Patient centred care: Rhetoric and reality
One year on from Francis, my top priority remains to support you in creating a more patient-centred, compassionate NHS.
The ambition of making the NHS more patient-centered, or in the case of Andy Burnham, person-centered, is shared by most political and health policy leaders. Confusions about what patient-centered care really means can produce efforts that are superficial and unconvincing, such as policies, like friends and family tests and treating patients as customers, promoted by National Director for Patients and Information Tim Kelsey. An excellent report by the Health Foundation rightly puts relationships at the heart of patient-centered care and makes the important link between the structure of the health service and the possibility of relationships:
relationships in healthcare … do not exist and evolve in isolation but are strongly influenced by the context(s) within which they take place. This includes the structure of the wider health system and the policies governing the interactions … alongside factors that influence the service user and service provider… e.g. the users social status or access to other support networks.
The structure of the NHS is shifting from a public service in which patients are vulnerable citizens in need of care to a market-place in which patients are consumers, and this is putting patient-centered care at risk. For patient-centered care to flourish, the NHS has to allow the right kinds of relationships between professionals and patients to develop. Epstein contrasts transactional relationships, such as Kelsey’s concept of patients as consumers, with interactional relationships, in which the patient is a person:
At one end of the continuum, an interactional approach promotes knowing the patient as a person, tailoring information, constructing preferences, achieving consensus, and promoting relational autonomy. At the other end a transactional approach focuses on knowledge about the patient, information as commodity, negotiation, consent and individual autonomy.
Interactional relationships requiring knowing the patient as a person, and to emphasise this point Starfield suggests that whereas patient-centered care relates to a single encounter, ‘person-focused care’ is based on an accumulated knowledge of a person and their needs in the broader context of their life. In order for knowledge to accumulate, relationships need to develop over time. Explaining what an evidence-based response to Mid Staffs would look like, Greener points out the importance of giving professionals the time and space to provide quality care and working with their intrinsic motivations, rather than adding targets and protocols. Munthe, Greenhalgh and many others note the importance of allowing time for narratives, the stories patients tell about their lives, that give their symptoms context and meaning. One meeting is rarely enough, especially when caring for patients with complex or long-term conditions. Getting to know a patient as a person depends on continuity of care, a point repeatedly emphasised by many doctors who have experienced being patients themselves. Few people who have experienced what it is like to be a patient, especially with a serious, long-term illness would dispute the value of patient-centered care, but proving why it is important is more problematic. The Health Foundation concluded that evidence linking patient-centered care with disease-centered outcomes is mixed and inconclusive. The problem is that patient-centered outcomes are so hard to define. For one thing, in primary care many presenting symptoms remain ill-defined and undiagnosed, but are nevertheless distressing for patients and make up a considerable part of General Practice workload. For another, patients are increasingly suffering from multi-morbidities where two or more medical conditions co-exist and interact, for example cancer and heart-disease, or diabetes and depression. By the age of 65 most of the population have at least 2 morbidities, but young and middle aged people in the most deprived areas have rates of multimorbidity equivalent to those of people 10 to 15 years older in the most affluent areas. Treatments can interact adversely, or simultaneously improve one condition and worsen another.NICE guidelines, Shared-Decision Making tools, QoF incentives are all designed for a disease-centered model of care that diverges further from patient-centered care the more complex patients’ problems become. A recent review of new cholesterol and blood pressure guidelines observed,
Many guidelines have a paternalistic tone. The embedded assumption is that it is possible to tell physicians what should be done based on some limited clinical characteristics of the patients—and that the patients’ role in the decision is absent.
Almost certainly we’re not measuring the outcomes that matter to these patients, despite some promising research. I agree with Rowland’s conclusion that, “multimorbidity introduces clinical uncertainty in a way that is unlikely to be resolved by ever more sophisticated guidelines” So what do we need to make the NHS more patient-centered?
- At its simplest we need to create more time to care. Patient-centered care depends on the accumulation of knowledge and trust, which takes time.
- We need to create time by stopping the measurement of things that don’t matter to patients, like cholesterol levels, smoking, exercise and depression surveys.
- We can help to create time by challenging the dogma that more screening is better and, for example, stop screening for dementia and breast cancer and general health checks thatdont help the majority of patients.
- We need to free clinicians from the bureaucratic duties they’ve been burdened with, which is increasing as a result of the expansion of commissioning and the cull of management and administrative staff.
- We must invest in GPs and hospital generalists trained in the care of patients with multi-morbidities and person-centered care.
- We need to improve continuity of care, especially for patients with serious, complex and long-term conditions and mental health problems.
- We would stop trying to treat patients as customers or consumers and treat them instead as partners in their care.