What is ‘person-centred’ care in policy?

‘Person-centred’ care has become ubiquitous in UK health and social care policy discourse as synonymous with care quality. Its meaning in policy, however, either is implicit or involves varying emphasis on different domains. It is commonly conveyed as individualised care, holistic care, choice, autonomy and dignity. Moreover, the use of the term, and the particular emphasis attached to it, has varied over time and in relation to wider policy interests.

One of the first UK policy documents to use the term ‘person-centred’ care was the National Service Framework for Older People (NSFOP).³⁹ In Standard 2, it refers to the requirement on health and social care services to ensure that this group of people receive appropriate and timely packages of care that meet their individual needs, regardless of health and social services boundaries. This treatment of older people as individuals was conceived as listening to them, involving them in all decisions about their care and needs, enabling them to make choices about their care and providing a co-ordinated and integrated service response. This was to be achieved through the single assessment process, integrated commissioning arrangements and integrated service provision between health and social care. It was incumbent on staff that services should be delivered in a manner that accorded respect and dignity. In Standard 7 relating to older people with mental health problems, including dementia, the hallmark of a quality system of care was that it be:

comprehensive, multidisciplinary, accessible, responsive, individualised, accountable and systematic.

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Person-centred’ care, then, was a multidimensional construct with interactional, relational and systemic components.

There was no explicit reference to ‘person-centred’ or ‘person-centeredness’ in respect of care in general hospitals in the NSFOP, the emphasis was on promoting dignity and privacy (Standard 4). It was asserted that care in hospital should be underpinned by ‘fundamental principles for the promotion of dignity’ (p. 52³⁹ © Crown copyright. Contains public sector information licensed under the Open Government Licence v3.0). This was translated into the creation of physical and care environments that were clean, offered privacy, promoted independence, provided for personal care needs, access to specialist care and advice from staff trained in caring for older people.

Subsequently, the term ‘dignity’ became the standard bearer to carry care quality in policy, being the focus of a campaign with particular emphasis on older people and care on hospital wards. A New Ambition for Old Age,¹⁴⁵ which set out further steps in implementing the NSFOP, had dignity in care at its center (Programme 1, p. 4). This was followed by the launch of a campaign for dignity in care by the Department of Health in November 2006, the aim of which was 'to put dignity at the heart of care' and to create dignity champions in every health-care organisation to promote it.¹⁴⁶ The primary emphasis in this campaign on the behaviour and attitudes of individual staff was criticised on the grounds that these exist within a complex set of organisational cultures and competing priorities that have an impact on individual and team approaches to the care and treatment of older people.^28,147

In its vision for modernising the NHS, High Quality Care for All,¹⁴⁸ the government emphasised the values of respect, dignity and compassion. It was noted in the preface of the paper that:

[T]he NHS touches our lives at times of most basic human need, when care and compassion are what matter most.

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In this paper, the term ‘person-centred’ was not used. The vision for change was of a locally led, patient-centred and clinically driven NHS; providing quality care, namely care that was personalised, safe and clinically effective:

safe, personalised, clinically effective care [and] locally led patient-centred and clinically driven change.

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Whereas ‘person-centred’ had been applied in a generic sense across sectors and services within the NSFOP, the term ‘patient-centred’ was more commonly utilised in a health context. Nevertheless, both terms were used interchangeably to encompass similar content. The policy shift towards dignity, respect and compassionate care did, however, direct attention to the relational aspects of care delivery and, therefore, to how care was experienced by those receiving it.

Person-centred care: people with dementia

Regarding the care of people with dementia, National Institute for Health and Care Excellence guidelines⁴⁰ made specific reference to Kitwood’s theoretical model of ‘personhood’,⁴⁴ the only policy document up to this point to locate person-centeredness in a theoretical framework. Many of the recommendations reflected values deemed supportive of ‘personhood’:

1. the human value of people with dementia, regardless of age or cognitive impairment, and of those who care for them
2. the individuality of people with dementia, with their unique personality and life experiences among the influences on their response to the dementia
3. the importance of the perspective of the person with dementia
4. the significance of relationships and interactions with others to the person with dementia, and their potential for promoting well-being.

The fourth principle places explicit emphasis on ‘relationship-centred care’ as a component of ‘person-centeredness’ in the emphasis placed on social networks and social interaction. Recommendations on hospital care included provision of services that addressed personal and social care needs and the mental and physical health of people with dementia, through specialist assessment involving medical and liaison teams and a co-ordinated and integrated approach to delivery.

The first national dementia strategy¹ did not use the term ‘person-centred’, although its focus on the social inclusion of people with dementia by reducing stigma and empowering people to make choices has also been subsumed under the term. The vision underpinning the strategy was that everyone with dementia would have access to needed care and support wherever they lived, and that:

. . . public and professionals . . . are well informed . . . fear and stigma associated with dementia have been allayed . . . false beliefs that dementia is a normal part of ageing . . . have been corrected . . . families affected by dementia know where to go for help, what services to expect . . . quality of care is high . . .

