The five patient case studies following PIE implementation were purposively selected to include those who were frailer, as critical exemplars of patients perceived to be more challenging and therefore particularly testing of progress made. All had limited ability to communicate verbally, although this varied depending on time of day, and they deteriorated over time.
Experience of care
Similar to baseline, relatives assessed care as very good: staff were described as kind and responsive, and available to discuss the carer’s problems and concerns. Emily’s daughter visited her mother daily: “If I only mention something to the nurses, its dealt with”. Acknowledged too was the significance of staff caring for her mother: “she doesn’t take much in. I don’t think they could do
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Observation and conversation with patients revealed a deteriorating trajectory of inter-related physical and cognitive impairment. Frail when first encountered, these people alternately conveyed frustration at others not responding to them in relation to their conception of reality; and derived pleasure in the moment from encounters with others, including the researcher.
It was in respect of these patients, that understanding of, and emotional engagement with them ‘in their world’ was not consistent across staff on either ward, even though they generally acted with warmth and kindness in carrying out day to day tasks.
Dorette, who was French in origin had lived in England for decades; she was often distressed, wanting to get to the train station and had reverted to her first language. She called out frequently to be taken to ‘Gare St. Lazare’, expressing anger and frustration in absence of a response. Whereas some staff would talk with her about her life; others would ignore her. She evinced pleasure when staff spoke to her in French, smiling, apparently at their faltering efforts (including the site researcher’s) with the language. Other times, she became angry when asked to do a task (for example, changing her clothes when wet) as it would make her late for the train. Annie often shouted out in protest during routine observations or personal care work; but responded to being comforted by touch – holding her hand and stroking her hair – when distressed. Connie often expressed her desire to go home, getting off the ward and catching a bus back home. When a staff member sat with her, she talked animatedly about the place where she grew up and had spent all her life and to where she talked of returning; she never spoke of the care home she had lived in for some time.
From observation, staff at follow-up appeared more responsive to patients embodied action as meaningful and sought to address care needs. Thus, Emily, exemplifying the ‘uncooperative’ patient, repeatedly tried to pull out the IV line (for hydration); scratched staff when angry; and was reluctant to eat and drink when assisted. Staff would sit with her, trying her out with fortified drinks and dessert being the only things they discovered she would touch. As she transitioned to being unresponsive and sleeping most of the time, the work of ‘care’ including care relating to nutrition, hydration and elimination became increasingly challenging to carry out; comfort through touch seemed all important. For these patients, responding cognitively and emotionally to them ‘in their world’ also enabled completion of care tasks.
These patients, with the exception of Connie, did not take part in mealtimes as ‘social events’ – they were either too ill and in bed (Emily) or did not wish it. Connie was the exception; also enjoying being taken to the Dementia Café. She was joyous at the music; joined in the singing; and conveyed how much she loved being around children who had come along from the local primary school.
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Returning to the ward, she became preoccupied again with getting the bus home and being taken to the bus stop.
These illustrative accounts attest to the challenge of working with patients whose hold on a ‘shared reality’ diminished;109 even while moments of pleasure and joy were experienced, facilitated through sensory and emotional engagement with others.
Declining trajectory: physical and cognitive
Cognitive deterioration among these patients was inter-linked with physical decline. Within a week of her operation, Dorette was being assisted to walk with a Zimmer frame and described as ‘medically fit’ for discharge on the ward round. Ten days subsequently, she was ‘poorly’, receiving blood transfusions, indicated she was very tired and wanting to sleep all the time. In conversation with the researcher she expressed a wish that she “had wings” to take her home. Unable to stand, even with assistance, she lay in bed or was helped to sit on the chair by the bed. Repeated attempts by therapists to get her up and moving failed, further contributing to physical deterioration. This pattern in different forms applied to other patient case studies. Activities initiated through PIE: communal meal-times; and opportunities for patient to patient and staff/patient interaction, occurred around them and they were too ill to take part. Emily and Annie died in hospital; Dorette and Beatrice were newly admitted to long term care following 50 and 73 days hospital stay respectively. Connie and Beatrice were still on the ward at the conclusion of fieldwork. It was planned that Beatrice would go to a nursing home when a suitable place was found; a different care home placement was being sought for Connie; she was perceived as too dependent to return to her previous care home.
In summary, at each time point, patients (and close relatives) perceived staff as warm, caring and responsive. Patients were ‘forgiving’ of staff not always being available when needed, and spoke of choosing an opportune moment to ask for assistance. Ethnographic observation suggested that apart from busy periods, patients were responded to quickly on both wards when they expressed a need unlike on some other study wards. For relatives, that staff made themselves available, heard their concerns and addressed them, inculcated trust in the care provided to their relative.
Observation indicated two aspects of practice which changed as a result of PIE with positive impact on patient experience: enhanced sociability and sense of well-being from communal mealtimes; and pleasure and shared memories evoked by listening together at music sessions. For staff, these activities provided opportunities to acquire personally meaningful knowledge of the person to make sense of their behaviour and action and provide appropriate emotional support; realising the meaning of a ‘person-centred’ approach in their practice. For people with severe dementia, this
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‘person-focused’ practice was more inconsistent within staff teams. Although all staff engaged with such patients with warmth and care, responding to the emotional needs of those whose sense of a shared reality had diminished required a level of knowledge and skill not shared by everyone – as well as time.