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Abstract
Application of sedation at the end of life has been fraught with ethical and clinical concerns, primarily focused on its potential to hasten death. However, in the face of clinical data that assuage most of these concerns, a new threat to this treatment of last resort has arisen. Concern now pivots on its effects on the personhood of the patient, underpinned by the manner in which personhood has been conceptualised. For many authors, it is consciousness that is seen to be the seat of personhood, thus its loss is seen to rob a patient of their moral and ethical worth, leaving them in a state that cannot ethically be differentiated from death. Here I proffer a clinically based alternative to this view, the Ring Theory of Personhood, which dispels these concerns about sedation at the end of life. The Ring Theory envisages personhood as a coadunation of three domains of concern: the innate, the individual and the relational elements of personhood. The innate element of personhood is held to be present among all humans by virtue of their links with the Divine and or their human characteristics. The individual elements of personhood pivot on the presence of consciousness-dependent features such as self-awareness, self-determination and personality traits. The relational component of personhood envisages an individual as being ‘socially embedded’ replete with social and familial ties. It is these three equally important inter-related domains that define personhood.
- End of life care
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Overview
It has been suggested that the moral and ethical worth of a person's life revolves around his or her ability to manifest features of personhood.1 ,2 For some authors, this measure of human life pivots on the presence of consciousness.1 ,2 Materstvedt1 raises the concern that the act of sedating a patient to unconsciousness for the treatment of intractable suffering at the end of life intentionally inhibits personhood and thus removes their inherent moral and ethical worth. This casts the procedure that de Graeff and Dean3 classify as deep (coma) sedation, where the patient is rendered uncommunicative and unrousable ostensibly till the end of their life, as intentionally inducing a state of ‘social death’. From this understanding, it has been suggested that deep and continuous palliative sedation (DCPS) may be indistinguishable from euthanasia.1 ,2 While Juth et al2 and Materstvedt1 go on to apply various rationales to distance this threat to the legitimate employment of sedation of this nature with varying success, I suggest that the solution lies in a better comprehension of personhood.1 ,4 While I do not share the assumptions and views of these authors with regard to treatments of last resort such as DCPS, I will nonetheless set these considerations aside and address issues pertaining solely to the manner in which these authors view the personhood of these deeply sedated patients.
Given that prevailing prescriptions of terminal sedation and palliative sedation consider a variety of lesser levels of sedation such as light intermittent, light continuous and deep intermittent sedation, as opposed to deep continuous sedation, which is the most susceptible to claims of ‘social death’,4 I will focus my discussion on the very specific practice of DCPS.
Deep and continuous palliative sedation
Materstvedt1 also focuses on this subtype of sedation, which he considers to be most in line with Juth et al's2 earlier description of palliative sedation, DCPS. de Graeff and Dean3 define this level of sedation as induction of sedation to a point where the patient is in an ‘unconscious and unresponsive’ state. The principle underpinning the application of DCPS is that suffering is a conscious perception and the eradication of consciousness ought to inhibit awareness of intractable suffering of imminently dying patients who have exhausted all other treatment options. It is this intentional sedation of the patient and thus the subversion of their personhood, as a treatment of last resort, that Juth et al argue raises comparisons with euthanasia (figure 1).2
The apparent implications of deep continuous palliative sedation.
The position on personhood
While Materstvedt's position on personhood is unclear, for authors such as Juth et al, the concept of personhood pivots on the presence of consciousness and cognitive ability.1 ,5–7 While consciousness and cognitive ability are critical elements of personhood, clinical experience suggests that they do not account for the total picture of personhood. Here an alternative view of personhood is presented, drawn from clinical experience in end-of-life care.
