ILIVE Project Volunteer study. Developing international consensus for a European Core Curriculum for hospital end-of-life-care volunteer services, to train volunteers to support patients in the last weeks of life: A Delphi study.

BACKGROUND: Volunteers make a huge contribution to the health and wellbeing of the population and can improve satisfaction with care especially in the hospice setting. However, palliative and end-of-life-care volunteer services in the hospital setting are relatively uncommon. The iLIVE Volunteer Study, one of eight work-packages within the iLIVE Project, was tasked with developing a European Core Curriculum for End-of-Life-Care Volunteers in hospital. AIM: Establish an international consensus on the content of a European Core Curriculum for hospital end-of-life-care volunteer services which support patients in the last weeks of life. DESIGN: Delphi Process comprising the following three stages:1. Scoping review of literature into palliative care volunteers.2. Two rounds of Delphi Questionnaire.3. Nominal Group Meeting. SETTING/PARTICIPANTS: Sixty-six participants completed the Round 1 Delphi questionnaire; 75% (50/66) took part in Round 2. Seventeen participants attended the Nominal Group Meeting representing an international and multi-professional group including, clinicians, researchers and volunteer coordinators from the participating countries. RESULTS: The scoping review identified 88 items for the Delphi questionnaire. Items encompassed organisational issues for implementation and topics for volunteer training. Three items were combined and one item added in Round 2. Following the Nominal Group Meeting 53/87 items reached consensus. CONCLUSION: Key items for volunteer training were agreed alongside items for implementation to embed the end-of-life-care volunteer service within the hospital. Recommendations for further research included in-depth assessment of the implementation and experiences of end-of-life-care volunteer services. The developed European Core Curriculum can be adapted to fit local cultural and organisational contexts.

A systematically structured review of biomarkers of dying in cancer patients in the last months of life; An exploration of the biology of dying.

BACKGROUND: The Neuberger review made a number of recommendations to improve end of life care, including research into the biology of dying. An important aspect of the biology of dying is the identification of biomarkers as indices of disease processes. Biomarkers have the potential to inform the current, limited understanding of the dying process and assist clinicians in recognising dying, in particular how to distinguish dying from reversible acute deterioration. OBJECTIVES: To critically appraise the literature on biological factors that may be used as prognostic indicators in advanced cancer patients and to identify candidate biomarkers of the dying process that can be measured serially in cancer patients' bodily fluids. METHODS: A systematically structured review was conducted using three electronic databases. A hand search of six peer-reviewed journals and conference abstracts was also conducted. Studies reporting prognostic biomarkers in cancer patients with a median survival of ≤90 days and post-mortem studies were included. Final levels of evidence and recommendations were made using the Evidence Based Medicine modified GRADE system. RESULTS: 30 articles were included. Seven prognostic biological factors demonstrated Grade A evidence (lymphocyte count, white blood cell count, serum C-reactive protein, albumin, sodium, urea and alkaline phosphatase). An additional eleven prognostic factors were identified with Grade B evidence (platelet count, international normalised ratio, serum vitamin B12, prealbumin, bilirubin, cholesterol, aspartate aminotransferase, alanine transaminase, lactate dehydrogenase, pseudocholinesterase and urate). A number of biomarkers were specifically identified in the last two weeks of life but limitations exist. No post-mortem studies met the inclusion criteria. CONCLUSION: The biology of dying is an important area for future research, with the evidence focused on signs, symptoms and prognostic factors. This review identifies a number of common themes shared amongst advanced cancer patients and highlights candidate biomarkers which may be indicative of a common biological process to dying.

Palliative Care Medical Education in European Universities: A Descriptive Study and Numerical Scoring System Proposal for Assessing Educational Development.

CONTEXT: The lack of palliative medicine (PM) education has been identified as a barrier to the development of the discipline. A number of international institutions have called for its implementation within undergraduate medical curricula. OBJECTIVES: The objectives are to describe the situation of undergraduate PM education in Europe and to propose a scoring system to evaluate its status. METHODS: This descriptive study was conducted with data provided by key experts from countries of the World Health Organization European Region (n = 53). A numerical scoring system was developed through consensus techniques. RESULTS: Forty-three countries (81%) provided the requested information. In 13 countries (30%), a PM course is taught in all medical schools, being compulsory in six of them (14%). In 15 countries (35%), PM is taught in at least one university. In 14 countries (33%), PM is not taught within medical curricula. A full professor of PM was identified in 40% of countries. Three indicators were developed to construct a scale (rank 0-100) of educational development: 1) proportion of medical schools that teach PM (weight = 32%); 2) proportion of medical schools that offer PM as a compulsory subject (weight = 40%); 3) total number of PM professors (weight = 28%). The highest level of PM educational development was found in Israel, Norway, the U.K., Belgium, France, Austria, Germany, and Ireland. CONCLUSION: PM is taught in a substantial number of undergraduate medical programs at European universities, and a qualified teaching structure is emerging; however, there is a wide variation in the level of PM educational development between individual countries.

