Background:  In clinical contexts, unrepresented persons (also referred to as unbefriended), are adults who lack capacity for medical decision-making, have no legally documented health care proxy (HCP), and have no identified family or friends to serve as surrogate decision-makers (1-5). The term adult orphan refers to an individual at risk for becoming unrepresented in that they retain medical decision-making capacity but lack an HCP or surrogate (4,5). The unrepresented and adult orphans are vulnerable to goal-discordant care since they have no trusted individual to advocate for their values. Their number is unknown, but social dynamics including a rapid growth in the prevalence of dementia lead many to anticipate a greater prevalence (6,7). There are no national or international standards on how to care for the unrepresented and laws vary state to state (8). This Fast Fact incorporates expert opinion and consensus statements from the American Thoracic Society and American Geriatric Society to address the serious illness care needs of these patient populations (9).

Risk factors and epidemiology: Published studies suggest that older patients who are male, of Hispanic descent, or live alone are at higher risk for becoming unrepresented (4). Other risk factors include homelessness, identifying as LGBTQ+, having a mental illness, substance use disorder, and/or developmental disability (2,3). About 3-4% of patients residing in a skilled nursing facility (SNF), 16% of adults who lack decision-making capacity, and 5-10% of ICU deaths are unrepresented persons (2-7). 

Preventative strategies: Early identification of those at risk of becoming unrepresented (adult orphans) and identification of unrepresented persons before they become critically ill, can improve transitions of care, safeguard against discrimination, reduce undue influence of conflicting interests, and decrease hospitalization length of stay (1,9-12). To facilitate this, clinicians should:

• Perform psychosocial and spiritual assessments that evaluate the nexus of support – family, friends, faith-based community, etc. –of all patients. Involve chaplaincy and social work early and routinely.
• Utilize care coordination rounds (which are often recommended in inpatient care settings) as forums for all interdisciplinary team (IDT) members (e.g., social workers, nurses, chaplains, clinicians) to proactively identify adult orphans or other patients at risk of becoming unrepresented.
• Perform routine assessments of illness insight and decision-making capacity by utilizing ask-tell-ask or “share back” communication techniques since clinicians commonly mistake decision-making capacity (1,13). For cases in which decision-making capacity is not clear-cut, refer to a neuropsychologist, geriatrician, or psychiatrist for a more formal decision-making capacity assessment.  Doing so can help clinicians distinguish unrepresented patients from adult orphans, since some seemingly unrepresented persons may retain decision-making capacity (10,13). 
• If a person is identified as unrepresented or at risk of becoming unrepresented, inquire (if feasible) if there is any trusted figure (e.g., landlord, community member, minister) in the patient’s life who would be willing to advocate for their medical wishes and values if necessary.
• Advance care planning documents such as an HCP form or a MOLST form may be completed even among some unrepresented patients. For example, some patients may lack the capacity to make complex medical decisions regarding surgery, chemotherapy, or CPR, but they may retain capacity for less complicated medical decisions such as naming an HCP.
• Beyond filling out a MOLST and HCP form, explore the patient’s clinically relevant wishes and values as much as possible and document them meticulously (1).

Care strategies for a seriously ill, unrepresented person with unestablished goals of care:

• Early consultation with social work, bioethics and palliative care teams is recommended. These multidisciplinary collaborations can help clinicians weigh the advantages and disadvantages of various care interventions and ensure that decisions are carefully considered (9,12).
• Reach out to outpatient clinicians (PCPs, other specialists) who know the patient better than they do.
• Identify unrepresented persons likely to need SNF placement and involve social work (10).  Not all states have next of kin hierarchies to help clinicians identify a surrogate, thus the unrepresented almost always need a guardian to be considered for a SNF (10). Although it varies by state, guardians are typically court-appointed, non-medical volunteers for at-risk-adult-advocacy agencies who often are unfamiliar with the person’s wishes or values (10,11). Guardianship can encompass decision-making not just for health care, but legal and financial issues as well (10).
• If a clinician has done due diligence and still does not know the unrepresented person’s care preferences, transition from a decision-making standard of substituted judgement (What would they want if they had capacity to tell us?) to a best interest standard (What would a reasonable clinician determine to be the best plan of care considering the entirety of the clinical presentation?) (1,14).
• When utilizing a best interest medical decision-making standard, utilize a diverse, multidisciplinary committee (e.g., an ethics committee) and aim to avoid utilizing the ad hoc opinion of a sole treating clinician. Ideally, this committee includes representation from the community and follows a fair process for clinical decision making. This process may involve a care meeting amongst relevant clinicians to achieve a consensus clinical opinion (9). Such care meetings may have the added value of reducing moral distress among clinicians who individually may be struggling with determining the best clinical interests of the patient (1,10).

