Philip Darbyshire considers the patient experience and how healthcare professional can empathise.

As the BBC’s Poetry Season closes, I have a modest proposal, slightly less arresting than Jonathan Swift’s of eating children.  Today, more than ever, health services and staff need poetry, literature, art and stories to genuinely understand the patient experience and provide sensitive, responsive services.

As health services struggle with targets, quality and safety, chronic change and continuous demands for ‘efficiency savings’, my proposal may seem more perverse than modest.

Few writers have captured the transformation from ordinary person to ‘patient’ as memorably as Susan Sontag who famously described illness as being:

“…the night-side of life, a more onerous citizenship […] sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

In 20 years of teaching, researching and exploring the patient experience, the questions about “that other place” remain as clear for me as they are unavoidable for all healthcare and service providers:

  • What do people on the receiving end of our professional attention and services think of them?
  • What is it really like for this person to be ill and do we really understand this?
  • How do we create a valued system of care for people if we never try to understand their experiences?
  • Who are the best people to tell us about the experience of illness?

The patient experience has moved from inconsequential ‘soft data’ to being all the rage.  Much of the focus has however, been on the rush to measure experience before we have truly understood and appreciated it.  In the same way, the patient journey was reduced to timing and speed of some ‘unit cost’, rather than about what actually happened to you as a human being along the way.

I recently heard a colleague claim that the patient experience can be measured using only four questions.  Four questions to open up and assess the human experience of illness and hospitalisation.  Quite a feat. 

I should propose the Darbyshire operational patient experience scale or DOPES, with only two questions, offering an immediate efficiency saving of 50 per cent!

Question 1:  Are you still alive?

Question 2:  Are you happy?

From an evidentiary perspective, my scale almost certainly has as much reliability, validity and credibility as many other patient experience ‘metrics’.

At the heart of patient experience are patients’ concerns that professionals somehow “don’t really understand what it is like for them”. Art and literature help professionals examine both their own practices and patients’ and clients’ experiences in ways which are catalytically valuable, i.e. they trigger other improvements in thinking and practice.

Professional books and journals are wonderful but cannot provide deeper insight into the more existential elements of patients’, families’, clients’ and even health professionals’ experiences.  For these insights we turn to writers, poets and artists. As Richard Selzer observes, “Art is a means of acquiring experiences that one never had.”

Through the eyes of a sensitive and creative writer or artist, we can learn something elemental about the patient experience that will challenge our understandings of illness and care giving in ways that mere measurement never could.

It is impoverishing to a genuinely humane understanding of the patient experience to focus only on measurement at the expense of appreciation.  As damaging in fact, as it would be to imagine that nothing at all is measurable.