Department of Health, p. 15.¹

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This emphasis on equitable, antidiscriminatory, accessible and quality services reflected the chasm between the vision and the contemporary reality of provision. The priority was the creation of a service infrastructure to establish the conditions in which relational dimensions of quality care could flourish. Although improving general hospital care for people with dementia was a policy objective, the primary emphasis was on strategic initiatives (identifying leadership for dementia, establishing a care pathway and commissioning specialist liaison older people’s mental health teams).

Experience of care: patient or person centred?

Although the term ‘person-centred’ was introduced into policy around 2000, by the end of the decade it was still not embedded in the policy lexicon. Neither had it supplanted ‘patient-centred’, as both terms co-existed in different policy contexts.

The concept of ’patient-centred’ care is rooted in a shift from the traditional biomedical model in favour of embracing personal choice and autonomy for people receiving health services. ‘Patient-centred‘ care was defined by Balint¹⁴⁹ as care that understands the patient as a unique human being, and a patient-centred approach was one in which ‘the physician tries to enter the patient’s world to see the illness through the patient’s eyes’.¹⁵⁰ It was viewed as representing a style of consulting in which the doctor used the patient’s knowledge and experience to guide the interaction,¹⁵¹ forging a therapeutic alliance in which power and responsibility was shared¹⁵² to deliver care that was ‘closely congruent with, and responsive to patients’ wants, needs and preferences’.¹⁵³ Even so, debate has continued as to its precise meaning, although Mead and Bower¹⁵⁴ argue that the term ‘has been used to refer to so many different concepts that its scientific utility may have been compromised’.

An internationally recognised and widely used definition of patient-centred care that has been influential in North American health policy is that from the US Institute of Medicine. This comprises several components: a partnership model of health involving practitioners, patients and families, decision-making that respects patients needs and preferences, and knowledge and support to make decisions and engage in self-care.¹⁵⁵

Importantly, the Institute of Medicine conception goes beyond the relational dimension. Informed by the work of Gerteis et al.,¹⁵⁶ seven dimensions of patient-centred care were identified: respect for patients; co-ordination and integration of care; information, communication and education; physical comfort, emotional comfort/alleviation of fear and anxiety; involvement of family/friends; transition; and continuity. Further layers of responsibility on health systems at service, sector and programme level were added to ensure that organisational processes and regulatory and governance frameworks were underpinned by these principles.

Until the mid-2000s, this conception of patient-centred care was also reflected in influential UK-based policy organisations. The King’s Fund Point of Care Programme¹⁵⁷ was intended to work alongside front-line staff and their managers and focus attention on patients’ experience of care in the NHS. The authors argued that the quality of a patient’s experience was seeing the person and not just the patient and being related to with compassion and kindness. They emphasised that the paradigm shift toward ‘patient experience’ was not simply about the relational dimension of care. Rather, different aspects of the experience – the process of care and treatment, the environment in which it occurs, the physical sense of the place – come together with the manner in which it is delivered to inform the subjective experience.

In projecting a definition of quality to capture the experience of ‘the person in the patient’, Goodrich and Cornwell¹⁵⁷ drew on the Institute of Medicine’s¹⁵⁵ definition of patient-centred care and the dimensions that constitute it. These were similar to those adumbrated in the NSFOP under the term ‘person-centred’.

A consultative exercise commissioned by the Picker Institute around the same time concluded that the factors contributing to patient-centred care based on the Institute of Medicine’s definition were¹⁵⁸ leadership; strategic vision clearly and constantly communicated to every member of the organisation; involvement of patients and families at multiple levels; care for the caregivers through a supportive work environment; systematic measurement and feedback; quality of the built or physical environment; and supportive technology. The delivery of patient-centred care was seen to require action at multiple and interacting levels: organisational, cultural, environmental, individual and relational, as well as the qualitative dimensions of the work environment of those delivering care.

Although describing similar ideas, the term ‘patient centred’ has been the subject of critique on the basis that it still addresses the person as ‘patient’ (i.e. in context of their illness or condition). Person-centred is seen to cover a wider range of settings other than health. It also implies a person as both a social and relational being, and part of a wider social network that shapes the pattern of daily life and sense of well-being.

Ascendancy of person-centred care in UK health and social care policy

Over the last decade, the concept of person-centred care has become the term most widely used in UK policy discourse, yet its meaning and how it should be enacted in practice is ambiguous and fluid. In different areas of health policy, there are varied nuances of meaning. Considerable work has been undertaken by organisations aiming to influence policy in order to achieve consensus on meaning and content.

