Amerika Birleşik Devletleri’nde Bir Sosyal Politika Alanı Olarak Hospis Kullanımını Etkileyen Semptomların Sıklığı ve Çeşitliliği

Yıl 2025, Cilt: 15 Sayı: 1, 151 - 176, 24.03.2025

Hazal Swearinger

Öz

Ölüm sürecinde bireyler toplumun en dezavantajlı gruplarını oluşturur ve sıkça acı, ağrı, nefes darlığı ve üzüntü gibi semptomlar yaşarlar. Amerika Birleşik Devletleri’nde hospis bakım modeli, ölüm sürecindeki hastalar ve ailelerine fizyolojik, psikolojik ve sosyal destek sağlayan disiplinler arası bir sosyal politika alanıdır. Ancak bu modeli şekillendiren politikalar, içerdiği bazı kriterler ve kurallar (örneğin, altı ay veya daha az yaşam beklentisi ve tedavi edici diğer tüm tedavilerden vazgeçme zorunluluğu) nedeniyle sistemsel eşitsizliklere yol açmaktadır. Bu çalışmanın amacı, ABD’de yaşamlarının sonunda hospis kullanan bireylerin özelliklerini, hospis kullanımını belirleyen faktörleri ve terminal dönemde yaşanan semptomların sıklığı ve çeşitliliğinin hospis kullanımını nasıl etkilediğini anlamaktır. National Health and Aging Trends Study'nin ABD’nin yaşlı Medicare sigortalı nüfusunu temsil eden, 2011-2021 dönemini kapsayan verileri kullanılarak ağırlıklandırılmış lojistik regresyon modeli ile analiz yapılmıştır. Katılımcıların %55,75’i hospis kullanmamıştır ve ırk/etnisite, gelir seviyesi, yalnız yaşama durumu ve kurumsal bakım almanın hospis kullanımı ile ilişkili olduğu bulunmuştur. Hospis kullananların daha fazla semptom deneyimlediği ve günlük yaşam aktivitelerinde daha fazla kısıtlama yaşadığı tespit edilmiştir. Bulgular, hospis hizmetlerinin yaşamın son dönemindeki kritik rolünü ve bu hizmetlere erişimdeki eşitsizlikleri ortaya koymaktadır.

Anahtar Kelimeler

Hospis Bakım Modeli, Yaşam Sonu Semptomları, Sosyal Politika, Sosyal Eşitsizlikler, Yaşam Sonu Bakım

