Putting the patient at the centre

What is the role of the healthcare professional in empowering people with diabetes to take more effective control of their care? And what are the challenges for both parties in this process?

These issues were addressed by Florence Findlay White, national care adviser with Diabetes UK Northern Ireland, in her presentation to the ‘Facing the Tide’ conference at Farmleigh, in Dublin.

She outlined optimal approaches to ensuring that the person with diabetes is placed at the centre of their care, and the role of the health professional in that process.

Her presentation also dealt with concerns professionals might have, but might not necessarily express openly, about ceding so much control of diabetes care to the patient.

Ms Findlay White previously worked as a diabetes specialist nurse in Glasgow and took up her role at Diabetes UK Northern Ireland in July 2007. She gave a short history of the changing philosophy in diabetes care and how the approach had changed from an emphasis on compliance and adherence to one of patient empowerment, stressing that the patient provides 98 per cent of their own care.

In the past, Ms Findlay White pointed out, if a patient didn’t comply with treatment, health professionals tended to blame the patient, and they would attribute this to lack of willpower, or to them being in denial etc.

She cited work by Funnell and Anderson, which first appeared in the late 1990s, highlighting that adherence implied a dictated treatment plan, rather than the active will of the patient making daily decisions in guiding diabetes management. This research also stressed that in diabetes care, moving from compliance to adherence was not enough and something entirely different was needed. 

Funnell and Anderson have since written regularly about this change in approach to care, stressing a collaborative approach between patient and carer, with the patient at the centre of the process. 

Ms Findlay White pointed out that they have refined and reviewed their definitions and in 2004 they said a collaborative approach helps people with diabetes make sense of their disease in the context of the uniqueness of their life, and helps develop personal goals for its management.

Two of the fundamental principles of empowerment, according to these authors, is that the patient provides 98 per cent of their own care and the greatest impact on the individual’s health and wellbeing is as a result of the daily decisions and actions during the routine conduct of their daily life.

Ms Findlay White stressed that the key to the patient empowerment approach is a patient-centred philosophy. 

The empowerment approach expresses a person-centred philosophy, pointing to Carl Rogers pioneering of a such a philosophy within the context of counselling and education. He said: “in my early professional years, I was asking the question – ‘how can I treat or cure or change this person? Now I would phrase the question in this way – how can I provide a relationship which this person may use for his own personal growth?” 

In diabetes care, said Ms Findlay White, the approach was very much the same.

A recent report from the Health Foundation in the UK looked at how people can measure person-centred care better in terms of research. The top six most frequently recurring components were experience of care, dignity and compassion, patient activation and engagement, person-centred communication, shared decision-making and supporting self-management.

She said a lot of professionals might worry about empowerment, and worry about the role of the healthcare professional. Some might fear that it was about letting patients essentially do what they like, but this was not the case, and the professional had a key role to play here.

It was understandable that there might be tension between the patient saying ‘this is what I want to happen to me’, and the healthcare professional secretly wondering ‘what if it’s the wrong choice’? This was an issue for professionals, especially when there are targets to be achieved, but it is an issue that can be overcome.

Ms Findlay White stressed that healthcare professionals are responsible for doing all they can to ensure that their patients are making informed self-management decisions and for exploring the barriers that interfere with self-management.

One of the areas where the person-centred philosophy was vitally important is structured diabetes education. Both DESMOND for type two and DAFNE for type one have signed up to the person-centred philosophy ‘because unless you do, you cannot deliver these programmes’. 

“The behaviour of the educators needs to be person-centred, in order to make structured diabetes education effective. The philosophy is that each individual is responsible for the day-to-day management of their diabetes. People make the best possible decisions for themselves to achieve their best possible quality of life.” 

With this process, there are no ‘lectures’; everyone is encouraged to discuss their thoughts and feelings, barriers, and beliefs.  Understanding is checked, personally relevant questions are addressed. People complete their own health profile.

It is important, Ms Findlay White stressed, that educators have an empathic approach and are non-judgmental. Goals and action plans are developed by the individuals, supported by the educator.

Addressing the barriers that prevent people with diabetes taking proper care of themselves, Ms Findlay White cited, among other things, lack of knowledge, inaccurate health beliefs, negative feelings about diabetes, fear of hypoglycaemia, family conflicts, having a poor relationship with a healthcare professional, etc. She stressed the need for communication skills in healthcare professionals in order to transmit a person-centred philosophy in delivering care. 

It comes down to qualities of the practitioner, skills they might have in the environment the patient sees them in – the skills include respect, not being judgemental, and include being listened to, communicating properly with patients, having an outcome and feeling understood.

“How in practice do we achieve collaboration? First of all, the basic listening skills are skills that communicate partnership and person-centredness. What you have said to your patient should relate to what they have said to you so you are not changing the subject. You should ask a question whereby the patient is able to tell their story.”

Paraphrasing was important in order to express empathy with the patient. For example, someone might say ‘my father died and then I was made redundant from my job’… and you might paraphrase – ‘so you’ve had a really bad year then’.

Ms Findlay White said the professional needs to acknowledge that someone might be sad or angry. The professional might also need to make more precise sense of something said, by drawing out the patient on something they said that might be vague.

The process involves taking the patient from identifying the issue, the barrier that is preventing optimal self-management, through to committing to action to change that aspect of their behaviour.

Ms Findlay White said there is a staged empowerment model – moving from identifying the problem, to exploring feelings and values around that problem, to identifying options and goals, to committing to action and action planning and reviewing that and advising if necessary.  The emphasis was on patient-identified goals.

She also announced that it is planned to bring the Northampton Diabetes Empowerment and Counselling Course to Ireland next year.