INSPIRE (INvestigating Social and PractIcal suppoRts at the End of life): Pilot randomised trial of a community social and practical support intervention for adults with life-limiting illness.

BACKGROUND: For most people, home is the preferred place of care and death. Despite the development of specialist palliative care and primary care models of community based service delivery, people who are dying, and their families/carers, can experience isolation, feel excluded from social circles and distanced from their communities. Loneliness and social isolation can have a detrimental impact on both health and quality of life. Internationally, models of social and practical support at the end of life are gaining momentum as a result of the Compassionate Communities movement. These models have not yet been subjected to rigorous evaluation. The aims of the study described in this protocol are: (1) to evaluate the feasibility, acceptability and potential effectiveness of The Good Neighbour Partnership (GNP), a new volunteer-led model of social and practical care/support for community dwelling adults in Ireland who are living with advanced life-limiting illness; and (2) to pilot the method for a Phase III Randomised Controlled Trial (RCT). DESIGN: The INSPIRE study will be conducted within the Medical Research Council (MRC) Framework for the Evaluation of Complex Interventions (Phases 0-2) and includes an exploratory two-arm delayed intervention randomised controlled trial. Eighty patients and/or their carers will be randomly allocated to one of two groups: (I) Intervention: GNP in addition to standard care or (II) Control: Standard Care. Recipients of the GNP will be asked for their views on participating in both the study and the intervention. Quantitative and qualitative data will be gathered from both groups over eight weeks through face-to-face interviews which will be conducted before, during and after the intervention. The primary outcome is the effect of the intervention on social and practical need. Secondary outcomes are quality of life, loneliness, social support, social capital, unscheduled health service utilisation, caregiver burden, adverse impacts, and satisfaction with intervention. Volunteers engaged in the GNP will also be assessed in terms of their death anxiety, death self efficacy, self-reported knowledge and confidence with eleven skills considered necessary to be effective GNP volunteers. DISCUSSION: The INSPIRE study addresses an important knowledge gap, providing evidence on the efficacy, utility and acceptability of a unique model of social and practical support for people living at home, with advanced life-limiting illness. The findings will be important in informing the development (and evaluation) of similar service models and policy elsewhere both nationally and internationally. TRIAL REGISTRATION: ISRCTN18400594 18(th) February 2015.

Red cell transfusion benefits in oncology, haematology and palliative medicine populations: a narrative review.

Due to the heterogenous nature of the palliative medicine patient population, assessment of benefit, and thus choice of appropriate patient for consideration of transfusion, can be challenging. This can be confounded by the use of both liberal and restrictive transfusion thresholds. The multifactorial nature of many symptoms of anaemia, particularly in patients with advanced malignancy, can further complicate. As such, there is a paucity of data supporting the subjective, objective and clinical benefit of red cell transfusion in the palliative medicine setting. This narrative review summarises the research and evidence surrounding the benefits of red cell transfusion, with a particular emphasis on the oncological, haematological and palliative medicine population. There is a lack of a validated, reproducible patient-reported outcome measures (PROM) to assess response to red cell transfusions in the palliative medicine population with outcome measures varying from objective improvement in haemoglobin level post-transfusion, to subjective response in primary symptom(s). Further investigation is required regarding the development of effective PROMs assessing response to red cell transfusion in the palliative medicine population, to ensure judicious use of this scarce and valuable resource.

Using a validated case mix tool for use in the telephone-assisted triage of patients in a specialist palliative care community setting: a consecutive case series.

OBJECTIVES: Allocating resources in palliative care is challenging due to the nature of life-limiting illness coupled with the propensity for significant physical symptoms and psychological distress. At present, there is no established system for triaging referrals and prioritising resource allocation.This study aimed to evaluate the feasibility of using a case mix assessment tool for telephone-assisted triaging of referrals to a specialist palliative care service. This assessed a patient's phase of illness, Problem Severity Score (PSS) for complexity of symptom burden and psychological distress, and functional status. METHODS: Using a prospective consecutive case series approach, 450 referrals to community palliative care over a 6-month period were assessed. Scores for phase of illness, PSS and functional status were assessed at triage, as was the triage category of urgency of response. RESULTS: Analysis demonstrated that phase of illness corresponds with triage category, with terminal or unstable phase patients significantly associated with urgent (category 1) referrals and highest priority for review. Decreased functional status and high PSS were useful predictors for increased urgency of referral. CONCLUSIONS: These results demonstrate that this case mix tool could assist in the telephone assessment and triage of referrals to community palliative care.

