Article
Limits to relational autonomy—The Singaporean experience
Nursing Ethics 2015, Vol. 22(3) 331–340 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014533239 nej.sagepub.com
Lalit Kumar Radha Krishna and Deborah S Watkinson National Cancer Center Singapore, Singapore
Ng Lee Beng Singapore General Hospital, Singapore
Abstract Recognition that the Principle of Respect for Autonomy fails to work in family-centric societies such as Singapore has recently led to the promotion of relational autonomy as a suitable framework within which to place healthcare decision making. However, empirical data, relating to patient and family opinions and the practices of healthcare professionals in Confucian-inspired Singapore, demonstrate clear limitations on the ability of a relational autonomy framework to provide the anticipated compromise between prevailing family decision-making norms and adopted Western led atomistic concepts of autonomy. Evidence suggests that despite a growing infusion of Western influence, there is still little to indicate any major shift to individual decision making, particularly in light of the way society and healthcare are structured. Similarly, the lack of employing a shared decision-making model and data that discredit the notion that the complex psychosocial and cultural factors that affect the decision making may be considered ‘‘content neutral’’ not only prevents the application of relational autonomy but questions the viability of the values behind the Principle of Respect for Autonomy. Taking into account local data and drawing upon a wider concept of personhood that extends beyond prevailing family-centric ideals along with the complex interests that are focused upon the preservation of the unique nature of personhood that arises from the Ring Theory of Personhood, we propose and ‘‘operationalize’’ the employing of an authoritative welfare-based approach, within the confines of best interest decision making, to better meet the current care needs within Singapore. Keywords End of life, multidisciplinary team, palliative care, personhood, relational autonomy, Ring Theory of Personhood, welfare
Introduction The failure to fully integrate Beauchamp and Childress’s Principle of Respect for Autonomy in Confucianinspired and family-centric societies is well documented.1–11 In circumstances where it is relational rather than atomistic concepts of autonomy that are celebrated, the appeal of relational autonomy-based frameworks,
Corresponding author: Lalit Kumar Radha Krishna, Department of Palliative Medicine, National Cancer Center Singapore, 11 Hospital Drive, Singapore 169610. Email: [email protected]
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which recognize ‘‘the individual’s connectedness to their family,’’ is evident. The characteristics of Singapore’s sociocultural backdrop and healthcare financing structure, which pivot upon the melding of ‘‘individual responsibility’’ and governmental led subsidized care, have contributed toward the creation of a unique medium for the culture of patient autonomy ‘‘in relational terms.’’ This culture of embracing relational autonomy formulations has been encouraged by legislation and national ideology, which emphasizes fealty and communitarian values.1–8,12–20 Yet, this same fertile ground that supports relational autonomy frameworks also draws attention to the manifest flaws of this inclination within a cultural backdrop that emphasizes the familial role in care provisions and expounds the belief that protection from ‘‘bad news’’ and the maintenance of hope will prolong life.1–8,12–20 This often culminates in the practice of collusion and the employment of various means of circumnavigating direct patient involvement in the deliberative process to maintain hope. Ultimately, this engenders concerns regarding Principle of Respect for Autonomy as a whole.1–8,20 In light of a dearth of clear limits to the influence of the family upon patient autonomy and a lack of minimum care standards that potentially compromise the best interests of the patient, a workable alternative that appropriately addresses these concerns within the confines regnant clinical and psychosocial considerations is required.1–8,20 To appropriately contextualize our position in forwarding our multidimensional, multiprofessional welfare-based model as an alternative to relational autonomy frameworks and prevailing family-centric conceptions, we will highlight the complex ethical, practical, and psychosocial considerations within the palliative care context in Singapore that predispose to these practices that potentially threaten the best interests of patients.5,21–23 Through an evidence-based, ethically appropriate, and culturally sensitive approach, we will also scrutinize the foundations of family-centric practices and based on this analysis propose our alternative model to ensuring the maintenance of basic standard of care and the best interests of this vulnerable patient population.
Adopting relational autonomy over Principle of Respect for Autonomy in Singapore Singapore’s nuanced application of shared costs for medical care and acknowledged embrace of Confucian principles provide fertile grounds for the adoption of relational aspects of autonomy which recognises the individual’s connectedness to their family, and also from growing state reliance upon families to share the burdens and costs of caring for elderly and disabled dependents.1
Here, atomistic concepts of autonomy, privacy, and confidentiality are reimagined under the aegis of ‘‘socially and culturally inflected values, beliefs and expectations of familial roles and responsibilities’’ and an acceptance of a patient’s ‘‘dependence upon others.’’1 Recognition of this reliance upon caregivers, most commonly family members, is highlighted by Singapore’s Maintenance of Parents Act 1996 that imposes a statutory obligation on children to pay maintenance for their parents and the use of ‘‘means testing’’ of the family, rather than the individual, in the disbursing of funds by the Medical Endowment Fund.1–8,12–20 These conditions, in conjunction with the trumpeting of interrelated concepts of personhood and reciprocity within the national ideology, are said to make it ‘‘practically impossible to insist on an individualistic approach to healthcare decision-making given this de facto allocation of financial responsibility within the Singapore healthcare system.’’1,3,4,12–20 The person is not seen in atomistic Kantian terms but as a part of the family unit and its identity.1–4 Freedom of medical choice is frequently limited to the confines of familial interests and their willingness to
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shoulder financial, physical, emotional, and spiritual care.1,21–29 Patient autonomy is inescapably proportional and recipient to the family’s agency.1–4 This is prevalent within the context of progressive and chronic illnesses where dependence upon the family precipitates further erosion of personal choice, clear understanding, and freedom from interference in decision making.21,22,24–28 Compounding this is the inability of individualistic concepts to contend with the ‘‘weak willed’’ patient who takes free intentional action contrary to their own better judgment or those indoctrinated with ideas that ultimately prevent autonomous decision making.30 Take for example Mariana, a competent Muslim lady of Chinese heritage from Indonesia, whose only wish at the end of her life was adequate pain relief but had to content herself with suffering in silence as a result of her social, cultural, and religious obligations to comply with her husband’s wishes not to accept the use of morphine. Underpinning these misgivings and misconceptions with regard to opioids were Mariana’s husband’s own obligations to maintain ‘‘hope’’ and the belief that acceptance of morphine would be seen as a sign of capitulation and an abandonment of his wife. While he had seen first-hand both his wife’s agony and the efficacy of morphine when it had previously been applied, he struggled to accept the somnolence and confusion that accompanied the analgesic effects, much less her inability to recite verses of the Quran. Mariana’s faith was important to her, but she felt her physical condition required more attention and voiced her concerns to her husband. Mariana’s reluctance to exert her individual autonomy was also a sacrifice for her family, who were struggling with care costs and could ill afford the other available treatment options, such as oxycodone and neurolytic interventions. Rigid expectations of autonomous action on Mariana’s part are unrealistic even for a conception of Principle of Respect for Autonomy that embraces relevant cultural and societal beliefs.21,22,24–28 Chan et al. maintain that relational autonomy acknowledges this ‘‘ambiguous interaction between apparently conflicting legal norms—patient autonomy and family responsibility’’ facilitated by the employment of a ‘‘reflexive, negotiated model of interaction’’ and the clear specifications of the basic standards of care, confidentiality, and respect for autonomy contained within Singapore’s Advanced Medical Directive Act 1995 (AMDA), the Mental Capacity Act 2008 (MCA), and within the National Medical Ethics Committee’s (NMEC) position on familial involvement in care determinations.1,12– 20,29 In reality, while expressing flexibility and wider considerations over the rigid requirements of Principle of Respect for Autonomy, the benefits of relational autonomy in ensuring that compromise of Mariana’s care provision does not breach institutionally maintained minimum standards are rarely realized.1–4,7,8,21–23,27,28
