Quality and Costs of End-of-Life Care: The Need for Transparency and Accountability

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 transitions1 with an important concern being whether these patterns of care, especially 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 fromMedicare claims, but differed in whether theywere enrolled in hospice. Patients who received hospice care, vs matched control patients not receiving hospice, had lower ratesofhospitalizations (42%vs65%), 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 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 inhealth care fromdoing “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 isoneof themost important lessons fromthe failed implementation of the Liverpool Care Pathway in the United Kingdom.9 Thedemise of theLiverpool Care Pathway, a program that had theoriginal intentof guiding theholistic careofdyingpersons in anacute carehospital, 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 (approximatelyUS $48million) reportedlywaspaid over a 3-year period to health care trusts formeeting 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 accountabilitywere lacking. Public concern fueledbypress reports of bereaved relativeswhobelieved that their lovedone’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 2014Medicare 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.11 This recommendation for Related article page 1888 Opinion