NEW YORK NURSE: January 2008

Research news you can use: base your practice on evidence

Better palliative care for persons with dementia

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.

Longer, unpredictable course a barrier

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.

Hospice meets needs

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.

Advocating for your patients

Nurses’ circles of influence present many opportunities to advocate for persons with dementia. Some points to keep in mind are:

Introduction of patients, families, and caregivers to a palliative care philosophy from the time symptoms of dementia first appear facilitates communication about goals of care. Broadly defined, palliative care is integrated (combining medical and behavioral healthcare practices) comprehensive (holistic) care for persons with life-threatening or debilitating conditions. Prior to the need for hospice, palliative care that focuses on symptom management, information sharing, advance care planning, and practical assistance with coordination of services helps persons at any stage of illness to be as comfortable, independent, and active as possible.
Persons with dementia and their families have the right to receive information at the time of diagnosis to help them prepare for the future. Even though individuals experience dementia in different ways, knowledge of common issues and treatment decisions invites exploration of patient/family values and relieves uncertainty.
Persons with dementia should be encouraged to participate in decisions about their care even when others have been designated to decide on their behalf.
Understanding that dementia is a terminal illness may better predispose individuals to consider hospice as the end-of-life period draws near. Hospice-based palliative care is a team approach focused on providing intensive pain and symptom management, psychosocial and spiritual support, bereavement follow-up, and other support services to dying persons and their families.
Physicians use condition-specific guidelines, including prognostic criteria for Alzheimer’s disease and related disorders, to determine if patients qualify for hospice services. Once accepted, there is no time limit on length of stay in the program. Persons who continue to meet admission criteria can be recertified. And those who significantly improve to the point of discharge from hospice can reapply and be readmitted when their situation again warrants, regardless of previous admissions.

References

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.