Introduction

The core value of personhood

For some philosophers (e.g. Frankfurt 1989) it is not enough to claim that human beings are persons on the basis of a collection of physical and psychological attributes because it is conceptually possible that members of another species could lay claim to personhood. If attributes such as sight, taste, smell, sexuality, memory, desires, motives and so forth were to be used as a means of distinguishing persons from non-persons, then we could easily provide a list of members of other species who would possess similar attributes. This argument was particularly highlighted in the debate about ‘Tommy the Chimp’ and the battle to have him recognised as a person. His owner in New York State has held Tommy in captivity for many years. A lawsuit submitted by a group called the ‘Nonhuman Rights Project (NhRP)’ seeks to have Tommy recognised as a person under law. The lawsuit does not argue that chimpanzees are human, but that they are entitled to the rights of ‘personhood’. It cites research by great ape experts that has established they are ‘autonomous, self-determined, self-aware, highly intelligent, emotionally complex’ (http://www.bbc.co.uk/news/magazine-29542829). Tommy’s case highlights the complexity of the idea of personhood, and whilst it may be an interesting case in terms of animal rights and the protection of the rights of animals (a worthwhile and important endeavour in itself), it also has implications for persons of the human kind! This collection of attributes of great apes is also found in humans and so if we wish to argue that there is a higher order of person, then we cannot rely on such attributes as these alone.

Further, if we argue that personhood is predicated merely on a set of physical and psychological attributes, then what happens to persons who may lose some of these attributes through disease and disability? For example, a person with dementia may experience deterioration of memory and motivation and loss of physical attributes (e.g. mobility, hand-eye coordination, etc.) and so could legitimately, on the basis of this argument, lose the status of person. Indeed even such higher order attributes as ‘thought’ and decision-making fail to distinguish persons from other creatures. Human beings are not alone in having desires and preferences. Members of other species share these attributes with human beings and some species could even be seen to base action on deliberation and even prior thought – as is argued in the case of Tommy the Chimp. Think about how a lion living in the wild plans the killing of his prey, an experience one of us (Brendan) had the privilege of seeing whilst on safari in South Africa. The lion Brendan observed seemed to engage in deliberation, ‘thought’ and sophisticated decision-making into setting up the conditions to enable a successful kill to occur. When the kill had occurred, he then appeared to ‘manage’ the way other members of his pride joined in the meal and protected the food from other species. Similarly, if we believe that the possession of a language distinguishes us as persons, then of course studies of animal communication patterns would suggest that different animal species have their own unique language. The loss of language (e.g. arising from certain brain injuries) could also mean the loss of the status of person.

So therefore distinguishing persons from non-persons on the basis of a hierarchy of attributes is problematic. Some authors, such as Post (2006) argue that a dominant focus in Western cultures on some attributes being more important than others has led to a position whereby cognitive attributes of persons are given greatest importance. We see this played out in all kinds of ways in daily life, in that the ability to connect our thinking with our behaviours is essential for day-to-day functioning. Thus the loss of these attributes can have significant impact on human beings and their personhood as it can result in reduced ability to engage in daily activities of living, loss of employment, an inability to converse with others, a loss of connection with community, disconnection with friends and family, and increased loneliness and isolation.

So how should we think about personhood in ways that help us to not privilege cognition and rationality and in ways that avoid hierarchies of attributes? Whilst there is no single answer to this question, it is probably not the most helpful thing to focus on what personhood is not, or as something we only recognise when it is lost or taken away.

