Hispanic Hospice Patients’ Experiences of End-Stage Restlessness

References

• Administration on Aging [AoA]. (2015). Profile of older Americans: 2015. Retrieved from https://www.acl.gov/sites/default/files/Aging%20and%20Disability%20in%20America/2015-Profile.pdf
   Google Scholar
• Austin, P. C. (2011). An introduction to propensity score methods for reducing the effects of confounding in observational studies. Multivariate Behavioral Research, 46(3), 399–424. doi:10.1080/00273171.2011.568786
   PubMed Web of Science ®Google Scholar
• Berkman, N. D., DeWalt, D. A., Pignone, M. P., Sheridan, S. L., Lohr, K. N., Lux, L., … Bonito, A. J. (2004). Literacy and health outcomes. Evidence Report/Technology Assessment, 87, 1–8.
   Google Scholar
• Bollig, G., Gjengedal, E., & Rosland, J. H. (2015). They know!—Do they? A qualitative study of residents and relatives views on advance care planning, end-of-life care, and decision-making in nursing homes. Palliative Medicine, 1, 1–15. doi:10.1177/0269216315605753
   Google Scholar
• Brinkman-Stoppelenburg, A., Rietjens, J. A., & van der Heide, A. (2014). The effects of advance care planning on end-of-life care: A systematic review. Palliative Medicine, 28(8), 1000–1025. doi:10.1177/0269216314526272
   PubMed Web of Science ®Google Scholar
• Bullock, K., McGraw, S. A., Blank, K., & Bradley, E. H. (2005). What matters to older African Americans facing end-of-life decisions? A focus group study. Journal of Social Work in End-of-Life & Palliative Care, 1(3), 3–19. doi:10.1300/j457v01n03_02
   PubMedGoogle Scholar
• Cagle, J., & Bunting, M. (2017). Patient reluctance to discuss pain: understanding stoicism, stigma, and other contributing factors. Journal of Social Work in End-of-Life & Palliative Care, 13(1), 1–17. doi:10.1080/15524256.2017.1282917
   PubMed Web of Science ®Google Scholar
• Carr, D. (2011). Racial differences in end-of-life planning: Why don’t Blacks and Latinos prepare for the inevitable? OMEGA-Journal of Death and Dying, 63(1), 1–20.
   PubMed Web of Science ®Google Scholar
• Carr, D., & Khodyakov, D. (2007). End-of-life health care planning among young-old adults: An assessment of psychosocial influences. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 62(2), S135–S141. doi:10.1093/geronb/62.2.s135
   PubMed Web of Science ®Google Scholar
• Carrion, I. V. (2010). When do Latinos use hospice services? Studying the utilization of hospice services by Hispanics/Latinos. Social Work in Health Care, 49(3), 197–210. doi:10.1080/00981380903493038
   PubMed Web of Science ®Google Scholar
• Carrion, I. V., & Bullock, K. (2012). A case study of Hispanics and hospice care. International Journal of Humanities and Social Science, 2(4), 9–16.
   PubMedGoogle Scholar
• Carrion, I. V., Cagle, J. G., Van Dussen, D. J., Culler, K. L., & Hong, S. (2015). Knowledge about hospice care and beliefs about pain management: Exploring differences between hispanics and non-hispanics. The American Journal of Hospice & Palliative Care, 32(6), 647–653. doi:10.1177/1049909114536023
   PubMed Web of Science ®Google Scholar
• Centers for Disease Control and Prevention. (2017). Give peace of mind: Advance care planning. Retrieved from https://www.cdc.gov/aging/advancecareplanning/index.htm
   Google Scholar
• Cohen, L. L. (2008). Racial/ethnic disparities in hospice care: A systematic review. Journal of Palliative Medicine, 11(5), 763–768. doi:10.1089/jpm.2007.0216
   PubMed Web of Science ®Google Scholar
• Colby, S. L., & Ortman, J. M. (2015). Projections of the size and composition of the US population: 2014 to 2060. Current Population Reports, P25–1143. Washington (DC): US Census Bureau.
