Underlying assumptions and potential ramifications of having proxy subjective health status

Proxy subjective health status is a hypothesis underlying Nursing Middle Range theory. Specifically, the temporal nature of proxy subjective health status means that patients can change their perceptions and grasp what they consider quality or healthy living. Measures performed by family members or healthcare providers are considered evaluative measures or proxy subjective health status by AlRuthia and colleagues (2021, p. 730). Using proxy decision-makers has been called into question because of concerns about the “accuracy” of proxy decision-making, including the fact that proxies may be unable to accurately predict the desires of permanently disabled patients in as many as one-third of those cases (Fernández-Lora & Provost, 2022, p.2). According to the definition of ‘accuracy,’ a proxy accurately infers a person’s preferences based on the idea that there is only one choice. Patients’ stated preferences and proxy-reported judgments are frequently compared using hypothetical situations in studies showing inaccurate proxy decision-making. However, hypothetical situations and treating the patient’s prediction about what they intend as the “gold standard” against which the proxy choice is measured raise hypothetical and other analytical difficulties. A recent study on real-world’ proxy decision- making, including research involvement, suggests that authenticity, rather than correctness, should be seen as the basis for proxy decision-making. Although the moral ideal of ‘being true to oneself is considered here, it is acknowledged to be socio-culturally constructed and evolved in discourse with others and building a unified narrative. Authenticity may consider not just the historical choices of persons with reduced capacity but also their present-day preferences, according to those who deny the use of narrative coherence. It is clear that the goal of proxy decision-making is authenticity, not accuracy, and that instead of pursuing interventions to improve accuracy or eliminating the use of proxies ultimately, it might be beneficial to draw on concepts identified in the substantial body of research into boosting and promoting decision- making (Cheng et al.,2022, p.3). Confidence is a critical factor in proxy decision-making, and prior empirical investigations have connected it to increased accuracy in proxy judgments. Even though confidence is a significant and adjustable aspect in proxy decision-making, it is not apparent what the actual link or causal process between confidence and choice quality is. An additional assumption to proxy subjective health status, it is assumed that a quality-adjusted-life- year (QALY) can quantify the level of health improvement for youngsters and people unable to speak on their behalf (Basu & Gandhay 2021, p.633). Patients who cannot talk for themselves and their children can have their health status assessed using the Health-Related Quality of Life (HRQOL) questionnaire as a proxy subject.

References

AlRuthia, Y., Almuaythir, G. S., Alrasheed, H. H., Alsharif, W. R., Temsah, M. H., Alsohime, F., … & Bashiri, F. A. (2021). Proxy-reported quality of life and access to nusinersen among patients with spinal muscular atrophy in Saudi Arabia. Patient preference and adherence, 15, 729.

Basu, A., & Gandhay, V. J. (2021). Quality-adjusted life-year losses averted with every COVID- 19 infection prevented in the United States. Value in Health, 24(5), 632-640.

Cheng, H. F., Stapleton, L., Kawakami, A., Sivaraman, V., Cheng, Y., Qing, D., … & Zhu, H. (2022, April). How Child Welfare Workers Reduce Racial Disparities in Algorithmic Decisions. In CHI Conference on Human Factors in Computing Systems (pp. 1-22).

Fernández-Loría, C., & Provost, F. (2022). Causal decision making and causal effect estimation are not the same… and why it matters. INFORMS Journal on Data Science.

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Discuss  the underlying assumptions and potential ramifications of having proxy subjective health status or evaluation measures for children or those unable to speak for themselves.

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