Dying with Advanced Dementia in Long-Term Care Geriatric Institutions: A Retrospective Study

Objective: The aim of this study is to describe the last month of life of severely demented elders in long-term care institutions, and the clinical decisions in the management of their end-of-life events.

Design: Retrospective exploratory study.

Setting: Seven Italian long-term care institutions with more than 200 beds.

Participants: One hundred forty-one patients with advanced (FAST stage = 7c) dementia (Alzheimer disease, vascular, other kinds of dementia, severe cognitive impairment).

Measurement: Diagnosis, Mini-Mental State Examination, cause of death. Data were collected from clinical and nursing records referring to the last 30 days of life: symptoms and signs, intensity and incidence, treatments (antibiotics, analgesics, anxiolytics, antidepressants, artificial nutrition/hydration, and use of restraints); the last 48 hours: cardiopulmonary resuscitation attempts and life-sustaining drugs.

Results: Patients were given antibiotics (71.6%), anxiolytics (37.1%), and antidepressants (7.8%). Twenty-nine patients (20.5%) were tube- or percutaneous endoscopic gastrostomy (PEG)-fed. Most patients (66.6%) were also parenterally hydrated (72 intravenously, 15 by hypodermoclysis). Some form of physical restraint was used for 58.2% (bed-rails and other immobilizers). Almost half of the patients had pressure sores. In general, attention to physical suffering was fairly good, but during the last 48 hours a number of interventions could be considered inappropriate for these patients: tube feeding (20.5%), intravenous hydration (66.6%), antibiotics (71.6%), and life-sustaining drugs (34.0%).

Conclusions: Some indicators imply a less than optimal quality of care (restraints, pressure sores, psychoactive drugs, and the lack of documentation of shared decision-making) and suggest that far advanced demented patients are not fully perceived as “terminal.”