Wendy Prentice

Development and evaluation of the feasibility and effects on staff, patients, and families of a new tool, the Psychosocial Assessment and Communication Evaluation (PACE), to improve communication and palliative care in intensive care and during clinical uncertainty

BackgroundThere are widespread concerns about communication and support for patients and families, especially when they face clinical uncertainty, a situation most marked in intensive care units (ICUs). Therefore, we aimed to develop and evaluate an interventional tool to improve communication and palliative care, using the ICU as an example of where this is difficult.MethodsOur design was a phase I-II study following the Medical Research Council Guidance for the Development and Evaluation of Complex Interventions and the (Methods of Researching End-of-life Care (MORECare) statement. In two ICUs, with over 1900 admissions annually, phase I modeled a new intervention comprising implementation training and an assessment tool. We conducted a literature review, qualitative interviews, and focus groups with 40 staff and 13 family members. This resulted in the new tool, the Psychosocial Assessment and Communication Evaluation (PACE). Phase II evaluated the feasibility and effects of PACE, using observation, record audit, and surveys of staff and family members. Qualitative data were analyzed using the framework approach. The statistical tests used on quantitative data were t-tests (for normally distributed characteristics), the χ2 or Fisher’s exact test (for non-normally distributed characteristics) and the Mann–Whitney U-test (for experience assessments) to compare the characteristics and experience for cases with and without PACE recorded.ResultsPACE provides individualized assessments of all patients entering the ICU. It is completed within 24 to 48 hours of admission, and covers five aspects (key relationships, social details and needs, patient preferences, communication and information status, and other concerns), followed by recording of an ongoing communication evaluation. Implementation is supported by a training program with specialist palliative care. A post-implementation survey of 95 ICU staff found that 89% rated PACE assessment as very or generally useful. Of 213 family members, 165 (78%) responded to their survey, and two-thirds had PACE completed. Those for whom PACE was completed reported significantly higher satisfaction with symptom control, and the honesty and consistency of information from staff (Mann–Whitney U-test ranged from 616 to 1247, P-values ranged from 0.041 to 0.010) compared with those who did not.ConclusionsPACE is a feasible interventional tool that has the potential to improve communication, information consistency, and family perceptions of symptom control.

End of life care in the acute hospital setting

An update of the Liverpool care pathway does much to tackle recent criticisms

Methicillin-resistant Staphylococcus aureus infection in palliative care

Our objective was to assess the impact of methicillin-resistant Staphylococcus aureus (MRSA) infection in palliative care. The study was conducted at three hospices in south London, totalling 118 beds, and the following two methods were used. Firstly, a retrospective review of the notes of patients who were known to be MRSA positive at admission or were subsequently found to be MRSA positive was taken. Secondly, a prospective study of factors influencing bed occupancy in one hospice was conducted. The proportion of admissions who were MRSA positive ranged from 4% to 8% in the three hospices. Seven of the 43 patients who had MRSA suffered clinically significant infections. Risk factors for colonization and bacteraemia were similar to the general population. Sites of infection were variable and multiple and treatment regimes for eradication were variable, with varying outcomes. MRSA infection appeared to delay admission because of the need for single rooms, of which there are few. Time spent cleaning rooms after discharge or death also reduced the number of available beds. It was concluded that MRSA infection is associated with significant morbidity in a small number of palliative care patients. Beds unavailable because of MRSA should be considered in bed occupancy figures, otherwise bed occupancy may appear artificially low. The psychological and financial impact of the infection in palliative care patients needs further evaluation.

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.

'It doesn't do the care for you': a qualitative study of health care professionals' perceptions of the benefits and harms of integrated care pathways for end of life care

Objectives To understand healthcare professionals’ perceptions of the benefits and potential harms of integrated care pathways for end-of-life care, to inform the development of future interventions that aim to improve care of the dying. Design Qualitative interview study with maximum variation sampling and thematic analysis. Participants 25 healthcare professionals, including doctors, nurses and allied health professionals, interviewed in 2009. Setting A 950-bed South London teaching hospital. Results 4 main themes emerged, each including 2 subthemes. Participants were divided between (1) those who described mainly the benefits of integrated care pathways, and (2) those who talked about potential harms. Benefits focused on processes of care, for example, clearer, consistent and comprehensive actions. The recipients of these benefits were staff members themselves, particularly juniors. For others, this perceived clarity was interpreted as of potential harm to patients, where over-reliance on paperwork lead to prescriptive, less thoughtful care, and an absolution from decision-making. Independent of their effects on patient care, integrated care pathways for dying had (3) a symbolic value: they legitimised death as a potential outcome and were used as a signal that the focus of care had changed. However, (4) a weak infrastructure, including scanty education and training in end-of-life care and a poor evidence base, that appeared to undermine the foundations on which the Liverpool Care Pathway was built. Conclusions The potential harms of integrated care pathways for the dying identified in this study were reminiscent of criticisms subsequently published by the Neuberger review. These data highlight: (1) the importance of collecting, reporting and using qualitative data when developing and evaluating complex interventions; (2) that comprehensive education and training in palliative care is critical for the success of any new intervention; (3) the need for future interventions to be grounded in patient-centred outcomes, not just processes of care.

