Asian Bioethics Review

The Root of the Problem

Confining our area of study to the end of life setting where dissonance between the two approaches is most tangible and where RA has been most frequently utilised, we scrutinise available data to delineate the problems that underpin the two approaches.

Prevailing evidence suggests that the root cause of the continued dissonance between these two ethical approaches lies in their divergent views of how person-hood or “what makes you, you” is conceived (Krishna 2013a, Krishna 2013b, Krishna et al. 2013, Krishna et al. 2014, Krishna and Kwek 2014, Krishna and Alsuwaigh 2015, Tsai 2001, Ho 2008). Krishna (2013), Chochinov (2002), Twycross (2003), Saunders (1984) and Ellis-Hill (2010) have shown that how personhood is conceived is pivotal to the maintenance of dignity and quality of life at the end of life and to care determinations. Conceptions of personhood thus have significant repercussions on the manner in which patients are cared for and how their dignity and quality of life is maintained at the end of life.

We do not, however, countenance efforts to bridge differences between principlism and family-centric ideals at their “source”. This is because data would suggest that conceptions of personhood are nothing like what both Eastern and Western concepts assume them to be (Krishna 2013a, Krishna 2013b, Krishna et al. 2013, Krishna and Kwek 2014, Krishna and Alsuwaigh 2015). Further, clinical data would suggest that Eastern and Western concepts do not fully capture the changeability and situation specificity of conceptions of personhood amongst patients at the end of life (Krishna 2013a, Krishna 2013b, Krishna et al. 2013, Krishna et al. 2014, Krishna and Kwek 2014, Krishna and Alsuwaigh 2015).

As a result, guided by data and clinical observations, we advocate a new means of conceiving conceptions of personhood that better captures patient [End Page 308] views (Ibid.). Our approach is a case-specific approach that requires holistic review by a multidimensional palliative care team to fully capture the needs of the individual patient. Building on Krishna’s (2014) welfare model, we believe our welfare-based model of holistic care will better preserve and even advance the patient’s interests so frequently lost in the midst of the confrontations between principlism and family-centric approaches.

Our welfare-based model of holistic care accepts an individual patient as an autonomous being but acknowledges that each individual not infrequently possesses inextricable social, cultural, religious and familial ties. These ties must be given appropriate attention and weight within the confines of case-specific review if we are to truly address the needs of the patient and preserve his/her welfare. We believe our approach allows us to focus on the critical issues of what constitutes the welfare and best interests of the patient within a particular setting. Further, the welfare-based model of holistic care aids delineation of a particular patient’s contextual and person-specific definitions of harm within the confines of a case-specific setting. This approach does not become mired in determinations of how personhood is conceived but provides a multidimensional and multiprofessional means of meeting care aspirations in a realistic and practical manner. It is here that the function of a multidisciplinary team approach working within the confines of accepted clinical, professional, institutional and legislative frameworks and regnant sociocultural expectations, become clear.

In order to appropriately site and apply the welfare-based model of holistic care, we will first address the problems of the RA model and with that, the prevailing issues surrounding Eastern and Western ethical concepts.

The Eastern Perspective

Tsai’s Two-Dimensional Concept of Confucian Personhood in Biomedical Practice (2002) is an established means of explicating the concepts of personhood that underpin family-centric beliefs in China, Hong Kong, Taiwan and Singapore (Ho et al. 2010, Tsai 2002). This concept defines personhood as comprising two components: a horizontal component that highlights a person’s links with family, and a vertical component that, whilst acknowledging the individuality of person, still revolves around the dominant goal of service to the family. Accordingly, a Confucian conception of personhood sees the family unit as a vital and indivisible aspect of a person (Ho et al. 2010). It is this view of personhood that ultimately underpins proffering of a RA approach.

The question that then follows is: does empirical evidence and ethical study validate a RA approach or the presuppositions that underpin it? [End Page 309]

Ring Theory of Personhood and Individual Interests

The central premise that underpins the RA framework is that personhood pivots on a family or relational conception. Recent studies amongst terminally ill patients suggest that reliance on such a view of personhood is dated and lacks traction (Krishna 2013a, Krishna 2013b, Krishna et al. 2013, Krishna et al. 2014, Krishna and Kwek 2014, Krishna and Alsuwaigh 2015). Krishna (2013) evidences a wider adaptive perspective of personhood called the “ring theory of personhood” (RToP) that defines personhood through four equally important, interrelated, and temporally and contextually sensitive domains. These four domains are Innate, Individual, Relational and Societal Personhood, which are in turn depicted as Innate, Individual, Relational and Societal Rings within the RToP (Figure 1).

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Figure 1.