Empirical data Chan et al. forward Yang et al.’s study which revealed that 78.8% of physicians interviewed desire the involvement of their patients in their own end-of-life decisions, evidencing a growing recognition of individual autonomy among healthcare professionals in Singapore.5,31 Closer scrutiny of the data suggests that this desire to respect individual autonomy has yet to be translated into action. Ching et al.’s study of the practices of the same group of physicians featured in Yang et al.’s study revealed that only 9% of alert and competent patients under the care of these physicians were actually consulted on their do-not-resuscitate (DNR) orders at the end of life.32,33 This echoed Phua et al.’s33 findings in another Singaporean healthcare setting.5,31–33 Foo et al. revealed that up to 59.9% of physicians would override the wishes of the patient when they became incompetent, in favor of those of the family, even if such decisions ran contrary to the previous wishes of the competent patient.6 This is particularly concerning when, in a separate study, Foo et al. revealed that up to one-third of familial decision making ran contrary to patient’s wishes.5
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Social and cultural considerations Portends of evolving sociocultural views toward a more individualistic concept of autonomy also prove premature.2–8 Data reveal that family-centric determinations, particularly within Singapore’s unique ‘‘market orientated health care system’’ that sees the costs of care borne by the patient, and not infrequently by the family, remain dominant in end-of-life care proceedings frequently at the expense of patient involvement.2–8,12–17 Inevitably, families are subject to sociocultural expectations to shoulder the burden of care of their dependents.2–4,7,8 Given these external pressures, questions are raised as to the motivation and the ability of the family to protect the patient’s best interests in light of competing personal and familial interests.2–4,18,19 At one extreme, family members are noted to pursue aggressive treatment options, sometimes of an unconventional nature, even in the face of medical futility simply to meet filial obligations of continued care and nonabandonment of dependents, while at the other extreme, care has been jeopardized by families placing their own interests over those of the patient.2–4 Both extremes may be traced to Confucian views of personhood which within the Singaporean context posits that the individual is envisaged as a part of the wider family unit, stressing relational ties, the preeminence of familial interests, and the primacy of familial identity of over that of the individual.13–17,27 A growing infusion of Western influences and the imbuing of wider psychosocial and existential considerations into this social setting, however, have raised questions as to the applicability of a Confucianinspired concept of personhood particularly in light of Krishna et al.’s study of conceptions of personhood in Singapore.1–4,9–11,34,35
Ethical considerations—conceptions of personhood The pivotal ethical consideration that forms the basis for calls for the employment of relational autonomy frameworks has been the manner that personhood is viewed in Singapore.34,35 Ho et al. who engaged Tsai’s Two Dimensional Concept of Confucian Personhood in Biomedical Practice to explain the continued employ of family-centric decision making in Singapore suggest that at the root of prevailing familycentric practices is the way in which personhood or ‘‘what makes you, you’’ is conceived under the aegis of Confucian ethics.2,9–11 Here, personhood is seen to have ‘‘vertical’’ and ‘‘horizontal’’ dimensions.9,10 The ‘‘horizontal’’ dimension represents the divinely ordained relationship between patient and family emphasizing their entwined existence.9,10 The ‘‘vertical’’ dimension highlights that while there is an autonomous component to personhood, it remains inextricably linked to familial interests.9–11 Here, the goal of this autonomous element, which is to attain ‘‘high moral achievement,’’ ‘‘is possible only through a process of engagement with others within the context of one’s social roles and relationships’’ where ‘‘family, community, country and the world, from the Confucian point of view, are spheres of selfhood where one engages in promoting them and transforming oneself.’’2,9–11 It is thus unsurprising that in practice, it is the horizontal dimension of Confucian personhood that dominates considerations creating the overarching interest of maintaining and advancing the interests of the family.2–4,6–11,31–35 It is adherence to this conception of personhood which in turn provides a fertile ground for the cultivation of relational autonomy frameworks.2,9–11,34,35 Krishna et al.’s data and case reports of oncology and palliative care patients in Singapore, however, dispute the validity of continued deference to this perspective in care determinations, showing personhood instead to be a contextually and temporally sensitive multidimensional concept.34,35 The Ring Theory of Personhood (Ring Theory) proffered as a result of these findings regards personhood to a coadunation of four interrelated, equally important domains that are delineated by four concentric rings—Innate,
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Individual
Innate Relational
Societal Figure 1. The Ring Theory of Personhood.
Individual, Relational, and Societal Rings—which in turn are focused upon maintenance of the integrity of an individual identity in response to changing psychosocial, clinical, and contextual considerations.34,35 (Figure 1). The Innate Ring highlights the dignity and rights owed to all as a result of Divine and/or human connections ‘‘irrespective of their stage of development or deterioration.’’34,35 The Individual Ring is defined by the presence and display of conscious function and a continuing identity over time.34,35 The Relational Ring houses ‘‘those personal relationships that the patient considers important,’’ while the outermost ring, the Societal Ring, contains ‘‘the social, professional and familial ties that are not felt to warrant a place in the Relational Ring by the patient’’ and ‘‘the societal, professional and familial expectations and standards that the patient and those within their various rings are subject to.’’34,35 The pertinent implications of this model are that all four domains are held to be of equal importance. Each domain focuses upon preserving the unique identity of the individual in the face of changing clinical conditions.34,35 Furthermore, personhood is maintained by competent patients displaying ‘‘psychological continuity’’ or an ‘‘uninterrupted connection concerning a particular person of his or her private life and personality.’’34,35 For those who are unable to maintain psychological continuity or are incompetent, personhood is endowed by those within their Relational and Societal Rings.34,35 Both these considerations give rise to ‘‘ring specific’’ interests called individual interests, which emphasize the fact that local conceptions of personhood cannot be entirely defined by family-centric beliefs and practices, and focus upon the preservation of the unique character of ‘‘what makes you who you are.’’34,35
Individual interests Individual interests are seen to be of equal importance to one another that begin with the emergence of the individual as a competent adult capable of exhibiting psychological continuity and maintaining his or her own personhood. Individual interests persist even after death, maintained by their Relational and Societal Rings.34,35 Relational and Societal individual interests are built upon reciprocal familial associations and revolve around maintaining societal position and familial status given the
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entwined nature of existence and the repercussions of personal failures upon those who share ties with them. Societal individual interests operate around securing a minimum level of care consistent with regnant institutional and professional accepted care standards. Relational individual interests emphasize the preservation of those personal links important to the patient, ensuring that those persons, whose relationships are deemed to lie within the Relational Ring, uphold the patient’s particular traits and guard their interests. Individual interests seek to preserve the unique characteristics that define the patient’s personhood. Individual interests, however, are not always atomistic given their convergent goals shared with Relational and Societal individual interests to preserve the family’s regard in society or ‘‘face.’’2–4,34,35 Innate individual interests that arise from the Innate Ring draw upon concerns influenced by the patient’s existential beliefs and help define the manner that life ought to be lived and how death ought to be addressed within the confines of societal expectations and laws. Individual interests highlight complex interests that move beyond familial considerations and societal beliefs that cannot be met solely by the invocation of family-centric views nor prevailing relational autonomy models.
