NEW YORK NURSE: January 2008
by Bethel Ann Powers, RN, PhD, Professor, University of Rochester School of Nursing, Rochester, NY; Member, Foundation Center for Nursing Research Planning Committee
Hospice is a key palliative care delivery system for persons with terminal illnesses near the end of life. Dementia is a leading cause of death for persons over the age of 65; however, hospice services for affected individuals have long been underutilized.
Dementia often is not viewed as a terminal illness by physicians and the public (Sachs, Shega, & Cox-Hayley, 2004). In contrast to recognized death-causing diseases such as cancer, the illness course is longer with some persons living up to 20 years after diagnosis. Staging systems describe how the disease process may unfold, but they do not provide adequate markers for approaching end of life. Persons dying from dementia experience a slower and less predictable course than persons dying with other diseases (Chen, Chan, Kiely, Morris, & Mitchell, 2007). Difficulty in accurately estimating their life expectancy can bar or limit timely access to hospice programs, whose eligibility requirements, under the Medicare benefit, include a life expectancy of six months or less.
A recent study suggests that hospice care benefits dementia patients (Mitchell, Kiely, Miller, Connor, Spence, & Teno, 2007). Researchers analyzed 77,123 surveys, submitted by 796 hospices nationwide, that were completed by bereaved family members of persons age 65 and older who died with dementia (11.3%), cancer (46.3%), and other chronic diseases (42.4%). Descriptive statistics outlined patient and respondent characteristics, features of the hospice programs, and evaluation of hospice care. Approximately three-quarters of respondents perceived overall hospice care as excellent. This suggests that satisfaction with hospice care for older patients is generally high. Additionally, reports of problems with coordination of care (17.5%), information received regarding patients’ overall conditions (20.1%), information received about treatment of patients’ symptoms (12.2%), and provision of emotional support to the family (29.8%) did not vary with respect to diagnosis. The encouraging message in these findings is that hospice providers appear to be capable of managing the challenges of end-of-life care for persons with dementia at least as well as those with other diagnoses. The percentages also confirm, however, that older persons with dementia still are far less likely to receive hospice care than persons with other diseases.
Nurses’ circles of influence present many opportunities to advocate for persons with dementia. Some points to keep in mind are:
Chen, J-H, Chan, D-C, Kiely, D.K., Morris, J.N., & Mitchell, S.L. (2007). Terminal trajectories of functional decline in the long-term care setting. Journal of Gerontology: Medical Sciences, 62a, 531-536.
Mitchell, S.L., Kiely, D.K., Miller, S.C., Connor, S.R., Spence, C., & Teno, J.M. (2007).Hospice care for patients with dementia. Journal of Pain and Symptom Management, 34, 7-16.
Sachs, G.A., Shega, J.W., & Cox-Hayley, D. (2004). Barriers to excellent end-of-life care for patients with dementia. Journal of General Internal Medicine, 19, 1057-1063.