The Ring Theory of Personhood suggests that personhood comprises three closely linked, dynamic areas: an innermost ring, the ‘Innate Ring’, is anchored in the notion that all humans are conferred with personhood as a result of being human irrespective of their stage of life; the middle ring, the ‘Individual Ring’, encompasses the values, beliefs, roles, personality traits, goals and preferences that a patient holds and expresses, which revolves around consciousness; and finally, the outermost ring, the ‘Relational Ring’, consists of a patient's personal ties and connections with others (figure 2). Taken together, these three rings are what constitute a patient's personhood.
The Ring Theory of Personhood.
The Innate Ring of Personhood
The innermost ring, the Innate Ring, contains the first element of personhood, Innate Personhood. Innate Personhood is anchored in the notion that all persons are a reflection of God, imbued with human dignity and rights, irrespective of their stage of development or deterioration.8 ,9 This idea is echoed less ecclesiastically in Devine's ‘Species Principle’, which holds that all members of “the ‘species homo sapiens’ are persons whereas non-human animals, robots or extraterrestrial life cannot be persons”.8 While it may be susceptible to calls of being ‘speciesist’, such a view ought to be regarded as inclusive rather than one that excludes other life forms. In part, this relates to the continued prejudice against girls and the disabled. Most of my patients are eager to stress that all human children irrespective of their sex, physical and clinical conditions should be treated with equal respect and consideration. Hence the size of the Innate Ring for all humans is the same. Similarly, patients with varying levels of consciousness, in a persistent vegetative state, those in a terminal state suffering from delirium, and even those with severe dementia remain persons simply as a result of their continued resemblance to God and or as a result of being human.11
Clinical experience suggests that most patients believe that personhood is far more innately conceived and held to be present in all humans from the moment of conception to death solely as a result of being born with the genetic make up consistent with the species Homo sapiens.8
In addition to recognition of basic rights, Innate Personhood also accepts that the culture, religion, familial beliefs and values with which a child is brought up impact on how he or she develops as a person and how they conceive themselves. Adherence to their beliefs may change, and this is captured in the Innate Ring by an increase or decrease in its thickness. A change of religion or a loss of social, cultural and familial connections may significantly reduce the thickness of the ring, while embracing familial, cultural and religious beliefs may increase its size. Such considerations are not captured in other concepts of Innate Personhood.
This concept of Innate Personhood maintains that personhood ceases only when all medical efforts to resuscitate and support the body have ceased.12 ,13 In advance of death, Innate Personhood is not lost, even among the terminally ill, abandoned and destitute, unconscious and deteriorating.12 ,13
This concept of Innate Personhood receives significant support among patients and their families and is seen to imbue many of the deliberations associated with decisions regarding end-of-life care; however, clinical experience shows that the innate dimension of personhood is not the sole consideration. In truth, for many patients and their families, it appears that Innate Personhood is the platform for a wider concept of personhood, given that it is held to ‘reduce’ a person to just another human being or ‘simply another of God's children’. Individual, and indeed familial, identity, which is so significant to most patients, is rendered inconsequential, and a person is identified solely by their faith or their humanist beliefs. Such a position is rarely acceptable to most patients irrespective of their faith. Pressing too is the question as to the fate of those who share neither of these convictions.
The Individual Ring of Personhood
Encapsulating the Innate Ring is the Individual Ring, which contains the second element of personhood, Individual Personhood. Individual Personhood is associated with higher functions of consciousness. This ring, unlike the Innate Ring, is dynamic: it alters in size and may even be lost during a person's lifetime (figures 2 and 3). The size of the Individual Ring is seen as a function of the person's ability to exercise his or her own potential for individuality as well as display the requisite character and virtues that would be expected of someone of that age, race, religion, cultural background and particular social context.
A three-dimensional representation of the Ring Theory.