Reconsidering relational autonomy Chan et al. appear to draw upon Mackenzie and Stoljar’s ‘‘loosely related collection of views’’ that emphasize ‘‘the social embeddedness of the self and on the social structures and relations that make autonomy possible.’’1,21,22,24–28 This approach maintains that the key component to autonomous choice is derived from ‘‘some form of reflective endorsement of motivating desires or values’’ within a shared decisionmaking platform.1,21,22,24–28 In the present climate, these assumptions prove problematic. The relational autonomy framework presumes that multidimensional interests and psychosocial and clinical views are taken as being ‘‘content neutral.’’21,22,24–28 Prevailing evidence, however, suggests the contrary, with neither psychosocial nor clinical considerations at the end of life being insignificant upon the cogitations of patients even in the face of lifelong habituation of prevailing psychosocial limitations and concomitant adaptation of preferences, nor static in their effects upon the deliberative process. Ho et al. report that 44.8% of palliative care patients felt that their clinical condition and its sequelae impaired their deliberative capacity while other commentators suggest that familial influences cannot be assumed to be entirely egalitarian nor cultivate decisions that are authentic to the patient’s values and wishes.20 Furthermore, the shared decision-making platform held to underpin the relational autonomy platform appears unlikely given the reported presence of collusion and circumnavigation of direct patient involvement.2–8,21,22,24– 28 Determinations in many settings are all too often between family and healthcare professionals leading to the conclusion that basic elements of autonomy at all levels of the decision-making process are compromised—necessitating the need for an alternative means of care deliberation.3,4
Meeting the need One practical means of overcoming the largely individualistic inclinations of the principles of autonomy may be to employ best interests decisions that are determined by a multidisciplinary team (MDT) review of each specific case. Here, in keeping with definitions set out by the National Health Services’ Manual of Cancer Services, the MDT is seen 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.36
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To further ensure a tempered, transparent, evidenced, accountable, and holistic approach to this review process, determinations of the patient’s best interests must necessarily include input from the patient’s family, intimates, and caregivers.3,4,36 The MDT-led welfare approach does not circumvent autonomy but encapsulates it within specific limits given the frequent compromises highlighted. Such limits prevent the breach of MDT-determined best interests judgments and institutionally and professionally sanctioned minimum standards of care. Primacy is to patient welfare, as defined beyond clinical considerations, hedonistic interests, and/or preference satisfaction but also upon maximizing quality of life of the patient as ascertained by the MDT in conjunction with inputs from the patient, family, and carers.
A return to medical paternalism? The MDT-based multidimensional review that sits behind the welfare model is seen as an expression of authoritarian influence that seeks to set clear limits to care determinations to ensure that basic care and best interests of the patient are not compromised.3,4 This welfare framework does not arrogate to the MDT ‘‘the absolute right to select therapy under the guise of always knowing what is best for the patient,’’ but seeks to prevent the patients from depriving themselves of both autonomy and their best interests under the aegis of their individually determined, overarching goals of care.3,4,23 This welfare-based MDT-led model serves a number of roles. These include the following: 1. Overcoming concerns of an entirely medically motivated decision-making system through the active involvement of the family and the patient in the deliberative process. Yang et al. revealed that it was nurses who could be relied upon to tamper entirely medically driven decision-making processes in care determinations.31 2. Tempering bias and reaffirming professional commitment to the patient’s best interests. Here, there is little doubt that individual healthcare professionals, who are themselves a part of this society, are prone to compliance with prevailing cultural practices. The MDT is seen to better address these ‘‘blind spots’’ and biases. 3. Acknowledging that considerations are not content neutral and influenced to differing levels by psychosocial factors. The MDT approach is also seen to provide an in depth multidimensional review of a particular case and aid in balancing the various sometimes competing considerations.3,4 4. Acknowledging reciprocal filial obligations and obedience by patients to their family to maintain ‘‘face’’ or the family’s regard in society. The multidimensional review undertaken by the MDT will allow for better understanding of the various pressures confronting the family in their care deliberations and alert the team of potential compromises to patient care.37,38 5. Accepting that patients and their families may not be best placed to make decisions given prevailing stressors. As Ho et al. and Krishna variously highlight, the presence of significant psychosocial considerations and emotional pressures sometimes compromises the ability of the family to effectively participate in end-of-life care determinations. 2–4,37,38 6. Ensuring that all parties are aware of basic care standards that must be maintained and any decisions that encroach upon them will not be supported. Here, the MDT ensures that all decisions taken remain within the boundaries set out by prevailing professional, institutional, legal, and clinical standards. The action of the MDT in limiting autonomy of the patient is seen as valid so long as the action advocated by the team is based upon a holistic and multiprofessional review that concludes that such action is in the patient’s best interests and in keeping with established sociocultural expectations, clinical and professional standards, as well as the patient’s beliefs, values, and goals. Indeed, such decisions need to be justified, evidenced, and documented to ensure accountability and transparency. Review by an independent palliative
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care team is also recommended to ensure that actions taken in violation of the patient’s autonomy are realistic, practical and have a good chance of improving improve the patient’s welfare. We hold, as Glick does, that ‘‘autonomy is not the ultimate end’’ nor does it ‘‘trump all other values,’’ but rather that it must be considered within the wider perspective of each individual case.39 While the context of Glick’s message differs, the effect remains the same—any damage against autonomy is outweighed by the meeting of the patient’s overarching goals of care, which from our experience are mostly focused upon the amelioration of suffering and the maximization of comfort.39 Our intention in forwarding this welfare model is to re-immerse local healthcare thinking in societally held, culturally appropriate practice that echoes the wishes of Singaporean patients who support a joint decision-making process between themselves and their healthcare professionals.3,4 Such an approach resonates with prevailing practice concepts and the need for clear, accountable, and transparent measures that ensure that basic care standards and best interests are maintained. Our model does not prevent free choice but merely ensures that any proposed action be within the remit of acceptable practice and the patient’s best interests. We hope that such practice will protect the interests and choices of patients and be readily imbibed within similar practice settings particularly, given its consonance with Confucian-inspired ancient Chinese Medical Ethics.3,4,11
Concluding Mariana’s case In Mariana’s case, as her symptoms progressed, her husband, Saiful, remained adamant that morphine not be administered despite pleas from Mariana, her children, siblings, Saiful’s siblings, and the local Muslim cleric. As control of her symptoms became increasingly compromised, the MDT notified Saiful that while sensitive to his position, a holistic determination of Mariana’s best interests had adjudged that morphine was required. Supported by Mariana’s previous preference for morphine and her continued statements that it was her husband who forbade her to use morphine, the MDT, acting to maximize her welfare, overruled Saiful’s wishes in order to protect her individual and innate interests. When Saiful requested a ‘‘terminal discharge’’ to allow Mariana to die at home and there was significant evidence that there was little physical support available and a high suspicion that her analgesics would be stopped, the welfare-based MDT-led model we propose was applied, which guided the MDT to conclude that Mariana’s welfare would undoubtedly be compromised should her terminal discharge be facilitated both as a result of the risk to her general care and to her pain control. Similarly, close scrutiny of Mariana’s decision making ability revealed the presence of potentially coercive familial and social factors. Mariana’s apparent acquiescence of her husband’s request for her terminal discharge was not in her best interests. This decision by the MDT not to facilitate her discharge home did sit contrary to prevailing practice that would normally have seen her wish to be discharged granted, particularly as it was consistent with her cultural practices and as she was keen to comply with her husband’s wishes. Yet, closer scrutiny of the rationale behind such a request, concerns by the wider family, and the competing interests involved suggested that her husband on this occasion may not have been acting in her best interests and/or was not fully able to grasp the wider considerations surrounding his application. As a result, it was left to the MDT as a whole to act to ensure that her best interests were preserved and clinical standards were maintained rather than mere reliance upon the relational autonomy model. Mariana passed away in the hospice 2 days later, requiring increasing doses of opioids to control her mounting pain. Her family seeing her distress realized that they would not have been able to cope with her escalating physical care and analgesic requirements. They were also assuaged by the fact that the family were allowed to stay with the patient in a private room over those 2 days and were able to say their last goodbyes and perform the prayers they wanted to for her.
