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

BACKGROUND: Globally, 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. METHODS: Each 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. RESULTS: Of 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'. CONCLUSIONS: Overall, 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.

The 'lived experience' of palliative care patients in one acute hospital setting - a qualitative study.

BACKGROUND: There is limited understanding of the 'lived experience' of palliative care patient within the acute care setting. Failing to engage with and understand the views of patients and those close to them, has fundamental consequences for future health delivery. Understanding 'patient experience' can enable care providers to ensure services are responsive and adaptive to individual patient need. METHODS: The aim of this study was to explore the 'lived experience' of a group of patients with palliative care needs who had recently been in-patients in one acute hospital trust in the north-west of England. Qualitative research using narrative interviews was undertaken, and data was analysed using thematic analysis. A sample of 20 consecutive patients complying with the inclusion/exclusion criteria were recruited and interviewed. RESULTS: Patient Sample: Of the 20 patients recruited, there was a fairly equal gender split; all had a cancer diagnosis and the majority were white British, with an age range of 43-87 years. Findings from Interviews: Overall inpatient experience was viewed positively. Individual narratives illustrated compassionate and responsive care, with the patient at the centre. Acts of compassion appeared to be expressed through the 'little things' staff could do for patients, i.e., time to talk, time to care, humanity and comfort measures. AHSPCT involvement resulted in perceived improvements in pain control and holistic wellbeing. However, challenges were evident, particularly regarding over-stretched staff and resources, and modes of communication, which seemed to impact on patient experience. CONCLUSIONS: Listening to patients' experiences of care across the organisation provided a unique opportunity to impact upon delivery of care. Further research should focus on exploring issues such as: why some patients within the same organisation have a positive experience of care, while others may not; how do staff attitudes and behaviours impact on the experience of care; transitions of care from hospital to home, and the role of social networks.

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.

The use of reflective diaries in end of life training programmes: a study exploring the impact of self-reflection on the participants in a volunteer training programme.

BACKGROUND: A training programme was developed and delivered to a cohort of volunteers who were preparing for a unique role to provide companionship to dying patients in the acute hospital setting. This comprehensive programme aimed to provide an opportunity for participants to fully understand the nature and responsibilities of the role, whilst also allowing sufficient time to assess the qualities and competencies of participants for their ongoing volunteering role. Participants completed reflective diaries throughout the training course to record their ongoing thoughts and feelings. The purpose of this paper is to present a phenomenological analysis of these entries to understand participants' experiences, perceptions and motivations. METHOD: The wider study was structured into three phases. Phase 1 was the delivery of a 12 week, bespoke training programme; Phase 2 involved a 26 week pilot implementation of the Care of the Dying Volunteer Service and Phase 3 was the research evaluation of the training and implementation which would inform the further development of the training programme. Self-reflection is a common component of End of Life training programmes and volunteers in this study completed a reflective diary after participation in each of the training sessions. A thematic analysis was undertaken to explore and understand the participants' experience, perceptions and motivations in relation to their participation in the training. RESULTS: All 19 volunteers completed the reflective diaries. From a potential 228 diary entries over the 12 week training programme, 178 diary entries were submitted (78 %). The following key themes were identified: Dying Alone and the importance of being present, Personal loss and the reconstruction of meaning, Self-Awareness and Personal growth, Self-preservation and Coping strategies and group unity/cohesion. CONCLUSIONS: The participants in this study demonstrated that they were able to use the diaries as an appropriate medium for reflection. Their reflections were also instrumental in the ongoing revision and development of the training programme. Analysis of their entries illustrated that the diaries could provide the opportunity for a reappraisal of their world view and personal philosophy around death and dying. Further research is undoubtedly required, however this paper suggests that self-reflection in this way, supports preparation in honing the appropriate attitudes and qualities required to work in this role.

Renal failure and specialist palliative care: an assessment of current referral practice.

AIMS: This retrospective audit assessed the referral practice for patients with end-stage renal failure from the nephrology service to the specialist palliative care team in a large teaching hospital in the north-west of England. METHODS: Forty-nine referrals with 'renal' as a primary diagnosis over a two-year period were identified from referral data. General and palliative care notes were reviewed and a data collection tool was designed. RESULTS: Most common reasons for referral were for 'placement' (38.6%) and 'dying/distressed' patients (22.7%), although psychological support was also prevalent (15.9%). Renal teams discussed stopping dialysis in the majority of cases (89%), but documented preferred place of care less frequently (48.3%) and achieved discharge to these locations in less than half of cases (21.4%). CONCLUSION: There was well-established referral practice between the renal and the specialist palliative care team at the hospital examined. The renal team appropriately referred for symptom control and support in the dying phase of patients. There are issues surrounding placement and increased implementation of end-of-life care tools, including the Liverpool Care Pathway, Gold Standards Framework and Preferred Place of Care documentation for renal patients, which needs to be an ongoing priority.

