Sobell House

<h3>Introduction</h3> CKD affects approximately 3.5 million people in the UK, with 30,000 undergoing dialysis. The annual mortality on dialysis is around 20%. Dialysis withdrawal has become an increasing cause of death amongst patients with end stage kidney disease. There remains a paucity of research in the field, particularly relating to patients’ perception of dialysis withdrawal. This study aims to explore patient understanding of dialysis withdrawal in those known to Renal Supportive Care (RSC). <h3>Methods</h3> This project took place across six haemodialysis units, with patients recruited from a local RSC register. Six patients were interviewed to achieve data saturation. A topic guide was created with input from the UK Kidney Association SIG for RSC. Themes were derived by three independent researchers. <h3>Themes</h3> • Need for information • Need for timelines • Information about what would happen depending on their dialysis journey. • Knowing who to consult for information • Who to involve in decisions <h3>Patient experience</h3> ‘Dialysis days, I just feel absolutely done’ ‘If I did a third day, mentally I would go downhill’ ‘It’s just a bind being here’ ‘Having to depend on someone, that would be a turning point’ <h3>Discussion</h3> This was a small, single-centre study, lacking ethnic diversity. Only four of twenty patients initially approached agreed to participate, suggesting that that dialysis withdrawal may not be something that patients feel comfortable discussing. We will ensure that patients known to RSC are offered education relating to dialysis withdrawal at the appropriate time, with their family present and with clinicians they know. If patients do not wish to engage in discussions or if discussions have already taken place, they will not be repeated, to minimise distress. The patient experience of haemodialysis will be fed back to determine how we can better support patients, particularly relating to quality of life on dialysis.

<h3>Introduction</h3> In light of the increasing role of multimodal and tailored therapy for pain management in current practice the need for a clear understanding of speciality services available to Palliative Care teams across the UK has become essential in providing optimal pain management. <h3>Methods</h3> Using established networks in the Palliative Care training programme within the UK a questionnaire was disseminated to clinicians working in pain and symptom management to ask them to share their local and regional connections and contacts for the management of complex pain. This questionnaire (hosted using Microsoft Forms) was disseminated via email with first and subsequent reminders. The questionnaire asked respondents to describe their relationship with relevant specialist including spinal and orthopaedic surgery, neurosurgery, interventional pain, clinical oncology and psychological medicine. The questionnaire aimed to determine how established these relationships were, if regular meetings between specialities were held and if clear inclusion and exclusion criteria for referrals exist. <h3>Results</h3> The results highlight the highly variable nature of pain networks across the UK with some areas having highly developed and well-integrated collaborative fora, and others having limited or no access to key specialities. Around 80% of respondents had a formal or informal relationship with psychological medicine services in contrast to 61% having no relationship at all with a neurosurgical service. A recurring theme across all relationships with specialist services was an absence of clear inclusion and exclusion criteria for referrals or established referral pathway. Examples of well established and well-integrated relationships were identified in multiple areas of the UK. <h3>Conclusion</h3> These results suggest that management of complex pain is highly variable across the UK due to networks of differing maturity, formality and integration. Exemplar services may serve as guidance for the development of similar services.

BackgroundPrion diseases are a group of rare, neurodegenerative conditions that are invariably fatal and cause a variety of symptoms, which can prove challenging to control. Through this paper, we aim to review the current evidence regarding pharmacological management of neuropsychiatric and motor symptoms of prion disease as well as draw on experts’ and relatives’ experience, to evaluate the current evidence and provide recommendations moving forwards.MethodsA scoping review of the literature for pharmacological management of symptoms was conducted using the systematic review tool, COVIDENCE, with searches conducted through four databases. 120 papers were selected for inclusion, and data extraction was carried out by two independent reviewers. Given the lack of high-quality data and small numbers, no further attempt at statistical analysis was made, and results are presented in a thematic synthesis.ResultsAlthough a broad range of approaches and pharmacotherapies are trialled to manage these challenging symptoms, there are patterns emerging of some efficacy seen with the use of benzodiazepines, antipsychotic and anticonvulsant medications in both motor and neuropsychiatric symptoms in prion disease. These approaches and associated challenges were reflected in international expert opinion that was gathered via online survey.ConclusionThere continues to be a paucity of good-quality evidence and we suggest a need for longitudinal, population-based and standardised research to allow a robust evidence base, which in turn will guide excellent symptom control and end of life care for this group of complex patients.

