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Research Letter |

Patients With Next-of-Kin Relationships Outside the Nuclear Family FREE

Andrew B. Cohen, MD, DPhil1; Mark Trentalange, MD, MPH1; Terri Fried, MD2
[+] Author Affiliations
1Department of Medicine, Yale University School of Medicine, New Haven, Connecticut
2VA Connecticut Health System, West Haven, Connecticut
JAMA. 2015;313(13):1369-1370. doi:10.1001/jama.2015.2409.
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Published online

For patients who lose capacity and have no legally appointed surrogate decision maker, most states have laws that specify a hierarchy of persons who may serve as surrogate decision makers by default.1 A patient’s spouse is usually given priority, followed by adult children, parents, and siblings.

Even though an increasing number of adults are unmarried and live alone,2 state default surrogate consent statutes vary in their recognition of important relationships beyond the nuclear family, such as friends, more distant relatives, and intimate relationships outside marriage.3 Little is known, however, about how often patients identify a person who is not a nuclear family member as their next of kin.

Patients receiving care at Veterans Health Administration (VHA) facilities are asked for information about their next of kin, which is entered into the electronic record along with a description of the relationship between the patient and next of kin. We reviewed the next-of-kin relationships for patients receiving care at Connecticut VHA facilities from 2003-2013.

Records were excluded if no next-of-kin relationship was listed or if the record indicated that the patient had no next of kin (eg, “has no one” or “outlived everyone”) (n = 23 118). We also excluded records with uninterpretable relationships (n = 219) and those with evidence that the next of kin was also a legally appointed surrogate (eg, a health care proxy) because legally appointed surrogates are subject to different rules (n = 1101). Next-of-kin relationships were grouped into categories.

We used χ2 tests to compare relationships among patients younger than 65 years and those aged 65 years or older, with α = .05 (2-sided). Statistical analysis was performed using SAS version 9.2 (SAS Institute Inc). The VA Connecticut Health System institutional review board approved the study and waived informed consent.

From 2003-2013, 134 241 veterans received care at Connecticut VHA facilities, of whom 109 803 were included. Their mean age was 68.0 years (SD, 18.8 years), 93.3% were men, 87.0% were white, and 53.9% were married. For most patients (92.9%; 95% CI, 92.7%-93.0%), the next of kin was a nuclear family member (Table).

Table Graphic Jump LocationTable.  Next-of-Kin Relationships for Veterans in Connecticut, 2003-2013

For 7761 patients (7.1%; 95% CI, 7.0%-7.2%), a person outside the patient’s nuclear family was listed as next of kin. There were 3190 patients (2.9%; 95% CI, 2.8%-3.0%) with a more distant relative and 4571 (4.2%; 95% CI, 4.1%-4.3%) for whom the individual was not a blood or legal relative. This was most often a friend or an intimate relationship outside marriage (eg, “baby momma,” “common law spouse,” “live-in soul mate,” and “same-sex partner”).

For 849 patients (<1%), the relationship involved another social tie, such as “landlady,” “priest,” “roommate,” or “sponsor.” Veterans younger than 65 years were more likely than those aged 65 years or older (9.2% vs 6.0%, respectively; P < .001) to have a next of kin who was not a nuclear family member.

Among veterans in Connecticut, 7% overall (and 9% of those aged <65 years) had individuals listed as next of kin who were not nuclear family members. State default consent statutes do not universally recognize such persons as decision makers for incapacitated patients. Even though some patients use advance directives to identify decision makers who differ from their next of kin, completion rates remain low.4

Clinicians may be uncertain about whether a next of kin outside the nuclear family may make decisions for an incapacitated person, particularly when difficult choices arise during life-limiting illness. Such uncertainty may interfere with timely clinical care. In some circumstances, a guardian must be appointed, which is a slow and costly process.5

We limited our analysis to Connecticut and to veterans, who are overwhelmingly male, older than the general population, and more likely to be white and married.6 In addition, because structured data about advance directives were unavailable, we could exclude patients with legally designated surrogates only when the next-of-kin information entered in the chart included details about these appointments.

