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Personhood

Other ethical principles

The way that people understand and relate to each other contributes towards the acknowledgement or development and maintenance of personhood. Nevertheless, being an actual person in the first place is important and determining what or who is a person involves setting boundaries (Baldwin and Capstick, 2007). Where someone falls in relation to those boundaries will determine whether s/he is considered a person or a “non-person”. For some theorists, particularly ethicists, this means possessing certain capacities. Others would argue that personhood more or less equates with simply being a human being, whereas the role of interaction with others has also been highlighted, as has the importance of the physical body. The following approaches to personhood will be considered in this section, and a few examples provided of research into perceptions of personhood:

  1. inherent/transcendental personhood
  2. capacity-based approach to personhood
  3. interpersonal theories of personhood
  4. the body
  5. empirical research into perceptions of personhood

1. Inherent/transcendental personhood

Being human has been equated with being a person in the sense that being-in-itself is the only criteria. Kitwood (1997) claimed that personhood was sacred and unique and that every person had an ethical status and should be treated with deep respect. (He also later emphasised the relational aspect of personhood but this is not necessarily contradictory.) In some religions and according to certain spiritual beliefs, people have a kind of unique inner essence which may even be believed to continue beyond human life (e.g. through reincarnation or an after-life). The belief in a kind “non-material soul that still exists intact underneath all the neurological losses of dementia” (Post, 2006, p.231) may provide solace to carers and help ensure that interaction with the person is maintained. However, a belief in the inherent personhood of people (including those with dementia) does not necessarily guarantee that they are treated humanely and with respect. Moreover, some people believe that a person’s essence or soul may be lost or no longer possible to reach, as reflected in statements made by carers in a recent small-scale qualitative study:

 “But you have to remember, that body is not who the person is. The person is gone”

“There’s no sense is asking her…. She’s not there…” (Dunham and Cannon, 2008, p. 49)

Not everyone has religious or spiritual beliefs and even those who do, within the same religion or philosophy of life, may differ greatly with regard to what they believe and the strength of that belief. However, the main issue is not to determine which religion has “got it right” or whether people really have an innate, unique essence or soul but rather to understand how some people define personhood and to recognise that this may be influenced by their spiritual or religious beliefs. It could even contribute towards fear of dementia in that their worst mental image of what dementia might resemble is applied to a human being. Some people might find it more reassuring to believe that the person is” no longer there”.

2. Capacity-based approach to personhood

For Kant (and others since, e.g. Cooley, 2007; Dan Brock, 1993), to qualify as a person, it was necessary to possess rationality (the ability to think and reason logically) and to be able to communicate this to other people. It is clear from this definition that many people with dementia who have difficulty with logical thought and reasoning and/or difficulty communicating this to others would not meet the selection criteria for personhood. Another example of a capacity-based approach is that of Warren (1973) who defined six criteria for personhood, namely consciousness, reasoning, self-motivating activity, capacity to communicate, presence of self-concept and self-awareness.

For yet others, the capacity to perceive oneself as existing over time is considered important (Buchanan, 1988; Kuhse, 1999; Parfit, 1984). Dan Brock (1993), for example, argues that people with severe dementia, whilst members of the human species are worse off than animals in some respects in that they have no capacity for integrated and goal-directed behaviour and that due to memory loss cannot forge links across time that establish a sense of personal identity across time. He concludes that they lack personhood (Baldwin and Capstick, 2007).

Some people have a feeling that a person with severe dementia is no longer a person or at least not the person they once were, even though they are still alive (Matthews, 2006). Parfit (1984) claimed that people can have current and former selves which are linked by varying degrees of psychological continuity, and that there may come a time when the psychological continuity between the two is so great that one should consider the person as no longer being the same person. Some go even further suggesting that there may come a time when a person no longer has any kind of continuity with people in general and that such people are in effect “non-persons” (Buchanan, 1988). Tooley (1983) further argues that the ability to see oneself as extending over time is a necessary condition for being a person and for having a right to life. Clearly, there is sometimes a tendency to erroneously associate the loss of cognitive abilities with the loss of the quality of being human (Blanchard, 2006).

However, even if other people need to be able to recognise personhood in an individual, this does not necessarily imply that the latter has to have the ability to communicate it (Grobstein, 1981). The hypercognitive definition of personhood – as Post (2006) calls it - fails to take into account the emotional and relational needs and capacities of people with dementia (Kitwood and Bredin, 1992; Post; 2006; Rudman, 1997 – in Post, 2006). It neglects the more social, expressive, imaginative and even unconscious dimensions of being human (Crisp, 1999), which nevertheless generally require some degree of reasoning and memory. Finally, it overlooks the importance of social interaction in that a person who lacks certain capacities may be considered a non-person with the result that meaningful interaction with that person may cease and this will contribute towards further loss of capacity.