Kaynakça

• Aldridge, M. D., Epstein, A. J., Brody, A. A., Lee, E. J., Morrison, R. S., & Bradley, E. H. (2018). Association between hospice spending on patient care and rates of hospitalization and Medicare expenditures of hospice enrollees. Journal of Palliative Medicine, 21(1), 55-61.
• Bhatnagar, M., & Lagnese, K. R. (2021). Hospice care. https://www.ncbi.nlm.nih.gov/books/NBK537296/ (Erişim Tarihi: 15 Haziran 2024)
• Braswell, H. (2017). From disability rights to the rights of the dying (and back again). Laws, 6(4), 31-48.
• Cagle, J. G., LaMantia, M. A., Williams, S. W., Pek, J., & Edwards, L. J. (2016). Predictors of preference for hospice care among diverse older adults. American Journal of Hospice and Palliative Medicine®, 33(6), 574-584.
• Carr, D. (2016). Is death “the great equalizer”? The social stratification of death quality in the United States. The ANNALS of the American Academy of Political and Social Science, 663(1), 331-354.
• Carr, D., & Luth, E. A. (2019). Well-being at the end of life. Annual Review of Sociology, 45, 515-534.
• Comptroller General. (1979). Hospice care: A growing concept in the United States. Report to the Congress of the United States. Washington, DC: US General Accounting Office.
• Connor, S. R. (2008). Development of hospice and palliative care in the United States. OMEGA-Journal of Death and Dying, 56(1), 89-99.
• Cox, C. B. (2015). Social policy for an aging society: A human rights perspective. Springer Publishing Company. Crowley, M. A. (1988). The hospice movement: A renewed view of the death process. Journal of Contemporary Health Law & Policy, 4(1), 295-320.
• DaVanzo, J. E., Chen, D., Greene, J., & Dobson, A. (2019). Hospice: Leading interdisciplinary care. Final Report for the National Hospice and Palliative Care Organization. Vienna: Dobson DaVanzo & Associates, LLC.
• Foster, L., & Woodthorpe, K. (2016). Introduction. L. Foster ve K. Woodthorpe (Ed.), Why death matters to policy içinde (s. 1-15). London: Palgrave Macmillan.
• Freedman, V. A., & Kasper, J. D. (2019). Cohort profile: the National Health and Aging Trends Study (NHATS). International Journal of Epidemiology, 48(4), 1044-1045.
• Freedman, V. A., Hu, M., DeMatteis, J., & Kasper, J. D. (2020). Accounting for sample design in NHATS and NSOC analyses: Frequently asked questions. NHATS Technical Paper, 23, 2021.
• Greer, D. S., Mor, V., Morris, J. N., Sherwood, S., Kidder, D., & Birnbaum, H. (1985). An alternative in terminal care. Evaluation Studies Review Annual, 146.
• Güngördü, N. D., & Üstün, Ç. (2022). Türkiye’de hospiz bakım sisteminin kurulması için bir model önerisi. Mersin Üniversitesi Tıp Fakültesi Lokman Hekim Tıp Tarihi ve Folklorik Tıp Dergisi, 12(3), 464-474.
• Gürkan, N. (2024). Terminal Dönemde Semptom Yönetimi. G. Kaptan & T. Menekli (Ed.), Terminal dönem yönetimini anlamak (s. 101-120). Ankara: Akademisyen Kitabevi.
• Hoerger, M., Perry, L. M., Korotkin, B. D., Walsh, L. E., Kazan, A. S., Rogers, J. L., Atiya, W., Malhotra, S., & Gerhart, J. I. (2019). Statewide differences in personality associated with geographic disparities in access to palliative care: Findings on openness. Journal of Palliative Medicine, 22(6), 628-634.
• Holstein, M., & Cole, T. R. (1996). The evolution of long-term care. In R. H. Binstock, L. E. Cluff, & O. Von Mering (Ed.), The future of long-term care: Social and policy issues (pp. 19-47). Baltimore, MD: Johns Hopkins University Press.
• Hui, D., Mo, L., & Paiva, C. E. (2021). The importance of prognostication: Impact of prognostic predictions, disclosures, awareness, and acceptance on patient outcomes. Current Treatment Options in Oncology, 22, 1-14.
• Hui, D., Mori, M., Parsons, H., et al. (2012). The lack of standard definitions in the supportive and palliative oncology literature. Journal of Pain and Symptom Management, 43, 582-592.
• Hui, D., Nooruddin, Z., Didwaniya, N., Dev, R., De La Cruz, M., Kim, S. H., ... & Bruera, E. (2014). Concepts and definitions for “actively dying,” “end of life,” “terminally ill,” “terminal care,” and “transition of care”: A systematic review. Journal of Pain and Symptom Management, 47(1), 77-89.
• Imhof, S. L., & Kaskie, B. (2008). Promoting a “good death”: Determinants of pain-management policies in the United States. Journal of Health Politics, Policy and Law, 33(5), 907-941.
• Jennings, B. (2014). Solidarity, mortality: The tolling bell of civic palliative care. C. Staudt ve J. H. Ellens (ed.) New venues in the search for dignity and grace (s. 271-288). Praeger.
• Jennings, B., Ryndes, T., D’Onofrio, C., & Baily, M. A. (2003). Access to hospice care: Expanding boundaries, overcoming barriers. Report Special Supplement, 33(2).
• Kamal, A. H., Bull, J., Wolf, S. P., Portman, D., Strand, J., & Johnson, K. S. (2017). Unmet needs of African Americans and Whites at the time of palliative care consultation. American Journal of Hospice and Palliative Medicine®, 34(5), 461-465.
• Kasper, J. D., & Freedman, V. A. (2014). Findings from the 1st round of the National Health and Aging Trends Study (NHATS): Introduction to a special issue. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 69(1), 1-7.
• Krisman-Scott, M. A. (2003). Origins of hospice in the United States: The care of the dying, 1945–1975. Journal of Hospice & Palliative Nursing, 5(4), 205-210.
• Lackan, N. A., Ostir, G. V., Freeman, J. L., Mahnken, J. D., & Goodwin, J. S. (2004). Decreasing variation in the use of hospice among older adults with breast, colorectal, lung, and prostate cancer. Medical Care, 42(2), 116-122.