A substantial number of veterans in our sample had a next-of-kin relationship outside the nuclear family. If this finding is confirmed in other populations, states should consider adopting uniform default consent statutes, and these statutes should be broad and inclusive to reflect the evolving social ties in the United States.

Section Editor: Jody W. Zylke, MD, Deputy Editor.

Corresponding Author: Andrew B. Cohen, MD, DPhil, Section of Geriatrics, Department of Internal Medicine, Yale University School of Medicine, 333 Cedar St, New Haven, CT 06520 (andrew.b.cohen@yale.edu).

Author Contributions: Dr Cohen had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study concept and design: Cohen.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Cohen.

Critical revision of the manuscript for important intellectual content: All authors.

Statistical analysis: Cohen, Trentalange.

Obtained funding: Cohen.

Administrative, technical, or material support: Cohen.

Study supervision: Cohen, Fried.

Conflict of Interest Disclosures: The authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest and none were reported.

Funding/Support: Dr Cohen is supported by a grant from the Hartford Centers of Excellence National Program at Yale University and training grant T32AG1934 from the National Institute on Aging. Dr Trentalange is supported by grant P30AG021342 from the Claude D. Pepper Older Americans Independence Center at Yale University School of Medicine.

Role of the Funder/Sponsor: The funders/sponsors had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Castillo  LS, Williams  BA, Hooper  SM, Sabatino  CP, Weithorn  LA, Sudore  RL.  Lost in translation: the unintended consequences of advance directive law on clinical care. Ann Intern Med. 2011;154(2):121-128.
PubMed   |  Link to Article
Agree  EM, Hughes  ME. Demographic trends and later life families in the 21st century. In: Handbook of Families and Aging. Santa Barbara, CA: ABC-CLIO; 2012:9-34.
American Bar Association. Default surrogate consent statutes. http://www.americanbar.org/content/dam/aba/administrative/law_aging/2014_default_surrogate_consent_statutes.authcheckdam.pdf. Accessed February 22, 2015.
Bravo  G, Dubois  MF, Wagneur  B.  Assessing the effectiveness of interventions to promote advance directives among older adults: a systematic review and multi-level analysis. Soc Sci Med. 2008;67(7):1122-1132.
PubMed   |  Link to Article
Pope  TM, Sellers  T.  Legal briefing: the unbefriended: making healthcare decisions for patients without surrogates (part 1). J Clin Ethics. 2012;23(1):84-96.
PubMed
US Department of Veterans Affairs. Profile of Veterans: 2012: data from the American Community Survey. http://www.va.gov/vetdata/docs/SpecialReports/Profile_of_Veterans_2012.pdf. Accessed February 22, 2015.

Figures

Tables

Table Graphic Jump LocationTable.  Next-of-Kin Relationships for Veterans in Connecticut, 2003-2013

References

Castillo  LS, Williams  BA, Hooper  SM, Sabatino  CP, Weithorn  LA, Sudore  RL.  Lost in translation: the unintended consequences of advance directive law on clinical care. Ann Intern Med. 2011;154(2):121-128.
PubMed   |  Link to Article
Agree  EM, Hughes  ME. Demographic trends and later life families in the 21st century. In: Handbook of Families and Aging. Santa Barbara, CA: ABC-CLIO; 2012:9-34.
American Bar Association. Default surrogate consent statutes. http://www.americanbar.org/content/dam/aba/administrative/law_aging/2014_default_surrogate_consent_statutes.authcheckdam.pdf. Accessed February 22, 2015.
Bravo  G, Dubois  MF, Wagneur  B.  Assessing the effectiveness of interventions to promote advance directives among older adults: a systematic review and multi-level analysis. Soc Sci Med. 2008;67(7):1122-1132.
PubMed   |  Link to Article
Pope  TM, Sellers  T.  Legal briefing: the unbefriended: making healthcare decisions for patients without surrogates (part 1). J Clin Ethics. 2012;23(1):84-96.
PubMed
US Department of Veterans Affairs. Profile of Veterans: 2012: data from the American Community Survey. http://www.va.gov/vetdata/docs/SpecialReports/Profile_of_Veterans_2012.pdf. Accessed February 22, 2015.
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