Arpine Vardumyan California State University, Long Beach May 2012

1. ArpineVardumyanCalifornia State University, Long Beach May 2012 POLICY ANALYSIS ON TAX EQUITY AND FISCAL RESPONSIBILITY ACT (TEFRA) OF 1982, SECTION 122, HOSPICE CARE

2. Introduction In 1982 Congress passed the Tax Equity and Fiscal Responsibility Act (TEFRA) to include hospice care benefits under Medicare Part A. Hospice care is for terminally ill beneficiaries with life expectancies of 6 months or less.Hospice uses an interdisciplinary team, composed of a physician, registered nurse, social worker, and pastor who work together to provide quality care through comfort measures and support to patients and their families. (National Hospice and Paliative Care Organization [NHPCO], 2010). In 2009 there were 39.6 million seniors in the United States. It is estimated that, by 2030, the number of seniors will double (Administration on Aging [AOA], 2010). It is important to explore barriers in utilizing hospice care for such individuals as life expectancy is expected to increase. Barriers to accessing hospice: (Birnbaum & Patchias, 2010; Christakis, 2000; Hoffman & Tarzian, 2005; Iwashyna, Chang, Zhang, & Christaksi, 2002; C. B. Johnson & Slaninka, 1999; Miller, Lima, Gozalo, & Mor, 2010)

3. Social Work Relevance Social workers are part of the hospice team. Increase in the number of older adults may mean that more social workers will be advocating and assisting older adults. Social workers must know what the hospice legislation is and what is stands for in order to better advocate for their clients. Social workers educated about the policy will be able to help close the gaps of the policy. Social workers will be able to better understand ethical dilemmas of end-of-life decision making for both the patients and for their family and friends. Social workers must understand the policy to effectively educate patients, family members, hospital and/or nursing staff about hospice.

4. Literature Pioneers of hospice: Elisabeth Kübler-Ross: conducted a study on dying patients and interviewed over 200 patients on their experiences. Developed the grief model: denial, anger, bargaining, depression, and acceptance and wrote a book entitled On Death and Dying in 1969. She was also the leader of the hospice movement (Kübler-Ross, 1969). Dame Cicely Saunders: founded the first modern hospice at St. Christopher’s Hospice in London in 1967. Florence Wald: a professor of Nursing at Yale University started the first modern day hospice in America located in New Haven, Connecticut, called Hospice, Inc. (NHPCO, 2010; Adams, 2008). Political Development Leading up to TEFRA By the early 1970s policy makers, with the help of the hospice movement, saw hospice as potentially reducing health care costs and in 1972, the U.S. Senate Special Committee on Aging conducted national hearings. Elisabeth Kübler-Ross testified at the first hearing on the subject of death with dignity (NHPCO, 2010). In 1974 the first hospice legislation was presented by Senators Frank Church and Frank E. Moss to provide federal funds for hospice programs (Forman, Kitzes, Anderson, & Sheehan,2003). Although the legislation was not enacted, it brought more attention to hospice and many organizations started providing funds that supported hospice. The Hospice National Advisory Council was formed in 1974 to support the spread of hospice programs in America. In 1978, the U.S. Department of Health, Education, and Welfare task force concluded a study done on hospice and found that hospice would provide more humane care for people dying of terminal illness and possibly reducing medical costs (NHPCO, 2010) In 1980 the W.K. Kellogg Foundation provided funds that were used to develop a model for hospice programs in order to increase hospice acceptance throughout America (Greer, Mor, Sherwood, Morris, Birnbaum, 1983). The foundation also awarded a grant to the Joint Commission on Accreditation of Hospitals (JCAHO) in 1981 in order to create accreditation standards for hospice (McCann, Hill, & Joint Commission on Accreditation of Hospitals, 1985). In 1981, the Health Policy Alternative, Inc. (HPA) conducted a study that explored hospice costs and the potential impact it would have on the Medicare program. They found that hospice would be more cost effective for Medicare because it would reduce medical costs (Parasi, 1985). 1982 Congress enacted the Tax Equity and Fiscal Responsibility Act of 1982 (Pub. L. No. 97-248, section 122), with a 1986 sunset provision under the Medicare program.

5. Methods David Gil’s Analytical Framework • SECTION  A: ISSUES DEALT WITH BY THE POLICY  I. Nature, scope, and distribution of the issues. 2. Casual theory(ies) or hypothesis(es) concerning the issues. • SECTION B: OBJECTIVES, VALUE PREMISES, THEORETICAL POSITIONS, TARGET SEGMENTS, AND SUBSTANTIATIVE EFFECTS OF THE POLICY I. Policy Objectives: overt objectives and covert objectives. 2. Value premises and ideological orientations underlying the policy objectives: explicit and implicit value premises. 3. Theory(ies) or hypothesis(es) underlying the strategy and the substantive provisions of the policy. 4. Target segments(s) of society- those at whom the policy is aimed: • Ecological, demographic, biological, psychological, social, economic, political, and cultural characteristics. • Size of relevant subgroups and of entire target segments projected over time. 5. Short and long-range effects of the policy on target and nontargetsegment(s) in ecological, demographic, biological, psychological social, economic, political, and cultural spheres • Intended effects and extent of attainment of policy objectives. • Unintended effects. • Overall costs and benefits. • SECTION C: IMPLICATIONS OF THE POLICY FOR THE OPERATING AND OUTCOME VARIABLES OF SOCIAL POLICIES  1. Changes concerning reproduction, socialization, and social control. 2. Consequences of changes concerning resources, work and production, rights, governance and legitimation, and reproduction, socialization, and social control.

