Irene Carey

Understanding Symptoms in Patients with Advanced Chronic Kidney Disease Managed without Dialysis: Use of a Short Patient-Completed Assessment Tool

Background: It is often believed that patients with advanced chronic kidney disease (CKD) stage 4–5 have few symptoms, and that dying with renal disease is relatively symptom-free. But the symptom burden of patients managed conservatively (without dialysis), with potentially high levels of comorbidity and poor functional status, is unknown. This clinical audit evaluated the prevalence and severity of symptoms in conservatively managed CKD stage 4–5 patients. Methods: Symptom data was collected from all conservatively managed patients from 2 renal units referred to a new renal palliative care service over a 10-month period between April 2005 and January 2006. Data on symptom prevalence and severity was collected as part of their routine clinical care, using a modified version of the Patient Outcome Scale – symptom module (POSs). This patient-completed instrument identifies the presence and severity of 17 symptoms. Demographic data was also collected, including estimated glomerular filtration rate (eGFR) using the MDRD formula, primary renal diagnosis and comorbidity. Results: Symptoms were evaluated in 55 patients, with a mean age of 82 years (SD 5.5, range 66–96). eGFR ranged from 3 to 30 ml/min (median 11, mean 12.75). In patients with CKD stage 4–5, managed without dialysis, the symptom burden is high. The most prevalent symptoms reported were weakness (75%), poor mobility (75%), poor appetite (58%), pain (56%), pruritus (56%) and dyspnoea (49%). The total number of symptoms each individual patient experienced ranged from 1 to 14 (median 7, mean 6.8). Symptoms were frequently reported as moderate, severe, or overwhelming; in 54% of patients with poor mobility, 48% with weakness, 30% with itching, 31% with anorexia and 27% with pain. No significant association was demonstrated between the number of symptoms experienced and either severity of renal disease or comorbidity score. Conclusions: This structured clinical evaluation demonstrates the extent and severity of symptom burden in conservatively managed patients with CKD stage 4–5, and demonstrates the use of an appropriate clinical tool that can be used to assess the efficacy of treatment.

Thinking ahead – the need for early Advance Care Planning for people on haemodialysis: A qualitative interview study:

Background: There is a need to improve end-of-life care for people with end-stage kidney disease, particularly due to the increasingly elderly, frail and co-morbid end-stage kidney disease population. Timely, sensitive and individualised Advance Care Planning discussions are acceptable and beneficial for people with end-stage kidney disease and can help foster realistic hopes and goals. Aim: To explore the experiences of people with end-stage kidney disease regarding starting haemodialysis, its impact on quality of life and their preferences for future care and to explore the Advance Care Planning needs of this population and the timing of this support. Study design: Semi-structured qualitative interview study of people receiving haemodialysis. Interviews were analysed using thematic analysis. Recruitment ceased once data saturation was achieved. Setting/participants: A total of 20 patients at two UK National Health Service hospitals, purposively sampled by age, time on haemodialysis and symptom burden. Results: Themes emerged around: Looking Back, emotions of commencing haemodialysis; Current Experiences, illness and treatment burdens; and Looking Ahead, facing the realities. Challenges throughout the trajectory included getting information, communicating with staff and the ‘conveyor belt’ culture of haemodialysis units. Participants reported a lack of opportunity to discuss their future, particularly if their health deteriorated, and variable involvement in treatment decisions. However, discussion of these sensitive issues was more acceptable to some than others. Conclusion: Renal patients have considerable unmet Advance Care Planning needs. There is a need to normalise discussions about preferences and priorities in renal and haemodialysis units earlier in the disease trajectory. However, an individualised approach is essential – one size does not fit all.

The development and piloting of the REnal specific Advanced Communication Training (REACT) programme to improve Advance Care Planning for renal patients