Caring for those who die at home: the use and validation of 'Care Of the Dying Evaluation' (CODE) with bereaved relatives.

BACKGROUND: As well as facilitating patients' wish to die at home, evaluating quality of care in this setting is essential. Postbereavement surveys with family members represent one assessment method. 'Care Of the Dying Evaluation' (CODE) is a 40-item self-completion postbereavement questionnaire, based on the key components of best practice for care of the dying. AIM: To assess the validity and reliability of CODE by conducting: cognitive 'think aloud' interviews; test-retest analysis; and assessing internal consistency and construct validity of three key composite scales. DESIGN: Postbereavement survey to next-of-kin (NOK). SETTING/PARTICIPANTS: 291 NOK to patients who died at home in Northwest England from an advanced incurable illness were invited to complete the CODE questionnaire. Additionally, potential participants were asked to undertake a cognitive interview and/or complete CODE for a second time a month later. RESULTS: 72 bereaved relatives (24.7% response rate) returned the completed CODE questionnaire, and 25 completed CODE for a second time. 15 cognitive interviews were undertaken. All interviewees found CODE sensitively worded and easy to understand. Minor revisions were suggested to provide additional clarity. Test-retest analysis showed all except one question had moderate or good stability. Although the ENVIRONMENT scale was not as relevant within the home setting, all three key composite scales showed good internal consistency and construct validity. CONCLUSIONS: 'CODE' represents a user-friendly, comprehensive outcome measure for care of the dying and has been found to be valid and reliable. CODE could potentially be used to benchmark individual organisations and identify areas for improvement.

Assessing the quality of care for dying patients from the bereaved relatives' perspective: further validation of "Evaluating care and health outcomes--for the dying".

CONTEXT: Evaluating Care and Health Outcomes-for the Dying (ECHO-D) is a post-bereavement questionnaire that assesses quality of care for the dying and is linked with the Liverpool Care Pathway for the Dying Patient (LCP). OBJECTIVES: To further assess the validity and reliability of the ECHO-D, namely the construct validity, internal consistency, and test-retest reliability of key composite scales. METHODS: Self-completion questionnaires were mailed to 778 next-of-kin of consecutive deceased patients who had died an "expected" cancer death in a hospice or acute tertiary hospital. For those willing to complete ECHO-D for a second time, another copy was sent a month later. Maximum likelihood factor analysis and Cronbach's alpha test were conducted for four key composite scales. Test-retest reliability was assessed using percentage agreement, Kappa statistic, and Spearman's correlation coefficient (ordinal data). Comparisons between hospice and hospital groups were conducted using one-way between-groups analysis of variance. RESULTS: Following exclusions (n = 52), 255 of 726 next-of-kin agreed to participate (35.2% response rate). Maximum likelihood factor analysis showed a single factor for three of the scales, and all had good internal consistency (Cronbach's alpha >0.78). Barring two questions, all showed good or moderate stability over time. Overall, hospice participants reported the best quality of care, and hospital participants, where care was not supported by the LCP, reported the worst quality of care. CONCLUSION: These findings support ECHO-D as a valid and reliable instrument to assess quality of care for the dying and assess the effectiveness of interventions such as the LCP.

A report on the long-term use of fentanyl pectin nasal spray in patients with recurrent breakthrough pain.

CONTEXT: As patients with cancer are living longer, there is a need to ensure that treatments used for palliative care are well tolerated and effective during long-term use. OBJECTIVES: To investigate the long-term use of fentanyl pectin nasal spray (FPNS) for the treatment of breakthrough pain in cancer (BTPc) in patients receiving regular opioid therapy. METHODS: Adult patients (N = 401) taking at least 60 mg/day oral morphine or equivalent, experiencing one to four episodes of BTPc a day, entered an open-label long-term study (NCT00458510). Patients had either completed an FPNS randomized controlled trial or were newly identified. Of these, 171 patients continued into an extension study. Up to four episodes of BTPc a day were treated with FPNS at 100-800 µg titrated doses. During the extension study, patients visited the clinic every four weeks for assessment and reporting of adverse events (AEs). RESULTS: There were 163 patients with documented FPNS use. The mean duration of use was 325 days; 46 patients used FPNS for ≥360 days; the maximum duration was 44 months. Seventy percent of patients did not change their FPNS dose; 2% of patients withdrew from the study because of the lack of efficacy. The most common AEs, aside from disease progression, were insomnia, 9.9%; nausea, 9.4%; vomiting, 9.4%; and peripheral edema, 9.4%. The overall incidence of FPNS-related AEs was 11.1%, the most common being constipation (4.1%), with no apparent dose relationship. Ten patients (5.8%) experienced nasal AEs, most of which were mild or moderate. CONCLUSION: FPNS appeared to provide sustained benefit and was well tolerated during long-term treatment of BTPc.