Connecting with an innate sense of ourselves as human beings with feelings, emotions, thoughts and desires is an essential component of being a person and de facto having personhood. Leibing (2008) argues that personhood is that inner feeling we have that guides us as a person. It is the sum total of all these feelings, desires, motivations and values – or what Leibing refers to as ‘that which really matters’ (Leibing 2008, p. 180). This idea of personhood equating with that which really matters to us as persons, potentially enables us to rise above discussions of hierarchies and attribution and indeed arguments about the existence of ‘the soul’ (which many faith-based beliefs would equate with personhood). Instead it enables a connection with our unique humanness as persons – those inner perspectives that we hold in our body and that influence our being in the world. Leibing uses the term ‘interiority’ to describe this:

The materialization of certain values in time—and the moral question of what matters to certain people

Leibing (2008, p. 180)

What matters to us is possibly the closest we can get to having a neutral understanding of personhood and one that is connected with innate human characteristics. However, Leibing argues that in diseases such as Alzheimer’s, this interiority of persons becomes flattened because of the medicalisation of persons and a dominant biomedical focus on disease processes. This argument is consistent with Sabat’s (2002) view that personhood is connected with different understandings of ‘the self’. Rejecting the idea of the ‘loss of self’ that is dominant in dementia discourse and that implies not just a flattening of personhood but its loss, with the consequence of being labelled as a ‘non-person’, Sabat (2002, p. 27) argues that we have three forms of self – Self 1, Self 2 and Self 3. Self 1 is ‘the self of personal identity’ evidenced through our use of personal pronouns: ‘I’, ‘me’, ‘mine’, ‘myself’, ‘ours’ (meaning mine and yours). This self relates to our individual and unique view of the world. It expresses how we relate to our being in the world and the words we use to describe this being. It is autobiographical in nature and forms the narrative of our lives. Through Self 1 we show how we take responsibility for ourselves and our being in the world. Sabat argues that a loss of words and language (such as happens with people living with dementia) does not mean a loss of self, and indeed this Self 1 remains intact. Self 2 comprises our physical and mental attributes – eye colour, height, weight, beliefs, religion, achievements, hobbies and so forth are all examples of Self 2, and again these remain relatively intact with the threat of disease and illness. Self 3 comprises the different social personas that we construct in different situations in which we live our lives. In different situations and contexts a person may display very different behaviours – a highly dedicated and professional nurse by day and a hard party-goer by night; a focused, targeted and ‘hard-nosed’ manager versus a loving, sensitive and intimate partner. Sabat argues that Self 3 is most vulnerable when threatened by disease and illness such as dementia, as it is dependent on a connection with at least one other person in our social world. Whilst this threat is obvious in a person living with dementia, we can also see the potential for loss of Self 3 in all kinds of illness situations where the autobiographical self is not paid attention to; that is, we are concerned with treatment and cure and not with the social construction of that illness and how it threatens our personhood – something that is core to the argument made for a recovery approach in mental health, by Borg and Karlsson in this book (see Chapter 16).

Of course these constructions of self can also be challenged and debated as there are a variety of ways in which Self 1–3 can change and or be altered. However, Sabat’s ideas demonstrate how interiority (Leibing 2008) is an important basis for our external behaviours. Paying attention to Self 1 and 2 is therefore critical for the protection of personhood in situations where a person is vulnerable and in need of care. Sabat’s expression of self resonates with Merleau-Ponty’s (1989) argument about the primacy of a ‘perceiving body’ in the world. Merleau-Ponty argues against any idea of a mind-body split or that we are passive recipients of our history. Instead he suggests that our knowing is always subjective as we carry through the movement in our bodies, our pre-histories that we take up, inherit and transform through our being in the world. Therefore, Self 1 is ever-present, even in the absence of rational thought.

This ‘interiority’ positioning of persons and the different manifestations of ‘self’ contribute to the ways in which person-centredness is understood.

Person-centredness

Person-centred practice

In contemporary health and social care, there is a tendency to talk about ‘person-centred practice’ as if it is universally understood and practised. Person-centred practice is regularly espoused in health strategy (as we highlighted in Chapter 1) and increasing numbers of countries have programmes in place for the development of person-centred services and practices. It is not unusual for ‘innovations’ in person-centredness to equate to an array of ‘quick-fixes’ that are more to do with ensuring consistency of decision-making, maximising efficiency and effectiveness, and ensuring individual choice than a genuine connection with personhood as a basis for health and social care practice. Person-centred practice without a focus on personhood fails to connect with the core humanity of persons and is just another quality improvement activity. Therefore we define person-centred practice as:

…an approach to practice established through the formation and fostering of healthful relationships between all care providers, service users and others significant to them in their lives. It is underpinned by values of respect for persons, individual right to self-determination, mutual respect and understanding. It is enabled by cultures of empowerment that foster continuous approaches to practice development.