6. Sources Used • Data collections used are: • Primary data: government documents, congressional hearings, governmental reports. • Secondary data: journals, peer-reviewed articles, books, policy briefs, and governmental databases.

7. Results of Policy Analysis • TEFRA was created: • To reduce medical costs • Give terminal ill individuals the right to make end-of-life decisions. • Intended objective: Decreasing medical costs was accomplished (Miller, Williams, English, Keyserling,2002). • Intended objective: Increasing the rights to the terminally ill and provide quality care is still in debate and still needs accurate measuring tools and more research. Quality care was seen in hospices ability to manage pain in a timely manner as well as providing bereavement services (Block, Casarett, Spence, Gozalo, Connor, & Teno, 2010; NHPCO, 2011). Although the quality of care has mixed reviews, hospice still provides terminally ill individuals the opportunity to have choices in their end-of-life decisions. • Unintended effects: The inclusion of nursing facilities accepting Medicare hospice. However, the current policy creates a barrier for many people who want hospice but cannot afford the nursing facilities room and board cost (Gage, Miller, Coppola, Harvell, Laliberte, Mor, & Teno,2000). • Unintended effect: Changes of length of coverage. Policy makers changed the coverage guidelines due to the difficulty many doctors faced when projecting a life expectancy of 6 months or less (Gage et al., 2000). Physicians had difficulty predicting life expectancy because they did not have the appropriate training and they did not want to sabotage their reputation by predicting life expectancies that were longer than 6 months. Physicians also do not have adequate education about how to educate patients and family members on hospice (Christakis & Lamont, 2000). More research is needed in finding better ways of predicting life expectancy for diseases to reduce the burden on physician’s and increase enrollment in hospice. • Congress is aware of the difficulty of projecting 6 months or less because a project was designed to disregard the 6 months or less criteria to help increase access to hospice. • The project: Affordable Care Act (ACA) of 2010 • Created to test the hospice eligibility criteria by having demonstration project on 15 hospices located throughout the United States in both urban and rural areas (Legislation Counsel, 2010).  This is a three-year project that has started in 2011 to allow patients to receive hospice care as well as other services covered under Medicare. In addition, the project will help measure the cost effectiveness of the concurrent hospice care (Casarett, 2011; Legislation Counsel, 2010).

8. Results of Policy Analysis • Significant difference between the lack of utilization between Caucasians and minority groups (NHPCO, 2010). Barriers to hospice as reported by research include personal cultural beliefs and norms such as family obligations, trust in the health care system and the lack or limited knowledge of hospice to be able seek hospice(Johnson, Kuchibhatla, & Tulsky, 2008; Reese, Ahern, Nair,O’Faire, & Warren, 1999). • Low socioeconomic status and access to adequate health care has also found to be a barrier. Many minorities live in areas with few, if any hospices to chose from (Christaksi, 2000; Reese et al., 1999; Washington et al., 2008). • The inability to qualify for hospice is also a barrier for minorities who do not have a social security number in order to work in the United States for at least 10 years and pay taxes into FICA (Crawley, Kagawa-Singer, & California HealthCare Foundation, 2007). • Improving minority access to hospice can also be done with future research. Research on minority access can focus on ways of effectively educating and making hospice seem more culturally acceptable. More research must be done on other minority groups such as Asian Americans and Pacific Islanders, Latino, and Middle Easter populations in America to help better understand the barriers to hospice utilization. Understanding the barriers will help open access to hospice for more Americans.

9. Strengths and Challenges of the Policy • Strengths: • Provides quality of care and comfort care (NHPCO, 2011). • Provides beneficiaries and alternative resources. Beneficiaries receiving curative treatment another option if they do not want to continue with treatment (Robinson, Hoyer, & Blackford, 2007). • Less costly then hospital and nursing home costs (Taylor, Ostermann, Van Houtven, Tulsky, & Steinhauser, 2007). • Respite care and bereavement services for family members (Demmer, 2003). • Creates additional career opportunities within the health care system such as medical social workers, home care aides and counseling services. • Challenges: • Hospice does not reimburse the cost of room and board of nursing facilities causing access barriers for nursing home residents (Gage et al., 2000). • Minorities significantly underutilize hospice compared to Caucasians (BosmaApland, & Kazanjian,2010). • Difficulty predicting life expectancy of 6 months or less for physicians (Christakis & Lamont, 2000). • Medicare Eligibility limitations: Individuals must have worked in the United states for at least 10 years and must have contributed funds into the Hospital Insurance Trust Fund under the Federal Insurance Contribution Act of 1935 (Birnbaum & Patchias, 2010). Individuals who are undocumented and living in the United States are not able to use Medicare Hospice.

10. References Adams, C.C. (2008). Florence Wald (1917-2008). Pioneer in hospice care. In The truth about nursing. Retrieved from http://www.truthaboutnursing.org/press/pioneers/florence_wald.html Administration on Aging (AOA). (2010). A profile of older Americans: 2009. Retrieved from http://www.aoa.gov/AoARoot/Aging_Statistics/Profile/2009/10.aspx Birnbaum, M., & Patchias, E. M. (2010). Measuring coverage for seniors in Medicare Part A and estimating the cost of making it universal. Journal of Health Politics, Policy and Law, 35(1), 49-62.  Block, E. M., Casarett, D. J., Spence, C., Gozalo, P., Connor, S. R., & Teno, J. M. (2010). Got Volunteers? Association of hospice use of volunteers with bereaved family members' overall rating of the quality of end-of-life care.Journal of Pain & Symptom Management, 39(3), 502-506. doi:10.1016/j.jpainsymman.2009.11.310   Bosma, H., Apland, L., & Kazanjian, A. (2010). 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