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Not long after her demise, Mariana’s children and Saiful’s siblings returned with Saiful’s blessings to thank the staff for their care. It is clear that there will be some instances when the family may remain aggrieved, yet we believe that our professional duties to the patient and their individual interests should not be compromised and that decisions about the care of a patient must be viewed on a platform that extends beyond simple acquiescence of the wishes of the patient or indeed those of the family and be based instead upon a wider, holistic review of what would maximize the patient’s best interests and welfare. Conflict of interest The authors declare that there is no conflict of interest. Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. References 1. Chan TE, Peart NS and Chin J. Evolving legal responses to dependence on families in New Zealand and Singapore healthcare. J Med Ethics. Epub ahead of print 20 August 2013. DOI: 10.1136/medethics-2012-101225. 2. Ho MZJ, Krishna L and Yee ACP. Chinese familial tradition and Western influences: a case study in Singapore on decision making at the end of life. J Pain Symptom Manage 2010; 40(6): 932–936. 3. Krishna L. The position of the family of palliative care patients within the decision making process at the end of life in Singapore. Ethics Med 2011; 27(3): 183–190. 4. Krishna L. Decision making at the end of life: a Singaporean perspective. Asian Bioeth Rev 2011; 3(2): 118–126. 5. Foo ASC, Lee TW and Soh CR. Discrepancies in end of life decisions between elderly patients and their named surrogates. Ann Acad Med Singapore 2012; 41: 141–153. 6. Foo WT, Zheng Y, Yang GM, et al. Factors considered in end of life decision making of health care professional. Am J Hosp Palliat Care 2013; 30: 354–358. 7. Toh HC. Providing hope in terminal cancer: when is it appropriate and when is it not? Ann Acad Med Singapore 2011; 40: 50–55. 8. Tan JOA, Chin JJL, Kaan TSH, et al. What doctors say about care of the dying. Singapore: Lien Foundation, 2011. 9. Tsai DF. How should doctors approach patients? A Confucian reflection on personhood. J Med Ethics 2001; 27(1): 44–50. 10. Tsai DFC. The two dimensional concept of Confucian personhood in biomedical practice. In: Doring O and Chen R (eds) Advances in Chinese medical ethics: Chinese and international perspectives. Hamburg: Institute of Asian Affairs, 2002, pp. 195–213. 11. Tsai DFC. Ancient Chinese medical ethics and the four principles of biomedical ethics. J Med Ethics 1999; 25: 315–332. 12. Maintenance of Parent Act 2010, http://statutes.agc.gov.sg/aol/search/display/view.w3p;page¼0;query ¼DocId% 3A%221ce29500-b64a-4000-b8ae-120e507c04e8%22%20Status%3Ainforce%20Depth%3 A0;rec=0 (accessed 24 April 2014). 13. Healthcare Financing Philosophy. Ministry of Health Singapore, http://www.moh.gov.sg/content/moh_web/home/ costs_and_financing.html (accessed 24 April 2012). 14. Medisave. Costing and Financing, Ministry of Health, https://www.moh.gov.sg/content/moh_web/home/costs_ and_financing/schemes_subsidies/medisave.html (accessed 12 April 2012). 15. Medical and Elderly Care Endowment Schemes Act (Cap. 173A, 2001 rev. ed. Sing.), Part II. Costs and Financing, Ministry of Health (13 May 2013), http://www.moh.gov.sg/content/moh_web/home/costs_and_financing.html (accessed 12 September 2013).
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16. National Medical Ethics Committee (NMEC). Advance medical directives: a report by the National Medical Ethics Committee. Singapore: NMEC, 1995. 17. Guide on ethical Handling of Communication in Advance Care Planning. Singapore: NMEC, 2010, http:// www.moh.gov.sg/content/moh_web/home/Publications/guidelines/national_medical_ethics_committee_guidelines.html (accessed 12 September 2013). 18. Liu Q. Core culture values and beliefs of Singapore. White paper, shared values. Singapore: Singapore National Printers, 1991, http://www.ncl.ac.uk/ecls/assets/documents/pdf/countryfiles/CCC-Singapore.pdf (accessed 24 April 2012). 19. Tan C. Our shared values in Singapore: a Confucian perspective. Educ Theory 2012; 62(4): 449–463. 20. Ho ZJM, Krishna LKR, Goh C, et al. The physician–patient relationship in treatment decision-making at the end of life: a pilot study of cancer patients in a Southeast Asian society. Palliat Support Care. Epub ahead of print 18 July 2012, http://dx.doi.org/10.1017/S1478951512000429 21. Crisp R. Autonomy, welfare and the treatment of AIDS. J Med Ethics 1989; 15(2): 68–73. 22. Spriggs M. Autonomy in the face of a devastating diagnosis. J Med Ethics 1998; 24: 123–126. 23. Beauchamp TL and Childress JF. Respect for autonomy In: Beauchamp TL and Childress JF (eds) Principles of biomedical ethics. 6th ed. New York: Oxford University Press, 2007, pp. 99–148. 24. Stoljar N. Feminist perspectives on autonomy. In: Zalta Edward N (ed.) The Stanford encyclopedia of philosophy (Summer 2013 Edition), http://plato.stanford.edu/archives/sum2013/entries/feminism-autonomy/ 25. MacKenzie C and Stoljar N. Introduction: autonomy refigured. In: MacKenzie C and Stoljar N (eds) Relational autonomy: feminist perspectives on autonomy, agency, and the social self. New York: Oxford University Press, 2000, pp. 3–31. 26. Oshana M. Personal autonomy and society. J Soc Philos 1998; 29(1): 81–102. 27. Wilson F, Ingleton C, Gott M, et al. Autonomy and choice in palliative care: time for a new model? J Adv Nurs 2014; 70: 1020–1029. 28. Westlund A. Rethinking relational autonomy. Hypathia 2009; 24(4): 26–49. 29. Advanced Medical Directive Act 2007. Ministry of Health Singapore, http://statutes.agc.gov.sg/aol/search/display/ view.w3p;page=0;query=DocId%3Ac3137d32-215d-4bd1-a935-fc4770fc5850%20%20Status%3Ainforce%20Depth% 3A0;rec=0 (accessed 24 April 2014). 30. Stroud S. ‘‘Weakness of Will.’’ In: Zalta Edward N (ed.) The Stanford encyclopedia of philosophy (Spring 2014 edition). In press, http://plato.stanford.edu/archives/spr2014/entries/weakness-will/ 31. Yang MG, Kwee AK and Krishna L. Should patients and family be involved in ‘‘Do not resuscitate’’ decisions? Views of oncology and palliative care doctors and nurses. Indian J Palliat Care 2012; 18(1): 52–58. 