The number of people living with Alzheimer disease and other dementias continues to grow because of the aging of the US population. Increasingly, the issue of patient- and/or surrogate-directed withholding of oral, hand-fed food and fluids in cases of late-stage dementia is confronting caregivers. Major media outlets have covered several cases wherein patients with explicit directives or clear surrogate decision making were not allowed to face the end of their lives according to their wishes. Ethical and legal scholars, as well as many end-of-life advocacy groups, are working to develop a framework and provide guidance in these cases. A local hospice organization was faced with these ethical deliberations when an activated proxy decision maker advocated for caregivers to stop hand feeding an incapacitated patient with end-stage dementia. In this article, this case is summarized, and this important ethical issue is presented in the setting of a literature review and nursing implications.
Julie Christenson, DNP, RN, FNP-BC, APNP, is community hospice and palliative care nurse practitioner, Horizon Home Care & Hospice, Inc, Milwaukee, Wisconsin; and clinical assistant professor, University of Wisconsin-Milwaukee College of Nursing.
Address correspondence to Julie Christenson, DNP, RN, FNP-BC, APNP, College of Nursing, University of Wisconsin-Milwaukee, 1921 E Hartford Ave, Milwaukee, WI 53211 (firstname.lastname@example.org).
The author has no conflicts of interest to disclose.