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J Pediatr. 2019 Nov 7. pii: S0022-3476(19)31352-6. doi: 10.1016/j.jpeds.2019.10.023. [Epub ahead of print]

Surrogate Decision Making for Children: Who Should Decide?

Author information

1
Boston Children's/Boston Medical Center, Boston, MA.
2
Northwestern University Feinberg School of Medicine, Chicago, IL; Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, IL.
3
Advocate Children's Hospital, Chicago, IL.
4
Department of Pediatrics, University of Chicago, Chicago, IL.
5
Department of Pediatrics, University of Chicago, Chicago, IL. Electronic address: Lross@uchicago.edu.

Abstract

OBJECTIVE:

To identify caregivers' views on preferred surrogate decision makers for their children.

STUDY DESIGN:

A respondent-anonymous survey was distributed to a convenience sample of adults who accompanied a child to general and subspecialty pediatric care at 2 different institutions or were at the bedside of a child in the pediatric intensive care unit at a third institution in Chicago.

RESULTS:

We collected 462 valid surveys. The average age of the legal guardian and accompanying child was 36.8 years and 6.6 years, respectively. Most legal guardians designated "other parent with legal authority" as their first choice surrogate decision maker (70%). Respondent's sex, respondent's age, child's age, and child's ethnicity had no effect on first choice surrogate decision maker. "Other parent with legal authority" was less likely to be first choice surrogate if respondents had Medicaid insurance, less than a college degree, or lived in a non-nuclear household (P<.01 for all factors). The surrogacy ladder selected by 31% of legal guardians was "other parent with legal authority," "child's grandparent(s)," and "child's aunt(s) or uncle(s)." No other sequence received more than 10% designation. Study site had no effect on surrogate preference (P = .30).

CONCLUSIONS:

A surrogacy priority ladder for minors needs to include relatives who are often not included in state surrogacy statutes (eg, grandparents, aunts and uncles). The most popular surrogacy ladder will not be ideal for many families. Parents need to be informed and empowered to choose alternate surrogates, and documented preferences must be easily and widely accessible.

KEYWORDS:

decision maker; ethics; law; parents; pediatric decision making; proxy decision maker

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