32. Ching JA, Quah YL, Yang GM, et al. Patient and family involvement in decision making for management of cancer patients at a centre in Singapore. BMJ Support Palliat Care. Epub ahead of print 3 January 2013. DOI: 10.1136/ bmjspcare-2012–000323. 33. Phua J, Kee AC, Tan A, et al. End-of-life care in the general wards of a Singaporean hospital: an Asian perspective. J Palliat Med 2011; 14(12): 1296–1301. 34. Krishna LKR, Alsuwaigh R and Sim SW. Ring Theory of Personhood. Am J Hosp Palliat Care. Epub ahead of print 13 August 2013. DOI: 10.1177/1049909113500136. 35. Krishna LKR. Accounting for personhood in palliative sedation: the Ring Theory of Personhood. Med Humanit. Epub ahead of print 26 September 2013. DOI: 10.1136/medhum-2013–010368. 36. Manual for Cancer Services 2004. London: Department of Health, 2004. 37. Krishna L. Best interests principle in the determination for palliative sedation within the Singapore context. Nurs Ethics 2012; 19(6): 787–799. 38. Krishna L. Consent in terminal sedation. Indian J Med Ethics 2010; VII(3): 161–165. 39. Glick SM. Morality of coercion. J Med Ethics 2000; 26(5): 393–395.
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Limits to relational autonomy—The Singaporean experience
Nursing Ethics 2015, Vol. 22(3) 331–340 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014533239 nej.sagepub.com
Lalit Kumar Radha Krishna and Deborah S Watkinson National Cancer Center Singapore, Singapore
Ng Lee Beng Singapore General Hospital, Singapore
Abstract Recognition that the Principle of Respect for Autonomy fails to work in family-centric societies such as Singapore has recently led to the promotion of relational autonomy as a suitable framework within which to place healthcare decision making. However, empirical data, relating to patient and family opinions and the practices of healthcare professionals in Confucian-inspired Singapore, demonstrate clear limitations on the ability of a relational autonomy framework to provide the anticipated compromise between prevailing family decision-making norms and adopted Western led atomistic concepts of autonomy. Evidence suggests that despite a growing infusion of Western influence, there is still little to indicate any major shift to individual decision making, particularly in light of the way society and healthcare are structured. Similarly, the lack of employing a shared decision-making model and data that discredit the notion that the complex psychosocial and cultural factors that affect the decision making may be considered ‘‘content neutral’’ not only prevents the application of relational autonomy but questions the viability of the values behind the Principle of Respect for Autonomy. Taking into account local data and drawing upon a wider concept of personhood that extends beyond prevailing family-centric ideals along with the complex interests that are focused upon the preservation of the unique nature of personhood that arises from the Ring Theory of Personhood, we propose and ‘‘operationalize’’ the employing of an authoritative welfare-based approach, within the confines of best interest decision making, to better meet the current care needs within Singapore. Keywords End of life, multidisciplinary team, palliative care, personhood, relational autonomy, Ring Theory of Personhood, welfare
Introduction The failure to fully integrate Beauchamp and Childress’s Principle of Respect for Autonomy in Confucianinspired and family-centric societies is well documented.1–11 In circumstances where it is relational rather than atomistic concepts of autonomy that are celebrated, the appeal of relational autonomy-based frameworks,
Corresponding author: Lalit Kumar Radha Krishna, Department of Palliative Medicine, National Cancer Center Singapore, 11 Hospital Drive, Singapore 169610. Email: [email protected]
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which recognize ‘‘the individual’s connectedness to their family,’’ is evident. The characteristics of Singapore’s sociocultural backdrop and healthcare financing structure, which pivot upon the melding of ‘‘individual responsibility’’ and governmental led subsidized care, have contributed toward the creation of a unique medium for the culture of patient autonomy ‘‘in relational terms.’’ This culture of embracing relational autonomy formulations has been encouraged by legislation and national ideology, which emphasizes fealty and communitarian values.1–8,12–20 Yet, this same fertile ground that supports relational autonomy frameworks also draws attention to the manifest flaws of this inclination within a cultural backdrop that emphasizes the familial role in care provisions and expounds the belief that protection from ‘‘bad news’’ and the maintenance of hope will prolong life.1–8,12–20 This often culminates in the practice of collusion and the employment of various means of circumnavigating direct patient involvement in the deliberative process to maintain hope. Ultimately, this engenders concerns regarding Principle of Respect for Autonomy as a whole.1–8,20 In light of a dearth of clear limits to the influence of the family upon patient autonomy and a lack of minimum care standards that potentially compromise the best interests of the patient, a workable alternative that appropriately addresses these concerns within the confines regnant clinical and psychosocial considerations is required.1–8,20 To appropriately contextualize our position in forwarding our multidimensional, multiprofessional welfare-based model as an alternative to relational autonomy frameworks and prevailing family-centric conceptions, we will highlight the complex ethical, practical, and psychosocial considerations within the palliative care context in Singapore that predispose to these practices that potentially threaten the best interests of patients.5,21–23 Through an evidence-based, ethically appropriate, and culturally sensitive approach, we will also scrutinize the foundations of family-centric practices and based on this analysis propose our alternative model to ensuring the maintenance of basic standard of care and the best interests of this vulnerable patient population.