3. Interpersonal theories of personhood

Despite certain religious and spiritual beliefs about people having a unique essence or soul, which might be understood as reflecting a concept of innate personhood, it is interesting to note that early Christianity differentiated between the terms “individual” and “person”, whereby the latter was understood as referring to the individual in relationship to others (Allen and Coleman, 2006). The following descriptions of personhood also reflect a relationship-based understanding of personhood:

  •  “who one is and who one can be are defined in the context of authentic relationships” (Malloy and Hadjistavropoulos, 2004, p.152)
  • “It is a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust” (Kitwood, 1997, p.8)
  • “rooted in relationships with others and therefore requires the presence of another human being” (Penrod et al., 2007, p.64)
  • “a dynamic concept, refined and articulated through constructs and subsequent social intercourse” (Jenkins and Price, 1996, p.88)
  • a status accorded to one human being by another (Moody, 2003)

If personhood is constructed and maintained in a social environment, people with dementia may find themselves in a vulnerable position due to their progressive difficulty engaging socially and effectively with others. This may lead to their gradual withdrawal from social contact with the result that other people may distance themselves from them, thereby resulting in isolation, social exclusion, increased vulnerability and possibly, further deterioration of their condition.

Kitwood not only provided a model of dementia which highlights the interaction between neurological impairment, the psychology of the person with dementia and the social environment, but also strongly advocated for the respect of the personhood of the person with dementia. He explained that people with dementia are not simply biological entities or the bearers of the condition but people who are at risk of losing their personhood. His concept of personhood was influenced to some extent by the work of the German philosopher Martin Buber (1878-1965).

Buber (1970) identified two different ways that people relate to one another, which may be of relevance to the maintenance of personhood in people with dementia. These two ways are described through the word pairs “I-It” and “I-Thou” (later translated to I-You”). The I-It mode of relating is one in which a person relates to the other in a cool, distanced, non-involved way which fails to fully acknowledge the individuality of the other as the other is objectified. The I-Thou mode of relating, in contrast, involves meeting the other person in a genuine human exchange. With reference to the I-Thou relationship, Barich (1998) states, “You become a person (as opposed to an alienated and isolated individual) when you enter into relation with people.” If people with dementia are objectified through an I-It mode of relating, their link to the outside world is threatened and perhaps damaged, especially when they themselves have lost the capacity to install and actively encourage an I-Thou form of relating. Buber’s concept was linked to religion in that it was intended to describe how humans can enter into a relationship with God through their relationships with others but this should not lessen its relevance to the debate about personhood.

A common feature of all human interaction is turn-taking/turn-making. This occurs even before infants have acquired language through “protoconversations” between caregiver and infant whereby the caregiver is attuned to and responds to the gestures and bodily rhythms of the infant in a process of mirroring, echoing and resonating (Stacey, 2003, p137). Caregivers often act as if the infant’s sounds and gestures were purposeful and meaningful, and take a key role in supporting and maintaining the interaction. This lays the foundations for purposeful interaction on the part of the infant and the development of a sense of self. The actions and attitudes of the caregivers towards the infant reflect a belief in the personhood of the infant. In this way, the adults relate to the infant not in the I-it form (i.e. as if the infant were an object) but in the I-Thou form. The caregivers are in a position of power as they could ignore the infant’s actions and take the stance that s/he is not capable of interaction. This may happen in some cases, but eventually the child will develop language and start interacting with the outside world and his/her personhood will be acknowledged and confirmed through interaction.

In the case of dementia, the same degree of understanding and tolerance is less common. Unlike the infant who is considered to be in the process of developing the capacity for meaningful communication with the support of adults, people with dementia are often considered as having had this capacity and lost it (which may reflect a capacity-based approach to personhood). Nevertheless, they also need additional support from others at some point in time to maintain contact and share meaningful interaction (in the I-Thou mode of relating) so as to benefit from social inclusion and maintain their sense of personhood. People with advanced dementia may have difficulty communicating in ways that other people are willing to accept as meaningful. If other people do not consider their utterances and behaviour as valid forms of interaction and are not motivated to take on a more supportive role in the interaction, then turn-taking breaks down and people with dementia gradually becomes objects to which personhood is no longer accorded. Grobstein (1981) claims that the central criterion of personhood is that it can be recognised by others. If so, people who have difficulty communicating their personhood (e.g. newborn infants, people in the last stage of dementia and people who are unconscious) are dependent on others to recognise it.

