Treatment choice when faced with high risk of poor outcome – and response to decisions made by surrogates on their behalf
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Abstract
Faced with a high likelihood of poor outcome treatment choice is difficult and few people are certain about what they would, or would not, want. Recognising this we sought to explore how individuals react to hypothetical choices made on their behalf by surrogate decision-makers.
We used an online survey, using a hypothetical scenario involving a 95% chance of poor outcome and 5% chance of good outcome. There were 510 participants. Most (63%) expressed uncertainty regarding preference for treatment. 37% expressed certainty (12% certainly wanting treatment and 25% certainly not wanting treatment). Seventy seven percent indicated they would be understanding or pleased if the surrogate chose to treat, while 92% were understanding or pleased with a decision not to treat by a surrogate decision maker.
Patients who had expressed ‘certain’ wishes when presented with the scenario (either certainly wanting or certainly not wanting treatment) were more likely to be angry/upset when surrogates made the opposite decision. Those who had completed an Advance Care Plan (ACP) were more likely to be angry/upset when these wishes were not followed.
This finding suggests it may be unrealistic to expect surrogate decision-makers to identify ‘what the patient would want’ as a binary choice between consenting to treatment or refusing treatment when chances are poor and the decision is difficult. Asking surrogates to identify choices that they believe would be likely to make the person angry or upset might be more appropriate and more effective.
Most people were understanding of decisions made by surrogates (whether these matched their preference or not). This finding should be used to reassure surrogates who are required to make difficult decisions.
Additionally, factors associated with patient upset/anger at surrogate treatment decisions were identified. This most commonly included those patients who had documented wishes in an Advance Care Plan that was not followed.
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References
2. Wendler, D., and Rid. A. "Systematic review: the effect on surrogates of making treatment decisions for others." Annals of internal medicine 2011; 154.5: 336-346.
3. Wendlandt B, Ceppe A, Choudhury S et al. Risk Factors for Post-Traumatic Stress Disorder Symptoms in Surrogate Decision-Makers of Patients with Chronic Critical Illness. Ann Am Thorac Soc. 2018 Dec; 15(12): 1451-1458.
4. Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: A systematic review. Arch Intern Med. 2014; 166: 493–497.
5. Foy AJ, Levi BH, Van Scoy LJ, Bucher A, Dimmock A, Green MJ. Patient Preference to Accept Medical Treatment Is Associated with Spokesperson Agreement. Annals of the American Thoracic Society. 2019; 16; 4; 518-521.
6. Sadler G, Lee H-C, Lim R, and Fullerton J. Recruiting hard-to-reach United States population sub-groups via adaptations of snowball sampling strategy. Nurs Health Sci. 2010; 12(3): 369–374.
7. White B, Willmott L, Close E, et al. What does “futility” mean? An empirical study of doctors’ perceptions. Med J Aust. 2016 May 2;204(8):318.
8. Spearman CE. The proof and measurement of association between two things. American Journal of Psychology 1904. 15: 72–101.
9. Long JS and Freese J. 2014. Regression Models for Categorical Dependent Variables Using Stata. 3rd ed. College Station, TX: Stata Press.
10. Suhl, J, Simons P, Reedy, T and Garrick, T. Myth of Surrogated Judgment. Surrogate Decision Making Regarding Life Support Is Unreliable. Arch Intern Med. 1994;154:90-96.
11. Rid A, Wesley R, Pavlick M, et al. Patients’ priorities for treatment decision making during periods of incapacity: Quantitative survey. Palliat Support Care. 2015;13: 1165–1183.
12. Parker AM, Bienvenu OJ. Posttraumatic stress disorder symptoms among family decision makers and the potential relevance of study attrition. Crit Care Med. 2015; 43(6):1334-5.
13. Petrinec AB, Martin BR. Post-intensive care syndrome symptoms and health-related quality of life in family decision-makers of critically ill patients. Palliat Support Care. 2017; 26:1-6.
14. Iyengar S. The Art of Choosing. Time Warner. 2011