Assumptions And Ramifications Of Having A Proxy
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.
Having proxy subjective health status or evaluation measures for children or individuals who are unable to speak for themselves is a complex issue that raises important ethical considerations. While these measures are often utilized to assess the well-being and health status of these individuals, it is essential to critically examine the underlying assumptions and potential ramifications associated with relying on proxies.
Underlying Assumptions
- Accuracy of Proxy Reporting: Proxy measures assume that the person providing the evaluation is capable of accurately assessing the subjective health status of the individual in question. This assumes that proxies, such as parents or caregivers, have sufficient knowledge and awareness of the person’s experiences, symptoms, and overall well-being. However, proxies may not always have complete understanding or accurate insight into the individual’s perspective.
- Representativeness of Proxy Perspectives: Proxy measures assume that the perspectives and priorities of proxies align with those of the individual being assessed. Proxies may project their own biases, desires, or beliefs onto the evaluation, potentially distorting the individual’s true subjective health status. This assumption raises concerns about whether the proxy’s evaluation truly reflects the individual’s experience.
- Proxy’s Awareness and Interpretation: Proxy measures assume that proxies possess adequate awareness and interpretation skills to understand and evaluate the individual’s health status accurately. However, proxies may have limited knowledge or misinterpret cues related to the individual’s well-being, leading to potential inaccuracies in reporting.
Potential Ramifications
- Lack of Direct Voice: Relying on proxy measures denies individuals who are unable to speak for themselves, such as young children or individuals with severe cognitive impairments, the opportunity to express their own subjective experiences and perspectives directly. This can limit their agency and ability to advocate for their own needs and preferences.
- Potential Biases and Misrepresentation: Proxy measures run the risk of introducing biases and misrepresentation due to the subjective interpretation and reporting by proxies. This can result in an inaccurate or incomplete understanding of the individual’s health status, potentially affecting interventions, treatments, and support provided.
- Ethical Considerations: The use of proxy measures raises ethical questions regarding autonomy, privacy, and the right to self-determination. It is crucial to ensure that consent is obtained from both the individual (when possible) and the proxy, while also considering the potential impact on the individual’s rights and well-being.
- Contextual Factors: Proxy measures may not capture important contextual factors that influence an individual’s subjective health status. Factors such as cultural background, social environment, and personal circumstances can significantly impact an individual’s well-being but may be overlooked or misinterpreted by proxies.
- Challenges in Communication: Proxies may face challenges in accurately interpreting and conveying non-verbal cues or subtle expressions of distress or well-being. This can lead to difficulties in capturing a comprehensive picture of the individual’s subjective health status.
- Dey, I., & Sommerville, S. (2009). Ethical issues in using children’s self-reports for health services research: An overview. Child: Care, Health and Development, 35(3), 277-283.
- Gattuso, S., Chappuy, H., & Bouazza, N. (2016). Proxy Measures in Pediatric Palliative Care: A Systematic Review. Frontiers in Pediatrics, 4, 48.
- Hinds, P.S., Schum, L., Baker, J.N., & Wolfe, J. (2008). Key factors affecting dying children and their families. Journal of Palliative Medicine, 11(9), 1200-1208.
- Wolfe, J., Orellana, L., Ullrich, C., Cook, E.F., Kang, T., Rosenberg, A., et al. (2012). Symptoms and Distress in Children With Advanced Cancer: Prospective Patient-Reported Outcomes From the PediQUEST Study. Journal of Clinical Oncology, 30(26), 3227-3234.