Ring Theory of Personhood

The Innate Ring maintains that all persons possess ingrained human dignity and rights that do not differ in any “stage of development or deterioration as a result of their connection with the Divine and or simply as a result of being alive and having human physical characteristics”. The Individual Ring revolves around the presence and display of “higher functions of consciousness”, namely features such as self-awareness, locus of control, ability to reason, past and futurity, as well as a continuity of this identity over time. The Relational Ring accommodates the interpersonal relations that the patient deems as important [End Page 310] and personal. The Societal Ring focuses on the social, professional and familial ties and expectations, which are not accounted for in the Relational Ring by the patient.

In a steady state, all four domains are afforded equal importance, although changing circumstances may alter the size and weight afforded these rings. This highlights the adaptability of the RToP framework. The RToP stresses that all competent patients who show psychological continuity maintain their own personhood, and when such ability is compromised and the individual is unable to maintain an “uninterrupted connection concerning a particular person of his or her private life and personality”, their personhood is conferred by those within their individual relational rings. The RToP strives to adapt to changing conditions ultimately to preserve the uniqueness of an individual’s identity in a manner that is consistent with the patient’s own particular conceptions.

The RToP validated by clinical evidence and case reports dismisses the notions of the primacy of the relational ring espoused by prevailing family-centric thinking. The holistic view of personhood espoused by the RToP is further strengthened by the concept of individual interests (IIs) that stems from each of the four domains of the RToP. IIs commence with the advent of an individual’s personhood and are focused on maintaining the distinctive features of each ring of an individual’s personhood in a manner that most closely resembles the individual’s own view of their personhood.

As a result, having the various IIs maintained by the family as per the RA framework, dilutes this ability to maintain focus on the particular interests of the patient in a manner that is consistent with the individual’s own conception of his/her personhood. This is especially so if the family is unable to capture the diversity and complexity of the domain-specific IIs and risks dispelling these interests altogether. A further consideration here is that the relational ring is not exclusively the domain of familial ties; for many patients, it is their ties with their friends and caregivers that are most important to them. Family members are thus not the natural surrogates for the patient, particularly when it has been suggested that in some family-centric societies, familial interests often trump those of the patient (Krishna 2011a, Krishna 2011b, Foo et al. 2012, Cheng 1986, Zhang 2012, Fan 1997, Ho 2004).

Clearly, attempting to preserve a static conception of personhood such as that which sits at the core of prevailing Confucian and the RA frameworks is not tenable when the RToP reveals that personhood is an evolving multidimensional adaptive concept (Krishna 2013a, Krishna 2013b, Krishna et al. 2013, Krishna et al. 2014, Krishna and Kwek 2014, Krishna and Alsuwaigh 2015). Similarly a fixed conception of personhood defined by individualistic characteristics [End Page 311] that only relies on others when the patient cannot maintain his/her own personhood is equally problematic. This appears to be the case with the manner in which principlism views personhood in the context of a patient who experiences a loss of consciousness (Gillon 2003). The patient’s relational, societal and innate personhood appears to be on the second tier of a two-tiered view of personhood that would have individual personhood on a discrete first tier (Ibid). Aside from such a two-tiered perspective not being backed by clinical evidence, the true nature of personhood within an atomistic conception remains unclear. A flexible, more patient-centred approach that appropriately reflects clinical realities is required.

Autonomy and Decision-Making under the RA Framework

Clinical experience and increasing empirical data both suggest that there is a clear discrepancy between “respectful attitude” and “respectful action” in dealing with the autonomy of terminally ill (but competent) patients (Krishna 2011a, Krishna 2011b, Yang et al. 2012, Ching et al. 2013, Phua et al. 2011, Foo et al. 2012). Such empirical evidence and case reports raise questions as to whether a RA framework would be viable in modern clinical practice (Ho et al. 2010, Chan 2006, Chenget al. 2012, Tsai 2001, Hui 2008, Ho 2008, Padela et al. 2014, Chan et al. 2014, Krishna 2011a, Krishna 2011b, Yang et al. 2012, Ching et al. 2013, Phua et al. 2011, Foo et al. 2012, Cheng 1986, Zhang 2012, Fan 1997, Ho 2004, Tsai 1999). Yang et al. (2012) had found that whilst more than half of physicians indicated that they would allow patients to take part in decision-making involving their end of life decisions, Ching et al.’s (2013) subsequent review of patients of the same group of physicians indicated less than 10% of competent patients being consulted on their Do Not Resuscitate (DNR) orders. This result echoes Phua’s (2011) findings in a Singaporean intensive care unit that revealed that less than 5% of patients were part of their DNR discussions. In practice, “respectful attitude” rarely translates to “respectful actions” towards patient autonomy. Foo (2012) found that 60% of physicians favoured familial decisions over the competent wishes of patients, despite data suggesting that up to a third of familial decision-making ran contrary to patients’ wishes.

