the current dilemma that involves the timing of hospice referral is whether it is too late, too early, or just right. In this issue of JAMA, Obermeyer and colleagues3 report findings from their study examining the health care utilization and expenditures for patients with poor-prognosis cancers during the last year of life. The authors used coarsened exact matching to create 18 165 pairs of Medicare beneficiaries with poor-prognosis cancers who were similar, based on available data from Medicare claims, but differed in whether they were enrolled in hospice. Patients who received hospice care, vs matched control patients not receiving hospice, had lower rates of hospitalizations (42% vs 65%), intensive care admissions (15% vs 36%), and invasive procedures (27% vs 51%), as well as lower total expenditures over the last year of life ($62 819 vs $71 517), a relative savings of nearly $9000 per patient who chose hospice. Although the study by Obermeyer et al provides information that adds to the evidence regarding hospice care for patients with poor-prognosis cancer, several caveats should be considered. An important threat to the validity of this cross-sectional, retrospective study was that the unobserved difference in preferences for aggressive care may explain the observed cost savings. Rightfully, the authors acknowledge this and other limitations, such as restriction of the study population to patients with cancer, exclusion of Medicare beneficiaries with managed care and non-Medicare patients, and reliance only on claims-based information for risk adjustments. Despite these limitations, the findings from this study raise several important policy issues. A key policy concern is if hospice saves money, should health care policy promote increased hospice access? Perhaps an even larger policy issue involves the role of costs and not quality in driving US health policy in care of the seriously ill and those at the 1868
close of life. An important concern is that the right quality measures are currently not in place. While the majority of hospice programs are of high quality, there is a significant minority for which there is emerging evidence of concerns, such as increasing rates of hospice live discharges, hospice patients at home who are not visited by professional staff in the last days of life, and for-profit hospice programs that are less likely to provide discretionary or noncore hospice services than nonprofit programs.4-7 Dying patients are a vulnerable population and often are impoverished, frail, older, and cognitively impaired.8 As both private insurers and Medicare change the financial incentives in health care from doing “more” to “less,” there is an increased need for transparency and accountability. The error of having incorrect or substandard quality measures is as serious a concern as policy that focuses solely on expenditures. This is one of the most important lessons from the failed implementation of the Liverpool Care Pathway in the United Kingdom.9 The demise of the Liverpool Care Pathway, a program that had the original intent of guiding the holistic care of dying persons in an acute care hospital, provides important lessons that must be heeded. As reported in the 2013 independent review of the Liverpool Care Pathway,9 the majority of the National Health Systems Trust adopted the Liverpool Care Pathway. Total financial incentives of approximately £30 million (approximately US $48 million) reportedly was paid over a 3-year period to health care trusts for meeting a targeted rate of persons enrolled on the Liverpool Care Pathway.10 The payment of incentives led to the perception that patients were placed on the pathway to enhance the institution’s financial wellbeing, rather than the care of the patient. Transparency and accountability were lacking. Public concern fueled by press reports of bereaved relatives who believed that their loved one’s death was hastened or that artificial hydration and nutrition was stopped without informed consent led to the demise of the Liverpool Care Pathway as recommended in the 2013 independent review.9 In the United States, despite progress in health care accountability, there are opportunities for improvement, as noted in the June 2014 Medicare Payment Advisory Commission (MedPAC) report.11 Currently, quality measures overly rely on process measures with some having concerns such as ceiling effects, as well as poor correlation with health outcome measures. MedPAC is considering population-based outcome measures to report the quality of Medicare’s 3 current payment models. 1 1 This recommendation for
JAMA November 12, 2014 Volume 312, Number 18
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a University of St. Andrews Library User on 05/12/2015
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Editorial Opinion
population-based measures should be taken one step forward: the current patient experience quality measures should not systematically exclude vulnerable populations (such as dying persons and those with dementia) from the denominator. The Hospital Consumer Assessment of Healthcare Providers and Systems excludes all hospitalized patients who died and the survey tool is designed to capture only the perspective of the patient, not the family. This latter exclusion means the proposed 5-star hospital rating system is based on no information about the quality of care of those who died or of hospitalized patients with dementia.12 The general expectation is that persons who choose to enroll in hospice should not die in an acute care hospital, and their hospital expenditures should be less than if they were not enrolled in hospice. The pressing policy issue in the United States does not involve only patients dying of poor-prognosis cancers, but patients with noncancer chronic illness for whom the costs of prolonged hospice stays exceed the potential savings from hospitalizations. Even in that policy debate, focusing solely on expenditures is not warranted. That hospice or hospital-based palliative care teams save money is only ethically defensible if there is ARTICLE INFORMATION Author Affiliations: Brown University School of Public Health, Center for Gerontology and Healthcare Research, Providence, Rhode Island. Corresponding Author: Joan M. Teno, MD, MS, Brown University School of Public Health, Center for Gerontology and Healthcare Research, 121 S Main St, Providence, RI 02912 ([email protected]).
