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End-of-Life Care for Patients With Advanced Dementia
To the Editor: Between 2.5 and 4 million US residents have a life-limiting neurological disorder, including Alzheimer disease or related dementia (ADRD),1 that will require end-of-life (EOL) care. Although several groups have provided evidence-based suggestions to improve EOL care in general,2 as well as desirable outcomes for end-stage dementia, the unique characteristics of ADRD3 create unique difficulties at the end of life. In particular, ADRD does not have a predictable time course and causes cognitive and functional impairments that, in turn, predispose to behavioral symptoms. It also destroys intellectual capacity, personality, and the ability to communicate one's wishes for care and produces intense physical, emotional, and financial burden on the family.
Methods
The US Department of Veterans Affairs and the Alzheimer's Association convened an advisory board to examine the current state of EOL care in ADRD and to draft recommendations for improvement of care. A steering committee reviewed published and unpublished data, held focus group meetings with professional caregivers, and conducted a national survey of primary family caregivers of persons who had died from terminal ADRD in the past 6 months to identify elements that either promote or inhibit high-quality care. The committee also convened a panel of experts that participated in a 2 day meeting in which the available information was summarized, desired outcomes were defined, areas considered deficient for EOL care were identified, and a brainstorming session to identify needed changes to make high-quality care a reality was held. The session concluded with agreement on the policy recommendations through a consensus process.4
Results
The panel defined high-quality EOL care for persons with ADRD as care that treats the whole person, reflects the choices and values of the individual, and is provided in a culturally sensitive manner by well-educated and well-supported family members, professionals, paraprofessionals, and volunteers within a seamless network of care. Key elements of high-quality care are resource availability and accessibility; community care settings that meet the needs of patients and families; ongoing processes of educated decision making established early in the diagnosis; and integrated, coordinated provision of care. The opposite—poor quality of care—is characterized by inappropriate interventions, poor symptom management, and inappropriate use of services. The panel formulated 8 recommendations organized into 4 categories (Table 1).
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Table. Recommendations for Improvement of End-of-Life (EOL) Care in Dementia
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Comment
End-of-life care for persons dying with dementia requires specialized knowledge and service arrangements, education for professional and lay caregivers, and continuing evaluation and improvement. Because persons dying with ADRD are vulnerable and depend on others to meet their needs, the US health care system must attend to these unique needs and develop policies to promote compassionate high-quality care.
AUTHOR INFORMATION
Funding/Support: This study was funded by the Alzheimer's Association and supported by the Department of Veterans Affairs, Boston University Alzheimer's Disease Center (P30AG13846), and School of Nursing, Bouve College of Health Sciences, Northeastern University, Boston, Mass.
Disclaimer: The opinions expressed by the authors are not necessarily those of the US Department of Veterans Affairs.
Acknowledgment: Names of the members of the advisory board, expert panel, and brainstorming session are available from the authors on request.
Ann C. Hurley, RN, DNSc;
Ladislav Volicer, MD, PhD;
Zuzka V. Blasi, MEd
Geriatric Research Education Clinical Center
EN Rogers Memorial Veterans Hospital
Bedford, Mass
1. Klein A, Kowall N. Alzheimer's disease and other progressive dementias. In: Volicer L, Hurley AC, eds. Hospice Care for Patients With Advanced Progressive Dementia. New York, NY: Springer Publishing Co; 1998:3-28.
2. Field MJ, Cassel CK. Approaching Death: Improving Care at the End of Life. Washington, DC: National Academy Press; 1997.
3. Mahoney EK, Volicer L, Hurley AC. Management of Challenging Behaviors in Dementia. Baltimore, Md: Health Professions Press; 2000.
4. Hurley AC, Volicer L, Rempusheski VF, Fry S. Reaching consensus: the process of recommending treatment decisions for Alzheimer patients. ANS Adv Nurs Sci. 1995;18(2):33-43.
PUBMED
Letters Section Editors: Stephen J. Lurie, MD, PhD, Senior Editor; Phil B. Fontanarosa, MD, Executive Deputy Editor.
JAMA. 2000;284:2449-2450.
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