The concept of personhood has also been linked to the different selves that a person may have. Sabat (2001) described three different selves: 1. the self of personal identity (expressed through sentences using “I” such as “I feel, I think etc,); 2. the self comprised of the attributes a person possesses and 3. the self consisting of the social self or personae presented to others (e.g. through social roles). People who have dementia gradually lose the ability to maintain their social roles without necessarily having the opportunity or capacity to take on alternative, valued social roles, particularly as doing so depends on mutual recognition and cooperation, and more fundamentally, recognition of their personhood. (note: insert something here about studies indicating that people losing social roles does not necessarily imply loss of all notion of self)

Kitwood argued that there were two aspects to the person (i.e. the adapted self and the experiential self). The adapted self and the experiential self represent two different ways of being. The former is described as “highly and tightly socialised, particularly in relation to the performing of given roles” (Kitwood, 1997, p. 15). The latter arises out of simply being with people within a context of equality and mutual respect and attention. The experiential self may persist throughout life until death provided that the right conditions are provided. According to Kitwood, the I-Thou form of relating described by Buber, provides the ideal framework for preserving and enhancing this aspect of personhood.

Perceptions of personhood may differ according to the stage of life. According to Kitwood and Bredin (1992, p.275), “In an ethical sense, personhood is attributed even to the newborn infant. In an empirical sense, personhood emerges in a social context.” Myser (2007) contrasts the terra incognita of the infant (a kind of developing personhood, imagined and projected by carers), with  terra cognita of the adult (full personhood co-constructed with other members of society) and finally of “fading personhood” (in constant need of being re-constructed and restored with the assistance of carers and society).

The following extract highlights the relational aspect of personhood and the perceived duty for people who come into contact with a person with dementia to look for the person and not just at the dementia:

“Being a “person” is the fundamental philosophical and sociological position of a human being, with value, intelligence, a history and a present. The challenge in dementia is to continue to seek for and not to dismiss that person.” (Lawrence, 2007, p.555)

  4. The body

Descartes described a split between mind and body, whereby the substance of each was separate and distinct. Whereas the body was considered as having a material form, the mind was deemed unlocatable. According to the situated- embodied-agent view (Hughes, 2001 – in Moody, 2003), personhood is maintained or bestowed on a particular person whose human existence is linked to a physical body in a particular familial, cultural and historical context. Based on Heidegger’s notion of Dasein (being-there), Merleau-Ponty (2002) developed a concept which is now often referred to as the body-subject implying that every human has a body (being a physical creature) and is capable of thought, reflection and communication. These two parts are not separate as in Descartes body/mind dualism but rather a unified form which experiences the world and expresses itself in a bodily form. When a person sees, s/he is dependent on the eyes but there is an “I” behind the eye. As dementia progresses the person can no longer rely on the unified form. Consciousness is expressed through bodily activity but the body, as a vehicle for expression, is breaking down. This does not mean that there is no consciousness.

At a more psychological than philosophical level, Jenkins and Price (1996) draw attention to the way that people tend to make analogies between their bodies and elements or aspects of everyday life (e.g. viewing their body as a home, servant or vehicle). When the body starts to let the person down and the unified form fails to function, the body might start to be seen as a traitor, an enemy or a prison. The way that a person perceives the body of someone with dementia (e.g. an empty shell, prison etc.) might affect the way they relate to them. Such analogies may conjure up powerful images which may in turn influence and even serve to justify certain negative modes of relating which are detrimental to the recognition and maintenance of personhood.

5. Empirical research into perceptions of personhood

Kitwood challenged the capacity-based view of personhood drawing attention to evidence from case studies provided by Mills and Coleman (1994, p.213 – in Downs, 1997) which suggests that people with dementia retain a personal awareness of their individual uniqueness of being until death. He also highlighted the work of Sabat and Harré (1992) based on interviews and observation of 3 people. They concluded that it is the social and public self that is lost in severe dementia but not the private sense of self (Downs, 1997). These studies were extremely small scale but perhaps suggest that the way that people define or understand personhood may affect whether or not they find it. For example, a person might walk through a field of dandelions and claim that they saw no flowers as they consider dandelions as weeds.

Personhood is an elusive thing which cannot be easily measured. However, it is possible to investigate people’s beliefs about it. Myser (2007) carried out ethnographic research with 250 healthcare professionals and carers between 1988 and 1990 in Sweden, India and the United States of America in a variety of settings. One of her aims was to examine the ethical concept of personhood as perceived by healthcare professionals and lay people. She identified seven key themes:

  1.  Emphasis on abilities and potential more or less unique to human beings (e.g. logical thought and reasoning) and importance of people being able to communicate these abilities in such a way that other people can recognise them.
  2. Ability to relate to other people (involving self-awareness and ability to communicate capacities)
  3. Aesthetic aspect of personhood (example given: ....”if a patient looked like a distorted frog or monster, the patient might not evoke feelings of sympathy or empathy and therefore might not be recognized as having moral status or personhood....” p. 56)
  4. Possession of additional capacities/human qualities (including intellectual, emotional, relational and moral capacities). A superior intellect in the absence of “human qualities” would not be considered as reflecting personhood. [I wonder if they had in mind the possibility of aliens]
  5. “Speciesism” grounded in the “instinct” to identify with and value people in our own group (which might include severely handicapped people if part of “our own particular group”).
  6. Status cues and the extent that a person is perceived as being wanted by others.
  7. The concept of a continuum whereby personhood evolves over time through contact with the person concerned and through the development of empathy and the creation of relationships.

