HEC Forum

pp 1–13 | Cite as

Making Medical Decisions for Incapacitated Patients Without Proxies: Part I

  • Cynthia GrigginsEmail author
  • Eric Blackstone
  • Lauren McAliley
  • Barbara Daly


To date no one has identified or described the population of incapacitated patients being treated in an inpatient setting who lack proxy decision-makers. Nor, despite repeated calls for protocols to be developed for decision-making, has any institution reported on the utilization of such a protocol. In 2005, our urban tertiary care hospital instituted a protocol utilizing community members of the ethics committee to meet with the medical providers and engage in shared decision-making for patients without proxies (PWPs). We conducted a retrospective chart review and in this paper describe nearly 200 patients who were identified and treated according to the protocol over a 12 year period. After an aggressive search, family members were located for a surprising number of patients, leaving 80 patients who needed decisions to be made utilizing the PWP committee. We review the decisions required, the results of the shared decision-making meetings, and the patient outcomes. Our experience has shown that a protocol involving community volunteers to make decisions for PWPs in a timely manner is feasible and ethically defensible. The protocol has been accepted by physicians and utilized with increasing frequency. Because it was possible to gather at least minimal information on most patients, a standard of “informed best interest” was used to make decisions. PWP committee recommendations varied, but in all cases agreement was reached with the attending physicians.


Unbefriended Substituted judgment Best interest Surrogate decision making Ethics committee 



The authors thank O. Mary Dwyer and Hillary Sedlacek for assistance in reviewing medical records, and Dr. Allyson Robichaud for reviewing the manuscript. The authors also thank the volunteers who serve on the PWP committee.

Author contributions

Dr. CG, Ms. LM and Dr. BD were responsible for the concept and design of the study. Dr. CG, Ms. LM, and Mr. EB acquired the data. Dr. CG was responsible for analysis and interpretation of the data, and drafting of the manuscript. Drs. BD and CG and Mr. EB were responsible for critical revision of the manuscript for important intellectual content. Dr. BD provided supervision.

Compliance with Ethical Standard

Conflict of interests

None of the authors have conflicts to report.


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Copyright information

© Springer Nature B.V. 2019

Authors and Affiliations

  1. 1.Neurological InstituteUniversity Hospitals Cleveland Medical CenterClevelandUSA
  2. 2.Department of NeurologyCase Western Reserve University School of MedicineClevelandUSA
  3. 3.Frances Payne Bolton School of NursingCase Western Reserve UniversityClevelandUSA
  4. 4.Clinical Ethics ServiceUniversity Hospitals Cleveland Medical CenterClevelandUSA

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