Palliative care services for children with life-limiting conditions.

BACKGROUND: Palliative care (PC) for children with life-limiting conditions (LLC) is a holistic approach to achieve the best quality of life. AIMS: Highlighting collaboration between pediatric and PC services is essential in providing seamless care. METHODS: Retrospective data obtained including patient cohort, disease profile, place of death, and the resource requirements for children with a LLC in the Mid-West region of Ireland over a 7-year period. RESULTS: Seventy-seven patients were identified (n = 77); five still receiving care, four discharged, and 68 have died. The cohort ranged in age from 1 day to 17 years with a mean of approximately 6 years. Thirty-five percent of patients were less than 1 year old. Fifty-one percent were male. Seventy-one percent were referred initially to PC for end-of-life care and 29% for symptom management. Forty-four percent had home support services in place prior to referral to PC. An advanced care plan was created for 65%. Of those that died (n = 68), 70.5% died at home, 25% in hospital, and 4.4% in residential care or a children's hospice. The clinical nurse coordinator for children with life-limiting conditions (CNCCLLC) was involved with 88% of patients. The specialist PC teams were involved with 87%; 65 patients had community support, 31 patients had in-hospital support, and 29 patients were seen by both hospital and community services. CONCLUSIONS: Our study highlights the growing number of LLCs and current pediatric and PC services require further resources and development.

Specialist palliative care out of hours telephone advice in Ireland: a national survey.

OBJECTIVES: In 2015 the All-Ireland Institute of Hospice and Palliative Care identified access to specialist palliative care (SPC) advice out of hours (OOH) as their number one research priority. Receiving appropriate advice in response to palliative care needs OOH can address a patient/family's concerns and prevent unnecessary hospital attendances.The aim of this study was to describe the current model of SPC OOH advice in the units that run this service, and gain a greater understanding of the nature of calls received by these services. METHODS: A national online survey was sent to staff providing OOH advice to patients with SPC needs and a second survey was sent to the managers of the organisations within Ireland. Surveys were emailed with a link to managers of both inpatient and community services who provide SPC. RESULTS: 78 clinical staff who provide OOH telephone advice responded to the survey and there were 23 responses to the managers' survey. The most common type of call received was in relation to symptom management (97%); however, 73% of staff indicated that they had no specific training in giving OOH advice over the phone and furthermore 44% of respondents felt ill equipped and uncomfortable giving OOH advice for a number of reasons. CONCLUSIONS: This survey has highlighted the need for support and training to the staff providing OOH SPC advice and that a set of standards to guide practice would be useful to this cohort of staff.

The association between phase of illness and resource utilisation-a potential model for demonstrating clinical efficiency?

Background: Healthcare efficiency involves demonstrating flexible inter-relationships between resource utilisation and patient need. In palliative care, five phases of patient illness have been identified: stable, unstable, deteriorating, terminal and bereaved. Evaluating the association between phase of illness and nursing activities could demonstrate clinical efficiency. Aim: The aim of this study was to evaluate the association between the phase of illness and the intensity of nursing care in a specialist palliative care unit. Methods: This was a prospective, observational cohort study of consecutive admissions (n=400) to a specialist palliative care unit. Patient phase of illness was documented on admission and daily thereafter. A nursing activity tool was developed, which scored daily nursing interventions (physical, psychological, family care and symptom control). This score was called the nursing total score (NTS) and reflected the intensity of nursing activities. Data were entered into SPSS and descriptive statistics weregenerated. Results: A total of 342 (85%) patients had full data recorded on admission. Stable, unstable, deteriorating and terminal phases were associated with progressively increasing median NTSs on days 1, 2, 3 and 4 (all P<0.01). Phase stabilisation from the unstable to the stable phase during this timeframe resulted in reductions in physical care (p=0.038), symptom management (p=0.007) and near-significant reductions in family support (p=0.06). Conclusion: A significant association was demonstrated between phase of illness and intensity of nursing activities, which were sensitive to phase changes, from unstable to stable. This demonstrates technically efficient resource utilisation and identifies a potential efficiency model for future evaluations of inpatient palliative care.

Identifying the gaps in Irish cancer care: Patient, public and providers' perspectives.