Adopting relational autonomy over Principle of Respect for Autonomy in Singapore Singapore’s nuanced application of shared costs for medical care and acknowledged embrace of Confucian principles provide fertile grounds for the adoption of relational aspects of autonomy which recognises the individual’s connectedness to their family, and also from growing state reliance upon families to share the burdens and costs of caring for elderly and disabled dependents.1
Here, atomistic concepts of autonomy, privacy, and confidentiality are reimagined under the aegis of ‘‘socially and culturally inflected values, beliefs and expectations of familial roles and responsibilities’’ and an acceptance of a patient’s ‘‘dependence upon others.’’1 Recognition of this reliance upon caregivers, most commonly family members, is highlighted by Singapore’s Maintenance of Parents Act 1996 that imposes a statutory obligation on children to pay maintenance for their parents and the use of ‘‘means testing’’ of the family, rather than the individual, in the disbursing of funds by the Medical Endowment Fund.1–8,12–20 These conditions, in conjunction with the trumpeting of interrelated concepts of personhood and reciprocity within the national ideology, are said to make it ‘‘practically impossible to insist on an individualistic approach to healthcare decision-making given this de facto allocation of financial responsibility within the Singapore healthcare system.’’1,3,4,12–20 The person is not seen in atomistic Kantian terms but as a part of the family unit and its identity.1–4 Freedom of medical choice is frequently limited to the confines of familial interests and their willingness to
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shoulder financial, physical, emotional, and spiritual care.1,21–29 Patient autonomy is inescapably proportional and recipient to the family’s agency.1–4 This is prevalent within the context of progressive and chronic illnesses where dependence upon the family precipitates further erosion of personal choice, clear understanding, and freedom from interference in decision making.21,22,24–28 Compounding this is the inability of individualistic concepts to contend with the ‘‘weak willed’’ patient who takes free intentional action contrary to their own better judgment or those indoctrinated with ideas that ultimately prevent autonomous decision making.30 Take for example Mariana, a competent Muslim lady of Chinese heritage from Indonesia, whose only wish at the end of her life was adequate pain relief but had to content herself with suffering in silence as a result of her social, cultural, and religious obligations to comply with her husband’s wishes not to accept the use of morphine. Underpinning these misgivings and misconceptions with regard to opioids were Mariana’s husband’s own obligations to maintain ‘‘hope’’ and the belief that acceptance of morphine would be seen as a sign of capitulation and an abandonment of his wife. While he had seen first-hand both his wife’s agony and the efficacy of morphine when it had previously been applied, he struggled to accept the somnolence and confusion that accompanied the analgesic effects, much less her inability to recite verses of the Quran. Mariana’s faith was important to her, but she felt her physical condition required more attention and voiced her concerns to her husband. Mariana’s reluctance to exert her individual autonomy was also a sacrifice for her family, who were struggling with care costs and could ill afford the other available treatment options, such as oxycodone and neurolytic interventions. Rigid expectations of autonomous action on Mariana’s part are unrealistic even for a conception of Principle of Respect for Autonomy that embraces relevant cultural and societal beliefs.21,22,24–28 Chan et al. maintain that relational autonomy acknowledges this ‘‘ambiguous interaction between apparently conflicting legal norms—patient autonomy and family responsibility’’ facilitated by the employment of a ‘‘reflexive, negotiated model of interaction’’ and the clear specifications of the basic standards of care, confidentiality, and respect for autonomy contained within Singapore’s Advanced Medical Directive Act 1995 (AMDA), the Mental Capacity Act 2008 (MCA), and within the National Medical Ethics Committee’s (NMEC) position on familial involvement in care determinations.1,12– 20,29 In reality, while expressing flexibility and wider considerations over the rigid requirements of Principle of Respect for Autonomy, the benefits of relational autonomy in ensuring that compromise of Mariana’s care provision does not breach institutionally maintained minimum standards are rarely realized.1–4,7,8,21–23,27,28
Empirical data Chan et al. forward Yang et al.’s study which revealed that 78.8% of physicians interviewed desire the involvement of their patients in their own end-of-life decisions, evidencing a growing recognition of individual autonomy among healthcare professionals in Singapore.5,31 Closer scrutiny of the data suggests that this desire to respect individual autonomy has yet to be translated into action. Ching et al.’s study of the practices of the same group of physicians featured in Yang et al.’s study revealed that only 9% of alert and competent patients under the care of these physicians were actually consulted on their do-not-resuscitate (DNR) orders at the end of life.32,33 This echoed Phua et al.’s33 findings in another Singaporean healthcare setting.5,31–33 Foo et al. revealed that up to 59.9% of physicians would override the wishes of the patient when they became incompetent, in favor of those of the family, even if such decisions ran contrary to the previous wishes of the competent patient.6 This is particularly concerning when, in a separate study, Foo et al. revealed that up to one-third of familial decision making ran contrary to patient’s wishes.5
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Social and cultural considerations Portends of evolving sociocultural views toward a more individualistic concept of autonomy also prove premature.2–8 Data reveal that family-centric determinations, particularly within Singapore’s unique ‘‘market orientated health care system’’ that sees the costs of care borne by the patient, and not infrequently by the family, remain dominant in end-of-life care proceedings frequently at the expense of patient involvement.2–8,12–17 Inevitably, families are subject to sociocultural expectations to shoulder the burden of care of their dependents.2–4,7,8 Given these external pressures, questions are raised as to the motivation and the ability of the family to protect the patient’s best interests in light of competing personal and familial interests.2–4,18,19 At one extreme, family members are noted to pursue aggressive treatment options, sometimes of an unconventional nature, even in the face of medical futility simply to meet filial obligations of continued care and nonabandonment of dependents, while at the other extreme, care has been jeopardized by families placing their own interests over those of the patient.2–4 Both extremes may be traced to Confucian views of personhood which within the Singaporean context posits that the individual is envisaged as a part of the wider family unit, stressing relational ties, the preeminence of familial interests, and the primacy of familial identity of over that of the individual.13–17,27 A growing infusion of Western influences and the imbuing of wider psychosocial and existential considerations into this social setting, however, have raised questions as to the applicability of a Confucianinspired concept of personhood particularly in light of Krishna et al.’s study of conceptions of personhood in Singapore.1–4,9–11,34,35
Ethical considerations—conceptions of personhood The pivotal ethical consideration that forms the basis for calls for the employment of relational autonomy frameworks has been the manner that personhood is viewed in Singapore.34,35 Ho et al. who engaged Tsai’s Two Dimensional Concept of Confucian Personhood in Biomedical Practice to explain the continued employ of family-centric decision making in Singapore suggest that at the root of prevailing familycentric practices is the way in which personhood or ‘‘what makes you, you’’ is conceived under the aegis of Confucian ethics.2,9–11 Here, personhood is seen to have ‘‘vertical’’ and ‘‘horizontal’’ dimensions.9,10 The ‘‘horizontal’’ dimension represents the divinely ordained relationship between patient and family emphasizing their entwined existence.9,10 The ‘‘vertical’’ dimension highlights that while there is an autonomous component to personhood, it remains inextricably linked to familial interests.9–11 Here, the goal of this autonomous element, which is to attain ‘‘high moral achievement,’’ ‘‘is possible only through a process of engagement with others within the context of one’s social roles and relationships’’ where ‘‘family, community, country and the world, from the Confucian point of view, are spheres of selfhood where one engages in promoting them and transforming oneself.’’2,9–11 It is thus unsurprising that in practice, it is the horizontal dimension of Confucian personhood that dominates considerations creating the overarching interest of maintaining and advancing the interests of the family.2–4,6–11,31–35 It is adherence to this conception of personhood which in turn provides a fertile ground for the cultivation of relational autonomy frameworks.2,9–11,34,35 Krishna et al.’s data and case reports of oncology and palliative care patients in Singapore, however, dispute the validity of continued deference to this perspective in care determinations, showing personhood instead to be a contextually and temporally sensitive multidimensional concept.34,35 The Ring Theory of Personhood (Ring Theory) proffered as a result of these findings regards personhood to a coadunation of four interrelated, equally important domains that are delineated by four concentric rings—Innate,
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Individual
Innate Relational
Societal Figure 1. The Ring Theory of Personhood.
