|
Article Excerpt
The mortality rate for individuals with end stage renal disease (ESRD) continues to remain elevated in the United States. Information in the latest report by the U.S. Renal Data System (USRDS) (2007) reflects that individuals with ESRD 20 years of age and older have an eight-fold mortality risk when compared to the general population, decreasing only slightly to seven-fold at age 65 and beyond. Regional variation exists, with the eastern U.S. having higher mortality rates in both the general Medicare population and specifically, the ESRD population. Patients with ESRD are increasingly older and present for treatment with more co-morbid conditions. This is a population that clearly would benefit from hospice services. No studies on utilization and referral to hospice programs by providers of ESRD services are available. As patient-centered care is gaining momentum in all areas of health care, hospice care is a critical component for providing holistic and quality care along the life continuum to patients with ESRD.
While surveys have found that over 90% of Americans would prefer to die in their homes (The Gallup Organization, 1996), Wennberg, Fisher, Stukel, and Sharp (2004) found that approximately 50% die in hospitals and 25% die at home, and in-hospital Medicare deaths range from 16% to 55%. A study at five dialysis clinics revealed similar findings, in that 56% of the sample died in the hospital, 27% at home, and most of the balance in a skilled nursing facility (Cohen, Germain, Woods, Mirot, & Burleson, 2005). Although culture, ethnicity, region, age, family values, customs, health disease perception, provider knowledge base, and discipline may impact utilization and referral rates, less than 50% of patients withdrawing from dialysis utilize hospice services (Murray, Arko, Chen, Gilbertson, & Moss, 2006). Reasons for the lack of hospice referral and utilization have been hypothesized to be complex and varied--a lack of discussion about end-of-life care issues, particularly hospice; abrupt withdrawal from dialysis prohibiting referral; refusal by the patient or family member to accept referral recommendations; a lack of understanding of the hospice referral process by professionals; and a refusal by the hospice organization to accept patients on dialysis.
ESRD networks are quality improvement oversight agencies contracted by the Centers for Medicare and Medicaid Services (CMS) and collect data from ESRD providers for the purpose of program management. Three ESRD networks (NW1, NW5, and NW12) undertook a retrospective qualitative study, based upon historical research methodology, to identify barriers in the ESRD community impeding hospice utilization and referral. This article presents study findings regarding renal professionals' understanding of Medicare hospice benefits as they apply to patients with ESRD and racial and regional utilization of hospice services, and makes recommendations for consideration by the renal community to improve access to hospice for patients with ESRD (geographically, NW1 includes Connecticut, Massachusetts, Maine, New Hampshire, Rhode Island, and Vermont; NW5 includes the District of Columbia, Maryland, Virginia, and West Virginia; and NW12 includes Iowa, Kansas, Missouri, and Nebraska).
Methodology
Research Design
ESRD NWs 1, 5, and 12 developed a universal, structured, interview tool to assess hospice utilization and barriers related to referral. The interview instrument consisted of open and closed-ended questions to elicit subjective perspectives of ESRD facility professionals on patients recently deceased in their unit. It sought to illuminate facility staff members' understanding of events associated with the patients' discontinuation of dialysis, the staff members' definition of discontinuation or withdrawal from treatment, assessment of hospice use, referral to and acceptance of hospice care, and finally, knowledge of Medicare hospice eligibility benefits concurrent with ESRD benefits.
The interview schedule was pilot tested with 12 facilities, specifically assessing the tool's reliability and validity. The interview tool was found credible for this type of study design because interviewers in the pilot study deemed that questions addressed issues of the study. Patient Services Coordinators and/or Quality Improvement Directors of each ESRD network conducted the telephone interviews after staff from NW1 provided standardized training for the interview process.
Study Sample
In the three networks, the CMS death notification forms (Form CMS2746) were examined for deaths occurring between September 1, 2005, and February 28, 2006. Answering "Yes" to question 13 ("Renal replacement therapy discontinued prior to death?") on the CMS death notification form served as the criteria for generating the patient sample. All facilities that submitted forms meeting the above criteria were identified. From...
|
