Abstract
Current thinking in health care defines a quality service as one that is safe, effective, equitable and patient-centred.1,2 Patient-centred care is regarded as encompassing six dimensions: compassion, empathy and responsiveness to needs, values and expressed preferences; coordination and integration; information, communication and education; physical comfort; emotional support, relieving fear and anxiety; and involvement of family and friends. Recent work with patients with chronic illnesses suggests the dimension of communication, information and education should be widened to include support for self-management on the part of the patient.3,4
Evidence to support the importance of patient-centred care is beginning to receive the attention it deserves. Research has been uneven and highly specialized: communication, privacy and dignity are well-researched whereas involvement of family and friends, and coordination of care have received comparatively little attention. In addition, most research focuses on patients' experience in acute hospitals though there is some from primary care, mental health settings and end-of-life care.
The efforts of researchers, policy-makers and practitioners to understand and improve patient experience have been undermined by problems of language and muddled thinking. The field is bedevilled by multiple terms with over-lapping but different meanings including: family-centred care; relationship-centred care; basic care; dignity and respect; customer care; personalized and individualized care. Each term resonates powerfully with different professions but most provoke either mixed or negative reactions from some or all of them, making it difficult to achieve a sense of common purpose.
The multi-dimensional definition of patient-centred care reflects the thickness and texture of patients' subjective experience, itself a product of both what happens (transactions) and how the patient is treated (relational).5,6 The following quotes serve to illustrate how transactional (T) and relational (R) aspects of care weave together to shape the quality of experiences as positive or negative:
My father was diagnosed with advanced prostate cancer a couple of years ago. It was a huge shock to the family. The whole process of initially having a problem, going through tests (T), getting a diagnosis (T and R) and choosing a treatment option (T) was excellent. My Dad and Mum felt supported and well informed (R). As a daughter, I felt that all my questions were answered (R) and that the staff enabled me to be involved (R) – as my parents wanted me to be, while ensuring my Dad stayed in control / made his own decisions. (Daughter's testimony)
She was treated like a parcel. The junior doctor ordered tests but she was moved before the results arrived so they were never received (T). In one of her moves, she was taken by a porter in a wheelchair to the door of one ward (T). The nurse in charge came to the door and barred the way, telling the porter: ‘You're not bringing her in here'. (R) My mother felt anxious she would be lost inside the system. (Daughter's testimony)
Critically, the degree to which care is experienced as exceptionally good or exceptionally bad is bound up with the degree to which staff treat patients with compassion.
All efforts to improve service quality stumble against organizational barriers and although the infrastructure and capability for improvement is developing, there is a long way to go before providers are able to transform the experience of care.7,8 Tackling short-comings in patient-centred care is arguably more challenging than tackling other aspects of quality for five reasons. First, problem recognition. This is partly to do with ignorance about the importance of patient-centred care and the belief that patients are mainly concerned with issues such as car parking. But it is also because patient-centredness is mistakenly seen as an attribute of ‘caring’ individuals and there is an assumption that people who choose to work in health care are by nature, compassionate, empathic and caring. In fact, in the same way that the degree to which patient care is safe is determined by the workings of the system, so the degree to which it is patient-centred is determined by the system and not by random acts of goodness on the part of individuals.
Second, problems with evidence. These are of two kinds: the evidence that quality of experience is linked to clinical outcomes and activities is overlooked,9,10 and the evidence that patients themselves contribute to assessments of quality is considered weak and lacking in credibility. This is partly because of recognized problems with patient survey data and partly because of misapprehensions and assumptions about the status and relevance of qualitative data to clinicians.11,12
The third challenge is problems of accountability and responsibility. In some providers, executive responsibility for quality and patient experience rests with a senior nurse. It is a short step from the chief nurse being accountable for patient experience, to patient experience being defined as exclusively about nursing, so that the contribution of others is ignored.
Fourth, the nature of the problem. The multidimensional nature of patients' experience of care, and the fact that staff attitudes and behaviours are implicated, calls for different methods and approaches from those used to correct purely transactional aspects of care. Here the focus is not simply on changing what gets done, it is on changing how staff relate to patients, their mind sets, attitudes and feelings. Patients' experience is shaped, directly and indirectly, in complex ways by (individual) human and (cultural) organizational factors; the effort to understand and influence these factors in order to improve patients' experiences is about ten years behind the patient safety movement. 13
And finally, evidence of effective solutions is fragmented and tends to be descriptive rather than analytical. Much of it depends on self reports and claims that are not independently evaluated and most of the research into methods of improving patients' experience is limited to one profession or staff group, or one dimension of care.
In the USA, a handful of hospitals are renowned for offering a high quality patient experience. 14 Studies attribute their success to several factors: stable, strategic, effective leadership of clinicians and managers; making patient experience a strategic priority; clear communication of strategic goals; strong support for staff; involvement of patients and families in service planning and design, service improvement and governance; use of ICT to support information for and relationships with patients; high quality physical environments. 15
The two factors that stand out as distinctively different from the organizational factors associated with improvements in effectiveness and safety are support for staff and involvement of patients and relatives. Both make good sense. The evidence on staff well-being and effectiveness and patient experience shows the two are related.6,16–18 And commonsense suggests that services that welcome patients and families into their work and decisionmaking are likely to have greater insight and to be more responsive to their needs and wishes.
What the studies do not explain is how the hospitals in the USA managed to achieve their reputations. What were the steps, and what are the processes that have made the difference? What kinds of structures and processes work best for involving patients and families? And what kinds of support for staff are effective?