Individual, Relational, and Societal Rings—which in turn are focused upon maintenance of the integrity of an individual identity in response to changing psychosocial, clinical, and contextual considerations.34,35 (Figure 1). The Innate Ring highlights the dignity and rights owed to all as a result of Divine and/or human connections ‘‘irrespective of their stage of development or deterioration.’’34,35 The Individual Ring is defined by the presence and display of conscious function and a continuing identity over time.34,35 The Relational Ring houses ‘‘those personal relationships that the patient considers important,’’ while the outermost ring, the Societal Ring, contains ‘‘the social, professional and familial ties that are not felt to warrant a place in the Relational Ring by the patient’’ and ‘‘the societal, professional and familial expectations and standards that the patient and those within their various rings are subject to.’’34,35 The pertinent implications of this model are that all four domains are held to be of equal importance. Each domain focuses upon preserving the unique identity of the individual in the face of changing clinical conditions.34,35 Furthermore, personhood is maintained by competent patients displaying ‘‘psychological continuity’’ or an ‘‘uninterrupted connection concerning a particular person of his or her private life and personality.’’34,35 For those who are unable to maintain psychological continuity or are incompetent, personhood is endowed by those within their Relational and Societal Rings.34,35 Both these considerations give rise to ‘‘ring specific’’ interests called individual interests, which emphasize the fact that local conceptions of personhood cannot be entirely defined by family-centric beliefs and practices, and focus upon the preservation of the unique character of ‘‘what makes you who you are.’’34,35
Individual interests Individual interests are seen to be of equal importance to one another that begin with the emergence of the individual as a competent adult capable of exhibiting psychological continuity and maintaining his or her own personhood. Individual interests persist even after death, maintained by their Relational and Societal Rings.34,35 Relational and Societal individual interests are built upon reciprocal familial associations and revolve around maintaining societal position and familial status given the
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entwined nature of existence and the repercussions of personal failures upon those who share ties with them. Societal individual interests operate around securing a minimum level of care consistent with regnant institutional and professional accepted care standards. Relational individual interests emphasize the preservation of those personal links important to the patient, ensuring that those persons, whose relationships are deemed to lie within the Relational Ring, uphold the patient’s particular traits and guard their interests. Individual interests seek to preserve the unique characteristics that define the patient’s personhood. Individual interests, however, are not always atomistic given their convergent goals shared with Relational and Societal individual interests to preserve the family’s regard in society or ‘‘face.’’2–4,34,35 Innate individual interests that arise from the Innate Ring draw upon concerns influenced by the patient’s existential beliefs and help define the manner that life ought to be lived and how death ought to be addressed within the confines of societal expectations and laws. Individual interests highlight complex interests that move beyond familial considerations and societal beliefs that cannot be met solely by the invocation of family-centric views nor prevailing relational autonomy models.
Reconsidering relational autonomy Chan et al. appear to draw upon Mackenzie and Stoljar’s ‘‘loosely related collection of views’’ that emphasize ‘‘the social embeddedness of the self and on the social structures and relations that make autonomy possible.’’1,21,22,24–28 This approach maintains that the key component to autonomous choice is derived from ‘‘some form of reflective endorsement of motivating desires or values’’ within a shared decisionmaking platform.1,21,22,24–28 In the present climate, these assumptions prove problematic. The relational autonomy framework presumes that multidimensional interests and psychosocial and clinical views are taken as being ‘‘content neutral.’’21,22,24–28 Prevailing evidence, however, suggests the contrary, with neither psychosocial nor clinical considerations at the end of life being insignificant upon the cogitations of patients even in the face of lifelong habituation of prevailing psychosocial limitations and concomitant adaptation of preferences, nor static in their effects upon the deliberative process. Ho et al. report that 44.8% of palliative care patients felt that their clinical condition and its sequelae impaired their deliberative capacity while other commentators suggest that familial influences cannot be assumed to be entirely egalitarian nor cultivate decisions that are authentic to the patient’s values and wishes.20 Furthermore, the shared decision-making platform held to underpin the relational autonomy platform appears unlikely given the reported presence of collusion and circumnavigation of direct patient involvement.2–8,21,22,24– 28 Determinations in many settings are all too often between family and healthcare professionals leading to the conclusion that basic elements of autonomy at all levels of the decision-making process are compromised—necessitating the need for an alternative means of care deliberation.3,4
Meeting the need One practical means of overcoming the largely individualistic inclinations of the principles of autonomy may be to employ best interests decisions that are determined by a multidisciplinary team (MDT) review of each specific case. Here, in keeping with definitions set out by the National Health Services’ Manual of Cancer Services, the MDT is seen 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.36
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To further ensure a tempered, transparent, evidenced, accountable, and holistic approach to this review process, determinations of the patient’s best interests must necessarily include input from the patient’s family, intimates, and caregivers.3,4,36 The MDT-led welfare approach does not circumvent autonomy but encapsulates it within specific limits given the frequent compromises highlighted. Such limits prevent the breach of MDT-determined best interests judgments and institutionally and professionally sanctioned minimum standards of care. Primacy is to patient welfare, as defined beyond clinical considerations, hedonistic interests, and/or preference satisfaction but also upon maximizing quality of life of the patient as ascertained by the MDT in conjunction with inputs from the patient, family, and carers.