improvement in the quality of care and medical decisions are consistent with the informed patient’s wishes and goals of care. Choosing the “just right” timing and setting for hospice care is a complex decision that should include consideration of several factors, including, most importantly, the preferences and goals of care of patients and their family. Health care professionals should focus on supporting patients’ choice and not be overly influenced by the costs of care or financial incentives tied to the fiscal performance of the health institutions. As financial incentives change in the US health care system, valid measures of care quality are increasingly important for ensuring transparency and accountability. Obermeyer and colleagues3 assessed hospitalization rates, intensive care admissions, and invasive procedures, but additional measures must have evidence of their ability to discriminate the quality of care and must be responsive to change, easy to understand, and actionable. This will involve investing public dollars in the “quality” of quality measures and their dissemination. If quality of care is not front and center, the momentum to improve end-of-life care in the United States could face a serious setback.
3. 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. doi:10.1001/jama.2014.14950. 4. Wachterman MW, Marcantonio ER, Davis RB, McCarthy EP. Association of hospice agency profit status with patient diagnosis, location of care, and length of stay. JAMA. 2011;305(5):472-479.
Conflict of Interest Disclosures: The authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest and none were reported.
5. Teno JM, Plotzke M, Gozalo P, Mor V. A national study of live discharges from hospice. J Palliat Med. 2014;17(10):1121-1127.
Funding/Support: Dr Teno is the recipient of a Robert Wood Johnson Foundation Health Policy Investigators Award grant 71617.
6. Lorenz KA, Ettner SL, Rosenfeld KE, Carlisle DM, Leake B, Asch SM. Cash and compassion: profit status and the delivery of hospice services. J Palliat Med. 2002;5(4):507-514.
REFERENCES
7. Plotzke M, Christian TJ, Pozniak A, et al. Medicare hospice payment reform: analyses to support payment reform. http://www .cms.gov/Medicare/Medicare-Fee-for-Service -Payment/Hospice/Downloads/May-2014 -AnalysesToSupportPaymentReform.pdf. Accessed October 21, 2014.
1. Teno JM, Gozalo PL, Bynum JPW, 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):470477. 2. Levine C. Goldilocks and the Three Hospice Patients. Bioethics Forum. http://www .thehastingscenter.org/Bioethicsforum/Post.aspx ?id=6232. February 19, 2013. Accessed October 14, 2014.
8. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual
jama.com
Preferences Near the End of Life. Washington, DC: National Academies Press; 2014. 9. More care, less pathway: a review of the Liverpool Care Pathway. https://www.gov.uk /government/uploads/system/uploads/attachment _data/file/212450/Liverpool_Care_Pathway.pdf. July 15, 2013. Accessed October 14, 2014. 10. Doughty S. Hospitals bribed to put patients on pathway to death: cash incentive for NHS trusts that meet targets on Liverpool Care Pathway. Daily Mail Online. http://www.dailymail.co.uk/news /article-2223286/Hospitals-bribed-patients -pathway-death-Cash-incentive-NHS-trusts-meet -targets-Liverpool-Care-Pathway.html. October 25, 2012. Accessed October 14, 2014. 11. The Medicare Payment Advisory Commission. Report to the Congress: Medicare Payment Policy. http://www.medpac.gov/documents/reports/jun14 _entirereport.pdf?sfvrsn=0. June 2014. Accessed October 22, 2014. 12. Hospital Consumer Assessment of Healthcare Providers and Systems. CAHPS Hospital Survey. http://www.hcahpsonline.org/StarRatings.aspx. Accessed October 14, 2014.
JAMA November 12, 2014 Volume 312, Number 18
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a University of St. Andrews Library User on 05/12/2015
1869
Editorials represent the opinions of the authors and JAMA and not those of the American Medical Association.
