"It was a real eye-opener": Shadowing patients at the end of life to improve their experience of care
Joanna Goodrich, Bev Fitzsimons
The Point of Care Foundation
Background: Patient and family experience of end of life care is inconsistent and needs improvement and has been identified as a priority by NHS England. 19 healthcare teams from across England took part in a collaborative improvement programme ‘Living well to the very end’, to improve the experience of end of life care for patients, families and staff. The programme ran between 2017 and 2018 and was one in a series run by The Point of Care Foundation’s Sweeney programme.
The teams were not palliative specialists and were working with patients at the end of life in a variety of settings including acute hospital wards, primary care, community and mental health services and nursing and care homes. The premise of the ‘Living Well’ programme was that in order to improve patients’ experience it is necessary to understand it better from their perspective, and that an experiential method like patient shadowing may achieve this in a way other data collection methods cannot.
Patient shadowing is a technique intended to help to understand care from the patient’s point of view and so focus improvement efforts appropriately. This study aimed to explore how shadowing was carried out, its acceptability for staff, and the impact it had for staff, and consequent changes made for patients.
Method: As part of the author’s professional doctorate, semi-structured interviews were conducted with 20 programme participants, recruited as a purposive sample. They had a range of professional backgrounds and work settings. Data were analysed using thematic analysis.
Initial anxieties about shadowing appeared to be unfounded; although for some it was an uncomfortable experience to step out of role, most found it enjoyable and rewarding.
Programme participants adopted different styles of shadowing (broadly intervening and non-intervening)
Participants reported increased understanding (and in some cases surprise) of the experience of care, and some described emotional responses to the experience of being with patients in this way.
Both these factors motivated participants to make improvements to the care of patients and families.
Observations made when shadowing were influenced by personal factors and were not always understood as subjective.
Patients and families generally appreciated being shadowed, as a demonstration of attention to their experience.
Improvements to the environment of care were suggested and made, both in terms of physical environment and processes, and to the way staff interacted with patients. These included reviewing the policy of putting patients at end of life into side rooms, the provision of a special food menu, car parking and beds for family members, and revising the approach to advance care planning conversations.
Implications: The challenges to undertaking shadowing were sometimes practical (time, consent) but were predominantly emotional. Preparation for shadowing should recognise this, and support should be put in place. Team debrief after shadowing is essential to compare shadowing notes and to be reflexive when identifying areas for improvement, understanding that observations are subjective. Patient shadowing increases knowledge and understanding of the experience of patients and families and can increase motivation to make improvements to care. Shadowing is an acceptable and effective technique for patient-centred quality improvement.
Patient and ophthalmic care provider perceptions of cataract surgery outcome: Findings from an exploratory qualitative study
Christalla Pithara(1), Daisy Elliott(2), Fiona Fox(1), John Sparrow(3), Mariusz Grzeda(2), Christopher Liu(4), Andrew Frost(5), Jenny Donovan(2)
(1)NIHR ARC West, (2)University of Bristol, (3)University of Bristol / Bristol Eye Hospital, (4)Brighton and Sussex Medical School / Sussex Eye Hospital, (5)Torbay Hospital
Background: Cataract is an extremely common, potentially blinding age-related condition that can be treated through cataract surgery. Currently in the UK decisions on which patients should be offered cataract surgery and assessments of surgery outcome, are primarily based on visual acuity measurements. Cataract surgery has high success rates, but in a minority of cases patients can report dissatisfaction and/or worse visual ability after surgery despite visual acuity improvements post-operatively. Little is known about patients’ decisions to have cataract surgery, their expectations of surgery outcome, and whether these match clinician assessments of surgery outcome.
This study aimed to explore patient and provider perceptions of cataract surgery outcome, expectations of surgery, and understand areas of discordance between them.
Methods: This qualitative study was carried out as part of a NIHR Grant Funded Programme for Applied Research and was based in four hospital sites in the South West of England. Face-to-face or telephone interviews with patients who presented with “mismatched perceptions of outcome” i.e. patients were dissatisfied with surgery outcome even though surgery was successful and resulted in improved visual acuity, or patients were satisfied with outcome even though surgery resulted in complications and/or decrease or no improvement in visual acuity. This recruitment strategy allowed for interviews to focus on patients’ perceptions of outcome, compare with objective outcome assessments, and explore reasons for discordance.
