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Barriers to Surrogate Application of Patient Values in Medical Decisions in Acute Stroke: Qualitative Study in a Biethnic Community

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Abstract

Background

The objective of this study was to identify barriers to surrogate decision-maker application of patient values on life-sustaining treatments after stroke in Mexican American (MA) and non-Hispanic White (NHW) patients.

Methods

We conducted a qualitative analysis of semistructured interviews with stroke patient surrogate decision-makers completed approximately 6 months after hospitalization.

Results

Forty-two family surrogate decision-makers participated (median age: 54.5 years; female: 83%; patients were MA [60%] and NHW [36%], and 50% were deceased at the time of the interview). We identified three primary barriers to surrogates’ applications of patient values and preferences when making decisions on life-sustaining treatments: (1) a minority of surrogates had no prior discussion of what the patient would want in the event of a serious medical illness, (2) surrogates struggled to apply prior known values and preferences to the actual decisions made, and (3) surrogates felt guilt or burden, often even in the setting of some knowledge of patient values or preferences. The first two barriers were seen to a similar degree in MA and NHW participants, though guilt or burden was reported more commonly among MA (28%) than NHW (13%) participants. Maintaining patient independence (e.g., ability to live at home, avoid a nursing home, make their own decisions) was the most important priority for decision-making for both MA and NHW participants; however, MA participants were more likely to list spending time with family as an important priority (24% vs. 7%).

Conclusions

Stroke surrogate decision-makers may benefit from (1) continued efforts to make advance care planning more common and more relevant, (2) assistance in how to apply their knowledge of patient values to actual treatment decisions, and (3) psychosocial support to reduce emotional burden. Barriers to surrogate application of patient values were generally similar in MA and NHW participants, though the possibility of greater guilt or burden among MA surrogates warrants further investigation and confirmation.

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Acknowledgements

This study was performed in the Corpus Christi Medical Center and CHRISTUS Spohn Hospitals, CHRISTUS Health System, in Corpus Christi, Texas.

Funding

This study was funded by the National Institutes of Health National Institute of Neurological Disorders and Stroke (R01NS091112 and R01NS038916).

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Authors and Affiliations

  1. Stroke Program, University of Michigan, Ann Arbor, MI, USA

    Rebecca J. Lank, Lewis B. Morgenstern, Carmen Ortiz, Erin Case & Darin B. Zahuranec

  2. University of Iowa Carver College of Medicine, Iowa City, IA, USA

    Rebecca J. Lank

  3. Department of Epidemiology, School of Public Health, University of Michigan, Cardiovascular Center Rm 3392 1500 E Medical Center Dr., Ann Arbor, MI, USA

    Lewis B. Morgenstern & Erin Case

Authors
  1. Rebecca J. Lank
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  5. Darin B. Zahuranec
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Contributions

Rebecca J. Lank: study conception and design; data acquisition, analysis, and interpretation; initial drafting of article; critical revision of article; final approval. Lewis B. Morgenstern: study conception and design, obtaining funding, data interpretation, critical revision of article, final approval. Carmen Ortiz: study conception and design, data acquisition and analysis, critical revision of article, final approval. Erin Case: acquisition of data, study conception and design, critical revision of article, final approval. Darin B. Zahuranec: study conception and design; data acquisition, analysis, and interpretation; initial drafting of article; critical revision of article; obtaining funding; final approval. All authors agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Corresponding author

Correspondence to Darin B. Zahuranec.

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Conflict of interest

The authors declare no competing interests.

Ethical approval/informed consent

This study has been approved by the University of Michigan Institutional Review Board and the institutional review boards of both participating hospital systems in Corpus Christi, Texas. Informed consent was obtained from all individual participants included in the study.

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Lank, R.J., Morgenstern, L.B., Ortiz, C. et al. Barriers to Surrogate Application of Patient Values in Medical Decisions in Acute Stroke: Qualitative Study in a Biethnic Community. Neurocrit Care 40, 215–224 (2024). https://doi.org/10.1007/s12028-023-01724-2

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