BACKGROUND: The University of Limerick Cancer network (ULCaN) was established in 2019 with funding from the Health Research Institute at the University of Limerick in order to build a network between individuals in academia, primary and secondary care and the general public so that cancer services can be coordinated and more effective. The aim of this paper is to outline our experience of engaging with stakeholders to identify gaps in the cancer journey locally. METHODS: Four focus group discussions were conducted with patients; their carers; members of the public; and healthcare providers with 2 main aims: 1) to investigate gaps in cancer services; 2) to identify knowledge, attitudes and opportunities available to promote cancer research. The focus groups were audio recorded, transcribed and thematically analysed. RESULTS: 15 themes within the topics of cancer care, palliation, communication, clinical trials, diet and exercise and public and patient involvement in research and advocacy were identified. These include directing people to reliable information and navigating misinformation and stigma linked with cancer, promoting awareness of clinical trials and palliative care services and improving communication when multiple healthcare providers are involved. CONCLUSION: The need to make more coherent, efficient and integrated cancer research amongst local stakeholders was evident. Embedding patients and members of the public into ULCaN is an important deliverable for collaborative research.

Bespoke 3D printed eye cover for teen with rhabdomyosarcoma.

BACKGROUND: We report a case of using 3D printing to create a bespoke eye cover for an 18-year-old man with left maxillary alveolar rhabdomyosarcoma. Further, the patient had proptosis causing chemosis and subsequent conjunctival abrasions. This had been managed by taping a large dressing around the eye for a number of weeks previously. METHODS: A 3D scanner was used to capture the surface topography of the patients face. The data were imported into a CAD package and used as a guide to create a bespoke eye cover. The final design was 3D printed in a biocompatible material for use by the patient. RESULTS: The scan, modelling, and printing of the bespoke cover was completed successfully in less than 72 hours. CONCLUSION: 3D printing offers a method to create bespoke solutions for patients in palliative care to meet rare and difficult clinical challenges.

Is Inpatient Hospice Care Clinically Effective? Using Phase of Illness to Evaluate Care Outcomes for Patients Admitted to a Specialist Palliative Care Unit in Ireland.

Background: In health care, clinical effectiveness involves evaluating the degree to which clinical interventions achieve beneficial patient and caregiver outcomes. Objective: To evaluate the clinical effectiveness of care in a specialist palliative care unit (SPCU) in Ireland, including an analysis of the temporal relationship among admission, Phase of Illness and patient and family distress. Design/Measurements: A consecutive case series with prospectively collected admission data (n = 400). Using a casemix tool (Phase of Illness), pain, other symptoms, psychological and family distress, and performance status were documented on admission and then daily by medical staff. Results: Three hundred forty-two (85%) patients had complete data recorded on day 1. After admission, there were linear correlations between days since admission and progressive improvements in pain (Cramer's V = 0.131, p < 0.001), other symptoms (V = 0.206, p < 0.001), psychological distress (V = 0.101, p < 0.001), and family distress (V = 0.124, p < 0.001). Forty-three percent were in an unstable phase on admission. Nearly two thirds (60.7%) of these unstable patients converted to a stable phase within 48 hours of admission. Over the first 72 hours, 70.7% of unstable patients converted to a stable phase. There was also a significant correlation between phase stabilization and pain and symptom control (p = 0.007). Stable phase over the first 4 days and first 14 days was associated with significantly higher performance status. Conclusion: This study demonstrates the significant clinical effectiveness of SPCU admission across the different aspects of patient and family care.

Prediction of patient survival by healthcare professionals in a specialist palliative care inpatient unit: a prospective study.

Accurate prognostication is an enormous challenge for professionals caring for patients with advanced disease. Few studies have compared the prognostic accuracy of different professional groups within a hospice setting. The aim of this study was to compare the ability of 5 professional groups to estimate the survival of patients admitted to a specialist palliative care unit. No group accurately predicted the length of patient survival more than 50% of the time. Nursing and junior medical staff were most accurate while care assistants were least accurate. When in error, senior clinical staff tended to under-estimate survival. Independent mobility on admission was the only variable predictive of length of survival. Thus, professional groups differ in their prognostic accuracy. An awareness of a group's propensity to over- or under-estimate prognosis should be incorporated into future work on prognostication models.

The Impact of a Novel Tool for Comprehensive Assessment of Palliative Care (MPCAT) on Assessment Outcome at 6- and 12-Month Follow-Up.