As an individual evolves over his or her lifetime, so too does his or her Individual Personhood, represented by her particular Individual Ring. The capacity to communicate and maintain ‘psychological continuity,’ moral agency and self-awareness is critical to a person's ability to expand his or her own potential for individuality.14 The Individual Ring expands as a person's various abilities mature and become more consistent. From this ring, an individual may develop traits of his own that are specific to his character and enables him to exert his independence from others, as would be the case in a maturing child. Here the child would form her own relations, which are independent of her familial links and based on her own characteristics. This independence increases her Individual Personhood. In so doing, the Individual Ring expands as a personal identity, replete with values, beliefs, psycho-spirituality, roles, personality traits and preferences, personal goals and emotional maturity, evolves.
In addition to a person's ability to exercise his or her own potential for individuality, the virtues and character of a person are as important to the development and maintenance of Individual Personhood as would be, for example, Fletcher's 15 ‘criteria or indicators’ of personhood, which include minimal intelligence, self-awareness, self-control, sense of time, sense of futurity, sense of past, concern for others, communication, control of existence, curiosity, change and changeability, balance of rationality and feeling, idiosyncrasy and neocortical function.12 Notions of virtues and character are culturally dependent and vary from culture to culture the world over.
A person's ability to conduct himself or herself in a manner that would be consistent with societal norms is not only important to the development and maintenance of Individual Personhood, but such conduct also fosters the cultivation of relationships with others. It is this maturity and consistency in exhibiting the various aspects of consciousness that allows the three-dimensional representation of the Individual Ring (figure 3). The ability to exhibit all the characteristics associated with consciousness, such as those cited by Fletcher, provide the size of the ring, while the ability to consistently express them provides the depth of the ring. A child would have a thinner smaller Individual Ring than an adult and not too dissimilar to that of an adult who is delirious or dementing.
This aspect of Individual Personhood not only further defines the scope of the Individual Ring, but it also brings to the fore the third ring of personhood, the Relational Ring, and the fact that there is significant interaction between the various elements of Personhood.
It is interesting that most patients do not subscribe to the idea that it is their consciousness, and thus the Individual Ring, that defines their personhood. In part, this appears to be a reflection of an acceptance among most terminally ill patients of an inevitable loss of capacity and consciousness and a shift in the manner in which they conceive their personhood. All too often, it is to the Relational Ring of Personhood that attention turns, to preserve their personhood in a manner that is in keeping with their beliefs and values.
The Relational Ring of Personhood
The outermost ring, the Relational Ring, contains the third element of personhood, Relational Personhood. Relational Personhood is based on the idea that individuals are embedded within society, and their identities are formed within the context of social relationships.15 The significance of someone's various personal, social and professional relationships to their Relational Personhood varies both culturally and individually. While some assert that there are three primary links that are key to an individual's personhood—that is, relationships with his or her parents, siblings and spouse16—these roles have been expanded upon by Ho15 to include wider considerations that are more broadly applicable. Ho suggests that the key ties within the Relational Ring are those between ‘people who are emotionally or psychologically close to one another. Such definition can include biological and adopted families as well as other domestic and intimate relationships’.15 One may gain a very large number of personal, social and professional connections throughout one's lifetime, but it is the key ties that Ho outlines that are held to best sustain the Relational Ring in a manner in keeping with the patient's own concept of their personhood.15
Relational Personhood develops out of both Innate Personhood and Individual Personhood. Given the Relational Ring's connection to both the Innate Ring and Individual Ring, the Relational Ring persists even when the Individual Ring is lost through loss of consciousness. Just as some believe that Innate Personhood is gained at the point of conception, Relational Personhood may be endowed at that point as well. This same dynamic holds true at the end of life—a person may be without their Individual Personhood due to loss of consciousness or impairment of consciousness, but their Innate Personhood remains unchanged and their Relational Personhood is now endowed and maintained by others.
Understanding which relationships comprise a patient's Relational Ring is important in cases where DCPS is applied because patients are unconscious, and thus how and who ‘endows them with personhood’ becomes significant. There must be a mutual relationship present, and as a result those relationships that will be considered significant in moulding the personhood endowed are those that have powers to intervene or have direct influence in the patient's affairs and personal welfare or share a personal relational link with the person that the patient themselves considered important.15
It is these more important, personal and durable relationships that provide the depth to the Relational Ring, the size of which is a function of the number of relationships the person has, and it is in the depth of the Relational Ring that those relationships that are expected to maintain the patient's personhood are represented.
