Patient-centred care: the universal power of stories

On a rainy morning in Sydney, Australia, I'm at a meeting for senior leaders in the New South Wales' health system, and we're talking about the dynamic, culture-changing power of stories and story-telling.

The focus of the meeting, organised by the NSW Clinical Excellence Commission (CEC), is on building leadership to promote 'patient-based' (what we'd call 'patient-centred') care.

Cliff Hughes, one-time cardiac surgeon, now chief executive of the CEC, takes to the stage to give a master class on the power of story-telling. He tells us about a Tuesday evening, early in his career, when he was called back to the hospital to see a patient who had been operated on earlier. The patient was bleeding internally; his condition deteriorating. As Cliff drove in, he called his consultant colleagues for advice. By the time he arrived he had established that nothing could be done to save the patient.

Cliff sat down with the patient: he explained what was happening, told him he had spoken with his colleagues, and that there was nothing anyone could do for him. He told him he would die. The man wanted to know when – 'In the next few hours. Is there anything you want?' said Cliff. The patient asked Cliff to stay with him, so he sat with him through the night. They talked about the patient's life as a truck driver; about his estranged family; about football; their shared passion for engines; and about dying. In the course of the night, they managed to contact the patient's daughter who came in to see her father before he lost consciousness.

The next morning, Cliff received a call from the director of nursing who wanted to see him. Heart sinking, he went to her office. Before she could speak he began, 'Matron, I'm sorry about last night. There really was nothing we could do to save the patient.' 'No,' she said, 'you've misunderstood. I wanted to tell you that what you did last night, sitting with that patient, is all over the hospital. You have given us a gift. You have shown all of us how to care for our patients properly.'

Cliff's story illustrates the extraordinary, immeasurable value of an action by a notable member of staff that embodies empathy and compassion.

The story affected the rest of the leaders' meeting that rainy day, and there was a rare seriousness and openness in the discussion about patient-based care. One doctor regretted the 'empathy by-pass' he perceives among fellow doctors, and talked about 'unconscious incompetence' in this area. Others, in a similar vein, regretted that nursing has 'lost its soul'.

Coming from the UK, the discussions felt familiar to me. But if the issues are the same, in Australia the proposed remedies are different. Here, the 'consumer' presence in health care is much stronger. The Australian Safety and Quality Framework for Healthcare, produced by the Australian Commission on Quality and Safety, provides a national standard for partnering with consumers. Every hospital has a statutory consumer advisory body and yes, it is true that some treat consumers in a tokenistic way: the chairman of one such body told me disgustedly that his hospital had started out with the annual pruning of the roses as the sole agenda item at their first meeting. But other organisations take it more seriously: they include patients on recruitment and selection panels; involve them in staff appraisal; and invite them into routine meetings of multi-disciplinary care teams, because they recognise – as Alicia Wood, consumer adviser to the CEC, says – 'you can't fix things with only half the story.'

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#529 Pete Moore
Pain Toolkit

I was out in Australia in June doing some talks about the Pain Toolkit to health care professionals and patients (consumers as they are called there) and was struck how different patient centred care operates there to here in the UK.

Many people here feel just like another NHS number and get stuck in the system.

Like the story above, not everything is solved by an operation or medication, and in most cases people would like some quality time with their health care professional which in some cases could be better than sending them off with another prescription.

When I running workshops for health care professionals teamwork is mentioned a lot.

Could add more but would like to hear what others have to say about giving people time

#530 Malcolm Busby

I was sent a link to this blog by my special lady, she thought I would be interested and I am.

As described in the blog the power of story is immense, something that is recognized already by some health care professionals working in various areas. The Australian doctor was obviously involved in personal reminiscence type of story, which is a very powerful tool to help understand people. I have colleagues who do just that in various health locations.

Folktales and fables and every other type of story are also useful tools something that has been widely recognised in England by the Society for Storytelling which has a special interest group for health.

While realising that time is very precious and pressure is immense for health staff, please never underestimate the healing power of words and stories.

#531 Ruth Cartwright
Social Worker

As a Social Worker I know that everyone has a story to tell and there is something remarkable about everyone with whom we come into contact. It seems to me that when someone has troubles (in the case of health professionals, illness), the least we can do is give them time to telll their story, to put what is happening in context for them and us, and to explore fears. It is also the most we can do.

#532 Ann Mallanaphy

I fully agree that explaining procedures to patients and oreintating them to there surroundings really reassures them and by giving them time to tell their problems or stories it is paramount in the healing process since if they are relaxed psychologically it has been proved that this has a marked effect on the physical condition and results in a more cooperative patient if they are empowered with knowledge, also the physical aspect and the mental aspect of patients are not separate entities but indeed very much linked in one unit/ There is no need for this patient/priofessional communication to take up the valuable time of the professional but can and indeed should take place before during and after every procedure that occurs. Indeed, I do know that in the past when a nursing procedure book was in use that at the beginning of every procedure were the words 1. Explain to the patient what was to be done and obtain consent for the procedure this even if it was only for a routine procedure such as the giving of a bed bath (incidentally during which procedure there is very good opportunity to communicate with the patient). 2. R eassure the patient and leave them comfortable following the procedure. I am not aware that these rules have changed for carrying out nursing procedures.

#533 Kathy Torpie
Keynote Speaker

As a keynote speaker, presenting my experience as a patient at medical conferences internationally, together with insights as a psychologist, I know the power of story telling first hand. But it is also important to deliver patients' stories with the wider context of a complex health care system with multiple needs in mind. Every proposed solution to quality improvement must be a win-win proposition. When time given to patients is shown to actually save time in the long run, it is more likely to be received as a 'solution' rather than another 'demand'. Similarly there are many examples of how a compassionate relationship that acknowledges the person as well as the injury or illness can be created without taking any extra time.

#534 Dr Karen Luxfrord
Director Patient Based Care
Clinical Excellence Commission

Thank you Jocelyn for being involved in the day around 'Building Leadership To Improve Patient Based Care' in Sydney! You have captured it well here in your blog. The comment about 'unconscious incompetence' has stuck in my mind too. We look forward to more international exchange of ideas and initiatives in thsi field.

#536 Carol Sinclair
Patient Experience Programme Director
Scottish Government

Jocelyn - a truly moving contribution. I will be sharing widely as we take forward our work on improving the patient and staff experience and the responsibilities we each have to restore the humanities and art of care. Thank you.

#538 June Burgess
Regional Coordinator UK and Ireland
Eden Alternative UK

I could not agree more strongly about the importance of stories. The foundation of the Eden Alternative philosophy is built on the power of story telling. Our elderly folk have a lifetime of stories to tell and we can learn so much from their wisdom.

#547 Suzanne Shale
Senior Researcher
Health Experiences Research Group, University of Oxford

A fascinating blog. In my research into the moral experience of UK medical directors I concluded that their critical role as moral leaders was to catalyse organizational moral narratives by demonstrating appropriate behaviours themselves. While one of the most important aspect of this is showing how healthcare professionals are 'trustees' for individual patient interests, this component is necessarily in tension with others: these others include their demonstrating responsibility for promoting the interests of all patients, current and future; demonstrating responsibility towards colleagues; demonstrating neutrality as investigators or reviewers of evidence in cases of harm; and demonstrating leadership of "moral repair" when things have gone wrong. Good leaders hold these moral commitments in balance, exhibiting appropriate moral behaviour when the occasion demands it.

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