• Lee, H. J., Small, B. J., & Haley, W. E. (2020). Health and well-being in the year before death: The association with quality of life and care at the end-of-life. Journal of Aging and Health, 32(10), 1475-1485.
• Medicare Payment Advisory Commission. (2023). Report to the Congress: Hospice services. Washington, DC: MedPAC.
• Miller, S. C., Mor, V., & Teno, J. (2003). Hospice enrollment and pain assessment and management in nursing homes. Journal of Pain and Symptom Management, 26(3), 791-799.
• Mor, V., & Teno, J. M. (2016). Regulating and paying for hospice and palliative care: Reflections on the Medicare hospice benefit. Journal of Health Politics, Policy and Law, 41(4), 697-716.
• Mor, V., Greer, D. S., & Kastenbaum, R. (1988). The hospice experiment. Baltimore: The Johns Hopkins Press.
• Murtagh, F. E., Addington‐Hall, J. M., & Higginson, I. J. (2011). End‐stage renal disease: A new trajectory of functional decline in the last year of life. Journal of the American Geriatrics Society, 59(2), 304-308.
• Nelson, K. E., Wright, R., Peeler, A., Brockie, T., & Davidson, P. M. (2021). Sociodemographic disparities in access to hospice and palliative care: An integrative review. American Journal of Hospice and Palliative Medicine®, 38(11), 1378-1390.
• Nicholson, C., & Hockley, J. (2011). Death and dying in older people. B. Monroe, D. Oliviere ve S. Payne (Ed.), Death, dying and social differences içinde (s. 101-110). Oxford: Oxford University Press.
• Noe, K., & Forgione, D. A. (2014). Economic incentives in the hospice care setting: A comparison of for-profit and nonprofit providers. Journal of Public Budgeting, Accounting & Financial Management, 26(2), 233-270.
• Obermeyer, Z., Makar, M., Abujaber, S., Dominici, F., Block, S., & Cutler, D. M. (2014). Association between the Medicare hospice benefit and health care utilization and costs for patients with poor-prognosis cancer. JAMA, 312(18), 1888-1896.
• Price, R. A., Parast, L., Elliott, M. N., Tolpadi, A. A., Bradley, M. A., Schlang, D., & Teno, J. M. (2023). Association of hospice profit status with family caregivers’ reported care experiences. JAMA Internal Medicine, 183(4), 311-318.
• Rauenzahn, S. L., Schmidt, S., Aduba, I. O., Jones, J. T., Ali, N., & Tenner, L. L. (2017). Integrating palliative care services in ambulatory oncology: An application of the Edmonton symptom assessment system. Journal of Oncology Practice, 13(4), 401-407.
• Reichert, E. (2006). Understanding human rights: An exercise book. Thousand Oaks, CA: Sage.
• Rickerson, E., Harrold, J., Kapo, J., Carroll, J. T., & Casarett, D. (2005). Timing of hospice referral and families' perceptions of services: Are earlier hospice referrals better? Journal of the American Geriatrics Society, 53(5), 819-823.
• Robinson, C. A., Hoyer, T., & Blackford, C. (2007). The continuing evolution of Medicare hospice policy. Public Administration Review, 67(1), 127-134.
• Roff, S. (2001). Analyzing end-of-life care legislation: A social work perspective. Social Work in Health Care, 33(1), 51-68.
• Sharafi, S., Ziaee, A., & Dahmardeh, H. (2023). What are the outcomes of hospice care for cancer patients? A systematic review. Supportive Care in Cancer, 31(1), 64-82.
• Singer, A. E., Meeker, D., Teno, J. M., Lynn, J., Lunney, J. R., & Lorenz, K. A. (2016). Factors associated with family reports of pain, dyspnea, and depression in the last year of life. Journal of Palliative Medicine, 19(10), 1066-1073.
• Swearinger, H. (2023). Amerika Birleşik Devletleri'nde yaşlılıkta uzun süreli bakım: Sosyal adalet, sosyal refah ve hizmet modelleri. Sosyal Politika Çalışmaları Dergisi, 23(61), 693-729.
• Şeker, A., & Kurt, G. (2018). Bir sosyal politika alanı olarak yaşlılık ve sosyal hizmet uygulamaları. Nüfusbilim Dergisi, 40, 7-30.
• Teno, J. M., Freedman, V. A., Kasper, J. D., Gozalo, P., & Mor, V. (2015). Is care for the dying improving in the United States? Journal of Palliative Medicine, 18(8), 662-666.
• Teno, J. M. (2023). Hospice—The time is now for additional integrity oversight. JAMA Health Forum, 4(5), e232045.
• Tucker‐Seeley, R. D., Abel, G. A., Uno, H., & Prigerson, H. (2015). Financial hardship and the intensity of medical care received near death. Psycho‐Oncology, 24(5), 572-578.
• University of Chicago. (2023). Final report: Value of hospice in Medicare. https://www.norc.org/content/dam/norc-org/pdf2023/Value%20of%20Hospice%20in%20Medicare_Final%20Report.pdf (Erişim Tarihi: 15 Haziran 2024)
• Wachterman, M. W., & Sommers, B. D. (2006). The impact of gender and marital status on end-of-life care: Evidence from the National Mortality Follow-Back Survey. Journal of Palliative Medicine, 9(2), 343-352.
• Wallace, C. L. (2015). Hospice eligibility and election: Does policy prepare us to meet the need? Journal of Aging & Social Policy, 27(4), 364-380.
• Wallace, C. L., & Wladkowski, S. P. (2023). Improving policy and practices of hospice live discharge: A historical exploration of the Medicare hospice benefit. Journal of Aging & Social Policy, 27(4), 1-16.
• White Orchid Hospice. (2023). A guide to insurance coverage for hospice and palliative care. White Orchid Hospice. https://www.whiteorchidhospice.com/blog/exploring-end-of-life-care-financing-a-guide-to-insurance-coverage-for-hospice-and-palliative-care
• Whitelaw, S., Bell, A., & Clark, D. (2022). The expression of ‘policy’ in palliative care: A critical review. Health Policy, 126(9), 889-898.
• Wright, A. A., Zhang, B., Ray, A., Mack, J. W., Trice, E., Balboni, T., Mitchell, S. L., Jackson, V. A., Block, S. D., Maciejewski, P. K., & Prigerson, H. G. (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA, 300(14), 1665-1673.