Findings within the Pakistani clinical setting appear to differ little from prevailing Singaporean data, with Jafarey and Farooqui (2005) reporting that medical paternalism and significant family involvement continue to impinge on autonomous action within Pakistani medical practice. The culminations of these findings from the Singapore and Pakistan medical settings affirm beliefs that [End Page 312] patient choice within the very societies that have inspired the proffering of a RA framework is likely to fall short of their desired goals (Foo et al. 2012). Indeed data would suggest that efforts to recognise “the individual’s connectedness to their family” and “long-term reciprocity and collaborative arrangements with family members or intimates” through the use of relational notions of patient confidentiality embedded within both existing relational and cultural ideals in Singapore and Pakistan, is likely to see autonomous rights relegated or simply circumnavigated (Ibid). There is, as a result, little empirical and clinical evidence to suggest that a RA framework could provide a viable compromise between principlism and family-centric frameworks (Chan 2006, Krishna et al. 2014, Jafarey and Farooqui 2005, Moazam 2000).

Viability of the RA Framework in Singapore

The viability of a RA framework is further questioned within Singapore’s unique market-oriented healthcare system that sees healthcare costs as being shared between the government and patients and their families. Built upon the concept of filial piety or the widely accepted notion that it is the obligation of the family to provide physical, emotional, spiritual and financial care for their loved ones in recognition for the care they received, this Confucian framework forms the basis of Singapore’s healthcare programme (Krishna 2013a, Krishna et al. 2013, Krishna et al. 2014, Krishna and Kwek 2014, Krishna and Alsuwaigh 2015, Liu 2012, Khan 2001, Kuo 1998, Kou and Wong 1979, White Paper, Shared Values 1991, Tan 2012).

Policing compliance to these obligations in turn are the wider family unit and not infrequently the patient’s community (Ho et al. 2010, Krishna 2011a, Krishna 2011b). Failure to meet filial duties is seen to incur a “loss of face” or a loss of “one’s personal honor and dignity judged by his or her community” (Ho et al. 2010). This is a fate “fearfully avoided” within the local context (Ho et al. 2010, Krishna 2011a, Krishna 2011b, Goh 2007, Goh 2008). As a result of collective pressure to care for their loved one and avoidance of precipitating negative emotions that will hasten death, filial obligations within the end of life setting often manifest as collusion; the trumping of patient goals, rights and not infrequently their best interests; and/or the negation of direct patient involvement in end of life decisions—simply so as to be seen as supportive and caring (Krishna 2013a, Krishna 2013b, Krishna et al. 2013, Krishna et al. 2014, Krishna and Kwek 2014, Krishna and Alsuwaigh 2015, Ho et al. 2010, Cheng 1986, Zhang 2012, Fan 1997, Ho 2004). Pressure to meet these filial obligations frequently results in futile treatment and even burdensome [End Page 313] treatment being applied simply to thwart suggestions of abandonment and neglect (Krishna 2013a, Krishna 2013b, Krishna et al. 2013, Krishna et al. 2014, Krishna and Kwek 2014, Krishna and Alsuwaigh 2015, Ho et al. 2010, Cheng 1986, Zhang 2012, Fan 1997, Ho 2004, Goh 2007, Goh 2008).

A Welfare-Based Approach

Despite our stated objections to the RA framework, we do, however, acknowledge that there are problems with the regnant atomistic concepts adopted ostensibly to overcome the problems related to family-centric practices. Further, we do concur that prevailing individualistic ethical concepts do not fully address the needs of the patient (Padela et al. 2014, Chan et al. 2014). As Yang et al. (2012), Ching et al. (2013) and Phua et al. (2011) have evidenced, the idea of an atomistic patient dissociated from familial, social and cultural pressures, as “loosely” interpreted from Beauchamp and Childress’s (2007) concept of the Four Principles, is too far removed from local practice to be of much practical use. However, the apparent alternative proposed by Chan et al. (2014) and Padela et al. (2014) look equally impractical.

Confining our considerations to the specific setting of end of life care in which we have most experience and in which the present conflicts between the two ethical approaches are most visible, we posit that what is required is a more clinically viable approach that remains focused on protecting the patient’s best interests in evolving conditions. Rather than a throwback to physician-led medical paternalism, we extend the concept of a welfare framework that is focused upon the preservation of the best interests and welfare of the patient (Krishna et al. 2014).

Central to this effort is the role of a multidisciplinary team (MDT) (Krishna et al. 2014). The MDT is defined as “a group of people of different healthcare disciplines, which meets together at a given time (whether physically in one place, or by video or teleconferencing) to discuss a given patient and who are each able to contribute independently to the diagnostic and treatment decisions about the patient” (Macmillan Nurses 2004). Within this MDT set-up, it is the palliative care team that coordinates efforts focused on maximising patients’ interests within the confines of what can realistically be provided by the team (Krishna et al. 2013). Critically the MDT adheres to and is subject to professional and clinical guidelines. Prime among these are the professional obligations defined by the General Medical Council (GMC), which are focused on rendering help in meeting the needs and welfare of patients, particularly if their rights [End Page 314] have possibly been abused or denied. The MDT is also subject to local practice standards and institutional guidelines to ensure accountability and transparency in the determination of best interests.