CONTEXT: Assessment in palliative care settings should be focused, sensitive, specific, and effective to minimize discomfort to vulnerable and often highly morbid patients. This report describes the development of an admission assessment protocol for a Specialist Palliative Care Inpatient Unit and its implementation into clinical practice. OBJECTIVES: The aim of this study was to develop and investigate the impact of the implementation of a Specialist Palliative Care admission assessment tool on documentation of key patient needs. METHODS: The outcome of a systematic literature review was used to develop an admission assessment protocol (the intervention) in a Specialist Palliative Care Inpatient Unit. Mixed methods were used to facilitate a comprehensive evaluation pre- and post-intervention to test the effectiveness, feasibility, and acceptability of the intervention. RESULTS: The documented evidence of pain assessment improved from a baseline rate of 71% to 100% post-intervention. This improvement was maintained 12 months post-introduction of the tool (P < 0.001). The documented evidence of screening for spiritual distress increased from a baseline rate of 23% to 70% at 6 months and to 82% at 12 months (P < 0.001). The number of referrals made in the first 24 hours after assessment increased post-intervention (physiotherapy, P = 0.001; occupational therapy, P = 0.001; social work, P = 0.005; pastoral care, P = 0.005); this was maintained at 12 months. Significantly, more clinicians (88%) agreed that palliative care domains were comprehensively assessed post-intervention in comparison with 59% pre-intervention (P = 0.01). CONCLUSION: Introducing the Milford Palliative Care Assessment Tool was associated with significant improvement in assessment of multiple important aspects of patient need.

Methods of Rotation From Another Strong Opioid to Methadone for the Management of Cancer Pain: A Systematic Review of the Available Evidence.

CONTEXT: Up to 44% of patients with cancer-related pain require opioid rotation (OR) because of inadequate analgesia or side effects. No consensus exists regarding the most efficacious method for rotation to methadone. OBJECTIVES: To define the available evidence regarding methods of rotation to methadone and to determine if sufficient evidence exists regarding the superiority of one method. METHODS: A predefined search strategy, using Medical Subject Headings (MeSH) search terms and keywords combined using Boolean operators, was performed. Study selection was performed according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidance. Data were extracted, quality of studies assessed, and narrative synthesis undertaken. RESULTS: A total of 3214 potentially relevant studies were identified. Twenty-five studies were included: 15 retrospective and 10 prospective (n = 1229). One trial compared three-day switch (3DS) and rapid conversion (RC) methods; two, 3DS; 10, RC; nine, ad libitum (AL). Success rates were as follows: 3DS-93%, RC-71.7%, and AL-92.8%. The single clinical trial and retrospective studies demonstrated poorer analgesia and an excess of adverse events (AEs) in the RC group (five dropouts because of AEs) compared with the 3DS group (no severe AEs). Time to stable analgesia was as follows: RC <4.3 days and AL <6 days. CONCLUSION: Evidence identified was mainly from uncontrolled observational studies, making causality difficult to establish. Studies were heterogeneous in methodology and outcome measures. There was a trend toward excess AEs using the RC method, in comparison to the AL and 3DS methods. The methodological quality of the AL studies was low. A direct comparison of AL and 3DS methods would be informative.

Implementing Outcome Measures Within an Enhanced Palliative Care Day Care Model.

BACKGROUND: Specialist palliative care day care (SPDC) units provide an array of services to patients and their families and can increase continuity of care between inpatient and homecare settings. A multidisciplinary teamwork approach is emphasized, and different models of day care exist. Depending on the emphasis of care, the models can be social, medical, therapeutic, or mixed. We describe our experience of introducing an enhanced therapeutic specialist day care model and using both patient- and carer-rated tools to monitor patient outcomes. MEASURES: Validated tools used to monitor patients' progress were the Edmonton Symptom Assessment System, the Edmonton Functional Assessment Tool, Part A of the McGill Quality of Life (QoL) Index, and the Palliative Care Problem Severity Scale. INTERVENTION: Participating patients received multidisciplinary teamwork input over eight-week cycles of care and completed the validated tools. OUTCOMES: A total of 70.6% of patients showed an improvement in their Edmonton Symptom Assessment System Symptom Distress Scores after one eight-week cycle. An improvement in Edmonton Functional Assessment Tool scores occurred in 53% and remained unchanged in 13% of patients. On a scale of 0-10, overall QoL improved in 56% of patients, remained unchanged in 18%, and worsened in 26%. Palliative Care Problem Severity Scale scores after an eight-week cycle improved in 58%. CONCLUSIONS/LESSONS LEARNED: This enhanced therapeutic model of SPDC allows for the tracking of progress toward specific goals and monitoring of patients' symptoms, functional status, QoL, and complexity. Retrospective analyses of validated tools show SPDC results in both maintenance and improvement of all parameters.

