For anyone interested in the patient experience, as I am, Kathy Torpie’s book Losing Face is an instructive and illuminating read.
In 1994, Kathy’s live was turned upside-down when her facial skeleton was shattered as a result of a head-on collision with a drunk driver. She was left with a swollen, disfigured face that she didn’t recognise, and a lost sense of self-identity. Losing Face is the story of her personal journey through hospital and the recovery process. In it, Kathy talks about the physical, social and emotional impacts of her experience.
With her sense of identity already shaken by the trauma to her face and body, Kathy’s experience as a patient left her feeling even more estranged from her sense of self. She writes of feeling that she had lost her identity – that Kathy Torpie had been replaced by a patient number.
Kathy’s insights into how the healthcare system and the care she received from some individual clinicians made her feel like a non-person should be required reading for every healthcare professional.
One of the key lessons from the book is the need to recognise the patient as a whole person, not simply as a medical condition. Kathy points out that a compartmentalised medical system arranged into specialties is poorly equipped to deal with more than one part of a patient at a time. It can respond only ‘… by dividing individuals into categories according to symptom and dealing with them accordingly, like a broken machine’ (p. 43).
As a result, Kathy had to deal with a bewildering array of specialists, all of whom were involved in her care, but none of whom seemed to coordinate their efforts, either with each other or with other hospital services. Meals, sleep and visits from friends were frequently disrupted; aides arrived to take her to different departments at the same time, and she was often left waiting for long periods before and after appointments. She found these things exhausting.
Worse, a series of medical mishaps caused by poor coordination of care and lack of empathy shook Kathy’s confidence in her caregivers and forced her to be constantly on guard against oversights and medical harm at a time when she was at her most vulnerable. Many of these incidents could have been avoided if staff had really listened to Kathy and engaged with her as an active partner in care.
In one incident, a broken bone in her wrist was overlooked for ten weeks while she was urged to do flexibility exercises, despite her frequent complaints about the pain, because staff had failed to take note of her radiology report. In another, a night nurse refused to give Kathy relief for her itching back, which was later diagnosed as scabies, because she was ‘too busy’.
Throughout her care, Kathy was desperate to be involved, but her efforts to make her voice heard only resulted in her being labelled as a ‘difficult patient’.
After months of trying and failing to protect her privacy, dignity and individuality, the emotional toll of her helplessness and isolation caused Kathy to sink into depression. She describes the difference it made it her condition when a new house surgeon was rotated to her ward. This one was different – she listened, and for the first time Kathy had a chance to be actively involved in her treatment as an intelligent, capable adult. She writes, ‘Of the many experiences I had in hospital, those few weeks of personal, practical and empowering care from this house surgeon turned me around emotionally. And that had a powerful impact on my physical recovery’ (p. 82).
Kathy’s story struck a chord with me, not only because I’m deeply involved in patient experience work at Counties, but because I too have experienced healthcare through a patient’s eyes when I was admitted to hospital with a perforated bowel. I spent six weeks as an inpatient, and have had on-going involvement with the healthcare system since. Many of Kathy’s experiences resonate with my own.
What Counties staff can learn from Kathy’s book is the need to be aware of the whole experience patients go through. Consider their full wellbeing. Involve them actively in their care, and understand that every interaction between you will affect how well they recover and how they engage with the next clinician. Include patients in conversations about them, even if they’re unable to fully understand or participate – don’t make them feel isolated from discussions that directly involve them. Acknowledge their expertise about how their own body feels and works. Above all – listen.