Maureen Gambles

Benchmarking: a useful tool for informing and improving care of the dying?

ObjectiveThe objective of this study was to evaluate the utility of participating in two benchmarking exercises to assess the care delivered to patients in the dying phase using the Liverpool Care Pathway for the Dying Patient (LCP).DesignThe study uses questionnaire evaluation of the benchmarking process assessing the quality/usefulness of: sector feedback reports, individual feedback reports and the workshop element.SettingHealthcare professionals representing hospital, hospice and community settings.ParticipantsSixty-two out of 75 potential participants (83%) returned completed questionnaires.Main outcome measureA study-specific questionnaire was administered as part of the final workshop element of the benchmarking exercise. The questionnaire contained a mixture of ‘Likert’-type responses and open-ended questions.ResultsParticipants from all sectors reported that the feedback reports contained the right amount and level of data (82–100%), that they were easy to understand (77–92%) and that they were useful to the organisation (94–100%). Respondents particularly valued the opportunity to discuss more fully the results of the benchmark and to network and share elements of good practice with other attendees in the workshops. Participants from the hospital sector identified changes in practice that had occurred as a result of participation.ConclusionsUsing comparative audit data that are readily available from the LCP and using workshops to discuss the findings and plan future care was perceived as a valuable way in which to explore the care delivered to dying patients in a variety of settings.

How is agitation and restlessness managed in the last 24 h of life in patients whose care is supported by the Liverpool Care Pathway for the Dying Patient

Background Guidance regarding the patient centred management of agitation and restlessness reinforces the importance of considering underlying causes, non-pharmacological approaches to treatment and judicious use of medications titrated to patient need. In contrast, recent reports in the literature suggest that the practice of continuous deep sedation until death is prevalent in the UK. Aim To use data from the National Care of the Dying Audit - Hospitals (NCDAH) to explore the administration of medication for management of agitation and restlessness in the last 24 h of life. Methods Hospitals submitted data from up to 30 consecutive adult patients whose care in the final hours/days of life was supported by the Liverpool Care Pathway for the Dying Patient (LCP). Data on the total dose received in the last 24 h of life PRN and the last dose prescribed for administration via continuous subcutaneous infusion (CSCI) for agitation and restlessness were submitted. Results 155 hospitals provided data from 3893 patients. Median total doses in the last 24 h for midazolam, haloperidol and levomepromazine, respectively, were: PRN only, 2.5, 1.5 and 6.25 mg; CSCI only, 10, 3 and 6.25 mg; PRN+CSCI, 15, 3 and 12.5 mg. Conclusion Only 51% of patients received medication to alleviate agitation and restlessness in the last 24 h of life. Median doses were low in comparison to doses recommended for continuous deep sedation, suggesting that there is no ‘blanket’ policy for continuous deep sedation at the end of life for patients whose care is supported by the LCP.

How well do we currently care for our dying patients in acute hospitals: the views of the bereaved relatives?

Background The National Care of the Dying Audit—Hospitals (NCDAH) is used as a method to evaluate care for dying patients in England. An additional component to the 2013/2014 audit was the Local Survey of Bereaved Relatives Views using the ‘Care Of the Dying Evaluation’ (CODE) questionnaire. Aim Within the context of the NCDAH audit, to evaluate quality of care provided to dying patients and their families in acute hospitals from the perspective of bereaved relatives. Design Postbereavement survey to bereaved relatives. Setting/participants For acute hospitals wishing to participate, consecutive ‘expected’ adult deaths occurring between 1 May and 30 June 2013 were identified and the CODE questionnaire was sent to the next-of-kin. Results From 3414 eligible next-of-kin, 95 (2.8%) were excluded due to being involved in a complaint procedure and 1006 (29.5%) due to insufficient next-of-kin details. From the remaining 2313 potential participants, 858 returned a completed CODE questionnaire (37.1% response rate). Generally, symptoms were perceived to be well controlled with 769 (91%) participants reporting that either no pain was present or only there ‘some of the time’. Unmet information needs, however, was a recognised area for improvement, for example, 230 (29%) reporting having a discussion about hydration would have been beneficial. Conclusions Adopting a postbereavement survey to NCDAH appears to be feasible, acceptable and a valuable addition. On the whole, the majority of participants reported good or excellent care. A small but significant minority, however, perceived poor quality of patient care with clear and timely communication urgently needed.

