Evidence, Medicine and Art – Lived Experience Completing the Picture
Authors: Laila Hallam
This post was originally published by the Evidence & Policy blog on 11 May 2020.
We have re-issued the article that has already been published by the Evidence & Policy blog. We would like to express gratitude to the kind offer of the editorial board of the Evidence & Policy blog.
This blog is the first of a series of blogs linked to the Evidence & Policy special issue (Volume 16, Issue 2) on Opening up evidence-based policy: exploring citizen and service user expertise. Guest Edited by Ellen Stewart, Jennifer Smith-Merry, and Marc Geddes.
Recently I came upon this photo in a post in Twitter [1]. I have seen it before. It’s a powerful image by Sir Luke Fields. The child and doctor at the centre, in the glow of the lamp. The child ill and exhausted. The doctor earnestly observing. Watching. Sitting. Waiting. Thinking. Previously, and again this time, I absorb this painting as a statement on the medical profession. A reminder of the solemness of their work. The gravity of life and death. The role of the family in the background, secondary and in the dark.
But then I was challenged to really look at the image. The Dad wasn’t simply in the background, he was standing in the shadows, he was stoic, he was purposefully and intently studying the doctor for signals. Only after considerable prodding, did I notice Dad’s hand comforting his distraught wife. The Mum collapsed in prayer, or distress, or both. Dad’s hand gently on her shoulder, reassuring her, or maybe channelling his energy into her prayer. Her faith. Their hope.
Of course, it has so much more. The dawn light coming through the window with no glass, the poverty, the love, the warmth, the exhaustion, the time passing.
I then read that Sir Henry Tate, of the Tate Gallery, had commissioned Sir Luke Fields to paint a subject of his own choosing. Sir Luke Fields had earlier lost his own one-year-old child, Philip[2].
Was the painting drawn from the family perspective of an ill child? The family placing the child and the doctor into the centre of their story? The connection between doctor, patient and family? Of knowing how to work together, and each knowing when to step back?
Only then did it dawn on me how differently we can perceive the same image. Neither perspective more right nor wrong than the other. Each equal, unless and until interpretations are shown to be otherwise.
Perspective in medicine and health care, is an interesting thing.
In healthcare clinical perspectives and patient perspectives are not equal. They begin with a trust bias, heavily weighted against the patient. Whether intentional or inadvertent, our societal trust in our public institutions and professions, means that clinicians are afforded a higher level of trust. In contrast, the same societal trust has not extended to our patients and families. They are rarely recognised for the expertise they bring to managing and living with their illnesses. Over years, this has led to an over-estimation of our doctors, and an under-estimation of our patients. Trust is often not reciprocal. Patients must trust their doctors. Doctors however don’t seem to think that they need to, or can, trust their patients.
This trust discrepancy has created a chasm between clinical perspectives and patient perspectives. Clinical perspectives tend to comfortably stand alone as factual representations; while patient perspectives are relegated to experiences and opinions which require clinical validation.
Interestingly, and to tangent for a moment, the word ‘patient’ comes from the Latin patior, which is “to suffer”. The word ‘hospital’ comes from hospes, meaning “guest” or “stranger”, the root of which also includes hospitality[3]. So, if I follow the etymology, bringing together a hospital and a patient could be interpreted as a place to welcome a suffering guest.
Illness and injury cause patients to suffer. And alleviating patient suffering is the purpose of health care. “…then it logically follows that the patient would be at the centre of that picture – the focus of our care. So, if we agree that Patient-Centred Care is to put the patient at the heart of their healthcare treatment, then Patient-Centred Care IS the purpose of healthcare[4].”
As I’ve travelled through our health system as an involved family member, I have seen beautiful, gentle and attentive care. I have also seen lapses. Significant lapses. Lapses so obvious to our family, yet invisible to the system providing care. Some of which led to unnecessary and avoidable pain and suffering and wasted resources.
And all in the course of an illness of just one patient. My Dad. My observations. My experience. Indelibly etched. But absent in the established evidence.
I am not alone. There are many, many anecdotes whispered between patients in the community, that are not reflected in the evidence. These are the patients’ reflections of their care. They comprise of both positive and negative experiences built-on over time and many interactions. Credits and debits which are consciously and unconsciously weighed together by individuals and go to the heart of their level of trust and confidence in the delivery of their treatment and care.
These reflections of care are not simply stories. They are grounded in one’s view of reality. That they are from only one perspective does not make them less true. That patients and families may be unwilling to share them with their providers does not make them less true. That they are not actively prioritised, collected and reported does not make them less true.
Rather, the failing is that they are not systematically contributing to the body of evidence that will allow all perspectives to be tested against. They remain stories, anecdotes, whispers in the winds, but mostly they stay silently in the shadows.
Yet, a different standard applies to clinical perspectives. For example, information added into medical records are recorded as facts of an interaction. They do not need to be validated by the patients’ perspective in order to be accepted as reliable. Recording them, also makes them searchable and available to research. These medical records, opinions and interpretations contribute to evidence.
And hence the evidence base is lop-sided.
Whilst in the midst of an episode of illness, patients and families may be “suffering guests” of our established institutions; but at other times they are warriors with deep expertise in living with illness. They stand willing to partner. Is it time to reframe the picture and move beyond inviting patients and families to ‘engage’, to embracing the expertise and thought diversity that patients and families bring? In turn, their contribution will not only strengthen the rigour and the validity of our evidence base, but it will also broaden and deepen our understanding of better health care.
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[4] The Guardian, 20 August 2015, “The power of the story: teaching doctors to ‘feel’ patient-centred”. Quote is from Margaret Murphy, parent of Kevin who was 21 years of age when he died in hospital in 1999. Margaret is now external lead of the WHO’s Patients for Patient Safety programme, a network of 400 patient safety champions from 52 countries with 19 collaborating organizations.
Laila Hallam is a Health Consumer Advisor, Sydney Local Health District, Honarary Affiliate, Centre for Disability Research and Policy (CDRP), the University of Sydney.
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If you enjoyed this blog post, you may also be interested to read:
The ‘good governance’ of evidence in health policy [Open Access]
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This post was originally published by Transforming Society on 11 May 2020.
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