Face to face or telephone interviews were also carried out with ophthalmologists, ophthalmic nurses and optometrists involved in post-operative care, and who had experiences with patients who presented with mismatched perceptions of outcome.
Recordings were transcribed verbatim, anonymised, and analysed using thematic analysis.
Results: Interviews with seven patients and nine ophthalmic care providers were carried out.
Patients’ perception of outcome was influenced by functional aspects of their vision and its impact on vision related quality of life. The patient's perceptions of vision-related quality of life were considered by care providers when assessing the appropriateness of surgery for individual patients; but the outcome measured in post-operative assessments to define surgery success was visual acuity.
Factors involved in discordant perceptions of outcome were: (1) medical technology limitations e.g. capturing unintended intraocular lens side-effects, capability of measuring and explaining the full range of patient optical experiences; (2) patient-provider communication: most often patients’ experiences and expectations of post-operative visual ability were not addressed during patient counselling. This could result in unrealistic expectations and surgery misconceptions, and precluded surgery-related decisions to be informed by patients’ preferences and experiences e.g. when considering lens power and refractive goals; (3) patient characteristics: clinical profile complexity e.g. presence of visual co-morbidities, pre-surgery visual ability, and in some cases personality were thought to influence perceived outcomes.
Individualised advice on the risks and potential outcomes of surgery was believed to improve decision-making for both patients and clinicians, and address mismatched outcome expectations. Several barriers such as time, complex care pathways, and the challenges in adopting new technologies and ways of working, were thought to impede on efforts to address current gaps.
Implications: Findings highlight the importance of patient-centred care and shared decision-making to cataract surgery outcomes. Incorporating appraisals of vision-related quality of life alongside visual acuity in pre- and post-operative assessments can support shared decision-making and outcome measurement, and facilitate patient-centred care.
A case of a hidden or misunderstood problem: How representative are national performance indicators for operation cancellations in English NHS?
Buddhika S. W. Samarasinghe(1), Nathan Proudlove(2), Kieran Walshe(2)
(1)Alliance Manchester Business School, The University of Manchester, (2)Alliance Manchester Business School, University of Manchester
Background: On The Day Surgery(OTDS)cancellations are a substantial and long-standing problem for healthcare organisations all over the world. OTDS cancellations, which occur when a scheduled surgery is cancelled on the day of a patient admission or surgery, involve a significant loss of revenue and resources for hospitals and have substantial psychological and financial implications for patients and carers. In England, two performance indicators cover operation cancellations: figures for quarterly elective operation cancellation for hospital reasons, and rebooking figures (within 28 days) for patients’ operations cancelled for hospital reasons. The Department of Health (DoH) in England has claimed that the percentage of elective operation cancellation rates for hospital reasons is around 1%. Evidence suggests that most OTDS cancellation are preventable, but there appears to be little focus placed on OTDS cancellations by the UK research community.
Given that there are no single-centre or multi-centre studies of large NHS trusts in England to understand OTDS cancellations, this exploratory study aims to contribute to the understanding of variations in OTDS cancellation rates (OTDS CRs) in NHS trusts. This study aims to identify similarities, contrasts and patterns in NHS acute care trusts’ OTDS CRs.
Method: The study analysed 7,230 surgery cancellation episodes and 56,940 completed surgeries from two large NHS trusts that treat elective and emergency patients. Patient-level cancellation data and completed surgery data, collected between April 2017 and March 2018, were extracted from hospital information systems. Data about reported cancellation reasons and categorisation was also collected from five other NHS trusts.
Results: The overall OTDS CRs of adult patients(>= 18 years) range from 11.2% (3,373/30,199) to 14.4% (3,857/26,741). Based on the two NHS trusts’ cancellation categorisation, each NHS trust reported 37.7% (1,272/3,373) and 34.6% (1,337/ 3,857) in adult OTDS CRs respectively for hospital reasons (for example, shortage of beds, unavailability of staff or lack of theatre time). For non-hospital reasons (for example, patients not being clinically ready for surgery or not attending surgery) the relevant percentages were reported as 62.3% (2,101/3,373) and 65.4% (2,520/3,857).
The reported cancellations reason among participating six trusts varies from 15 to 76 and used subjective reasons to record cancellations highlighting substantial variation in reporting practices and categorisation across NHS trusts which can impact on validity and reliability of both national operation cancellation indicators.
Implications: The two NHS trusts recorded more than one in ten OTDS cancellations. A higher cancellation percentage for non-hospital reasons is surprising and suggests that OTDS cancellations are a prevalent problem that links to care planning.
