Preferences Versus Practice: Life-Sustaining Treatments in Last Months of Life in Long-Term Care

Purpose

To determine prevalence and correlates of decisions made about specific life-sustaining treatments (LSTs) among residents in long-term care (LTC) settings, including characteristics associated with having an LST performed when the resident reportedly did not desire the LST.

Design and Participants

After-death interviews with 1 family caregiver and 1 staff caregiver for each of 327 LTC residents who died in the facility.

Setting

The setting included 27 nursing homes (NHs) and 85 residential care/assisted living (RC/AL) settings in 4 states.

Measurements

Decedent demographics, facility characteristics, prevalence of decisions made about specific LSTs, percentage of time LSTs were performed when reportedly not desired, and characteristics associated with that.

Results

Most family caregivers reported making a decision with a physician about resuscitation (89.1%), inserting a feeding tube (82.1%), administering antibiotics (64.3%), and hospital transfer (83.7%). Reported care was inconsistent with decisions made in 5 of 7 (71.4%) resuscitations, 1 of 7 feeding tube insertions (14.3%), 15 of 78 antibiotics courses (19.2%), and 26 of 87 hospital transfers (29.9%). Decedents who received antibiotics contrary to their wishes were older (mean age 92 versus 85, P=.014). More than half (53.8%) of decedents who had care discordant with their wishes about hospitalization lived in a NH compared with 32.8% of those whose decisions were concordant (P=.034).

Conclusion

Most respondents reported decision making with a doctor about life-sustaining treatments, but those decisions were not consistently heeded. Being older and living in a NH were risk factors for decisions not being heeded.

Keywords: Advance directives, end-of-life care, nursing home, assisted living