The inter-relatedness of the concepts and the wider-than-simply-consciousness view of personhood suggest that, in reality, reliance on consciousness only or a patient's ability to ‘value their own existence’ is neither entirely representative of the realities of clinical care nor widely held. Indeed, authors such as Kitwood in his work on dementia has clearly shown that a wider concept of personhood is called for.16
Interaction between the rings
There is significant interaction between the rings, with all three rings influencing one another. To begin with, the Innate Ring is influenced by the Relational Ring, given that it is the family that imbue the child with the family values, spiritual beliefs and ethical codes that they practice and abide by. Conversely, maturing of the spiritual beliefs within the Innate Ring may influence the manner in which a person interacts with his or her family and will affect the friends that he or she makes, affecting the type of relationships that are formed and thus the Relational Ring.
The Innate Ring also impacts on the manner in which character traits, personality and thought processing occur, leaving an indelible mark on the Individual Ring. Evolution of thought processes coupled with life experiences and psychosocial and physical changes can in turn affect the direction in which beliefs and values develop and the strength with which they are held, which in turn affects the manner in which familial beliefs, values and links are maintained and also relationships within the Relational Ring.
With similar influences potentially emanating from the Relational Ring upon the Innate and Individual Rings, the Ring Theory maybe visualised as three Borromean Rings or simply as three porous discs (figure 3) which allow intimate interactions. However, for ease of conceptualisation, the two-dimensional model will continue to be used.
Reviewing the DCPS situation
Administration of DCPS does not end a patient's personhood, but does serve to highlight yet another feature of the Ring Theory of Personhood: the changing size of the rings. Often, even before DCPS is administered or considered as a course of treatment, a patient's Individual Ring of personhood may be impaired or even lost as a result of the effects of their intractable suffering or as a result of concomitant treatments such as lighter and or intermittent sedation. The effects are highlighted by diagrams B and C in figure 4.
The progressive loss of the Individual Ring and the diminishment of the Relational Ring.
For those who retain an ability to value their own existence, the application of DCPS will render the Individual Ring lost. In these cases, the patient's Innate Ring is unchanged, and the Relational Ring changes to adapt to the patient's situation (diagram C in figure 4). Within the Relational Ring, those relationships that are strong and enduring remain, sustaining the ring, while lesser relationships slowly disperse, decreasing the size of the Relational Ring (diagrams B and C in figure 4). Yet, as long as strong and important relational links persist, the Relational Ring remains, and it, along with the Innate Ring, means personhood remains.
The question that follows is: what are the implications of loss of the individual element of personhood for the manner in which personhood is viewed? The presence of the Innate Ring ensures that a basic level of respect and care is reserved for any person. A patient's Individual Ring, although lost, would have influenced the Relational Ring and imprinted its mark on how the various ties, which constitute the Relational Ring, view the unconscious patient, particularly those close and important to the patient. The effects of the Relational Ring on the Innate Ring, particularly familial links, are also important and play a part in maintaining a sense of individuality. This highlights the rationale for limiting decisions about a patient's care only to those with whom the patient had a close, personal relationship.
It is these persons within the Relational Ring who will ensure that the personhood of the patient is maintained and preserved in a manner that is as close to how the patient would want it to be as possible. Deciding on who ought to participate in this process is critical, and it must be reviewed holistically on a case-by-case basis within the confines of each individual case setting, given that it is here that some of the tensions between the rings arise.