   Google Scholar
• Colon, M. (2005). Hospice and Latinos: A review of the literature. Journal of Social Work in End-of-Life & Palliative Care, 1(2), 27–43. doi:10.1300/j457v01n02_04
   PubMedGoogle Scholar
• Colon, M. (2012). The experience of physicians who refer Latinos to hospice. American Journal of Hospice and Palliative Medicine, 29(4), 254–259. doi:10.1177/1049909111418777
   PubMed Web of Science ®Google Scholar
• Colon, M., & Lyke, J. (2015). Comparison of hospice use by European Americans, African Americans, and Latinos: A follow-up study. American Journal of Hospice and Palliative Medicine, 32(2), 205–209. doi:10.1177/1049909113511143
   PubMed Web of Science ®Google Scholar
• Crawley, L. M. (2005). Racial, cultural, and ethnic factors influencing end-of-life care. Journal of Palliative Medicine, 8(supplement 1), s–58.
   Google Scholar
• Cruz-Oliver, D. M., Talamantes, M., & Sanchez-Reilly, S. (2014). What evidence is available on end-of-life (EOL) care and Latino elders? A literature review. American Journal of Hospice and Palliative Medicine, 31(1), 87–97. doi:10.1177/1049909113480841
   PubMed Web of Science ®Google Scholar
• de la Cruz, M., Noguera, A., San Miguel-Arregui, M. T., Williams, J., Chisholm, G., & Bruera, E. (2015). Delirium, agitation, and symptom distress within the final seven days of life among cancer patients receiving hospice care. Palliative and Supportive Care, 13(2), 211–216. doi:10.1017/s1478951513001144
   PubMed Web of Science ®Google Scholar
• Dwyer, L. L., Harris-Kojetin, L. D., Branden, L., & Shimizu, I. M. (2010). Redesign and operation of the national home and hospice care survey, 2007. Vital Health Statistics, 1, 1–192.
   Google Scholar
• Fosler, L., Staffileno, B. A., Fogg, L., & O’Mahony, S. (2015). Cultural differences in discussion of do-not-resuscitate status and hospice. Journal of Hospice & Palliative Nursing, 17(2), 128–132. doi:10.1097/njh.0000000000000135
   Web of Science ®Google Scholar
• Frahm, K. A., Brown, L. M., & Hyer, K. (2015). Racial disparities in receipt of hospice services among nursing home residents. American Journal of Hospice and Palliative Medicine, 32(2), 233–237. doi:10.1177/1049909113511144
   PubMed Web of Science ®Google Scholar
• Garrido, M. M., Harrington, S. T., & Prigerson, H. G. (2014). End‐of‐life treatment preferences: A key to reducing ethnic/racial disparities in advance care planning? Cancer, 120(24), 3981–3986. doi:10.1002/cncr.28970
   PubMed Web of Science ®Google Scholar
• Garrido, M. M., Idler, E. L., Leventhal, H., & Carr, D. (2013). Pathways from religion to advance care planning: Beliefs about control over length of life and end-of-life values. The Gerontologist, 53(5), 801–816. doi:10.1093/geront/gns128
   PubMed Web of Science ®Google Scholar
• Graeff, A. D., & Dean, M. (2007). Palliative sedation therapy in the last weeks of life: A literature review and recommendations for standards. Journal of Palliative Medicine, 10(1), 67–85. doi:10.1089/jpm.2006.0139
   PubMed Web of Science ®Google Scholar
• Green, C. R., Anderson, K. O., Baker, T. A., Campbell, L. C., Decker, S., Fillingim, R. B., … Todd, K. H. (2003). The unequal burden of pain: Confronting racial and ethnic disparities in pain. Pain Medicine, 4(3), 277–294. doi:10.1046/j.1526-4637.2003.03034.x
