Dying in hospital of terminal heart failure or severe dementia: the circumstances associated with death and the opinions of caregivers

Background: Improving the care provided to elderly patients affected by end-stage chronic diseases dying in acute hospitals is a health priority. We evaluated the circumstances related to death in end-stage non-cancer patients dying in two acute care hospitals, and their caregiver’s opinions about the death.

Methods: Some 102 patients, over 64 years of age, with end-stage dementia (37%) or congestive heart failure (64%), were included in the study. Caregiver’s opinions on the circumstances of death were obtained using a questionnaire. In addition, we collected data regarding written instructions on several items, including do not resuscitate (DNR) orders, decisions about care in terms of the level or intensity of interventions, information provided to relatives about the prognosis, total withdrawal of normal drug therapy, and provision of palliative care.

Results: Caregivers stated that the clinical information was accurate in 67.6% of cases, and the control of symptoms was good in 55%. However, the perception of pain persisted in 14% and uncontrolled dyspnoea in 45%. The end-of-life care was assessed as: excellent 30.5%, good 36%, fairly good 25.5%, bad 6%, and very bad 2%. DNR orders were specified in 89% of patients, decisions concerning the intensity of care in 64%, and 80% of relatives were aware of the prognosis. Drug therapy was withdrawn in 64% of cases, and terminal palliative care was initiated in 79.5%.

Conclusion: Our results suggest that some aspects of the palliative care provided to elderly patients with end-stage chronic diseases, admitted to acute care hospitals, could be improved. Such aspects include the clinical information provided and the successful control of specific symptoms.