Introduction

Health care has a long tradition of medicalising illness (Illich 1975). Parsons (1951) wrote extensively on the ‘sick role’, which essentially placed the health professional as the expert in a position of power over the patient. The patient¹ was expected to hand over their body to the experts and unquestioningly be compliant with ‘orders’ given in order to regain health. Non-compliance was frowned upon and any patient so behaving was labelled as difficult. The doctor determined health care goals for the patient and they were related to curing disease. Care decisions were based on tradition and experience.

Nurses and other health professionals were also required to follow doctors’ orders. There was a distinct hierarchy with doctors at the pinnacle and the client at the bottom, and very clear boundaries determined who did what, who gave orders and who took them. The organisation of hospital and nursing home care reflected staff need and convenience — often to the extent that clients were dehumanised and deliberately stripped of identity (Goffman 1968). It was thought that objectified clients, and detached staff, facilitated good care in what could be otherwise distressing and embarrassing circumstances. Clients in hospital were typically referred to according to their disease and/or bed number (e.g., ‘the stroke in bed 20’) or the tasks health professionals did for them (e.g., ‘she’s a feed’, ‘he’s a shower’). The emphasis was on the client’s deficits and problems.

In these circumstances, older people were relegated to the back wards and side verandas where they might come to long for a visit from the old person’s friend: pneumonia. This was preferable to the production line of shivering, semi-naked bodies lined up awaiting a shower, the constant drug induced state of confusion, or the abject horror of being manacled.

Some may argue the health care system has not changed much; others will not believe it was ever this bad. Nevertheless, expectations, policies, and rhetoric now demand a very different approach to health care, and this chapter aims to outline current thinking on how health professionals should practice in partnerships with clients.

So what is person-centered care (PCC)?

There are many definitions of PCC and different terminology is used to describe what appears to be directed towards a similar outcome: such examples include demand-driven care; client-managed care; and relationship-centred care. Carl Rogers is probably ‘the father’ of PCC. He coined the term and developed the notion of client-centred counselling — and drew attention to the need for a rebalancing of the expert–client relationship to privilege the client and acknowledge their capacity for self-actualisation. Tom Kitwood adapted these ideas to the dementia care setting. The idea of consumer-directed care now has broad appeal. Essential to the definition of PCC we subscribe to is the need for a recognition of and connection with the person, a focus on the person’s strengths and goals, an interdisciplinary approach, and recognition of the centrality of relationships. One definition in a recent review was ‘treatment and care provided by Health Services [… and residential facilities …] that places the person at the centre of their own care, and considers the needs of the older person’s carers …’ (Victorian Department of Human Services 2003).

Edvardsson and colleagues (2008) performed a recent review of the literature on PCC of people with dementia. They described the defining characteristics of the concept of PCC as being:

It was also noted that much of the literature on PCC reports clinical experiences, personal opinions, and anecdotal evidence and that there were few theoretically and empirically rigorous studies. Thus, the review concluded that few valid, reliable, and clinically useful tools had been developed for the measurement of PCC. As a consequence, associations between PCC and health outcomes have been relatively unexplored and strategies for clinical delivery and implementation of PCC are still in development. Nevertheless, it does seem that the physical and social environments play important roles in supporting or undermining PCC.

Person-centred care: culture and environment

Care environments in which people live for a period of time are often spoken about in terms of ‘home’, even if these environments often feel, smell, sound, taste, and look like anything but a home. Recent articles describe that when entering into different care settings, people get a feel for the climate, the atmosphere, or ‘what’s in the walls’ of the place. This feeling is often accompanied by a judgment about the comfort of the place — whether or not this is a place where wellbeing can be experienced. This embodied experience emanates from sensory data such as smells, sights, sounds, taste and feel, and forms the influential first impression of new places, impressions that are of importance for whether or not the environment will be experienced as welcoming, hospitable, and person-centred. Environment, person, health and nursing (although the latter can be interpreted to apply to any health professional or care staff) are the four concepts making up the meta-paradigm of nursing, but the environment is possibly the least explored and understood (Fawcett 2005). However, attributes of the space and place have received increasing research attention, and Florence Nightingale is generally regarded as the first environmental theorist within nursing. She described that the locus of healing was within the person and the art of nursing was to provide an environment in which clients were in the best position for nature to act upon them (Nightingale 1969); that is, safe, calm and clean environments.

There is convincing evidence showing that enriching the environment with symbols that are homelike and familiar, and creating calm and safe places where interaction is supported, promote a safe climate and client wellbeing (Edvardsson et al 2005; McAllister & Silverman 1999; Moore 1999; Morgan & Stewart 1999; Rasmussen & Edvardsson 2007; Zingmark et al 2002). There are also studies indicating that creating a homelike environment can positively affect interaction and behaviour, and that enriching the environment with nature scenes, sounds and smells, and chairs, tables and pictures has been associated with positive effects on the behaviour and mood of clients (Day et al 2000; Edvardsson et al 2006).

The climate has been conceptualised as constituted by two interacting and interwoven dimensions: the physical environment, and people’s doing and being in the environment. The physical environment contains symbols conveying messages of caring and uncaring. It also influences interaction and experiences of involvement and privacy, welcoming, and the possibilities to create and maintain social contacts. Furthermore, the physical environment can facilitate a shift of focus from oneself to the environment — being able to escape the world of illness and to think of something outside oneself for a while. All these aspects need consideration when reflecting upon the impact of the climate on wellbeing. People’s doing and being in the environment is the other dimension of the climate, and the approach of staff and others in the environment will to a large extent influence whether or not experiences can emerge of welcoming, seeing and being seen, and of being safe and in a calm place.

Arguably, the care of people with dementia consists of two parts: the ‘doing’ and the ‘being’ needed to satisfy basic human needs. ‘Doing’ consists of care tasks that need to be performed, for example, showering, toileting and feeding, and ‘being’ consists of the relationship (or lack thereof) that is formed between the staff member and the person with dementia. The ‘being’ dimension of care can be understood as the quality marker of the tasks performed; that is, the way the care tasks are carried out. As an example, a staff member can provide a shower to a frail older lady in a careful and loving way, making her feel like a queen, or in a stressful and neglecting style, making her feel like an object. In the first example, the lady’s experience of the situation is in focus, and in the latter example the focus is merely on completing the task. These examples are given to illuminate that the subtle qualities of the approach to staff ‘being’ when carrying out the care tasks are of utmost importance for whether care is experienced as person-centred or task-oriented. The physical environment and the doing and being of people therein interact and form together the climate of a care setting — a climate that can support or obstruct experiences of being a person even if one is frail, confused, and dependent upon others (Edvardsson 2005; Rasmussen & Edvardsson 2007; Sandman et al 2006).

Practicalities of ‘getting PCC into practice’

We have a strong sense then that PCC involves how we ‘are’ and the climate we create. Believing this and enacting it in the real world are very different! This section reports outcomes and learning from two intervention trials (Berg et al 1994; Bird et al 2006; Edberg et al 1996, 1999). One of the trials was an influential pilot trial in Lund, Sweden, and the other a larger Australian replication with two comparable conditions². Both the Swedish and Australian trials attempted to directly address factors that prevent staff in residential dementia facilities from providing PCC and, simultaneously, create an environment where they are assisted to do so. They illustrate the complex dynamic that leads to task-oriented care, and the consequent need for sophisticated and systematic interventions to move towards PCC. The Australian trial also illustrates the difficulties of providing PCC given the real constraints of stretched resources.

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