Hydration in advanced cancer: can bioelectrical impedance analysis improve the evidence base? A systematic review of the literature.

CONTEXT: Decisions surrounding the administration of clinically assisted hydration to patients dying of cancer can be challenging because of the limited understanding of hydration in advanced cancer and a lack of evidence to guide health care professionals. Bioelectrical impedance analysis (BIA) has been used to assess hydration in various patient groupings, but evidence for its use in advanced cancer is limited. OBJECTIVES: To critically appraise existing methods of hydration status assessment in advanced cancer and review the potential for BIA to assess hydration in advanced cancer. METHODS: Searches were carried out in four electronic databases. A hand search of selected peer-reviewed journals and conference abstracts also was conducted. Studies reporting (de)hydration assessment (physical examination, biochemical measures, symptom assessment, and BIA) in patients with advanced cancer were included. RESULTS: The results highlight how clinical examination and biochemical tests are standard methods of assessing hydration, but limitations exist with these methods in advanced cancer. Furthermore, there is disagreement over the evidence for some commonly associated symptoms with dehydration in cancer. Although there are limitations with using BIA alone to assess hydration in advanced cancer, analysis of BIA raw measurements through the method of bioelectrical impedance vector analysis may have a role in this population. CONCLUSION: The benefits and burdens of providing clinically assisted hydration to patients dying of cancer are unclear. Bioelectrical impedance vector analysis shows promise as a hydration assessment tool but requires further study in advanced cancer. Innovative methodologies for research are required to add to the evidence base and ultimately improve the care for the dying.

Issues and needs in end-of-life decision making: an international modified Delphi study.

BACKGROUND: end-of-life decision making is an important aspect of end-of-life care that can have a significant impact on the process of dying and patients' comfort in the last days of life. AIM: the aim of our study was to identify issues and considerations in end-of-life decision making, and needs for more evidence among palliative care experts, across countries and professions. PARTICIPANTS: 90 palliative care experts from nine countries participated in a modified Delphi study. Participants were asked to identify important issues and considerations in end-of-life decision making and to rate the need for more evidence. RESULTS: experts mentioned 219 issues in end-of-life decision making related to the medical domain, 122 issues related to the patient wishes and 92 related to relatives' wishes, regardless of profession or country (p > 0.05). In accordance, more than 90% of the experts rated the comfort and wishes of the patient and the potential futility of treatment as important considerations in end-of-life decision making, although some variation was present. When asked about issues that are in need of more evidence, 87% mentioned appropriate indications for using sedatives and effects of artificial hydration at the end of life. A total of 83% mentioned adequate communication approaches. CONCLUSIONS: palliative care experts from different professions in different countries encounter similar issues in end-of-life decision making. Adequate communication about these issues is universally experienced as a challenge, which might benefit from increased knowledge. This shared experience enables and emphasizes the need for more international research.

Assessing quality of care for the dying: the development and initial validation of a postal self-completion questionnaire for bereaved relatives.

BACKGROUND: Evaluating 'quality of care for the dying' from the patients' perspective has practical and ethical difficulties: an alternative is to use bereaved relatives' views as 'proxy' measures. Currently, within the United Kingdom, there is no validated instrument which specifically examines quality of care in the last days of life or the impact of the Liverpool Care Pathway (LCP) for the Dying Patient. AIM: To develop and validate a questionnaire for use with bereaved relatives assessing the quality of care for patients and families in the last days of life and the immediate period after the bereavement. DESIGN: The instrument, 'Evaluating Care and Health Outcomes - for the Dying' (ECHO-D), was developed in four distinct phases: 1. Question formulation, 2. Expert panel review (n = 6), 3. Wider audience review (n = 25), 4. Pilot, including cognitive pre-testing interviews and preliminary test-retest reliability assessment with bereaved relatives (n = 80) SETTING: The study was conducted within a hospice and an acute hospital involving healthcare professionals, lay members and bereaved relatives. RESULTS: The systematic and robust process of questionnaire development generated evidence for ECHO-D's face and content validity. Response rate for the pilot stage with bereaved relatives, however, was comparatively low (23.4%). Test-retest analysis from the pilot showed moderate or good stability for 13 out of 17 key questions, although small sample numbers limited the interpretation. CONCLUSIONS: ECHO-D is the first instrument specifically to assess 'quality of care for the dying', focussing on the last days of life, and has direct links with the use of the LCP Programme.

