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Keywords:

  • dementia;
  • discomfort;
  • pneumonia;
  • quality of life;
  • well-being

OBJECTIVES: To assess suffering in demented nursing home patients with pneumonia treated with antibiotics or without antibiotics. This study should provide the first empirical data on whether pneumonia is a “friend” or an “enemy” of demented patients and promote a debate on appropriate palliative care.

DESIGN: Prospective cohort study.

SETTING: Psychogeriatric wards of 61 nursing homes in the Netherlands.

PARTICIPANTS: Six hundred sixty-two demented patients with pneumonia treated with (77%) or without (23%) antibiotics.

MEASUREMENTS: Using an observational scale (Discomfort Scale—Dementia of Alzheimer Type), discomfort was assessed at the time of the pneumonia treatment decision and periodically thereafter for 3 months or until death. (Thirty-nine percent of patients treated with antibiotics and 93% of patients treated without antibiotics died within 3 months.) Physicians also offered a retrospective judgment of discomfort 2 weeks before the treatment decision. In addition, pneumonia symptoms were assessed at baseline and on follow-up. Linear regression was performed with discomfort shortly before death as an outcome.

RESULTS: A peak in discomfort was observed at baseline. Compared with surviving patients treated with antibiotics, the level of discomfort was generally higher in patients in whom antibiotic treatment was withheld and in nonsurvivors. However, these same patients had more discomfort before the pneumonia. Breathing problems were most prominent. Shortly before death from pneumonia, discomfort increased. Discomfort was higher shortly before death when pneumonia was the final cause of death than with death from other causes.

CONCLUSION: Irrespective of antibiotic treatment, pneumonia causes substantial suffering in demented patients. Adequate symptomatic treatment deserves priority attention.