   PubMed Web of Science ®Google Scholar
• Hanchate, A., Kronman, A. C., Young-Xu, Y., Ash, A. S., & Emanuel, E. (2009). Racial and ethnic differences in end-of-life costs: Why do minorities cost more than whites? Archives of Internal Medicine, 169(5), 493–501. doi:10.1001/archinternmed.2008.616
   PubMed Web of Science ®Google Scholar
• Harrison, K. L., Adrion, E. R., Ritchie, C. S., Sudore, R. L., & Smith, A. K. (2016). Low completion and disparities in advance care planning activities among older Medicare beneficiaries. JAMA Internal Medicine, 176(12), 1872–1875. doi:10.1001/jamainternmed.2016.6751
   PubMed Web of Science ®Google Scholar
• Head, B., & Faul, A. (2005). Terminal restlessness as perceived by hospice professionals. American Journal of Hospice and Palliative Medicine, 22(4), 277–282. doi:10.1177/104990910502200408
   PubMedGoogle Scholar
• Hewison, A., Badger, F., Clifford, C., & Thomas, K. (2009). Delivering ‘gold standards’ in end-of-life care in care homes: A question of teamwork? Journal of Clinical Nursing, 18(12), 1756–1765. doi:10.1111/j.1365-2702.2008.02613.x
   PubMed Web of Science ®Google Scholar
• Kelley, A. S., Deb, P., Du, Q., Aldridge Carlson, M. D., & Morrison, R. S. (2013). Hospice enrollment saves money for Medicare and improves care quality across a number of different lengths-of-stay. Health Affairs, 32(3), 552–561. doi:10.1377/hlthaff.2012.0851
   Web of Science ®Google Scholar
• Kelley, A. S., Wenger, N. S., & Sarkisian, C. A. (2010). Opiniones: End‐of‐life care preferences and planning of older Latinos. Journal of the American Geriatrics Society, 58(6), 1109–1116. doi:10.1111/j.1532-5415.2010.02853.x
   PubMed Web of Science ®Google Scholar
• Kleinpell, R., Vasilevskis, E. E., Fogg, L., & Ely, E. W. (2016). Exploring the association of hospice care on patient experience and outcomes of care. BMJ Supportive & Palliative Care. doi:10.1136/bmjspcare-2015-001001.
   PubMedGoogle Scholar
• Ko, D. N., Perez-Cruz, P., & Blinderman, C. D. (2011). Ethical issues in palliative care. Primary Care: Clinics in Office Practice, 38(2), 183–193. doi:10.1016/j.pop.2011.03.003
   PubMed Web of Science ®Google Scholar
• Kwak, J., & Haley, W. E. (2005). Current research findings on end-of-life decision making among racial or ethnically diverse groups. The Gerontologist, 45(5), 634–641. doi:10.1093/geront/45.5.634
   PubMed Web of Science ®Google Scholar
• Lathan, C. S., Cronin, A., Tucker-Seeley, R., Zafar, S. Y., Ayanian, J. Z., & Schrag, D. (2016). Association of financial strain with symptom burden and quality of life for patients with lung or colorectal cancer. Journal of Clinical Oncology, 34(15), 1732–1740. doi:10.1200/jco.2015.63.2232
   PubMed Web of Science ®Google Scholar
• Littnerova, S., Jarkovsky, J., Parenica, J., Pavlik, T., Spinar, J., & Dusek, L. (2013). Why to use propensity score in observational studies? Case study based on data from the Czech clinical database AHEAD 2006-09. Cor et Vasa, 55(4), e383–e390. doi:10.1016/j.crvasa.2013.04.001
   Google Scholar
• Lorenz, K., Lynn, J., Morton, S. C., Dy, S., Mularski, R., Shugarman, L.. Shekelle, P. G. (2004). End-of-life care and outcomes. Evidence Report/technology Assessment (Summary), 110, 1.
