“Speaking-for” and “speaking-as”: Pseudo-surrogacy in physician–patient–companion medical encounters about advanced cancer

Abstract

Objective To examine using audio-recorded encounters the extent and process of companion participation when discussing treatment choices and prognosis in the context of a life-limiting cancer diagnosis. Methods Qualitative analysis of transcribed outpatient visits between 17 oncologists, 49 patients with advanced cancer, and 34 companions. Results 46 qualifying companion statements were collected from a total of 28 conversations about treatment choices or prognosis. We identified a range of companion positions, from “pseudo-surrogacy” (companion speaking as if the patient were not able to speak for himself), “hearsay”, “conflation of thoughts”, “co-experiencing”, “observation as an outsider”, and “facilitation”. Statements made by companions were infrequently directly validated by the patient. Conclusions Companions often spoke on behalf of patients during discussions of prognosis and treatment choices, even when the patient was present and capable of speaking on his or her own behalf. Practice Implications The conversational role of companions as well as whether the physician checks with the patient can determine whether a companion facilitates or inhibits patient autonomy and involvement. Physicians can reduce ambiguity and encourage patient participation by being aware of the when and how companions may speak on behalf of patients and by corroborating the companion's statement with the patient.

“ Who'll do all these if I'm not around?” : Bonding social capital and health and well-being of inpatients

“…Apparently, the critical role of BSC explains the call for a move away from individualistic focus in healthcare delivery to a more holistic approach—one that considers the broader social being of a person by incorporating their social ties in healthcare delivery (Levine & Zuckerman, 1999; Lewis et al, 2014). Nonetheless, it is equally vital to note that some relatives—as previous studies warn—tend to conflate or present their personal beliefs and values as that of inpatients (De Allegri et al, 2015; Mazer et al, 2014). They often do that by making healthcare decisions without recourse to the choice of the person in need when they have the opportunity to contribute and thereby potentially endangering the health of the sick (De Allegri et al, 2015; Mazer et al, 2014).…”

“…Nonetheless, it is equally vital to note that some relatives—as previous studies warn—tend to conflate or present their personal beliefs and values as that of inpatients (De Allegri et al, 2015; Mazer et al, 2014). They often do that by making healthcare decisions without recourse to the choice of the person in need when they have the opportunity to contribute and thereby potentially endangering the health of the sick (De Allegri et al, 2015; Mazer et al, 2014). Notwithstanding, studies indicate that people with chronic and severe health conditions for instance, actively rely on their family and friends for information and emotional support to manage their conditions and for companionship (Gilbar, 2011; Korfage et al, 2013; Levine & Zuckerman, 1999; Roddis et al, 2016).…”

“…Furthermore, this mistrust, to a significant extent, explains some of the challenges of Ghana’s health system such as late recourse to medical help among the public which is known to result in poor health outcomes especially among rural populations (Baiden et al, 2006). However, others opined that the presence of relatives tends to make patients less forthcoming about how they feel due to predictably shyness and fear of disappointing their acquaintances by disclosing discouraging information (Mazer et al, 2014). Therefore, the happenings cannot be attributed entirely to poor relationships with health personnel.…”

“…However, the presence of close social ties also tends to obstruct communication between health personnel and patients through “nagging” and misapplication of vital health information support (Mayberry et al, 2014). The work of Mazer, Cameron, DeLuca, Mohile, and Epstein (2014) who opine through empirical clinical studies that families and relatives of sick persons sometimes act as pseudo-surrogates by conveying health information from health professionals to sick persons even when the sick is present and capable of handling the interactions collaborates this assertion. These situations, according to the researchers, potentially create distortions in transmission and application of vital health information.…”

“…BSC, therefore, serves not only as a source of a resource such as financial support as has been witnessed in many contexts but also provides a buffer against poor attitudes towards needed care (Ware et al, 2009). Moreover, participation in care delivery by close ties of inpatients assists in adopting values and concerns of the patients by health professionals (Mazer et al, 2014). In Ghana, such values often include religious and other belief systems, which shape everyday choices about health (Powell-Jackson & Ansah, 2015).…”