Tensions between the rings
Tensions between the various rings are particularly apparent in the Relational Ring, particularly when the expectations of the family and those of the patient are not in ‘sync’. Resolution of these potentially diametrically opposing positions can be difficult, especially when some patients adhere to a dualist belief of personhood such as that espoused by the two-dimensional concept of Confucian personhood, where the family are seen as a part of the patient's personhood.7 Within this ethical framework, the patient's personhood is seen as a combination of an autonomous self and an inter-related self defined by his or her familial ties and familial identity.7 Respecting the wishes of the atomistic self over the familial self is difficult, particularly in end-of-life decision making.17–19 In Singapore, where such beliefs are common and where family-centric decision making is widely practiced, partly as a result of this practice, it is the wishes of the family that trump the previously stated wishes of an incapacitated patient.17–19 There is little in the way of ensuring that the rights and personal identity of the ill and incapacitated individual are preserved when their personhood is endowed by others.17 ,18
Yet such occurrences may not be surprising given the evolving nature of concepts of personhood. To be clear, the Ring Theory suggests that patients see themselves as maintaining their own personhood and only dependent on endowment by those close and important to them when incapacitated. While this may be true, there is also the consideration that many family members are not privy to the thoughts and wishes of the patient, particularly in some Asian settings where talk of death is taboo.20 ,21 In addition, it is also suggested that personhood is context-sensitive, influenced by the patient's psychosocial, spiritual and physical situation, making it a ‘fluid’ concept that would be difficult for any family member or friend to sustain or keep abreast of.
The Ring Theory suggests that this ‘fluidity’ or flexibility of concepts of personhood is an attempt to preserve a person's own idea of individual self for as long as possible in the midst of difficult circumstances. This is evidenced by efforts by patients to control how they are respected and seen through dependence on those with important and intimate knowledge of their wishes, views and beliefs to approximate and maintain their personhood in a manner that would be akin to their own concepts of personhood. However, there is little to determine who among those close and important to the patient should be tasked to do so, much less arbitrate when there are conflicting views.
Similarly, there is concern that a patient may have views and beliefs attributed to them that they do not in fact subscribe to. It would seem that, even if the patient does not believe in one or more rings, they are still subject to being awarded properties that they do not have. While it may be argued that they are still beneficiaries of societal and legal expectations of a basic level of respect and consideration for all patients, it still stands contrary to efforts of the individual to maintain a unique sense of self only to have ideals thrust upon them based entirely on their race, religion, culture and or community, emphasising the pivotal role of appropriate multiprofessional multidimensional case-specific reviews.
Conclusion
Matersvedt and Bosshard4 reject claims that DCPS reduces “the patient into a ‘living dead’” and provide a number of reasons to continue to view such a patient as a persons rather than ‘an individual distinct from a person’.
Other than observations from clinical training and the views and practices of healthcare workers caring for these patients, Matersvedt and Bosshard rely on an adaptation of Harris’ Potentiality Theory to suggest that these patients still have the ‘capacity’ for personhood based on the ‘reversibility’ of DCPS.4
The Ring Theory reveals a much richer and wider meaning to the concept of personhood than that used by Matersvedt and Bosshard, which circumvents the need to rely on the tenuous suggestion of the reversibility of DCPS, particularly when to do so would be to re-ignite awareness of suffering, which by definition cannot be ameliorated by any treatment save DCPS and run against the basic goals of palliative care, which is the amelioration of suffering. This ethically sensitive, clinically relevant, culturally appropriate concept of personhood instead sees personhood in a wider, flexible, more patient-centred manner than prevailing concepts of personhood and better reflects the nuanced views of patients themselves as they attempt to preserve their personhood in increasingly difficult circumstances.
“I am more than myself but always me”—as my dying father reminded me—may be a good response to Cartesian constructs and Confucian-inspired ideals, and a timely remembrance that ‘as we aspire to be more than what we are, we attempt to preserve all that we are’ in a complete and true manner. Appropriately understanding this underpins the value of the Ring Theory.
References
Footnotes
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Competing interests None.
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Provenance and peer review Not commissioned; externally peer reviewed.