References:

1. Pope TM, Bennett J, Carson SS, Cederquist L, Cohen AB, DeMartino ES, Godfrey DM, Goodman-Crews P, Kapp MB, Lo B, Magnus DC, Reinke LF, Shirley JL, Siegel MD, Stapleton RD, Sudore RL, Tarzian AJ, Thornton JD, Wicclair MR, Widera EW, White DB. 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 May 15;201(10):1182-1192. doi: 10.1164/rccm.202003-0512ST. PMID: 32412853; PMCID: PMC7233335.
2. Catlin CC, Connors HL, Teaster PB, Wood E, Sager ZS, Moye J. Unrepresented Adults Face Adverse Healthcare Consequences: The Role of Guardians, Public Guardianship Reform, and Alternative Policy Solutions. J Aging Soc Policy. 2021 Jan 18:1-20. doi: 10.1080/08959420.2020.1851433. Epub ahead of print. PMID: 33461436; PMCID: PMC8286275.
3. Pope TM, Sellers T. Legal briefing: The unbefriended: making healthcare decisions for patients without surrogates (Part 1) and (Part 2) J Clin Ethics. 2012 Spring;23(1):84-96; 23(2) 177-192. PMID: 22462389; PMID 22822709.
4. Cohen AB, Costello DM, OʼLeary JR, Fried TR. Older Adults without Desired Surrogates in a Nationally Representative Sample. J Am Geriatr Soc. 2021 Jan;69(1):114-121. doi: 10.1111/jgs.16813. Epub 2020 Sep 8. PMID: 32898285; PMCID: PMC7854949.
5. Kaplan-Weisman L, Sansone S, Walter E, Crump C. Feasibility of Advance Care Planning in Primary Care for Homeless Adults. J Aging Health. 2020 Aug-Sep;32(7-8):880-891. doi: 10.1177/0898264319862420. Epub 2019 Jul 15. PMID: 31303084.
6. Demographic Turning Points for the United States: Population Projections for 2020 to 2060. Available at: https://www.census.gov/content/dam/Census/library/publications/2020/demo/p25-1144.pdf. Accessed June 30, 2022. 
7. Griggins C, Blackstone E, McAliley L, Daly B. Making Medical Decisions for Incapacitated Patients Without Proxies: Part I. HEC Forum. 2020 Mar;32(1):33-45. doi: 10.1007/s10730-019-09387-3. PMID: 31686275.
8. DeMartino ES, Dudzinski DM, Doyle CK, Sperry BP, Gregory SE, Siegler M, Sulmasy DP, Mueller PS, Kramer DB. Who Decides When a Patient Can’t? Statutes on Alternate Decision Makers. N Engl J Med. 2017 Apr 13;376(15):1478-1482. doi: 10.1056/NEJMms1611497. PMID: 28402767; PMCID: PMC5527273.
9. Pope TM, Bennet J, et al.  Making medical treatment decisions for unpresented patents in the ICU.  An official American Thoracic Society/American Geriatrics Society Policy Statement.  Amer J of Resp and Crit Care Medicine 2020; 201(10): 1182-1192.
10. Chamberlain S, Baik S, Estabrooks C. Going it Alone: A Scoping Review of Unbefriended Older Adults. Can J Aging. 2018 Mar;37(1):1-11. doi: 10.1017/S0714980817000563. Epub 2018 Jan 17. PMID: 29338799; PMCID: PMC5851044.
11. Moye J, Catlin C, Kwak J, Wood E, Teaster PB. Ethical Concerns and Procedural Pathways for Patients Who are Incapacitated and Alone: Implications from a Qualitative Study for Advancing Ethical Practice. HEC Forum. 2017 Jun;29(2):171-189. doi: 10.1007/s10730-016-9317-9. PMID: 28084575; PMCID: PMC5541945.
12. Carney MT, Fujiwara J, Emmert BE Jr, Liberman TA, Paris B. Elder Orphans Hiding in Plain Sight: A Growing Vulnerable Population. Curr Gerontol Geriatr Res. 2016; 2016:4723250. doi: 10.1155/2016/4723250. Epub 2016 Oct 23. PMID: 27843450; PMCID: PMC5097795.
13. Palmer BW, Harmell AL.  Assessment of healthcare decision-making capacity. Arch Clin Neuropsychol 2016; 31(6):530-540.
14. Virgil E.  Substituted judgment – How do you prove what an incapacitated person would want? ACTEC Law Journal 2020; 46(1):Article 20.

Author Affiliations: ¹Montefiore Medical Center, Bronx, NY; ²Yale New Haven Health System, Greenwich, CT; ³Kaiser Permanente Medical Center, Los Angeles, CA; ⁴Columbia University Irving Medical Center, New York, NY.
Conflicts of Interests: None to disclose relevant to the subject of this Fast Fact. 
Version History:  First electronically published in December 2023, originally edited by Sean Marks MD.