Background: In recent years, the End-Stage Kidney Disease population has increased and is ever more frail, elderly and co-morbid. A care-focused approach needs to be incorporated alongside the disease focus, to identify those who are deteriorating and improve communication about preferences and future care. Yet many renal professionals feel unprepared for such discussions. Aim: To develop and pilot a REnal specific Advanced Communication Training (REACT) programme to address the needs of End-Stage Kidney Disease patients and renal professionals. Design: Two-part study: (1) development of the REnal specific Advanced Communication Training programme informed by multi-professional focus group and patient survey and (2) piloting of the programme. Setting/participants: The REnal specific Advanced Communication Training programme was piloted with 16 participants (9 renal nurses/health-care assistants and 7 renal consultants) in two UK teaching hospitals. Results: The focus group identified the need for better information about end-of-life phase, improved awareness of patient perspectives, skills to manage challenging discussions, ‘hands on’ practice in a safe environment and follow-up to discuss experiences. The patient survey demonstrated a need to improve communication about concerns, treatment plans and decisions. The developed REnal specific Advanced Communication Training programme was acceptable and feasible and was associated with a non-significant increase in confidence in communicating about end-of-life issues (pre-training: 6.6/10, 95% confidence interval: 5.7–7.4; post-training: 6.9/10, 95% confidence interval: 6.1–7.7, unpaired t-test – p = 0.56), maintained at 3 months. Conclusion: There is a need to improve end-of-life care for End-Stage Kidney Disease patients, to enable them to make informed decisions about future care. Challenges include prioritising communication training among service providers.

Improving care for patients whose recovery is uncertain. The AMBER care bundle

Introduction Despite preferences to the contrary, 53% of deaths in England occur in hospital. Difficulties in managing clinical uncertainty can result in delayed recognition that a person may be approaching the end of life, and a failure to address his/her preferences. Planning and shared decision-making for hospital patients need to improve where an underlying condition responds poorly to acute medical treatment and there is a risk of dying in the next 1–2 months. This paper suggests an approach to improve this care. Intervention A care bundle (the AMBER care bundle) was designed by a multiprofessional development team, which included service users, utilising the model for improvement following an initial scoping exercise. The care bundle includes two identification questions, four subsequent time restricted actions and systematic daily follow-up. Clinical impact This paper describes the development and implementation of a care bundle. From August 2011 to July 2012, 638 patients received care supported by the AMBER care bundle. In total 42.8% died in hospital and a further 14.5% were readmitted as emergencies within 30 days of discharge. Clinical outcome measures are in development. Conclusions It has been possible to develop a care bundle addressing a complex area of care which can be a lever for cultural change. The implementation of the AMBER care bundle has the potential to improve care of clinically uncertain hospital patients who may be approaching the end of life by supporting their recognition and prompting discussion of their preferences. Outcomes associated with its use are currently being formally evaluated.

Patient and carer experiences of clinical uncertainty and deterioration, in the face of limited reversibility: A comparative observational study of the AMBER care bundle

Background: Clinical uncertainty is emotionally challenging for patients and carers and creates additional pressures for those clinicians in acute hospitals. The AMBER care bundle was designed to improve care for patients identified as clinically unstable, deteriorating, with limited reversibility and at risk of dying in the next 1–2 months. Aim: To examine the experience of care supported by the AMBER care bundle compared to standard care in the context of clinical uncertainty, deterioration and limited reversibility. Design: A comparative observational mixed-methods study using semi-structured qualitative interviews and a followback survey. Setting/participants: Three large London acute tertiary National Health Service hospitals. Nineteen interviews with 23 patients and carers (10 supported by AMBER care bundle and 9 standard care). Surveys completed by next of kin of 95 deceased patients (59 AMBER care bundle and 36 standard care). Results: The AMBER care bundle was associated with increased frequency of discussions about prognosis between clinicians and patients (χ2 = 4.09, p = 0.04), higher awareness of their prognosis by patients (χ2 = 4.29, p = 0.04) and lower clarity in the information received about their condition (χ2 = 6.26, p = 0.04). Although the consistency and quality of communication were not different between the two groups, those supported by the AMBER care bundle described more unresolved concerns about caring for someone at home. Conclusion: Awareness of prognosis appears to be higher among patients supported by the AMBER care bundle, but in this small study this was not translated into higher quality communication, and information was judged less easy to understand. Adequately powered comparative evaluation is urgently needed.

Improving care for patients whose recovery is uncertain. The AMBER care bundle: design and implementation

Introduction Despite preferences to the contrary, 53% of deaths in England occur in hospital. Difficulties in managing clinical uncertainty can result in delayed recognition that a person may be approaching the end of life, and a failure to address his/her preferences. Planning and shared decision-making for hospital patients need to improve where an underlying condition responds poorly to acute medical treatment and there is a risk of dying in the next 1–2 months. This paper suggests an approach to improve this care. Intervention A care bundle (the AMBER care bundle) was designed by a multiprofessional development team, which included service users, utilising the model for improvement following an initial scoping exercise. The care bundle includes two identification questions, four subsequent time restricted actions and systematic daily follow-up. Clinical impact This paper describes the development and implementation of a care bundle. From August 2011 to July 2012, 638 patients received care supported by the AMBER care bundle. In total 42.8% died in hospital and a further 14.5% were readmitted as emergencies within 30 days of discharge. Clinical outcome measures are in development. Conclusions It has been possible to develop a care bundle addressing a complex area of care which can be a lever for cultural change. The implementation of the AMBER care bundle has the potential to improve care of clinically uncertain hospital patients who may be approaching the end of life by supporting their recognition and prompting discussion of their preferences. Outcomes associated with its use are currently being formally evaluated.

