Discussions about end-of-life care in nursing homes

OBJECTIVE: To measure the frequency with which nursing home residents and their surrogates discuss with clinicians the resident's wishes concerning future treatment and to assess the influence of the Patient Self Determination Act (PSDA) on the frequency and nature of such discussions. DESIGN: Retrospective cohort study of residents admitted to nursing homes before and after the PSDA. SETTING: Six large (at least 120 licensed chronic care beds), randomly selected nursing homes in Connecticut. PARTICIPANTS: Six hundred randomly selected nursing home residents admitted during 1990 and 1994 to one of the six study nursing homes. MEASUREMENTS: Documented discussions concerning future treatment wishes were abstracted from residents' nursing home medical records. Participants in the discussion, as well as the timing (i.e., date) and content of the documented discussions were recorded. Sociodemographic and health status factors were also obtained from the medical record. RESULTS: A large majority of residents (71.5%) had no discussion of future treatment wishes documented in their medical record. However, the percentage of residents with documented discussions had increased since the implementation of the PSDA (36.7% post-PSDA vs 20.3% pre-PSDA). Of those in the post-PSDA cohort who had had discussions, 90% had only one discussion within the first year of admission, and more than half (58.1%) of those who had discussions discussed only life-support systems (cardiopulmonary resuscitation, artificial nutrition and hydration, and ventilation) rather than broader preferences for future treatment, including proxy decision-making. CONCLUSIONS: Despite the increased prevalence of discussions about future treatment wishes since the enactment of the PSDA, no discussions were documented for most residents. For those with documented discussions, such conversations occurred rarely and were narrow in scope, suggesting that residents' and families' roles in medical decision-making in nursing homes may be limited.