The central building block of this definition is respect for personhood manifested through mutual respect, self-determination and understanding. So much of health-care practice requires a connection with the body and so respect for the body during practice is a showing of respect for personhood. Merleau-Ponty (Dillon 1988) argues that the person ‘is the body’ and that we exist through bodily engagement with the world. Thus, the body is ‘our expression in the world, the visible form of our intentions’ (Baldwin 2004, p. 36). Mental and physical properties are inseparable, each intertwined with the other creating a seamless whole (Edwards 2001). Thus our existence is constituted by our ‘being in the world’, by the relationship between ‘our body and the world, between ourselves and our body’. Edwards (2001) argues that thinking about persons from the perspective of ‘body’ enables us to think about illness and disability in different ways and in the case of (for example) people with severe physical or mental disabilities, makes a significant contribution to understanding how the personhood of such a person can be retained, by paying attention to bodily responses in the absences of rational reflective abilities.

Drawing on Merleau-Ponty’s ideas, Dewing (2007) demonstrates that there are four fundamental life-world themes (or existentials) that constitute lived experience. These existentials provide helpful ‘discovery guides’ for reflecting on personhood and lived experiences. The four existentials are: lived body (corporeality), lived human relation (relationality), lived space (spatiality) and lived time (temporality). By implication of Merleau-Ponty’s idea of them being existentials, they cannot be separated from each other and each existential is embedded and interwoven with the other. Fundamental to Merleau-Ponty’s theses is that the person is the body, which is the embodiment of mind and body as one. This is the opposite of the Cartesian worldview where mind and body are separate and mind takes precedence over the body. Merleau-Ponty (1989, p. 12) summarises this as: ‘our relation to the world is not that of a thinker to an object of thought’. Further, the body inhabits space and because of this it is also within time. For Merleau-Ponty space is not an abstract entity that merely maps itself onto the body. Instead the body actively occupies space through perception, intentional movement and activity (1962, p. 136). Space does not exist outside the body as space is experienced from within the body. Neither does the mind map itself onto the body. Consequently the body is not moved by the mind. Further, bodily movement can be best or only fully understood at a preconscious level because it is the body not the mind that is in space and time. Thus, in the explication of this theory, the lived body (with flesh and depth) and existential space and time must be constantly accounted for. Not to take account of spatiality, temporality, or the various dimensions of perception would be inadequate and would decontextualise and dehumanise lived experience.

Merleau-Ponty’s ideas on embodiment, especially in the context of people with impaired cognition, offer a radically different and even hopeful construction of the body as an agent that is trying to act appropriately based on perception, even where the brain and/or mind may be said not to be cognitively intact. In the context of person-centred practice, body-work that in a nursing context focuses on engaging in what are referred to as ‘the fundamentals of care’ becomes the route through which nurses connect with the personhood of the person in receipt of care and to understanding individual care needs. Reflecting the importance of this body-work, recent developments in nursing performance indicators argue for this work to be seen as the core of what we consider important in nursing and what we ‘measure’ in terms of nursing effectiveness (McCance et al. 2011; Maben et al. 2012). Previously, McCance (2003) argued that it is through the delivery of physical care that nurses connect with persons, and these activities are not merely tasks but are instead the window through which connectedness begins with the other person. Martinsen (2006) suggests that this connection with another person means that we take away something of the person when we have connected with them in a meaningful way: ‘we all have something of each other’s lives in the palms of our hands’ (p. 71). Martinsen’s view places responsibility on individual practitioners to treat each encounter with another person as unique, an encounter that can transform an individual’s being in the world through authentic connections. Being authentic requires us to consider such factors as the meaning of individual relationships, emotional engagement, knowledge and decision-making capacity in determining our ‘being in the world’. A person’s authenticity is composed of ‘signs’ (Heidegger 1927/1990, p. 108):

Among signs there are symptoms, warning signals, signs of things that have happened already, signs by which things are recognized; these have different ways of indicating, regardless of what may be serving as such a sign.

