Ethical Aspects of Individualised Care
5.2 Individualised Care and Other Autonomy-Oriented Models of Care
5.2 Individualised Care and Other Autonomy-Oriented Models of Care
A plethora of terms are used to refer to models of care that focus on responses to the needs of single care recipients, for example, personalised care [2], relationship- centred care [3], participant-centred care [4], consumer-directed care [5], person- centred care [6] and, the topic of this text, individualised care. Here we focus on two of the most common terms: person-centred care and individualised care. First, we engage with individualised care, the focus of this chapter and book.
It is not clear when the term ‘individualised care’ was first used, nor is it obvious how it can be distinguished from related models of care. It could be assumed that the shift in focus to individuals or persons was a reaction to care regimes which were institutionalised, routinised, depersonalised and oriented towards groups. It might be assumed also that the shift from depersonalised groups to focus on indi- viduals was driven by attention to the many care scandals on both sides of the Atlantic. Reports of institutional neglect, abuse and exploitation can be traced back to previous decades in both the United Kingdom [7] and the United States, for
example, the US Public Health Service Syphilis Study at Tuskegee [8]. It might also be suggested that legal and societal shifts to respect the moral status and rights of all people, regardless of their race/ethnicity, class, sex/gender, sexual orientation, dis- ability or of...geographic location, served to challenge and change discriminatory and exploitative beliefs to some extent.
In nursing, the evolution of the ‘nursing process’ which dates back to the 1950s signalled a challenge to non-individualised medical care as it focused on holistic assessment, planning, implementation and evaluation. It also, crucially, draws on the nurse’s reasoning and decision-making [9]. Alongside this is the rise of evi- dence-based practice in health care [10]. One of the editors of this volume co-wrote an article on the theme of individualised care and patient outcomes [11] and defined the phenomenon as ‘a type of nursing care delivery which takes into account patients’ personal characteristics and preferences promoting patient participation and decision-making in his or her care’. The authors go on to say that the ‘patient’s viewpoint’ is operationalized in two ways: first, in the way the nursing intervention is ‘tailored’ to the patient’s individual needs and, second, ‘how well the patient’s individuality is understood by the nursing staff’.
This is a good starting point for a discussion of individualised care in relation to nursing practice as it highlights a focus on the individual, the importance of getting to know the individual and of tailoring care interventions to his/her characteristics and preferences. The caveat of ‘taking into account’ suggests that there may be limits on individual choices, however, the overall ethical focus of this approach to care is on ‘respect for autonomy’. We will discuss autonomy later. We next turn to some discussion of a well-known model of care that is similar to individualised care.
Whilst the origins of ‘individualised care’ are unclear, the history of person- centred care has been documented. American humanistic psychologist, Carl Rogers, is credited with the first use of ‘person-centred’ in relation to psychotherapy in the 1960s. He had previously used the term ‘client-centred’ therapy. American psychia- trist, George Engel, initiated a shift from a medical model to a biopsychosocial model which underpinned person-centred care. Health-care models in the United Kingdom and the United States embraced this development, and there are signs of the shift from the 1990s in policy and practice [12]. The role of person-centred dementia care is, however, credited to Thomas Kitwood at the University of Bradford in the United Kingdom in the late 1980s. Heerema [13] writes that a person-centred approach to people experiencing dementia involves a recognition that there is more to the individual than a diagnosis of dementia. She writes:
A person-centred approach changes how we understand and respond to challenging behav- iours in dementia. Person-centred care looks at behaviours as a way for the person with dementia to communicate his needs, and understands that figuring out what unmet need is causing the behaviours is key. Person-centred care also encourages and empowers the care- giver to understand the person with dementia as having personal beliefs, remaining abili- ties, life experiences and relationships that are important to them and contribute to who they are as a person. On a moment-by-moment basis, person-centred care strives to see the world through the eyes of the particular person with dementia.
In a report on the theme of ‘person-centred care’, the Health Foundation [12] opted to offer a four principles’ framework rather than ‘a concise but inevitably limited definition’. The foundation publication listed the following principles:
• Affording people’s dignity, compassion and respect
• Offering coordinated care, support or treatment
• Offering personalised care, support or treatment
• Supporting people to recognise and develop their own strengths and abilities to enable them to live an independent and fulfilling life
Whilst these four principles are appealing from an ethical point of view, ques- tions remain regarding definition so we can more clearly sketch the philosophical terrain within which to situate ‘individualised care’. We might ask: What is meant by a person? What does person-centred really mean? and How might it be recon- ciled with ‘family-centred care’ or ‘community-centred care’?
Readers may be aware that the term ‘person’ is contentious in philosophical terms. In short, on some views, not all humans are persons and some persons may be non-humans. The idea of ‘personhood’ has underpinned discussion of ethical issues at the beginning and end of life. Debates relating to abortion and embryo research and to withholding and withdrawing treatment and euthanasia, for exam- ple, have raised questions about the meaning and implications of personhood. Some philosophers argue that ‘persons’ are beings with intelligence, self-awareness and consciousness, and it is these qualities and the status of ‘person’ that bestow moral agency and rights (see, e.g. [14]).
A potential hazard of having strict criteria for ‘personhood’, as presented in some philosophical perspectives (e.g. intelligence, self-awareness, conscious- ness), is that some humans (neonates, those who are psychotic, have severe intel- lectual disabilities or are unconscious) will not count as ‘persons’. The meaning of the term ‘person’ in ‘person-centred care’ needs then to be made clear and precision sought as to which perspectives on ‘personhood’ are ethically defensi- ble and which are not. Kitwood’s version of person-centred care [13], for exam- ple, does not adhere to traditional philosophical criteria for ‘personhood’ but rather focuses on the individual and who he/she is in the moment regardless of capacity.
Those perspectives on individual-focused care that are ethically defensible would include a holistic focus on the individual drawing on values that both individualised and person-centred care models could be said to have in common, namely, the value of autonomy and human dignity. So we have two individual-focused models of care which, whilst there are some different challenges with each, have a common orien- tation towards respecting choice and autonomy. But is respect for autonomy a suf- ficient basis in relation to these models?