   Google Scholar
• Morita, T., Akechi, T., Ikenaga, M., Inoue, S., Kohara, H., Matsubara, T., … Uchitomi, Y. (2007). Terminal delirium: recommendations from bereaved families’ experiences. Journal of Pain and Symptom Management, 34(6), 579–589. doi:10.1016/j.jpainsymman.2007.01.012
   PubMed Web of Science ®Google Scholar
• Price, R. A., Parast, L., Haas, A., Teno, J. M., & Elliott, M. N. (2017). Black and Hispanic patients receive hospice care similar to that of white patients when in the same hospices. Health Affairs, 36(7), 1283–1290. doi:10.1377/hlthaff.2017.0151
   Web of Science ®Google Scholar
• Rhodes, R. L., Teno, J. M., & Connor, S. R. (2007). African American berefaved family members’ perceptions of the quality of hospice care: Lessened disparities, but opportunities to improve remain. Journal of Pain and Symptom Management, 34(5), 472–479. doi:10.1016/j.jpainsymman.2007.06.004
   PubMed Web of Science ®Google Scholar
• Rosenbaum, P. R., & Rubin, D. B. (1985). Constructing a control group using multivariate matched sampling methods that incorporate the propensity score. American Statistician, 39, 33–38. doi:10.2307/2683903
   Web of Science ®Google Scholar
• Saunders, C. M., & Baines, M. (1983). Living with dying: the management of terminal disease. Oxford: Oxford University Press.
   Google Scholar
• Sherwood, G., McNeill, J. A., Hernandez, L., Penarrieta, I., & Petersen, J. M. (2005). A multinational study of pain management among Hispanics: An evidence-based approach. Journal of Research in Nursing, 10(4), 403–423. doi:10.1177/174498710501000404
   Google Scholar
• Silveira, M. J., Wiitala, W., & Piette, J. (2014). Advance directive completion by elderly Americans: A decade of change. Journal of the American Geriatrics Society, 62(4), 706–710. doi:10.1111/jgs.12736
   PubMed Web of Science ®Google Scholar
• Singer, A. E., Goebel, J. R., Kim, Y. S., Dy, S. M., Ahluwalia, S. C., Clifford, M., … Goldberg, J. (2016). Populations and interventions for palliative and end-of-life care: A systematic review. Journal of Palliative Medicine, 19(9), 995–1008. doi:10.1089/jpm.2015.0367
   PubMed Web of Science ®Google Scholar
• Singer, A. E., Meeker, D., Teno, J. M., Lynn, J., Lunney, J. R., & Lorenz, K. A. (2015). Symptom trends in the last year of life from 1998 to 2010A cohort study symptom trends in the last year of life. Annals of Internal Medicine, 162(3), 175–183. doi:10.7326/m13-1609
   PubMed Web of Science ®Google Scholar
• Starks, H., Diehr, P., & Curtis, J. R. (2009). The challenge of selection bias and confounding in palliative care research. Journal of Palliative Medicine, 12(2), 181–187. doi:10.1089/jpm.2009.9672
   PubMed Web of Science ®Google Scholar
• StataCorp. (2015). STATA SE Statistical Software: Release 14.0 [Computer software]. College Station, TX: Author.
   Google Scholar
• Sykes, N., & Thorns, A. (2003). Sedative use in the last week of life and the implications for end-of-life decision making. Archives of Internal Medicine, 163(3), 341–344. doi:10.1001/archinte.163.3.341
   PubMedGoogle Scholar
• Teno, J. M., Gozalo, P. L., Lee, I. C., Kuo, S., Spence, C., Connor, S. R., & Casarett, D. J. (2011). Does hospice improve quality of care for persons dying from dementia? Journal of the American Geriatrics Society, 59(8), 1531–1536. doi:10.1111/j.1532-5415.2011.03505.x
   PubMed Web of Science ®Google Scholar
• Teno, J. M., Gruneir, A., Schwartz, Z., Nanda, A., & Wetle, T. (2007). Association between advance directives and quality of end-of-life care: A national study. Journal of the American Geriatrics Society, 55(2), 189–194. doi:10.1111/j.1532-5415.2007.01045.x
   PubMed Web of Science ®Google Scholar
• Thomas, K. (2003). The Gold Standards Framework in community palliative care. European Journal of Palliative Care, 10(3), 113–115. doi:10.1177/0269216308094103
   Google Scholar
• Wolf, M. S., Gazmararian, J. A., & Baker, D. W. (2005). Health literacy and functional health status among older adults. Archives of Internal Medicine, 165(17), 1946–1952. doi:10.1001/archinte.165.17.1946
   PubMed Web of Science ®Google Scholar