The OTDS cancellation figures reported due to hospital reasons for each NHS trust in our analysis and the nationally reported cancellation figures appeared to be close. The differences in DoH reported CRs due to hospital reasons, and our study analysis appears to boil down to the use of different denominators to calculate CRs. We calculate OTDS CRs as the number of surgery cancellations divided by the total completed surgeries while DoH calculation gives the impression of using a very high denominator close to the total number of scheduled First Finished Consultant Episodes (FFCEs).
In the complex hospital setting, finding the real causes of unwanted outcomes such as OTDS cancellation can be challenging but vital for prevention. Performance indicators relying on incident categorisation can lead to many limitations. Lack of representative performance indicators at national and NHS trust level, and variations in reporting and categorisation OTDS cancellations make OTDS CRs a hidden problem that continues to cause significant psychological problems for patients and carers and result in financial and resource losses to the hospital.
Behind the veil of silence: understanding adverse outcomes of psychotherapy
Lavanya Thana(1), Tim Weaver(2), Mike Crawford(1)
(1)Imperial College London, (2)Middlesex University
Background: Patient safety in medical health settings continues to be a growing area of inquiry (Vincent, 2010; Vincent & Amalberti, 2015), however this issue has yet to be prioritised in relation to talking treatments (Parry, et al., 2016). Until recently, there has been a paucity of empirical work examining harmful effects of psychotherapy. This is surprising given that negative effects are common, affecting one in 20 people who receive psychotherapy in the NHS (Crawford et al., 2016). This lack of attention can be explained in part by meso- and macro- level reluctance to consider these phenomena (Thana, 2018). As such, there is a dearth of previous research, particularly from the perspectives of stakeholders (Thana, 2018). Thus, the purpose of this inquiry was to understand negative outcomes by exploring stakeholder experiences. The aims of this work were to examine personal, interpersonal, and contextual factors that are associated with these outcomes, and to explore how these experiences occur, what constitutes this type of outcome, and how therapists manage them in clinical practice.
Method: A Constructivist Grounded Theory (Charmaz, 2006, 2014) framework was employed to address the research aims and to generate a conceptual model of these phenomena. Twenty-three service users and 21 therapists from a range of NHS services participated in in-depth interviews and focus groups. Interviews were audio recorded and transcribed verbatim. Data were subjected to constant comparative analysis (Glaser & Strauss, 1967) throughout the iterative data collection phases.
Results: The findings suggest that service users experience profound and enduring negative consequences of psychotherapy, including hopelessness, deterioration of- and/or emergence of new- symptoms, interpersonal problems, as well as self-harm and suicidal ideation. A core component of these outcomes is a ‘breach’ of a fragile sense of faith. The data indicate that service users were forced to conform to the expectations of a conditional ‘system’, and in turn, often felt pathologised, misunderstood, and unheard. In addition, they seem to face predicaments in challenging the authority of their therapists, as well as in disclosing their negative experiences. From the therapists’ perspective, the data indicate challenges in identifying these effects and grappling with the associated risk factors. These factors, as well as the therapist’s internal dissonance, contribute to a ‘distorted lens’, which appears to prevent the detection of harm. Furthermore, despite their reports of fearing formal complaints, which they seem to conflate with negative outcomes, only two percent of all services users screened for this study reported filing a complaint about their experience. Finally, the emergent categories were synthesised, generating a conceptual model, which suggests a culture of minimising harm in various ways, particularly through individual and service level power inequity, repudiation and silence.
Implications: The findings elucidate prior conceptual anomalies, particularly regarding therapist’s difficulty in detecting harm, and move forward understanding of the potential mechanisms through which harm is caused. This work has useful clinical implications, particularly with regard to the training, practice, and supervision of therapists. Benefits of this work could help therapists detect when a patient may be at risk of experiencing a negative outcome, take steps to prevent them from occurring (e.g. by facilitating interim disclosures), and as such, reduce the occurrence.
Furthermore, this work lends its ‘voice’ to other calls (Lambert, 2015) for a paradigm shift in thinking about these types of harms. Greater acknowledgement, awareness and research investigating how to better respond to these outcomes and to tackle the disconcerting culture in which they exist has potential not only improve patient experience, but ultimately, safety. This can also help to reduce the personal and economic consequences, and to inform policy and service level guidance.