Reflexology for symptom relief in patients with cancer.

Complementary therapies are increasingly being used in hospices and hospitals alongside orthodox treatments in an attempt to improve patients' emotional, spiritual, psychological, and physical well-being. An average of 31% of UK patients with cancer use some form of complementary therapy. Many UK cancer centers, out-patient units, and hospices are providing complementary services. There is strong anecdotal evidence that complementary therapies assist in the palliation of physical and psychological symptoms. This systematic review examines the research evidence base for the effectiveness of reflexology in cancer care. The study reports the results of a systematic review following the Cochrane principles of systematic reviewing. No meta-analysis was possible. Studies were retrieved from a comprehensive search of electronic databases from their start dates. An initial search was carried out in 2003 and updated in 2005 to 2006. Eligible studies were randomized controlled trials, controlled before and after studies, and interrupted time-series studies. Participants were adults with a diagnosis of cancer, receiving care in any healthcare setting. Interventions were limited to reflexology carried out by a qualified therapist as distinguished from another healthcare professional carrying out a reflexology intervention. Outcome measures were patient-reported levels of physical and psychological indices of symptom distress and quality of life (measured using validated assessment tools).

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

OBJECTIVE: The 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). DESIGN: The study uses questionnaire evaluation of the benchmarking process assessing the quality/usefulness of: sector feedback reports, individual feedback reports and the workshop element. SETTING: Healthcare professionals representing hospital, hospice and community settings. PARTICIPANTS: Sixty-two out of 75 potential participants (83%) returned completed questionnaires. MAIN OUTCOME MEASURE: A 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. RESULTS: Participants 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. CONCLUSIONS: Using 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.

Effectiveness of aromatherapy massage in the management of anxiety and depression in patients with cancer: a multicenter randomized controlled trial.

PURPOSE: To test the effectiveness of supplementing usual supportive care with aromatherapy massage in the management of anxiety and depression in cancer patients through a pragmatic two-arm randomized controlled trial in four United Kingdom cancer centers and a hospice. PATIENTS AND METHODS: Two hundred eighty-eight cancer patients, referred to complementary therapy services with clinical anxiety and/or depression, were allocated randomly to a course of aromatherapy massage or usual supportive care alone. RESULTS: Patients who received aromatherapy massage had no significant improvement in clinical anxiety and/or depression compared with those receiving usual care at 10 weeks postrandomization (odds ratio [OR], 1.3; 95% CI, 0.9 to 1.7; P = .1), but did at 6 weeks postrandomization (OR, 1.4; 95% CI, 1.1 to 1.9; P = .01). Patients receiving aromatherapy massage also described greater improvement in self-reported anxiety at both 6 and 10 weeks postrandomization (OR, 3.4; 95% CI, 0.2 to 6.7; P = .04 and OR, 3.4; 95% CI, 0.2 to 6.6; P = .04), respectively. CONCLUSION: Aromatherapy massage does not appear to confer benefit on cancer patients' anxiety and/or depression in the long-term, but is associated with clinically important benefit up to 2 weeks after the intervention.

The Liverpool Care Pathway in hospices: an exploratory study of doctor and nurse perceptions.

BACKGROUND: The Liverpool Care of the Dying Pathway (LCP) was developed to transfer the hospice model of care into other care settings. It is a multiprofessional document providing an evidence-based framework for the dying phase. Widely used in hospitals it has now been adopted for use in hospices. METHOD: A qualitative study exploring hospice doctors' and nurses' perceptions of the impact of the LCP using semi-structured interviews of a purposive sample were undertaken in a 30 bed hospice in the north-west of England. Data was thematically analysed for emerging themes. RESULTS AND DISCUSSION: Eleven interviews were undertaken (eight nurses, three doctors). The results suggest that despite some initial scepticism the LCP has a valuable place in the hospice setting according to the doctors and nurses sampled. Alongside the potential for use in audit and research, perceived benefits include improving documentation, promoting continuity of care and enhancing communication and the care of relatives. Maintaining ongoing education and feedback on the use of the document were highlighted as important mechanisms for ensuring that the delivery of care remained optimum.

Respiratory tract secretions in the dying patient: a comparison between glycopyrronium and hyoscine hydrobromide.

