19.12 Person-centred care

In the literature, these concepts are often also described with similar expressions such as ‘whole person’ care, comprehensive communication and coordination, patient support and empowerment, and ready access.¹ However, others point out some differences between such expressions. For instance, in a literature review, Starfield² proposed that those using the concept of patient-centred care commonly highlight patient interaction, while those using person-centred focus on having a relationship over time. A primary focus on patient-centred care is also disease and disease development, while in person-centred care the focus is on how people experience health problems.² Furthermore, ‘patient’ is not a suitable word to label those with health problems such as, for example, type 2 diabetes patients, who for the most part manage their own treatment and self-care in their private environment. It is only when there is a relationship with health professionals, such as during visits to hospitals, that individuals with an illness could be referred to as patients. Therefore, this chapter will use the term person-centred care.

The basics of person-centred care are values such as respect, autonomy, reciprocity, and understanding. McCormack and McCance³ have developed a mid-range theory or framework for the development of person-centred care that states that four prerequisites are needed. First, the nurse or doctor needs professional competence, which includes social skills and self-awareness. Second, the care environment must function and offer various competences and must provide balanced power and relationships. Third, there must also exist a range of person-centred activities and facilitating organizational systems with potential for innovations. Examples of active care processes concern empathy, partnership, and engagement in patients’ priorities and needs. Last but not least, the person-centred outcomes must be evaluated with regard to its effectiveness.

A person is more than a patient. A person not only has wishes and needs, but also willpower, competence, and responsibilities. In order to understand the patient as a person and to allow him or her to become a partner, taking time to listen to his or her story facilitates the process. A story is much more comprehensive than questions and answers. It is common and easy to get stories that patients believe that we expect and prefer listening to. It is harder to get frank stories that reveal unknown personal facts or uncommon apprehensions, or stories that even imply a criticism of the professional’s role or the care organization. Such honest stories are more likely to be told in relationships where reciprocity and mutual respect exist. A safe relationship implies that the person dares to show weakness and will also tell ‘weird’ ideas about health, illness, and treatment.⁴ The personal understanding of illness is important to highlight, since it can sometimes interfere with an effective treatment.⁵ A fear of pharmaceuticals or their effects (e.g. insulin), and fear of becoming another person after losing weight are well documented. Such conceptions sound strange for professionals, but if we don’t listen to such stories and thereby don’t take them into account, our suggested options for treatment may be less effective and we don’t understand why.

Once, I interviewed a man with very poorly controlled type 2 diabetes who had been on insulin treatment for several years. He described that he was very frightened to take his long-acting insulin (the muddy insulin, as he expressed it) as his father became blind from taking it. This misconception was very easy to overcome. After the interview we sat down and we discussed it through again and after some weeks with some extra telephone calls by me, he took his insulin as prescribed and he said that he had got both his life and appetite back, something which he hadn’t felt for years. He had met several doctors and nurses in previous years and they all had made him understand that he was ‘hopeless’, since he did not manage his diabetes as he was expected to. Instead of being hopeless, I found out that he was a very anxious person, who with some help and support became empowered and felt well.

Taking time to discuss views of illness severity and the future seems to be of particular importance in person-centred care. Other personal experiences such as views on diagnosis and disease management are also included in personal understandings. These views on illness can easily be reflected on together with a health professional and help people to integrate disease and its management into their normal daily life. Hernandez⁶ developed in 1996 a theory of integration in diabetes. She pointed out that when a person has integrated illness, he or she doesn’t need to struggle as before. People eventually reach a turning point, which is defined as a sudden and powerful insight that something needs to be changed. When you reach a turning point you cannot wait and see any longer, since things have become more serious, almost a question of life and death, and you have to make choices and change.^6,7,8,9 Paterson,¹⁰ in a meta-synthesis based on the shifting perspectives model of chronic illness, described a paradox: even if you normally strive to assure wellness in your life (including living well, eating tasty food, and enjoyment), you come to a fork in the road when you have to adapt, plan, and sometimes even change habits in order to live well. At that turning point, things become more motivated and less arduous than before.