Long-term tolerability, efficacy and acceptability of fentanyl pectin nasal spray for breakthrough cancer pain.

PURPOSE: Previous studies show that fentanyl pectin nasal spray (FPNS) rapidly provides clinically meaningful pain relief in the treatment of breakthrough cancer pain (BTCP). This study assessed the long-term tolerability, acceptability and consistency of effect of FPNS in patients with BTCP. METHODS: Patients (new and rolled over from earlier controlled studies) with cancer experiencing one to four episodes per day of BTCP whilst taking ≥ 60 mg/day of morphine (or equivalent) given orally for cancer pain entered an open-label 16-week safety study. Safety and tolerability were assessed by adverse events (AEs), adverse drug reactions (ADRs), withdrawal due to AEs and by nasal assessments. Acceptability assessments included ratings of overall satisfaction with each treated episode and ease of use and convenience of FPNS. Additional rescue medication and dose stability were used to evaluate the consistency of effect. RESULTS: Four hundred three patients were included in the safety and intent-to-treat analysis (42,227 episodes), 356 entered the treatment phase and 110 completed 16 weeks. Overall, 24.6% of 403 patients reported treatment-related treatment-emergent AEs that were generally mild/moderate and typical of opioids; 20 patients discontinued treatment due to an AE (9 were ADRs). Nasal assessments revealed no clinically significant effects; 94% of FPNS-treated episodes required no additional rescue medication. More than 90% of patients did not have to increase their dose during the study. Patients reported overall satisfaction with FPNS for 90.1% of episodes. At week 12, 96.9% of patients were satisfied with the ease of use and 97.9% with the convenience of FPNS. CONCLUSIONS: FPNS was generally well tolerated and well accepted for the treatment of BTCP, and doses remained stable over the 4-month study period.

Variation in attitudes towards artificial hydration at the end of life: a systematic literature review.

PURPOSE OF REVIEW: Artificial hydration in end-of-life care is an important and emotive topic that frequently raises concerns from patients, relatives and healthcare professionals (HCPs). The aim of this review was to give an overview of currently available evidence around opinions and attitudes towards artificial hydration at the end of life. RECENT FINDING: In total 11 studies reported on opinions towards providing artificial hydration, nine studies reported on attitudes towards the effect of artificial hydration on quality-of-life and four studies towards its effect on survival. Reported percentages of respondents in favour of providing artificial hydration at the end of life varied from 22 to 100% and for nonprovision from 0 to 75%. One-third of the general public has been found to think that artificial hydration improves comfort, while among patients a majority feels it can have a physical or psychological benefit. HCPs were found to be less optimistic: 1-43% thought patients benefit from artificial hydration at the end of life. HCPs mostly agree artificial hydration does not prolong survival, although up to 89% of patients expect it does. SUMMARY: Opinions and attitudes towards the use of artificial hydration at the end of life vary. Communication of this imperative topic in end-of-life care is important for better care and should be research-based.

Undergraduate training in palliative medicine: is more necessarily better?

The General Medical Council's call to modernize medical education prompted the University of Liverpool Medical School to develop a new undergraduate programme, integrating palliative medicine as 'core' curricula. Following successful piloting, the palliative medicine training programme was further developed and expanded. This paper examines whether the additional investment produces improved outcomes. In 1999, fourth year undergraduate medical students (Cohort 1, n = 217) undertook a 2-week pilot education programme in palliative medicine. Subsequently, the training programme was refined and extended, incorporating advanced communication skills training, an ethics project and individual case presentations (Cohort 2, n = 443). Congruent with the study's theoretical driver of self-efficacy, both cohorts were surveyed pre- and post-programme with validated measures of: (i) self-efficacy in palliative care scale; (ii) thanatophobia scale. No significant differences between cohorts' pre-programme scores were identified. Within each cohort, statistically and educationally significant post-education improvements were recorded in both scales. Further post-education analysis indicated that the extended programme produces significantly greater improvements in all domains of the self-efficacy in palliative care scale (communication, t =-7.28, patient management, t =-5.96, multidisciplinary team-working t =-3.77 at p < 0.000), but not thanatophobia. Although improvements were recorded in both cohorts, participation in the extended education programme resulted in further statistically significant gains. Interpreted through the theoretical model employed, improved self-efficacy and outcome expectancies will result in behavioural change that leads to improved practice and better patient care.

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.

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.

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.