Abstract
Ethical issues near the end of life often arise because of concerns about how much and what kind of care make sense for someone with a limited life expectancy, especially if the person is very ill. There is often conflict between health professionals and family members about what constitutes appropriate care. Many conflicts can be avoided by clarifying who makes the difficult decisions to limit care, and by advance planning. Caregivers should begin making legal preparations soon after their loved one has been diagnosed with a serious illness. Ethical and legal issues are embedded in the role of family caregiver. As the key decision-maker the family caregiver is faced with choosing options in addressing the concerns and expectations of the care recipient and/or other family members, and their own limitations in skills, time and resources. Decision-making and planning for incapacity, long-term care and death usually do not occur in the advance of an event, therefore, it is not surprising that only 20–30% of Americans have formalized their wishes in the event of their incapacity or death. Decision-making about the future usually occurs at the time of a diagnosis of a terminal illness. Physicians honor the principle of patient autonomy about decisions affecting their lives. A conversation about advance directives and questions about caregiving should involve the physician, patient, and family caregiver. Advance directives help to preserve the recipient’s well-being by protecting them against unwanted medical interventions.
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Notes
- 1.
See Gessert (2008).
- 2.
Many people think that drafting an advance directive is complicated and expensive and requires a lawyer. However, forms for every state (state laws regarding advance directives differ) are available on the Internet, at the National Hospice and Palliative Care Organization’s Web site or through the National Healthcare Decision Day site. An advance directive only needs a few dollars for the services of a notary.
- 3.
See McIntosh (1999).
- 4.
See Colello et al. (2009).
- 5.
Physician aid-in-dying has been legal in Oregon since 1997 and in Washington since 2009. Surveys of individual physicians in practice show that about one in five will receive a request for PAD sometime in their career. Other surveys of physicians show that about half believe that PAD is ethically justified in certain cases. However, professional organizations like the American Medical Association have generally argued against PAD on the grounds that it undermines the integrity of the profession. See http://depts.Washington.edu/bioethx/topics/pad.html. For additional references see Back et al. (1996); Cohen et al. (1994); Ganzini et al. (2000); Ganzini et al. (2001).
- 6.
See American Medical Women’s Association. American Medical Women’s Association Position Paper on Aid in Dying. http://amwa-doc.org/cms_files/original/Aid_in_Dying1.pdf.
- 7.
See California Healthcare Foundation. Survey results. Final Chapter: Californians’ Attitudes and Experience with Death and Dying. February 14, 2012. About 80 % of Californians said that they would want to discuss end-of-life care with their physicians if they had a serious illness, however, only 7 % said they have taken part in such a discussion including 13 % of individuals ages 65 and older.
- 8.
Many cross-cultural differences exist in whether patients and caregivers wish to be fully informed about the patient’s diagnosis, prognosis, and treatment options. There are two medical models of care that may influence an individual’s beliefs about appropriate communication near the end of life. In the U.S. it was common for physicians not to inform the patient of a poor prognosis or diagnosis. However, the current practice in the U.S. emphasizes full disclosure, self-determination and patient autonomy. Conversely, the model in many Eastern countries emphasizes beneficence and maleficence, with little attention given to patient autonomy. See Moeller et al. (2010).
- 9.
The National Center on Elder Abuse (NCEA) serves as a national resource center dedicated to the prevention of elder mistreatment. http://www.aoa.gov/AoA_programs/Elder_Rights/NCEA/index.aspx.
References
Acierno, R., Hernandez-Tejada, M., Muzzy, W., & Steve, K. (2009). The national elder maltreatment study final report Document No. 226456. National Institute of Justice. Washington, DC. http://www.ncjrs.gov/pdffiles1/nig/grants/226456.pdf. Accessed 25 Aug 2012.
Anetzberger, G. J. (2000). Caregiving: Primary cause of elder abuse? Generations, Summer, 46–51.
Back, A. L., et al. (1996). Physician-assisted suicide and euthanasia in Washington State. Patient requests and physician responses. Journal of the American Medical Association, 275(12), 919–925.
Balaban, R. B. (2000). A physician’s guide to talking about end-of-life care. Journal of General Internal Medicine, 15(3), 195–200.