Development and implementation of the Rapid Discharge Pathway Version 12 to enable imminently dying patients to die in the place of their choice

This study reports on the further development and implementation of a Rapid Discharge Home to Die Care Pathway (RDP Version 12). A rapid discharge pathway (RDP) was originally developed by members of the Hospital Specialist Palliative Care Team at the Royal Liverpool and Broadgreen University Hospitals NHS Trust in response to an identified clinical need to enable imminently dying patients to die in their place of choice when a clinical situation has changed rapidly and there has been an urgent request for a patient to die at home. The initial development and early evaluation, along with an example of the pathway itself, was published in 2004. The current study reports specifically on the subsequent development of the pathway that occurred alongside that of the generic Version 12 of the Liverpool Care Pathway for the Dying Patient published in December 2009. The study outlines the process of development and implementation of the RDP Version 12; patient scenario and a completed example are included to further illustrate the circumstances in which it can be used and the resultant process.

PA3 Using the lived experience of volunteers to enhance the care of dying patients and their families

Background In the UK, the majority of people die in hospital.1 Community presence is considered to be a significant component to achieving a “good death”,2,3 however many patients die with no/few visitors, spending their last weeks of life isolated or alone. Aim To establish a Volunteer Service and offer: A presence to dying patients. A connexion to the community outside the Hospital. Support to families, unable to visit or emotionally exhausted from their bedside vigil. Methods The Service was piloted on 6 wards (October 2012–March 2013) within a large NHS Trust, in the North of England. This was followed by a comprehensive evaluation, according to MRC guidance. Results Analysis of the service evaluation indicated that the service was extremely beneficial, meeting its aims in providing an emotional support and spiritual presence to dying patients, and their families. Conclusion The Service provides a model of best practice that could be replicated in other Trusts and within other care settings. There are plans to further develop and expand service provision across the Trust. References National End of Life Care Intelligence Network. What we know now. 2013. http://www.endoflifecare-intelligence.org.uk/resources/publications/what_we_know_now_2013 Department of Health. End of Life Care Strategy. 2008. https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-quality-care-for-adults-at-the-end-of-their-life Kellehear A. The end of death in late modernity, an emerging public health challenge. Crit Public Health 2007;17(1):71–79

Quality assurance for care of the dying: engaging with clinical services to facilitate a regional cross-sectional survey of bereaved relatives’ views

BackgroundGlobally, having the ‘patient and /or family voice’ engaged when measuring quality of care for the dying is fundamentally important. This is particularly pertinent within the United Kingdom, where changes to national guidance about care provided to dying patients has heightened the importance of quality assurance and user-feedback. Our main aim was to engage with clinical services (hospice, hospital and community settings) within a specific English region and conduct a bereaved relatives’ cross-sectional survey about quality of care. Our secondary aim was to explore levers and barriers to project participation as perceived by organisational representatives.MethodsEach organisation identified a consecutive sample of next-of-kin to adult patients who died between 1st September and 30th November 2014. Those who had an unexpected death or were involved in a formal complaint were excluded. The ‘Care Of the Dying Evaluation’ (CODE™) questionnaire was posted out three months following the bereavement. One-to-one interviews were undertaken with a purposive sample of organisational representatives to explore experiences about project participation.ResultsOf the 30 invited organisations, 18 were able to participate comprising: 7 hospitals, 7 hospices and 4 community settings. There were 1774 deaths which met the inclusion criteria but 460 (26%) were excluded due to inaccurate next-of-kin details. Subsequently, 1283 CODE™ questionnaires were sent out, with 354 completed (27% response rate). Overall, most participants perceived good quality of care. A notable minority reported poor care for symptom control and communication especially within the hospital. Nine interviews were conducted - levers to project participation included the ‘significance of user-feedback and the opportunity to use results in a meaningful way’; the main barrier was related to ‘concern about causing distress to bereaved relatives’.ConclusionsOverall, being able to engage with 18 (60%) organisations within the region and conduct the bereaved relatives’ survey showed success of this initiative and was supported by interview findings. The potential to be able to benchmark user-feedback against other organisations was thought to help focus on areas to develop services. This type of quality assurance project could form a template model and be replicated on a national and international level.