Helping people to integrate illness and disease management into their normal life includes reflecting not only on the needs for new routines, but also on the emotional and existential aspects of having a disease. This approach seems to be more effective and also seems to have better long-term results than traditional lifestyle advice.^11,12,13 However, this requires a novel professional approach to person centredness in care and counselling. Changing from a compliance-expecting approach to an approach based on empowerment as well as changing from a biomedical view of illness to a comprehensive biopsychosocial view is often difficult for health professionals. In 2004, Adolfsson and colleagues¹⁴ found that nurses and doctors felt that patient empowerment was something they had to grow into and that was not easy to change to. Hörnsten and colleagues¹⁵ found that diabetes nurses and patients had very different expectations and patients were quite dissatisfied with traditional diabetes care. Hörnsten and Graneheim¹⁶ described that people with type 2 diabetes expressed that diabetes nurses had a lesson to learn from them. More recently, Boström and colleagues¹⁷ found that diabetes specialist nurses in Sweden perceived a person-centred care intervention as quite disempowering for themselves even if the results for the patients were splendid.

An educating expert role which the nurses had previously found useful and simple was within an intervention exchanged with another more modern role with increased focus on listening and on patient empowerment. This was something they felt not comfortable with and as one nurse expressed it: ‘It is expected that the patients should talk most of the time, but who will we become then? Should we sit quietly and say nothing?’

Being pushed to change well-established working routines regarding, for example, self-management support could be interpreted as being forced to admit that efforts over many years are no longer acceptable and leads to a painful role ambiguity (cf. Boström et al.¹⁸).

The efficacy of person-centred care interventions in controlled trials was evaluated in a systematic review by Olsson and colleagues¹⁹ Of 11 trials that fulfilled the inclusion criteria, 8 were considered successful. The patients had chronic diseases such as obesity, diabetes, and heart failure. The person-centred care interventions led to significant improvements in physical function and in several other health-related aspects, and also the lengths of stays in hospitals were shorter. Other studies have demonstrated positive effects of person-centred care such as, for example, decreased mortality after myocardial infarctions,²⁰ less infections during hospital stays,²¹ and decreased haemoglobin A1c in both the short and long term in type 2 diabetes.^11,12,13 On the other hand, evidence that person-centred care is effective is not very strong, and more stringent studies are needed. Reports that person-centred care increases satisfaction among patients and their relatives²² as well as health professionals have also been published.^17,23,24 In Boström and colleagues’ study,¹⁷ diabetes specialist nurses felt that when working according to person-centred care they experienced an enriched relationship with patients and that they gained the courage to also discuss disease severity and future prospects.

In relation to person-centred care, Ekman and Norberg⁴ lean on personalism, which is a philosophical school of thought that tries to describe human beings in terms of their uniqueness and where the main interest focuses on human subjectivity and self-consciousness. A person with self-awareness and worthiness and who has social skills and can participate in decisions guided by ethics can also take responsibility for personal action. Our different traits and capacities can be acknowledged as well as made invisible by professionals, something which may either be an opportunity or a threat. People with illnesses may therefore sometimes hesitate to expose themselves verbally, since it can accentuate personal responsibility, shame, and guilt. Ekman and Norberg⁴ emphasize that the human being according to the personalism approach is free and autonomous, but not independent. Autonomy can therefore not be developed without regard and consideration of others. This is an opportunity for professionals who practise person-centred care, meaning that even those patients who have previously been thought of as ‘hopeless cases’ hopefully can be reached and inspired to continue their journey towards a turning point and integration of illness into daily life [cf. Ekman and Norberg⁴ and Jutterström et al.⁹].

The transition from traditional biomedical care to person-centred care interventions implies a radically changed position among health professionals, management, and policymakers. According to Ekman,²⁵ it could be viewed as a paradigm shift as regards the perception of people with illnesses. From now on and in the future they should be seen as people with life-force and dignity instead of being seen as diseases or deviances from the normal. This shift needs according to Ekman²⁵ professional competence and consciousness regarding ethics at all levels of medicine, nursing, care, and rehabilitation.