‘Signs’ represent our lives, that is, beliefs, values and life experiences. We can treat these either as detached things that have little significance, or we can view them as being central to our lives. It is not enough just to take note of another’s beliefs, values, views and experiences. They must be integrated into the being in the world for that individual. Being conscious of another’s beliefs and values does not provide a prescription for action, but instead provides guidance towards the most appropriate approach for action based on the individual’s life experience. In recognition of this interconnectedness, the individuality of all parties is made explicit in the relationship. Such an approach requires commitment on the part of persons to want to engage in such a relationship and to accept it.

Taking note of ‘signs’ enables a person to place actions in context, or as MacIntyre (1992, p. 210) suggests, ‘the act of utterance becomes intelligible by finding its place in a narrative’. In other words, for an individual’s values to have meaning they need to be placed in the context of their lives, as we only become aware of our values when they are challenged either positively or negatively (Heidegger 1927/1990, p. 112). Without clarifying the meaning of a value in its original context, then it may be difficult to move it from something that is available to us, to something that guides action. If a value cannot be clarified, that doesn’t mean it doesn’t exist but other values may be needed to access it. For example, even if a person values the right to determine decisions for him/herself, it may not be possible for another person to understand the importance of that value to him/her until other values have been clarified, such as those the person holds about (for example) the importance of fairness and justice in society.

From the perspective of caring, taking note of ‘signs’ enables the facilitation of decision-making from the patient’s perspective, that is, facilitating their authenticity. Heidegger argues that when the maintenance of another’s authenticity is not a priority in caring practices then there is a danger of stepping into the place of the other and solving the problems or meeting the needs on behalf of the other. Heidegger calls such practice ‘defective solicitude’, for one becomes dominant and the other is made dependent, thus reducing the other to a thing. In a ‘freedom-gaining’ relationship (Barker 1991), one looks ahead with the other to help him or her understand what lies ahead and to develop appropriate coping mechanisms. There are times when such a partnership may not be possible and one may have to ‘leap ahead’ of the other in order to facilitate the other’s authenticity. The goal remains that of helping the other recognise what he/she needs for him or herself and to develop a mechanism for the other to cope successfully on their own. One steps back to enable the other to deploy his or her strategies, but steps forward to support in times of weakness, leaving the other free to determine his or her own fate (Barker 1991, p. 191; Heidegger 1927/1990, p. 159). This concept of authenticity concurs with philosophies of ‘personhood’ within a nurse-patient relationship that requires involvement, risk taking, stepping back to create space and stepping forwards in times of vulnerability.

Viewing person-centred practice from the perspective of authenticity starts from the position that everyone has ‘inborn potential’, but that individuals learn how to exercise that potential through socialisation. All adults have the same inborn potential but that potential is fully realised or not through processes of socialisation. Various internal and external constraints may be in place that prevent an individual’s full potential from being realised, and thus people may need assistance in determining the most appropriate course of action. This approach demands that the practitioner’s role should focus on facilitating an individual’s authenticity, so that their full potential can be realised and their capacity to exercise autonomous action maximised through the erosion of constraining factors.

Essential principles for person-centred practice

The person-centred practice literature is replete with advice, tools and processes that are essential for the adoption of person-centredness in practice, and we have referred to some of these in Chapter 1. Each of these offers particular approaches to engaging with health and social care activities in a person-centred way. However, it is our contention that person-centredness is best operationalised at the level of ‘principle’, because how it operates is highly dependent on the implementation context, and no single tool, process or method is going to fit every context!