The evidence for the management of respiratory tract secretions (RTS) in dying patients with antimuscarinic drugs remains inconclusive. This study investigated the effectiveness of glycopyrronium versus hyoscine hydrobromide in controlling RTS using the Liverpool Care of the Dying Pathway (LCP) in 72 patients matched for age, diagnosis, and gender who died on a 30-bed specialist palliative care unit. All patients in the glycoypyrronium group had some response to glycopyrronium, whereas 22% of patients in the hyoscine group had no response to hyoscine hydrobromide. There was a significant difference in overall response between the two groups (p < 0.01). Twenty-eight percent of patients in the glycopyrronium and 42% of patients in the hyoscine group died with RTS present. There was no statistically significant difference in the levels of agitation following administration of either drug. This study provides further evidence that the LCP can be a useful tool in the evaluation of new drugs for symptom control in dying patients and suggests that glycopyrronium may be at least as effective in controlling RTS in dying patients as hyoscine hydrobromide.

Developing the Liverpool Care Pathway for the dying child.

In most western societies the death of a child is a rare occurrence. When it does occur, it typically takes place after a period of intensive and often prolonged treatment. In light of the relative infrequency of these events in clinical practice, ensuring that all dying children and their families receive consistent and appropriate care remains a challenge. A retrospective audit of documentation of care for dying children in two paediatric units in the north-west of England illustrated that the care provided was not always documented consistently. This paper highlights work currently underway to develop an integrated care pathway for the care of the dying child based on the Liverpool Care Pathway (LCP). The aim of this work is to facilitate the delivery and recording of optimum care for all dying children and their families.

Enhancing hospital nurses' knowledge of palliative care: a network nurse programme.

The palliative care network nurse programme was developed to educate and skill generalist nurses in the care of the dying patient within the acute hospital setting. It developed at the request of nurses who had been involved in the piloting of the Liverpool Care of the Dying Pathway. The programme consists of a monthly meeting that encompasses an educative component and networking opportunities. In a preliminary evaluation of the programme, a questionnaire was sent to the network nurses (response rate 80%, n = 33). The nurses reported the programme to be beneficial in providing them with increased palliative care knowledge. Support and networking opportunities were also identified. This article discusses the programme, the evaluation findings and makes suggestions for further research.

Nurses' perceptions of the Liverpool Care Pathway for the dying patient in the acute hospital setting.

The Liverpool Care Pathway for the dying patient (LCP) was developed to transfer the hospice model of care into other care settings. It is a multiprofessional document that provides an evidence-based framework for the dying phase. It provides guidance on the different aspects of care required including comfort measures, anticipatory prescribing of medication, and discontinuation of inappropriate interventions. Additionally, psychological and spiritual care and family support is included. This article presents the findings of a study to explore hospital nurses' perceptions of the impact of the LCP using focus group interviews. Data were analysed for emerging themes using thematic analysis. The results suggest that the nurses have generally found that the LCP had a positive impact on patients, their families and also on nurses and doctors. This article will explore these benefits, as well as potential barriers to its use.

The essence of cancer care: the impact of training on nurses' ability to communicate effectively.

BACKGROUND: The importance of effective communication between health professionals and patients with cancer is widely recognized. Training programmes aimed at improving key communication skills are becoming increasingly available. PURPOSE: To evaluate a communication skills programme delivered to 308 cancer nurses as part of degree/diploma courses. Based on previous work, it was hypothesized that a statistically significant improvement between pre- and postintervention scores would be observed. METHODS: Audiotaped nursing assessments with patients were undertaken before and after the course. These were evaluated according to coverage of nine previously identified key areas of communication. RESULTS: Mean postcourse scores rose by 5.9 points (P < 0.001) to 16.3 (out of a possible 27). All nine individual areas of the assessment showed statistically significant improvements postintervention (P < 0.001). The areas showing most improvement were those with a high emotional content. CONCLUSIONS: This study has demonstrated that an integrated approach to communication skills training has the potential to improve nurses' skills, particularly in emotionally laden areas across the spectrum of roles in cancer care.

Evaluation of a hospice based reflexology service: a qualitative audit of patient perceptions.

Complementary therapies are being increasingly used in palliative care in the drive to improve patients' emotional, psychological and spiritual health, and enhance the quality of their lives. The importance of seeking the 'user' perspective when evaluating such services is becoming increasingly acknowledged. However, it is also extremely important that we elicit such perspectives in an ethically sensitive manner. This study used a simple semi-structured questionnaire to elicit the views of a convenience sample of 34 patients receiving palliative care at a specialist palliative core unit in the north of England who had completed a course of 4-6 sessions of reflexology. Patients' comments about the therapy and the service as a whole were overwhelmingly positive. They identified relaxation, relief from tension and anxiety, feelings of comfort and improved well-being as beneficial effects of their course of reflexology. Patients also spontaneously evaluated the experience holistically in terms of the wider therapeutic environment--the centre, the staff and the therapist as well as the therapy itself. The increasing demand for evidence based practice now challenges researchers to provide a relevant holistic assessment of complementary therapies using approaches that are both ethical and sensitive to the needs of this vulnerable patient population.