The Compensatory Nature of Personhood
- The Compensatory Nature of Personhood
Introduction
At the crux of modern end-of-life care is a patient-centred approach focused upon maintaining the personhood of each individual patient. All too often, determinations of personhood are led by clinical considerations—such as their conscious and functional levels and/or by their relational ties—and have served to inform critical ethical debates in end-of life-care, such as terminal sedation and euthanasia (Polkinghorne 2004; Himma 2005; Beckwith 2005, Juth et al. 2010). Recent clinical studies of oncology patients suggest that these prevailing concepts that underpin the definitions of the poorly delineated terms, “person” and “personhood”, are inadequate and serve to highlight “the complexities and contradictions underlying their apparent simplicity” (Fletcher 1997; Merrill 1998; Nelson 2000; Vanlaere and Gastmans 2011; Tsai 2001). While some look to neuroscience for an objective basis of a criterion for “personhood”, others rely on philosophical and theological sources for clarity (Fletcher 1997; Merrill 1998; Nelson 2000; Vanlaere and Gastmans 2011; Tsai 2001). As a result, there are contrasting views on the concept of personhood (Fletcher 1997; Nelson 2000; Vanlaere and Gastmans 2011; Tsai 2001; Krishna 2013a, 2013b).
Efforts to appropriately contextualise the concept of personhood within the end-of-life setting appear to have come a head with suggestions that unconscious terminally ill patients ought to be considered devoid of personhood, “socially dead”, and thus ought to be considered to be in a state indifferentiable from biological death as a result of their potentially irreversible loss of consciousness till their biological demise (LiPuma 2013). The impact of such a suggestion has significant repercussions on the practice of palliative care at the end of life where sedation and unconsciousness are not uncommon either by virtue of [End Page 332] ongoing disease processes or as a result of treatment of their symptoms (Krishna et al. 2010, 2012). Given the implications of family-centric East Asian societies—which place great value on relational ties and social interactions drawn from Confucian-inspired views of personhood, and where palliative care still struggles to attain a place in mainstream medical practice—determining the perspectives of palliative care patients on this matter is critical (Tsai 2001; Khan 2001; Ho et al. 2010; Tan 2012).
Our goal is therefore to explore palliative care patients’ own perspectives on personhood, especially within the context of end-of-life care, by means of an in-depth interview study, rather than to apply tools that have not been validated within the end-of-life setting.
Patients and Methods
Patients
The data was collected from interviews on “what makes you who you are”, which were carried out from February to May 2013 on patients attending an Ambulatory Treatment Unit at the National Cancer Center. A total of 35 interviews were conducted to attain saturation. The Central Board of Ethics approved the study (CIRB Ref 2013/108/A).
Sampling
English-speaking patients over the age of 21 attending the Ambulatory Treatment Unit at the National Cancer Center were invited to participate in a semi-structured, in-depth interview. Orientated and psychologically capable patients eligible for the study were identified by the nursing staff. Patients were provided written information on the study by the nursing staff and if interested, they were approached by the researcher. Informed consent was obtained from each participant prior to the interview.
A total of 35 patients were interviewed (Table 1). Purposive sampling was employed to ensure similar proportions of gender and ethnicity was reflective of the diverse Singapore population. There was an equal distribution of male and female participants. 74.3% of participants were Chinese, 11.4% were Malays, 8.6% were Indians, and the remaining 5.7% were from other ethnic groups—closely mirroring the societal representation of ethnic groups in Singapore (Department of Statistics 2012). The majority of respondents (34.3%) were Christians while 14.3% did not specify a religious belief. [End Page 333]
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Subjects’ characteristics (n = 35)
Data Collection
Semi-structured, in-depth interviews were conducted by one investigator using an interview guide (Figure 1). Open-ended questions were asked at the start of...