It is also evident in the literature that ‘practice patterns’ influence the way that person-centredness is experienced by staff and service users. Some patterns are overt, such as those explicitly articulated in care pathways. Others are more implicit to established ways of being of individual practitioners, and it is these implicit patterns that differentiate espoused standards of practice and that are experienced by patients and service users. A lot of the work of practice development is what we would call ‘unearthing the architecture of practice patterns’, and in Chapter 10, Jan Dewing and Brendan McCormack illustrate how different patterns create different energies that can either enhance or inhibit innovation. Emancipatory practice development has as its core purpose the development of person-centred cultures through narrowing the gap between espoused values and those practised (see Chapter 9). Closing that gap requires an analysis of practice context in order to determine characteristics of the setting that help or hinder the development of a person-centred culture. Over many years of engagement in emancipatory practice development, our evidence (e.g. Andvig & Biong 2014; Parlour et al. 2014) shows the need to understand how established patterns of practice are consistent or not with espoused person-centred values. Without systematically facilitated critical creative reflection on practice and the use of multiple sources of evidence that shine a light on the dark, unconscious and embodied established ways of knowing, being and doing, then no amount of tools or processes will create more person-centredness.

The architect, Christopher Alexander (1977) coined the phrase ‘patterns language’ – a method of describing good design practices within a field of expertise. Alexander described it as a language, because he believed that understanding these deeper patterns that are embedded in good design exposes the deeper wisdom of practice. This idea of deeper wisdom is important to the development of person-centredness, as it is often the case that many person-centred initiatives and projects overly focus on the use of tools that capture the artefacts (Schein 2004) of person-centredness, but which don’t articulate the expertise needed to connect with it at an authentic level. Alexander argued that it becomes a language because of the interconnected expressions that are used by members of the field of practice to describe the expertise embedded in the design. This is also evident in health-care practice where patterns are often not given a voice and their language is manifested through the embodied knowing of practitioners. Like all languages, it comprises vocabulary, syntax and grammar:

• Vocabulary: Named and described solutions to a problem in a field of interest. For example, in person-centredness, named solutions could include assessment tools and processes, decision-making tools, feedback mechanisms, actions to ensure safety (such as ‘red trays’ for people who need help with nutrition).
  
• Syntax: A description of how a particular solution fits in a larger, more complex system, thus linking individual solutions in particular contexts with larger more comprehensive systems. This linkage is important for person-centred practice because we have previously argued that patients largely experience ‘person-centred moments’ rather than ‘person-centred care’ (McCance et al. 2013). We argued that the existence of moments of person-centredness arose because of a lack of linkage between individual moments of care and the whole model of care experienced by patients and staff. Thinking about syntax requires organisations to explore individually effective practices and how they connect with other practices in order to create a person-centred system.
  
• Grammar: Describes how the solution solves a problem or produces a benefit. For example, an organisation committed to the continuous development of person-centredness would have a system in place to review the effectiveness of solutions used to solve particular problems and a methodology in place to help translate those solutions into everyday practices across an organisation/health-care system. Such system-wide solutions can be documented in a logical way so that they can be repeated time and time again.

In recognising the importance of patterns, Alexander identified 15 ‘properties of nature’ that through his research he considered to be essential in good design, that is, design that complemented and resonated with the natural environment whilst at the same time creating ‘mental jolts’ to make us think differently about design and what it is for. In the same way, we can never be complacent about person-centredness and its properties – what is an effective pattern one day can be an ineffective pattern the next, if not continuously reflected upon, adjusted and refined. In addition, as illustrated by The Health Foundation, person-centredness is not a fixed or static unidimensional concept, but instead is multifaceted, multidimensional and dynamic. In Figure 2.1 we depict Alexander’s (1977) ‘15 properties of nature’ and suggest that these properties exist like satellites rotating around an individual’s personhood, and the way in which they are languaged (particularly the interlinking of vocabulary and syntax) determines the extent to which person-centredness is realised. These properties are ever-present in the patterns of person-centredness that exist in health and social care systems (Box 2.1).

In Table 2.1 we set out each of these properties and suggest ways in which they are patterned in the context of person-centredness in an organisation. We hope that by working your way through this table, you can identify ways to address different patterns in your organisation and potential ways of changing or further developing these patterns in order to achieve a more person-centred culture.

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