Supporting patients with uncertain recovery: the use of the AMBER care bundle in an acute hospital

Objectives Patients who are deteriorating, with uncertain recovery and with a short prognosis often have complex needs. The AMBER care bundle systematically manages these patients by promoting consistent communication and care planning. To describe how the AMBER bundle is applied in a UK hospital. To identify factors affecting the use of the AMBER bundle in patients who subsequently died. To gain preliminary data with regard to potential markers of deterioration in groups less frequently supported by AMBER Methods Retrospective review of electronic case notes for all deaths over 11 months on five inpatient wards where AMBER was implemented. Results N=149. Median age 80, IQR 72–87. Admission diagnoses: cancer (25%), non-cancer (31%), multimorbidity (44%). 38% were supported by AMBER. Patients with cancer were more frequently supported by AMBER (62% vs 30% p<0.001). Illness trajectory was defined a priori as ‘predictable gradual’ (40%), ‘predictable rapid’ (22%), ‘unpredictable’ (21%) or ‘sudden death’ (17%). ‘Predictable gradual’ deterioration resulted in more frequent support by AMBER (62% vs 21%, p<0.001). Patients were supported by AMBER after median 10 days of admission (IQR 5–17 days), and died median 9 days later (IQR 3–15 days). Patients with multimorbidity or unpredictable deterioration were less frequently supported by AMBER. Potential markers of deterioration were acute kidney injury, delirium, falls and comorbidity. Conclusions The use of the AMBER care bundle is affected by illness trajectory and diagnosis. Future work should clarify predictors of deterioration in patients with an unpredictable course.

Seeing is believing – healthcare professionals’ perceptions of a complex intervention to improve care towards the end of life: A qualitative interview study:

Background: Methods to improve care, trust and communication are important in acute hospitals. Complex interventions aimed at improving care of patients approaching the end of life are increasingly common. While evaluating outcomes of complex interventions is essential, exploring healthcare professionals’ perceptions is also required to understand how they are interpreted; this can inform training, education and implementation strategies to ensure fidelity and consistency in use. Aim: To explore healthcare professionals’ perceptions of using a complex intervention (AMBER care bundle) to improve care for people approaching the end of life and their understandings of its purpose within clinical practice. Design: Qualitative study of healthcare professionals. Analysis informed by Medical Research Council guidance for process evaluations. Setting/participants: A total of 20 healthcare professionals (12 nursing and 8 medical) interviewed from three London tertiary National Health Service hospitals. Healthcare professionals recruited from palliative care, oncology, stroke, health and ageing, medicine, neurology and renal/endocrine services. Results: Three views emerged regarding the purpose of a complex intervention towards the end of life: labelling/categorising patients, tool to change care delivery and serving symbolic purpose indirectly affecting behaviours of individuals and teams. All impact upon potential utility of the intervention. Participants described the importance of training and education alongside implementation of the intervention. However, adequate exposure to the intervention was essential to witness its potential added value or embed it into practice. Conclusion: Understanding differing interpretations of complex interventions is essential. Consideration of ward composition, casemix and potential exposure to the intervention is critical for their successful implementation.

Postscript to the Liverpool Care Pathway

Following the withdrawal of the Liverpool Care Pathway (LCP) in 2013, concerns were expressed about clinician confidence and competence to plan and deliver end-of-life care (EoLC).1 The uncertainty inherent to clinical decision-making is recognised as an additional challenge. Good role modelling and work-based learning opportunities may support implementation of future supportive EoLC tools.1 We need to strengthen the evidence base underpinning practice2 and apply the latest evidence. National policy3 4 from the Neuberger review of the LCP also calls for individualised care plans, training for staff and collaborative work with local palliative care teams—underpinned by the Five Priorities for Care of the Dying Person.4 In response to these recommendations and locally identified needs (established via staff surveys and audit), we developed and implemented a quality improvement initiative within our …