Bonnie, R. J., & Wallace, R. B. (Eds.). (2003). Elder mistreatment: Abuse, neglect, and exploitation in an aging America. (Committee on National Statistics and Committee on Law and Justice, Division of Behavioral and Social Sciences and Education. National Research Council). Washington, DC: The National Academies Press.
Buchanan, A. E., & Brock, D. W. (1989). Deciding for others: The ethics of surrogate decision-making. New York: Cambridge University Press.
Campbell Reay, A. M., & Browne, K. D. (2001). Risk factor characteristics in carers who physically abuse or neglect their elderly dependents. Aging & Mental Health, 5(1), 56–62.
Cohen, J. S., et al. (1994). Attitudes toward assisted suicide and euthanasia among physicians in Washington state. New England Journal of Medicine, 331(2), 89–94.
Colello, K. J., Mulvey, J., Sarata, A. K., Williams, E. D., & Thomas, K. R. (2009). End-of-life care; Services, costs, ethics, and quality of care. Congressional Research Service. Report 7-5700: February 23, 2009.
Ganzini, L., et al. (2000). Physicians’ experiences with the Oregon Death with Dignity Act. New England Journal of Medicine, 342(8), 557–563.
Ganzini, L., et al. (2001). Oregon physicians’ attitudes about and experiences with end-of-life care since passage of the Oregon Death with Dignity Act. Journal of the American Medical Association, 285(18), 2363–2369.
Ganzini, L., Goy, E. R., Dobscha, S. K., & Prigerson, H. (2009). Mental health outcomes of family members of Oregonians who request physician aid in dying. Journal of Pain and Symptom Management, 38(6), 807–815.
Gessert, C. E. (2008). The problem with autonomy: An overemphasis on patient autonomy results in patients feeling abandoned and physicians feeling frustrated. Minnesota medicine, April. http://www.minnesotamedicine.com/Pastissues2008/April2008/CommentaryApril2008.aspx. Accessed 5 Aug 2012.
Gibbs, L. M., & Mosqueda, L. (2004). Confronting elder maltreatment in long-term care. Annals of Long-Term Care, 12(4), 30–35.
Gorbien, M. J., & Einsenstein, A. R. (2005). Elder abuse and neglect: An overview. Clinics in Geriatric Medicine, 21(2), 279–292.
Hebert, L. E., Scherr, P. A., Beckett, L. A., et al. (1995). Age-specific incidence of Alzheimer’s disease in a community population. Journals of the American Medical Association, 273(17), 1354–1359.
Jones, A. (2002). The national nursing home survey: 1999 summary, National Center of Health Statistics. Vital Health Statistics, 13(152), 1–116.
Kapp, M. B. (1991). Legal and ethical issues in family caregiving and the role of public policy. Home Health Care Services Quarterly, 12(4), 5–28.
Kohn, R., & Verhoek-Oftedahl, W. (2011). Caregiving and elder abuse. Medicine & Health/Rhode Island, 94(2), 47–49.
Kuczewski, M. G., & Polansky, R. (Eds.). (2000). Bioethics: Ancient themes in contemporary issues. Cambridge: MIT Press.
Laumann, E. O., Leitsch, S. A., & Waite, L. J. (2008). Elder mistreatment in the United States: Prevalence estimates from a nationally representative study. Journal of Gerontology, 638(4), S248–254.
Leung, J. M., Udris, E. M., Uman, J., & Au, D. H. (2012). The effect of end-of-life discussions on perceived quality of care and health status among patients with COPD. Chest, 142(1), 128–133.
Mack, J. W., Weeks, J. C., Wright, A. A., et al. (2010). End-of-life discussions, goal attainment, and distress at the end-of-life: Predictors and outcomes of receipt of care consistent with preferences. Journal of Clinical Oncology, 28(7), 1203–1208.
Mack, J. W., Cronin, A., Taback, N., et al. (2012). End-of-life care discussions among patients with advanced cancer: A cohort study. Annals of Internal Medicine, 156, 204–210.
McIntosh, J. L. (1999). Death and dying across the life span. In T. L. Whitman, T. V. Merluzzi, & R. D. White (Eds.), Life-span perspectives on health and illness (pp. 249–274). Mahwah: Lawrence Erlbaum Associates.