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.

Palliative care in end‐stage liver disease: Time to do better?

Optimal involvement of palliative care (PC) services in the management of patients with decompensated cirrhosis and end‐stage liver disease (ESLD) is limited. This may result from both ignorance and the failure to recognize the spectrum and unpredictability of the underlying liver condition. Palliative care is a branch of medicine that focuses on quality of life (QoL) by optimizing symptom management and providing psychosocial, spiritual, and practical support for both patients and their caregivers. Historically, palliative care has been underutilized for patients with decompensated liver disease. This review provides an evidence‐based analysis of the benefits of the integration of palliative care into the management of patients with ESLD. Liver Transplantation 24 961–968 2018 AASLD.

Easing the transition: Acceptability and safety of the 50-mL syringe pump in the acute general hospital setting

The millimetre-calibrated ambulatory syringe driver was originally used in childhood thalassaemia patients in the 1970s. This was later extended to patients requiring palliative care.1,2 Since then in the United Kingdom, there has been a perception that the use of large 50-mL syringe driver pumps is unacceptable to patients and families, particularly in the palliative care setting. Subcutaneous syringe drivers are now common practice worldwide for symptom control both in the acute hospital setting and in hospices and ongoing home care.3 In December 2010, the National Patient Safety Agency (NPSA) in the United Kingdom issued a rapid response report alert (NPSA/2010/RRR019),4 recommending all National Health Service (NHS) institutions to develop plans to switch from millimetreto millilitre-calibrated syringe drivers by December 2011, with full implementation of a switch to an alternative by December 2015. This was as a result of 8 deaths and 167 non-fatal errors associated with ambulatory syringe drivers between 2005 and 2010. Since all NHS trusts were required to remove the millimetre-calibrated syringe drivers from inpatient use, a working group was formed in order to agree a Trust-wide response for our acute hospital. The working group included members of the palliative care team, head of nursing for palliative care and oncology, and members of the Trust Medical Equipment Department who were fully versed with all the specifications of alternative pumps. It was decided that an immediate switch to the use of 50-mL nonambulatory syringe drivers was to be instigated to minimise risk. This was in part in response to the requirement of the NPSA alert but in part due to the fact that nursing staff Trust-wide were confident using the 50-mL non-ambulatory syringe drivers, and numerous adverse events had been previously raised in relation to the use of the millimetrecalibrated ambulatory pumps. The non-ambulatory 50-mL syringe drivers are already in use in all acute hospitals for alternative indications (e.g. for the delivery of insulin infusions). Given the paucity of evidence to support the claim that 50-mL syringe driver pumps are unacceptable to patients and families, we identified that it was important to assess the impact this change in practice had on patients, families and staff. This information would also inform future decision-making in relation to the purchase of alternative syringe driver pumps. We therefore set out to assess patient, family and staff satisfaction with using 50-mL nonambulatory syringe drivers and the number of adverse events associated with their use. All patients who were started on a syringe driver for palliation between September 2011 and February 2012 were included in our prospective audit. Patients were excluded if they died, or syringe driver was discontinued, before data collection. The audit protocol was registered, discussed and approved by the Trust audit department. No ethics approval was obtained as this was classified as an audit of practice. A patient, family and staff satisfaction scale was designed according to the Trust audit department recommendations. Information about the patients’ diagnoses, general demographics and Karnofsky score (from 0 (death) to 100 (perfect health)) was recorded. Patient, relative and staff satisfaction was assessed within 24 h of syringe driver initiation using a four-point satisfaction scale, where 1 = poor overall satisfaction and 4 = very good overall satisfaction. The data were analysed using analysis of variance (ANOVA) with post hoc Bonferroni corrections and Pearson’s correlation coefficient. In total, 135 patients were included. The mean age of the patients was 66 years (standard deviation (SD) = 17). The mean time on the syringe driver was 5.4 days (SD = 5.9 days). The mean Karnofsky score was 27 (SD = 19). Of the patients, 24% had a haematological diagnosis, 35% had a solid tumour diagnosis and 41% had non-tumour diagnoses. The patients with haematological diagnoses had significantly higher mean Karnofsky scores (mean = 45, SD = 19.1) than the patients with solid tumour (mean = 26, SD = 14.5, p < 0.001) and non-tumour diagnoses (mean = 17, SD = 8.3, p < 0.001). We obtained satisfaction scores from 70% of nursing staff, 24% of relatives and 34% of patients. The mean satisfaction scores of the patients, nursing staff and relatives were 2.6 (SD = 0.78), 3.1 (SD = 0.75) and 2.9 (SD = 0.79), respectively. 504253 PMJ28110.1177/0269216313504253Palliative MedicineClark et al. 2013