The above themes represent how personhood is perceived by those who were interviewed and is not an argument for viewing personhood in that particular way. However, it reveals the way that personhood is seen as something that arises out of social interaction. Each of the themes is linked in some way to interaction between people, or at least to how people understand each other. This combined philosophical and psychological understanding of personhood combines both ethical and psychosocial elements.

References

Allen, F. B. & Coleman, P. G. (2006) Spiritual perspectives on the person with dementia: identity and personhood. InDementia: Mind, Meaning, and the Person(Eds J. C. Hughes, S. J. Louw & S. R. Sabat), pp. 205–221. Oxford University Press.

Baldwin, C., & Capstick, A. (2007).Tom Kitwood on dementia: a reader and critical commentary. Open University Press.

Blanchard, F. (2006), We have to fight against the idea that Alzheimer’s disease is death of the spirit. InLes Cahiers de la Fondation Médéric Alzheimer, Supporting and caring for people with dementia throughout end of life, Number 2, June 2006

Brock (1993) – cannot find this one. Please see: Buchanan, A.E. and Brock, D. W. (1990),Deciding for others: the ethics of surrogate decision making, Cambridge University Press

Buber, M. (1970).I and Thou. New York: Touchstone.

Buchanan, A. (1988). Advance directives and the personal identity problem.Philosophy and Public Affairs, 17 , pp. 277-302.

Cooley, D. R. (2007). A Kantian moral duty for the soon-to-be demented to commit suicide.The American Journal of Bioethics; 7, 6 , pp. 37-44.

Crisp, J. (1999). Towards a partnership in maintaining personhood. In T. Adams, & C. L. Clarke,Dementia care: developing partnerships in practice(pp. 95-119). Bailliere Tindall.

Downs, M. (1997). Progress report: the emergence of the person in dementia research. Ageing and Society; 17 , pp. 597-607.

Dunham, C. C., & Cannon, J. H. (2008). "They're still in control enough to be in control": Paradox of power in dementia caregiving.Journal of Aging Studies, 22 , pp. 45-53.

Grobstein, L. (1981).From Chance to Purpose. London: Addison Wesley.

Jenkins, D., & Price, B. (1996). Dementia and personhood: a focus for care? Journal of Advanced Nursing; 24 (1) , pp. 84-90.

Kitwood, T. (1997).Dementia reconsidered: the person comes first. Open University Press.

Kitwood, T., & Bredin, K. (1992). Towards a theory of dementia care: personhood and well-being.Ageing and Society; 12 , pp. 269-287.

Lawrence, RM (2007), Dementia. A personal legacy beyond words,Mental Health, Religion & Culture, 19, 6, 553-562

Malloy, D.C. and Hadjistavropoulos, T.  (2004) The problem of pain management among persons with dementia, personhood and the ontology of relationships,Nursing Philosophy, 5 (2), pp.147 – 159.

Moody, J. (2003). Dementia and personhood: implications for advance directives.Nursing Older People; 15, 4 , pp. 18-21.

Myser, C. (2007). Person-al journeys: reflections on personhood and dementia based on ethnographic research and family experience.American Journal of Bioethics; 7 (6) , pp. 55-59.

Penrod, J., Yu, F., Kolanowski, A., Fick, D. M., Loeb, S. J., & Hupcey, J. E. (2007). Reframing person-centered nursing care for persons with dementia.Research and Theory for Nursing Practice: An International Journal; 21 (1) , pp. 57-72.

Post, S. G. (2006). Respectare: morale respect for the lives of the deeply forgetful. In J. C. Hughes, S. J. Louw, & S. R. Sabat,Dementia: mind, meaning and the person(pp. 223-234). Oxford University Press.

Sabat, S. R. (2001).The Experience of Alzheimer's Disease: Life Through a Tangled Veil. Oxford and Malden, MA: Blackwell.

Stacey, R. D. (2003).Complexity and group processes. A radically social understanding of individuals. Hove: Brunner-Routledge.

 

 

 

 

 
 

Last Updated: mercredi 16 janvier 2013

 

 
 

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