A return to medical paternalism? The MDT-based multidimensional review that sits behind the welfare model is seen as an expression of authoritarian influence that seeks to set clear limits to care determinations to ensure that basic care and best interests of the patient are not compromised.3,4 This welfare framework does not arrogate to the MDT ‘‘the absolute right to select therapy under the guise of always knowing what is best for the patient,’’ but seeks to prevent the patients from depriving themselves of both autonomy and their best interests under the aegis of their individually determined, overarching goals of care.3,4,23 This welfare-based MDT-led model serves a number of roles. These include the following: 1. Overcoming concerns of an entirely medically motivated decision-making system through the active involvement of the family and the patient in the deliberative process. Yang et al. revealed that it was nurses who could be relied upon to tamper entirely medically driven decision-making processes in care determinations.31 2. Tempering bias and reaffirming professional commitment to the patient’s best interests. Here, there is little doubt that individual healthcare professionals, who are themselves a part of this society, are prone to compliance with prevailing cultural practices. The MDT is seen to better address these ‘‘blind spots’’ and biases. 3. Acknowledging that considerations are not content neutral and influenced to differing levels by psychosocial factors. The MDT approach is also seen to provide an in depth multidimensional review of a particular case and aid in balancing the various sometimes competing considerations.3,4 4. Acknowledging reciprocal filial obligations and obedience by patients to their family to maintain ‘‘face’’ or the family’s regard in society. The multidimensional review undertaken by the MDT will allow for better understanding of the various pressures confronting the family in their care deliberations and alert the team of potential compromises to patient care.37,38 5. Accepting that patients and their families may not be best placed to make decisions given prevailing stressors. As Ho et al. and Krishna variously highlight, the presence of significant psychosocial considerations and emotional pressures sometimes compromises the ability of the family to effectively participate in end-of-life care determinations. 2–4,37,38 6. Ensuring that all parties are aware of basic care standards that must be maintained and any decisions that encroach upon them will not be supported. Here, the MDT ensures that all decisions taken remain within the boundaries set out by prevailing professional, institutional, legal, and clinical standards. The action of the MDT in limiting autonomy of the patient is seen as valid so long as the action advocated by the team is based upon a holistic and multiprofessional review that concludes that such action is in the patient’s best interests and in keeping with established sociocultural expectations, clinical and professional standards, as well as the patient’s beliefs, values, and goals. Indeed, such decisions need to be justified, evidenced, and documented to ensure accountability and transparency. Review by an independent palliative
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care team is also recommended to ensure that actions taken in violation of the patient’s autonomy are realistic, practical and have a good chance of improving improve the patient’s welfare. We hold, as Glick does, that ‘‘autonomy is not the ultimate end’’ nor does it ‘‘trump all other values,’’ but rather that it must be considered within the wider perspective of each individual case.39 While the context of Glick’s message differs, the effect remains the same—any damage against autonomy is outweighed by the meeting of the patient’s overarching goals of care, which from our experience are mostly focused upon the amelioration of suffering and the maximization of comfort.39 Our intention in forwarding this welfare model is to re-immerse local healthcare thinking in societally held, culturally appropriate practice that echoes the wishes of Singaporean patients who support a joint decision-making process between themselves and their healthcare professionals.3,4 Such an approach resonates with prevailing practice concepts and the need for clear, accountable, and transparent measures that ensure that basic care standards and best interests are maintained. Our model does not prevent free choice but merely ensures that any proposed action be within the remit of acceptable practice and the patient’s best interests. We hope that such practice will protect the interests and choices of patients and be readily imbibed within similar practice settings particularly, given its consonance with Confucian-inspired ancient Chinese Medical Ethics.3,4,11
Concluding Mariana’s case In Mariana’s case, as her symptoms progressed, her husband, Saiful, remained adamant that morphine not be administered despite pleas from Mariana, her children, siblings, Saiful’s siblings, and the local Muslim cleric. As control of her symptoms became increasingly compromised, the MDT notified Saiful that while sensitive to his position, a holistic determination of Mariana’s best interests had adjudged that morphine was required. Supported by Mariana’s previous preference for morphine and her continued statements that it was her husband who forbade her to use morphine, the MDT, acting to maximize her welfare, overruled Saiful’s wishes in order to protect her individual and innate interests. When Saiful requested a ‘‘terminal discharge’’ to allow Mariana to die at home and there was significant evidence that there was little physical support available and a high suspicion that her analgesics would be stopped, the welfare-based MDT-led model we propose was applied, which guided the MDT to conclude that Mariana’s welfare would undoubtedly be compromised should her terminal discharge be facilitated both as a result of the risk to her general care and to her pain control. Similarly, close scrutiny of Mariana’s decision making ability revealed the presence of potentially coercive familial and social factors. Mariana’s apparent acquiescence of her husband’s request for her terminal discharge was not in her best interests. This decision by the MDT not to facilitate her discharge home did sit contrary to prevailing practice that would normally have seen her wish to be discharged granted, particularly as it was consistent with her cultural practices and as she was keen to comply with her husband’s wishes. Yet, closer scrutiny of the rationale behind such a request, concerns by the wider family, and the competing interests involved suggested that her husband on this occasion may not have been acting in her best interests and/or was not fully able to grasp the wider considerations surrounding his application. As a result, it was left to the MDT as a whole to act to ensure that her best interests were preserved and clinical standards were maintained rather than mere reliance upon the relational autonomy model. Mariana passed away in the hospice 2 days later, requiring increasing doses of opioids to control her mounting pain. Her family seeing her distress realized that they would not have been able to cope with her escalating physical care and analgesic requirements. They were also assuaged by the fact that the family were allowed to stay with the patient in a private room over those 2 days and were able to say their last goodbyes and perform the prayers they wanted to for her.
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Not long after her demise, Mariana’s children and Saiful’s siblings returned with Saiful’s blessings to thank the staff for their care. It is clear that there will be some instances when the family may remain aggrieved, yet we believe that our professional duties to the patient and their individual interests should not be compromised and that decisions about the care of a patient must be viewed on a platform that extends beyond simple acquiescence of the wishes of the patient or indeed those of the family and be based instead upon a wider, holistic review of what would maximize the patient’s best interests and welfare. Conflict of interest The authors declare that there is no conflict of interest. Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. References 1. Chan TE, Peart NS and Chin J. Evolving legal responses to dependence on families in New Zealand and Singapore healthcare. J Med Ethics. Epub ahead of print 20 August 2013. DOI: 10.1136/medethics-2012-101225. 2. Ho MZJ, Krishna L and Yee ACP. Chinese familial tradition and Western influences: a case study in Singapore on decision making at the end of life. J Pain Symptom Manage 2010; 40(6): 932–936. 3. Krishna L. The position of the family of palliative care patients within the decision making process at the end of life in Singapore. Ethics Med 2011; 27(3): 183–190. 4. Krishna L. Decision making at the end of life: a Singaporean perspective. Asian Bioeth Rev 2011; 3(2): 118–126. 5. Foo ASC, Lee TW and Soh CR. Discrepancies in end of life decisions between elderly patients and their named surrogates. Ann Acad Med Singapore 2012; 41: 141–153. 6. Foo WT, Zheng Y, Yang GM, et al. Factors considered in end of life decision making of health care professional. Am J Hosp Palliat Care 2013; 30: 354–358. 7. Toh HC. Providing hope in terminal cancer: when is it appropriate and when is it not? Ann Acad Med Singapore 2011; 40: 50–55. 8. Tan JOA, Chin JJL, Kaan TSH, et al. What doctors say about care of the dying. Singapore: Lien Foundation, 2011. 9. Tsai DF. How should doctors approach patients? A Confucian reflection on personhood. J Med Ethics 2001; 27(1): 44–50. 10. Tsai DFC. The two dimensional concept of Confucian personhood in biomedical practice. In: Doring O and Chen R (eds) Advances in Chinese medical ethics: Chinese and international perspectives. Hamburg: Institute of Asian Affairs, 2002, pp. 195–213. 11. Tsai DFC. Ancient Chinese medical ethics and the four principles of biomedical ethics. J Med Ethics 1999; 25: 315–332. 12. Maintenance of Parent Act 2010, http://statutes.agc.gov.sg/aol/search/display/view.w3p;page¼0;query ¼DocId% 3A%221ce29500-b64a-4000-b8ae-120e507c04e8%22%20Status%3Ainforce%20Depth%3 A0;rec=0 (accessed 24 April 2014). 13. Healthcare Financing Philosophy. Ministry of Health Singapore, http://www.moh.gov.sg/content/moh_web/home/ costs_and_financing.html (accessed 24 April 2012). 14. Medisave. Costing and Financing, Ministry of Health, https://www.moh.gov.sg/content/moh_web/home/costs_ and_financing/schemes_subsidies/medisave.html (accessed 12 April 2012). 15. Medical and Elderly Care Endowment Schemes Act (Cap. 173A, 2001 rev. ed. Sing.), Part II. Costs and Financing, Ministry of Health (13 May 2013), http://www.moh.gov.sg/content/moh_web/home/costs_and_financing.html (accessed 12 September 2013).
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