Abstract
Objectives
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.
Design
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.
Methods
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.
Results
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.
Keywords
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References
- Nursing home data compendium 2015 Edition. 2015.(Available at:)
- Default surrogate consent statutes as of September 2019.(Available at:)
- Treatment decisions regarding hospitalization and surgery for nursing home residents with advanced dementia: The CareAD Study.Int Psychogeriatr. 2008; 20: 406-418
- Incapacitated and Alone: Health Care Decision-Making for the Unbefriended Elderly.American Bar Association Commission on Law and Aging, Washington, DC2003
- Unbefriended and unrepresented: Better medical decision making for incapacitated patients without healthcare surrogates.Ga State Univ Law Rev. 2017; 33
- Advance directives and end-of-life care among nursing home residents receiving maintenance dialysis.Clin J Am Soc Nephrol. 2017; 12: 435-442
- Association of increasing use of mechanical ventilation among nursing home residents with advanced dementia and intensive care unit beds.JAMA Intern Med. 2016; 176: 1809-1816
- The clinical course of advanced dementia.N Engl J Med. 2009; 361: 1529-1538
- End-of-life transitions among nursing home residents with cognitive issues.N Engl J Med. 2011; 365: 1212-1221
- Family involvement at the end-of-life and receipt of quality care.J Pain Symptom Manag. 2014; 48: 1108-1116
- Caring for unbefriended older adults and adult orphans: A clinician survey.Clin Gerontol. 2021; 44: 494-503
- AGS position statement: Making medical treatment decisions for unbefriended older adults.J Am Geriatr Soc. 2017; 65: 14-15
- Medical decision-making for adults who lack decision-making capacity and a surrogate: State of the science.Am J Hosp Palliat Care. 2018; 35: 1227-1234
- Decisions to limit life-sustaining treatment for critically ill patients who lack both decision-making capacity and surrogate decision-makers.Crit Care Med. 2006; 34: 2053-2059
- Life support for patients without a surrogate decision maker: Who decides?.Ann Intern Med. 2007; 147: 34-40
- Three approaches to qualitative content analysis.Qual Health Res. 2005; 15: 1277-1288
- The qualitative content analysis process.J Adv Nurs. 2008; 62: 107-115
- Making medical treatment decisions for unrepresented patients in the ICU. An official American thoracic society/American Geriatrics society policy statement.Am J Respir Crit Care Med. 2020; 201: 1182-1192
- Decision-making laws for "unrepresented" patients.Ann Am Thorac Soc. 2020; 17: 1484-1486
- Wishard Volunteer Advocates Program: An intervention for at-risk, incapacitated, unbefriended adults.J Am Geriatr Soc. 2014; 62: 2171-2179
- Guardianship alliance of Colorado: Volunteer guardian program.(Available at:)https://www.abilityconnectioncolorado.org/guardianshipallianceofcolorado/volunteer-guardian-program/Date accessed: June 15, 2021
- When patients do not have a proxy: A procedure for medical decision making when there is no one to speak for the patient.J Clin Ethics. 2006; 17: 323-330
- Making medical decisions for incapacitated patients without proxies: Part II.HEC Forum. 2020; 32: 47-62
- Making medical decisions for incapacitated patients without proxies: Part I.HEC Forum. 2020; 32: 33-45
- A147987, RG13700100 (Alameda County Super Ct.2019https://law.justia.com/cases/california/court-of-appeal/2019/a147987.htmlDate accessed: February 10, 2021
- Appeals Court Rules in Favor of Interdisciplinary Teams for Certain SNF Patients: For Chief Legal Counsel, Case Managers, Post-Acute Staff.California Hospital Association, Sacramento, CA2019
Article info
Publication history
Published online: July 20, 2021
Footnotes
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.
Identification
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© 2021 AMDA - The Society for Post-Acute and Long-Term Care Medicine.
