The Financial Impact of Terminal Illness on Patients’ and Families Quality of Life: Perceptions of Hospice Social Workers David Hickmann: Social Work-

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The Financial Impact of Terminal Illness on Patients’ and Families Quality of Life: Perceptions of Hospice Social Workers David Hickmann: Social Work- University of Wisconsin-Eau Claire Faculty Mentor: Lisa Quinn-Lee, PhD, MSSW, LICSW Purpose: The purpose of this research is to advance our understanding of the impact of terminal illness on patients’ and families’ quality of life. This research is aimed at uncovering the following question: What are hospice social workers’ perceptions of financial status related to quality of life in hospice patients and their families? The researchers would like to improve the current understanding of the financial burden/impact that terminal illness has on a family. Project Significance: Quality of life is an important and relevant topic in social work and in hospice care. There has been a recent resurgence in the focus of end-of-life issues, especially related to concerns related to quality of life (Steele, Mills, Hardin, & Hussey, 2005). There is a need to determine the factors that are important to terminally ill patients and their families so that we can improve the delivery of and quality of end-of-life care (Steele et al., 2005). The emotional, social, physical, and spiritual dimensions to quality of life are often assessed, discussed, and studied. There is much more research about these four areas than there is about the financial aspect to quality of life. There is less known about financial issues and the impact that terminal illness has on patients and families and their quality of life. Financial quality of life is also important in all aspects of life, and especially at the end of life, when there are many other stresses occurring. Research in hospice is difficult due to a wide variety of reasons, yet a better understanding of quality of life issues at the end of life is important (Wilder et al., 2008). Because of this difficulty, and since this is an exploratory study, this project will involve interviewing hospice social workers rather than hospice patients and families. "It's not all about the money, but it's always about the money." Methodology: Purposive sampling was utilized for this qualitative study, and ten hospice social workers at various hospice agencies in Wisconsin were interviewed for approximately minutes. Open-ended questions posed to the participants allowed them to describe their experiences and perceptions in their own words. Interview responses were transcribed and patterns and themes within the data were identified and analyzed. Interview Questions: 1) How many years have you been a social worker? If less than one year, how many months? 2) How many years have you been a hospice social worker? If less than one year, how many months? 3) Do you serve an urban, suburban, and/or rural population? 4) Do you work full time or part time? If you work part time, how many hours do you work per week? 5) On average, how many patients are on your caseload? 6) How is financial security related to quality of life in hospice patients and their families? 7) In your opinion, what is important to hospice patients and families at the end of life? 8) How do financial issues impact terminally ill patients and families? 9) How often do hospice patients and families face financial issues? 10) Do you complete a financial assessment on hospice patients? If yes, how? If no, do you believe that a financial assessment should be completed on hospice patients? 11) What, if any, changes would you like to see regarding financial issues related to the terminally ill? 12) Is there anything you would like to add concerning this topic?. We thank the Office of Research and Sponsored Programs for supporting and funding this research, and Learning & Technology Services for printing this poster Themes: 1: At the end of life, hospice patients most value pain control, dignity, support, comfort, that they are honored, and that they are at peace with their family. 2: Younger adult hospice patients are less likely to have funeral arrangements and life insurance and are thus more likely to face financial hardship. 3: Comprehensive financial assessments are rarely used by hospice social workers. Part of this stems from hospice patients and families' hesitance to disclose financial need. 4: Hospice social workers would like to see Medicare coverage extend to cover custodial care, funeral costs, and costs involving comfort at the end of life. 5: Hospice patients are frequently concerned about finances near the end of life. Financial hardship often leads to hospice patients ignoring their physical, emotional, spiritual, and psychosocial comfort. Stress is exacerbated by financial worry. I mage from Microsoft Office Bibliography: Steele, L.L., Mills, B., Hardin, S.R., & Hussey, L.C. (2005). The Quality of Life of Hospice Patients: Patient and Provider Perceptions. American Journal of Hospice and Palliative Medicine, 22(2), Wilder, H.M., Parker Oliver, D., Demiris, G., & Washington, J. (2008). Informal Hospice Caregiving: The Toll on Quality of Life. Journal of Social Work in End-of-Life and Palliative Care, 4(4),