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Despite the availability of endorsed quality measures and widespread usage of hospice, hospice quality data are rarely available to consumers. Moreover, little is known about how consumers prioritize extant measures. This study drew on focus group and survey data collected in 5 metropolitan areas. The study found that consumers reported the hospice quality indicators we tested were easy to understand. Participants placed top priority on measures related to pain and symptom management. Relative to consumers with hospice experience, consumers without previous experience tended to place less value on spiritual support for patients and caregivers, emotional support for caregivers, and after-hours availability. The National Quality Forum-approved measures resonate well with consumers. Consumers also appear to be ready for access to data on the quality of hospice providers.

The Affordable Care Act requires US hospices to report quality data to the Centers for Medicare and Medicaid Services (CMS) in 2013 with data eventually being made public. There may be some benefit to participating in a voluntary public-reporting program prior to public disclosure by CMS; therefore, we developed and conducted an electronic survey exploring California hospices’ perceptions of public reporting. The majority (78.1%) of respondents reported current use of the Family Evaluation of Hospice Care tool and a willingness to consider voluntary participation in a public-reporting program outside of what is being implemented by CMS (58.6%). Tax status of responding hospices was not predictive of a willingness to participate in a statewide public-reporting program of hospice quality in our study.

Article-at-a-Glance Background Standardized measures are available to assess hospice quality across multiple domains, but no information on hospice quality is available to the public. A study was conducted in 2006 to explore the public's knowledge, beliefs, and attitudes about hospice care and their responses to the idea of a public report on comparative hospice quality. Methods Six focus groups were conducted, two with individuals with direct hospice care experience and four with people without experience. Focus groups were videotaped, transcribed, and analyzed for themes and patterns of convergence and divergence. Results Focus group participants without hospice experience knew of hospice but had little accurate information about hospices services, who could benefit, or how it is financed. Even some with hospice experience were unaware of services such as bereavement support. Participants saw hospice as appropriate only when the family could no longer provide care. They wanted a public report to include information about hospice, help in comparing hospice to other kinds of end-of-life care, details on accreditation, staff and services of individual hospices, quality comparisons, and decision support. Hospice was viewed as providing a broad range of services to the family as well as the patient. Discussion This research will provide guidance for the development of an evidence-based model report on hospice quality that includes substantial educational material. It also supports the selection of measures for such a report that would resonate with the public, which makes the use of a comparative quality report more likely. The next step in this research is to develop and formatively test such a report, so that it can be pilot tested with willing hospices in a community offering a choice of providers. Considerable additional work is needed to ensure that hospice becomes more understandable and transparent to the public.

Growing competition in health care markets and Medicaid managed care, combined with cuts in government funds that subsidize care to the uninsured, are challenging the viability of the safety net. In response to these pressures, "safety-net" providers in fifteen communities are integrating vertically and horizontally, contracting with or forming managed care plans, and seeking to attract paying patients. Such strategies appear to be successful for community-based primary care clinics, but other providers--including hospitals that cannot quickly develop primary care capacity, most local health departments, and providers that fail to attract Medicaid patients--are more vulnerable to health system changes. While the safety net may be intact now, access to care among the uninsured is more at risk in communities without state programs or local taxes that subsidize such care.

In response to today's health care environment, a metropolitan area association of hospices developed a collaborative hospital liaison program to educate and maximize referral sources, improve patient access to services and assist in ensuring the long-term survival of hospice care. Five hospices participated in the study, analyzing data on the numbers, sources and appropriateness of referrals and admissions, liaison staff expense and hospice relations with hospital staff. Recommendations were made for further collaborative efforts.

Unlike other aspects of American health experience, there is a current void of accurate statistics on expensive illness experiences. This paper is designed to fill this void. Accurate information will allow the development of an improved framework for discussions of the cost of national health insurance and methods of containing the growth of medical price inflation (insofar as it is affected by large medical expenses) and overall medical expenditure growth. This paper presents a preliminary cross-sectional analysis of the incidence and cost of catastrophic illness in the United States, where catastrophic illness is defined as an illness episode for which a person incurs 55000 or more of medical expenses in a calendar year. The following data are included in the profile: the incidence rate of a catastrophic illness, the average cost of a catastrophic episode, the total number of individuals who incur catastrophic expenses, and the total national cost of all catastrophic episodes. The demographic profile disaggregates these results by specific age, sex, income, and geographic region categories.