EDITORIAL
Quality and Costs of End-of-Life Care The Need for Transparency and Accountability Joan M. Teno, MD, MS; Pedro L. Gozalo, PhD
Increasing attention to the quality of end-of-life care for seriously ill, dying adults has included evaluation of the site of death, place of care, and health care transitions 1 with an important concern being whether these patRelated article page 1888 terns of c are, espec ially receipt of aggressive care, is consistent with patient preferences and improved quality of life. Choices involving these and other aspects of end-of-life care, such as for hospice care, are complex decisions that involve patients, their families, and their physicians. However, as elegantly stated by Levine using the metaphor of “Goldilocks and the Three Bears,”2 the current dilemma that involves the timing of hospice referral is whether it is too late, too early, or just right. In this issue of JAMA, Obermeyer and colleagues3 report findings from their study examining the health care utilization and expenditures for patients with poor-prognosis cancers during the last year of life. The authors used coarsened exact matching to create 18 165 pairs of Medicare beneficiaries with poor-prognosis cancers who were similar, based on available data from Medicare claims, but differed in whether they were enrolled in hospice. Patients who received hospice care, vs matched control patients not receiving hospice, had lower rates of hospitalizations (42% vs 65%), intensive care admissions (15% vs 36%), and invasive procedures (27% vs 51%), as well as lower total expenditures over the last year of life ($62 819 vs $71 517), a relative savings of nearly $9000 per patient who chose hospice. Although the study by Obermeyer et al provides information that adds to the evidence regarding hospice care for patients with poor-prognosis cancer, several caveats should be considered. An important threat to the validity of this cross-sectional, retrospective study was that the unobserved difference in preferences for aggressive care may explain the observed cost savings. Rightfully, the authors acknowledge this and other limitations, such as restriction of the study population to patients with cancer, exclusion of Medicare beneficiaries with managed care and non-Medicare patients, and reliance only on claims-based information for risk adjustments. Despite these limitations, the findings from this study raise several important policy issues. A key policy concern is if hospice saves money, should health care policy promote increased hospice access? Perhaps an even larger policy issue involves the role of costs and not quality in driving US health policy in care of the seriously ill and those at the 1868
close of life. An important concern is that the right quality measures are currently not in place. While the majority of hospice programs are of high quality, there is a significant minority for which there is emerging evidence of concerns, such as increasing rates of hospice live discharges, hospice patients at home who are not visited by professional staff in the last days of life, and for-profit hospice programs that are less likely to provide discretionary or noncore hospice services than nonprofit programs.4-7 Dying patients are a vulnerable population and often are impoverished, frail, older, and cognitively impaired.8 As both private insurers and Medicare change the financial incentives in health care from doing “more” to “less,” there is an increased need for transparency and accountability. The error of having incorrect or substandard quality measures is as serious a concern as policy that focuses solely on expenditures. This is one of the most important lessons from the failed implementation of the Liverpool Care Pathway in the United Kingdom.9 The demise of the Liverpool Care Pathway, a program that had the original intent of guiding the holistic care of dying persons in an acute care hospital, provides important lessons that must be heeded. As reported in the 2013 independent review of the Liverpool Care Pathway,9 the majority of the National Health Systems Trust adopted the Liverpool Care Pathway. Total financial incentives of approximately £30 million (approximately US $48 million) reportedly was paid over a 3-year period to health care trusts for meeting a targeted rate of persons enrolled on the Liverpool Care Pathway.10 The payment of incentives led to the perception that patients were placed on the pathway to enhance the institution’s financial wellbeing, rather than the care of the patient. Transparency and accountability were lacking. Public concern fueled by press reports of bereaved relatives who believed that their loved one’s death was hastened or that artificial hydration and nutrition was stopped without informed consent led to the demise of the Liverpool Care Pathway as recommended in the 2013 independent review.9 In the United States, despite progress in health care accountability, there are opportunities for improvement, as noted in the June 2014 Medicare Payment Advisory Commission (MedPAC) report.11 Currently, quality measures overly rely on process measures with some having concerns such as ceiling effects, as well as poor correlation with health outcome measures. MedPAC is considering population-based outcome measures to report the quality of Medicare’s 3 current payment models. 1 1 This recommendation for
JAMA November 12, 2014 Volume 312, Number 18
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a University of St. Andrews Library User on 05/12/2015
jama.com
Editorial Opinion
population-based measures should be taken one step forward: the current patient experience quality measures should not systematically exclude vulnerable populations (such as dying persons and those with dementia) from the denominator. The Hospital Consumer Assessment of Healthcare Providers and Systems excludes all hospitalized patients who died and the survey tool is designed to capture only the perspective of the patient, not the family. This latter exclusion means the proposed 5-star hospital rating system is based on no information about the quality of care of those who died or of hospitalized patients with dementia.12 The general expectation is that persons who choose to enroll in hospice should not die in an acute care hospital, and their hospital expenditures should be less than if they were not enrolled in hospice. The pressing policy issue in the United States does not involve only patients dying of poor-prognosis cancers, but patients with noncancer chronic illness for whom the costs of prolonged hospice stays exceed the potential savings from hospitalizations. Even in that policy debate, focusing solely on expenditures is not warranted. That hospice or hospital-based palliative care teams save money is only ethically defensible if there is ARTICLE INFORMATION Author Affiliations: Brown University School of Public Health, Center for Gerontology and Healthcare Research, Providence, Rhode Island. Corresponding Author: Joan M. Teno, MD, MS, Brown University School of Public Health, Center for Gerontology and Healthcare Research, 121 S Main St, Providence, RI 02912 ([email protected]).
