Unrepresented adults are individuals who lack decision-making capacity and have neither an available surrogate decision maker nor an applicable advance directive. Currently, the prevalence of unrepresented nursing home (NH) residents and how medical decisions are made is unknown. We examined (1) the prevalence of unrepresented NH residents, (2) NH policies and procedures to address medical decision making for those residents, and (3) NH staff's perceptions of medical decision making for unrepresented residents.
We reviewed resident medical records and NH policy and procedure documents. We also conducted a survey of NH staff using an investigator-developed questionnaire.
Setting and Participants
Sixty-six staff members recruited from 3 NHs (433 residents total) in 1 metropolitan area of Georgia, USA.
Medical records and policy and procedure documents were reviewed using preset criteria. The survey included 31 structured and open-ended questions regarding medical decision-making practices for unrepresented residents (eg, awareness of medical decision-making processes, experiences in medical decision making, and suggestions to improve practice). We used descriptive statistics and conventional content analysis.
Four residents (1%) met the criteria of being unrepresented. We found no written statements that specifically addressed medical decision making for unrepresented residents in the participating NHs. Of 66 survey participants, 11 had been involved in medical decision making for unrepresented residents. The most common decisions involved do-not-resuscitate orders, major medical and surgical treatments, and life-sustaining treatments. These decisions were made primarily by relying on the resident's physician or through discussions within the facility's interdisciplinary team. Suggestions included adopting explicit mechanisms or protocols related to decision making for unrepresented residents, education/training, and resources for group-based decision making.
Conclusions and Implications
Although prevalence in the 3 NHs was low, NH care providers, ethical and legal professionals, and other key stakeholders should discuss practical approaches and policies to systematically identify unrepresented residents and to improve NHs’ medical decision-making practices for them.
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Published online: July 20, 2021
The authors declare no conflicts of interest.
This work was supported by a postdoctoral fellowship grant from the Center for Nursing Excellence in Palliative Care at Nell Hodgson Woodruff School of Nursing, Emory University.
© 2021 AMDA - The Society for Post-Acute and Long-Term Care Medicine.