WA40†The good neighbour partnership: why do we need it? who is going to do it? how on earth are we going to evaluate it?

: This one-hour symposium considers Milford Care Centre's Compassionate Communities Good Neighbour Partnership and it's evaluation by an international team, led by Maynooth University and funded by the All Ireland Institute of Hospice and Palliative Care, The Irish Cancer Society, The Irish Hospice Foundation and Milford Care Centre. The symposium will be divided into three sections: 1. The Good Neighbour Partnership: Why do we need it? In this section we will describe the findings from a recent scoping study to determine the social and practical needs of community dwelling adults (and their families) living with advanced life limiting illness at home. We will consider the rationale for specialist palliative care services, working with community groups, to lead the development of a volunteer-based social model of care to address unmet need. 2. The Good Neighbour Partnership: How do we recruit and train volunteers? We will share our process and experience of recruiting and training 15 Compassionate Communities Volunteers to assess unmet social and practical need, and to mobile the person's circle of community to meet those needs. An understanding of the motivating factors of volunteers will be shared. 3. The Good Neighbour Partnership: How on earth are we going to evaluate it? Here we describe the INSPIRE study - Investigating Social and Practical Supports at the End of life. An exploratory delayed intervention randomised controlled trial (framed by the MRC Framework for Complex Interventions) to assess the feasibility, acceptability and potential effectiveness of the Good Neighbour Partnership.

Rotating to oral methadone in advanced cancer patients: a case series.

CONTEXT: Methadone is increasingly being used to treat patients whose pain does not respond well to other opioids. Advantages over morphine sulphate and its alternatives include low cost, lack of active metabolites and efficacy against neuropathic pain. OBJECTIVES: To describe our experience with opioid rotation to methadone and compare the morphine to methadone ratios to previously published data; To discuss two commonly used rotation methods--the Edmonton and Morley-Makin methods. METHOD: We describe two cases with cancer pain successfully switched to methadone. In both cases the dose of the previous opioid was limited by development of opioid toxicity. We used the Morley-Makin conversion method and modified it by reducing the 'as required' dose by a third. The initial methadone doses for these cases were lower than predicted doses. CONCLUSION: In cases where cancer patients fail to respond or develop tolerance to opioids, conversion to methadone is a reasonable approach. Although equianalgesic tables may not always predict final methadone doses, when properly selected can be useful tools for the experienced clinician. A customised and cautious approach is thus advisable when rotating to oral methadone, especially in patients who have experienced opioid toxicity.

Why do palliative care patients present to the emergency department? Avoidable or unavoidable?

INTRODUCTION: Presentations by patients with advanced illness to the Emergency Department (ED) towards the end-of-life can be distressing for both patients and caregivers. With an understanding of why patients present, interventions to avoid these presentations close to the end-of-life may be possible. AIMS: To identify patients under the specialist palliative care service (SPCS) who attended the ED over 6 months and to determine if these presentations were potentially avoidable. Presentations were deemed avoidable if the problem could have been dealt with in another manner, i.e. by the home care team or by the family physician, or in another setting, such as by admission to the hospice. RESULTS: Thirty-five ED presentations by 30 patients were included. Eighteen (60%) male, mean age 68.7 (47-89). Twenty-two (63%) ED presentations were outside working hours. The main reasons for attending were: dyspnea (9, 26%), nausea/vomiting/constipation (6, 17%) and uncontrolled pain (5, 14.5%). Thirty-three (94%) of the 35 presentations resulted in hospitalization. The average length of time spent in the ED was 9.2 hours (3-24). Referral to the hospital SPCS was made in 20 (60%) cases. Fifteen (50%) patients died within one month of presentation. Eighteen (51.5%) ED presentations were deemed potentially avoidable. CONCLUSION: Many ED presentations by palliative care patients may be avoidable. Appropriate sharing of information to on-call doctors, creating confidence in carers and providing extra practical supports is necessary. A comprehensive, coordinated specialist palliative care approach across community and acute services may help ensure patients are not sent to the ED inappropriately.