improvement in the quality of care and medical decisions are consistent with the informed patient’s wishes and goals of care. Choosing the “just right” timing and setting for hospice care is a complex decision that should include consideration of several factors, including, most importantly, the preferences and goals of care of patients and their family. Health care professionals should focus on supporting patients’ choice and not be overly influenced by the costs of care or financial incentives tied to the fiscal performance of the health institutions. As financial incentives change in the US health care system, valid measures of care quality are increasingly important for ensuring transparency and accountability. Obermeyer and colleagues3 assessed hospitalization rates, intensive care admissions, and invasive procedures, but additional measures must have evidence of their ability to discriminate the quality of care and must be responsive to change, easy to understand, and actionable. This will involve investing public dollars in the “quality” of quality measures and their dissemination. If quality of care is not front and center, the momentum to improve end-of-life care in the United States could face a serious setback.
3. 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. doi:10.1001/jama.2014.14950. 4. Wachterman MW, Marcantonio ER, Davis RB, McCarthy EP. Association of hospice agency profit status with patient diagnosis, location of care, and length of stay. JAMA. 2011;305(5):472-479.
Conflict of Interest Disclosures: The authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest and none were reported.
5. Teno JM, Plotzke M, Gozalo P, Mor V. A national study of live discharges from hospice. J Palliat Med. 2014;17(10):1121-1127.
Funding/Support: Dr Teno is the recipient of a Robert Wood Johnson Foundation Health Policy Investigators Award grant 71617.
6. Lorenz KA, Ettner SL, Rosenfeld KE, Carlisle DM, Leake B, Asch SM. Cash and compassion: profit status and the delivery of hospice services. J Palliat Med. 2002;5(4):507-514.
REFERENCES
7. Plotzke M, Christian TJ, Pozniak A, et al. Medicare hospice payment reform: analyses to support payment reform. http://www .cms.gov/Medicare/Medicare-Fee-for-Service -Payment/Hospice/Downloads/May-2014 -AnalysesToSupportPaymentReform.pdf. Accessed October 21, 2014.
1. Teno JM, Gozalo PL, Bynum JPW, 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):470477. 2. Levine C. Goldilocks and the Three Hospice Patients. Bioethics Forum. http://www .thehastingscenter.org/Bioethicsforum/Post.aspx ?id=6232. February 19, 2013. Accessed October 14, 2014.
8. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual
jama.com
Preferences Near the End of Life. Washington, DC: National Academies Press; 2014. 9. More care, less pathway: a review of the Liverpool Care Pathway. https://www.gov.uk /government/uploads/system/uploads/attachment _data/file/212450/Liverpool_Care_Pathway.pdf. July 15, 2013. Accessed October 14, 2014. 10. Doughty S. Hospitals bribed to put patients on pathway to death: cash incentive for NHS trusts that meet targets on Liverpool Care Pathway. Daily Mail Online. http://www.dailymail.co.uk/news /article-2223286/Hospitals-bribed-patients -pathway-death-Cash-incentive-NHS-trusts-meet -targets-Liverpool-Care-Pathway.html. October 25, 2012. Accessed October 14, 2014. 11. The Medicare Payment Advisory Commission. Report to the Congress: Medicare Payment Policy. http://www.medpac.gov/documents/reports/jun14 _entirereport.pdf?sfvrsn=0. June 2014. Accessed October 22, 2014. 12. Hospital Consumer Assessment of Healthcare Providers and Systems. CAHPS Hospital Survey. http://www.hcahpsonline.org/StarRatings.aspx. Accessed October 14, 2014.
JAMA November 12, 2014 Volume 312, Number 18
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a University of St. Andrews Library User on 05/12/2015
1869