The MDT approach seeks to assess each individual according to his/her own merits and particular circumstances, in order to objectively establish a determination of what the best interests of the patient ought to be, and minimise compromise of his/her personal autonomy. Efforts are also made to encapsulate prevailing familial, cultural, social and religious elements in keeping with the welfare-based model’s goal of adopting a holistic approach to best interests determinations (Krishna 2013a, Krishna 2013b, Krishna et al. 2013, Krishna et al. 2014, Krishna and Kwek 2014, Krishna and Alsuwaigh 2015). Working within prevailing institutional and professional standards also allows for the appropriate assessment of a MDT-led holistic determination of harm for the particular patient and specific contextual considerations. A holistic review carried out by a MDT also ensures an acceptance that conceptions of harm may be a result of acts or omissions, and are sociocultural, familial, religious and situational dependent, particularly within diverse sociocultural backgrounds such as those seen in Southeast Asia.

A case-specific approach may see the widely accepted autonomous wish to die at home not to be a concern in itself, but potentially harmful to the patient if, for example, it was found that the patient was prone to falls, lived alone in an unsafe environment and had little by way of physical and financial support. Here the autonomous decision to be cared for at home would be trumped by the welfare-based model of care, particularly when social support is lacking. Overriding the wishes of the patient would be in keeping with regnant Confucian-inspired, beneficence-led ideals, and thus congruent with local sociocultural expectations as well as professional standards that guide the welfare-based model of care (Krishna et al. 2014). Further, such a position is also backed by rational non-interventional paternalism frameworks such as Israel’s Patient’s Rights Act (IPRA), which allow physicians to supersede the desires of patients who are adjudged to be “making a wrong decision about their medical care” (Goncalves et al. 2012, Patient’s Rights Law 1996, Waltho 1996).

The extent of care and indeed action that can be “imposed” on the patient by the MDT must also be shown to be proportional to the risks foreseen and must be clearly discussed as a team (Krishna and Chin 2011). All alternatives must be weighed and deliberated upon by the MDT, and the rationale for their dismissal and the eventual choice of action must be clearly documented in the notes. Such a requirement serves to further ensure the acceptability, [End Page 315] proportionality, justifiability, accountability, transparency and balanced nature of the actions taken by the MDT, beyond compliance to prevailing legislature, standards and guidelines (Ibid).

How would this approach sit in a more Western or more autonomy-centred society? To fully appreciate the pragmatic approach adopted within the welfare-based model, we need to appropriately site its application within the realities of the practical limitations and sociocultural issues faced by palliative care patients in most Southeast Asian nations and beyond. To begin with, there is little point espousing patient rights and respect for choices when in reality, the practical obstacles are sometimes insurmountable. There is a need to accept that many areas in Asia still lack appropriate palliative care support, as well as access to comprehensive social and nursing support found in the West. There are no provisions for nurses to sit with the patient overnight to allow the family to rest, there are no arrangements available for carers to be provided to facilitate a patient’s last wish to be cared for at home for their last few days of life, nor is there the facility of financial support for the hiring of caregivers to support patients and their families (Macmillan Nurses 2004, Marie Curie Nurses 2014). Much, in fact, remains dependent on the family members and their ability to facilitate and support the patient’s wishes (Krishna 2011a, Krishna 2011b). These are but a few of the obstacles to meeting the standards aspired for in the West. Still there are two key considerations to the employ of this model that acts to temper its application.

The first is the requirement that the employment of this model be consistent with regnant sociocultural expectations. In most family-centric societies, it is a beneficence-based model rather than an autonomy-based model that dominates local thinking (Tsai 1999). Indeed Tsai (1999) has previously reported that in Confucian ethics, the concept of individual autonomy remains unclear whilst beneficence is prized potentially above all other considerations. As a result, the application of a welfare-model that owes much to a beneficence-based approach is congruent with prevailing sociocultural practices. Should cultural practices shift to a more individualistic concept, the welfare model will adapt, potentially limiting the ability to trump the wishes of the patient.

Yet such a shift would only be possible if it is in keeping with the second consideration of this model, which is its need for congruence with regnant clinical, institutional, legislative and professional standards and guidelines. At present, these appear to be focused on overall patient welfare rather than patient choice, within the caveat of having welfare determinations guided by a holistic evaluation of the patient’s specific contextual considerations. As a result, it can be surmised that the welfare-based model does possess sufficient flexibility and [End Page 316] robustness to allow for the evolution and reapplication of this model in different settings.