McNeil, G., Kosberg, J., Durkin, D. W., Deroster, J., & Williamson, G. M. (2010). Caregiver mental health and potentially harmful caregiving behavior: The central role of caregiver anger. The Gerontologist, 50(1), 76–86.
Moeller, J. R., Lewis, M. M., & Werth, J. L. (2010). End-of-life issues. In J. C. Cavanaugh & C. K. Cavanaugh (Eds.), Aging in America, Vol. 1 Psychological aspects. Santa Barbara: ABC–CLIO.
National Center on Elder Abuse (NCEA). (1998). National Center on Elder Abuse (NCEA) at The American Public Health Human Services Association in collaboration with Westat, Inc. Final Report, September, 1998. http://www.aoa.gov/AoARoot/AoA_Programe/Elder_Rights/Elder_Abuse/docs/ABuseReport_Full.pdf. Accessed 25 Aug 2012.
Patterson, K., Grenny, J., McMillan, R., & Switzler, A. (2002). Crucial conversations: Tools for talking when stakes are high. New York: McGraw Hill.
Pavlik, V. N., Hyman, D. J., Festa, N. A., & Dyer, C. B. (2001). Quantifying the problem of abuse and neglect in adults-analysis of a state wide database. Journal of the American Geriatrics Society, 49(1), 45–48.
Pew Research Center. (2006). Strong public support for right to die. Summary of findings. January 6, 2006. http://www.people-press.org/2006/01/05/strong-public-support-for-right-to-die/. Accessed 13 Aug 2012.
Pillemer, K., & Bachman-Prehn, R. (1991). Helping and hurting: Predictors of maltreatment of patients in nursing homes. Research on Aging, 13, 74–95.
Pillemer, K. A., & Finkelhor, D. (1988). The prevalence of elder abuse: A random sample survey. The Gerontologist, 28(1), 51–57.
Pollack, K. M., Morhaim, D., & Williams, M. A. (2010). The public’s perspectives on advance directives: Implications for state legislative and regulatory policy. Health Policy (Amsterdam, Netherlands), 96, 57–63.
Quill, T. E. (2000). Initiating end-of-life discussions with seriously ill patients. Addressing the “elephant in the room.” Journal of the American Medical Association, 284(19), 2502–2507.
Sendensky, M. (2010). 5 years after Schiavo, few make end-of-life plans. Boston.com. Accessed 10 March 2010.
Silveira, M. J., Kim, S. Y. H., & Langa, K. M. (2010). Advance directives and outcomes of surrogate decision-making before death. New England Journal of Medicine, 362(13), 1211–1218.
Tillyard, A. R. J. (2007). Ethics review: ‘Living wills’ and intensive care-an overview of the American experience. Critical Care, 11, 219.
Tonelli, M. K., Braddock, C. H., & Edwards, K. A. (2008). Advance directives. http://depts.washington.edu/bioethx/topics/advdir.htm. Accessed 15 Aug 2012.
Tucker, K. L. (2012). Aid in dying: Guidance for an emerging end-of-life practice. Chest, 142(1), 218–224.
U.S. Government Accounting Office (GAO). (2002). Nursing homes: More can be done to protect residents from abuse. GAO-02-448T, March, 1, 2002.
University of Illinois College of Medicine. (2012). http://www.uic.edu/depts/mcam/ethics/surrogate.htm. Accessed 18 Aug 2012.
University of Washington School of Medicine. (2012). http://depts.washington.edu/bioethx/topics/pad.html. Accessed 20 Aug 2012.
Vande Weerd, C., & Paveza, G. J. (2005). Verbal mistreatment in older adults: A look at persons with Alzheimer’s disease and their caregivers in the state of Florida. Journal of Elder Abuse & Neglect, 17(4), 1–30.
Winzelberg, G. S., Hanson, L. C., & Tulsky, J. A. (2005). Beyond autonomy: Diversifying end-of-life decision-making approaches to serve patients and families. Journal of the American Geriatrics Society, 53(6), 1046–1050.
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Bruhn, J., Rebach, H. (2014). Legal and Ethical Issues in Caregiving. In: The Sociology of Caregiving. Clinical Sociology: Research and Practice. Springer, Dordrecht. https://doi.org/10.1007/978-94-017-8857-1_12
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