The Health Foundation¹⁵⁹ identified a framework of four basic principles to guide the ‘new’ relationship between providers and users of health services to secure care tailored to individual needs: dignity, compassion and respect at the centre of care delivery; care that is co-ordinated; care that is personalised; and developing and supporting people’s own strengths to live a good life.¹⁵⁹

This summarises person-centred care as individualised, caring and enabling; involving collaboration between professionals and those using services; providing people with the knowledge, skills and confidence to manage and make informed decisions about their health and health care; and co-ordinated and delivered in a manner that accords dignity, compassion and respect to the person.

This embraces principles relating to care systems to enable people live a ‘good life’ and those geared to the care delivery process and the relational encounter. It is similar to the Institute of Medicine’s definition of patient-centred, with the important exception that understanding of personalised care and the focus of co-ordination goes beyond health.

The similarities and differences between the concepts of ‘patient-centred’ and ‘person-centred’ are noted in a policy briefing by the Picker Institute.¹⁶⁰ Recognising that both terms described similar ideas, ‘person-centred’ was preferred: it embraced a wider range of care settings, recognised people as individuals rather than as ‘patients’, and was better able to reflect the important role of people’s families, friends and caregivers in their health and well-being. Furthermore, it opened up a more inclusive model for building a quality health system by encompassing people who lacked health literacy or capacity. Whereas in dementia the concept of ‘personhood’⁴⁴ and the persistence of self⁴⁵ had countered the dominant biomedical model, an inclusive conception of ‘person-centred’ care also posed a challenge in actualising principles of enablement and collaboration for and with people with dementia, particularly those with moderate or severe impairment.

Translating person–centred care into service development and delivery for people with dementia

The major challenges in the NHS, which include increased demand, fundamental structural and cultural change and the context of economic austerity, have prioritised achievement of health efficiencies. As a result, ‘person-centeredness’ in policy discourse has assumed a double-edged meaning. For example, involvement in decision-making and effecting choice, both of which are regarded as dimensions of person-centred care, have found expression in such initiatives as personalised budgets aimed simultaneously at meeting productivity and ‘patient as person’ objectives, and pose considerable challenges in respect of people with dementia. The Health and Social Care Act 2012¹⁶¹ places a legal duty on NHS England and Clinical Commissioning Groups to involve patients in their care. However, increasingly decision-making on local health priorities are driven by budgetary constraints, posing the question as to what level of involvement and by whom, defines a service as ‘person-centred’. The Scottish Government’s 2020 Vision¹⁶² states that:

care will be provided to the highest standards of quality and safety, with the person at the centre of all decisions.

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Less evident is what ‘being at the centre of decisions’ looks like, especially for people with dementia.

Some aspects of the direction of travel may be seen in more recent policy documents. There is emphasis on singular dimensions of person-centred care, particularly at the interpersonal level of the professional–person interaction.

The first Prime Minister’s Challenge on Dementia¹⁰ set out three broad objectives: driving improvements in health and care; creating dementia friendly communities; and committing to increased research, which also includes engagement of people with dementia. Under the rubric of these objectives were infrastructural and service development initiatives: increasing diagnostic rates through improvements in awareness, including in acute hospitals, education and training of the health workforce, geared to role and purpose; a NHS guarantee of a written integrated personalised care plan; and better assessment and support for caregivers. Although the term ‘person-centred’ care was not explicitly used in the document, components of it featured heavily, namely a ‘personalised care plan’, relationship-focused care, and ‘seeing the person’, not the dementia, through strategies designed to enhance social inclusion.

The Foreword in the recent Prime Minister’s Challenge¹⁰ refers to compassionate care, and:

that kindness, care and dignity take precedence over structures and systems.

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Although the broad objectives remained the same as those set out in the first Challenge, they were now couched in terms of outcomes articulated through engagement of people with dementia, including staff/professional encounters based on compassion, dignity and caring; a partnership approach involving listening, offering and supporting people to make choices about their health and care; and ensuring more consistency of access, care and standards of provision. However, the notion of ‘compassionate care’, delivered through encounters that accord dignity and respect for the person, dominates.

The focus on the relational dimensions of health care in professional and policy discourse is not surprising, following on from the Mid Staffordshire hospital scandal. Interpersonal aspects of the nursing role, namely care, dignity and respect, were conveyed by the RCN as critical in transforming acute hospital care for people with dementia.^163,164 Moreover, the language of ‘compassion’ and ‘compassionate care’ has increasingly dominated policy. The nursing vision for care, as explicated in the ‘6 Cs’ of care, compassion, competence, communication, courage and commitment,¹²⁴ presents the nursing role primarily in interpersonal and social terms and applies the same model to the care of people with dementia.¹¹³ This is not to suggest that the relational dimension of ‘person-centeredness’ is unimportant; it is the extent to which it directs attention from the organisational, environmental and systemic dimensions that facilitate person-centred care at the relational level that is problematic. As elucidated in a King’s Fund paper,¹⁶⁵ enabling compassion that involves staff openness to distress and suffering also requires the existence of teams that are supportive of staff and of organisational cultures that create and sustain healing environments.