Ecomaps are tools used in nursing practice to assess families' social support systems. Ecomaps have been used effectively in qualitative research but little attention has been given to their use as a tool in the methodological approach of hermeneutic phenomenology. To demonstrate that the use of ecomaps is congruent with the Heideggerian philosophical foundations of hermeneutic phenomenology. This article reflects on a study in which the researchers used ecomaps to explore how parents of children with cancer are supported with decision-making about their children's care. Exploration of the Heideggerian concepts of 'being in the world', 'being with' and 'temporality' prompted reflections about how constructing ecomaps furthers understanding of participants' unique contexts. Using an ecomap in an in-depth interview enabled interviewees to return to their experiences of being supported with decision-making; it also further developed the researcher's understanding of how each participant's experience was situated in their evolving relationships with others. Constructing ecomaps in hermeneutic phenomenology is in tune with Heideggerian philosophical concepts. Ecomaps can open a door to participants' experiences, deepen the researcher's understanding and find further meaning in those experiences. Ecomaps are a useful way of shining a light on participants' experiences in hermeneutic phenomenological research. The article provides practical tips to optimise their use in future research.

Kaufman's Clinical Neurology for Psychiatrists (9th edn) By David Kaufman, Howard Geyer, Mark Milstein and Jillian Rosengard Elsevier. 2022. 700pp. £122.99 (hb). ISBN: 978-0323796804 - Volume 222 Issue 6

Purpose:Health and social care professionals report it challenging to have conversations with families when an important adult in the life of a child is at end of life, often feeling this aspect of care is the responsibility of other colleagues. This study aimed to understand professionals’ perceived role in family-centered conversations as part of routine care at end of life, and how to promote this element of care in clinical practice.Methods:An audit was completed with 116 professionals who work in palliative care including doctors and nurses that attended a 2-day virtual congress.Results:Professionals (73.2%) felt confident about starting a conversation with adult patients at end of life about important children. However, enquiring about relationships with children was largely dependent on the age of the patient. 64.7% of respondents reported signposting families to websites and services that provide family support. Most professionals (76.7%) wanted training to equip them with the skills and confidence to having family-centered conversations at end of life, with videos demonstrating how to provide these elements of care the most preferred option.Conclusions:Short training resources should be developed to equip professionals with the necessary skills toward having conversations about children with patients and relatives in clinical appointments. There is a need for professionals to ask every patient about important relationships with children.

The policy several countries is to provide people with a terminal illness the choice of dying at home; this is supported by surveys that indicate that the general public and people with a terminal illness would prefer to receive end-of-life care at home. This is the fifth update of the original review. To determine if providing home-based end-of-life care reduces the likelihood of dying in hospital and what effect this has on patients' symptoms, quality of life, health service costs and caregivers compared with inpatient hospital or hospice care. We searched CENTRAL, Ovid MEDLINE(R), Embase, CINAHL, and clinical trials registries to 18 March 2020. We checked the reference lists of systematic reviews. For included studies, we checked the reference lists and performed a forward search using ISI Web of Science. We handsearched palliative care journals indexed by ISI Web of Science for online first references. Randomised controlled trials evaluating the effectiveness of home-based end-of-life care with inpatient hospital or hospice care for people aged 18 years and older. Two review authors independently extracted data and assessed study quality. When appropriate, we combined published data for dichotomous outcomes using a fixed-effect Mantel-Haenszel meta-analysis to calculate risk ratios (RR) with 95% confidence intervals (CI). When combining outcome data was not possible, we reported the results from individual studies. We included four randomised trials and found no new studies from the search in March 2020. Home-based end-of-life care increased the likelihood of dying at home compared with usual care (RR 1.31, 95% CI 1.12 to 1.52; 2 trials, 539 participants; I2 = 25%; high-certainty evidence). Admission to hospital varied among the trials (range of RR 0.62, 95% CI 0.48 to 0.79, to RR 2.61, 95% CI 1.50 to 4.55). The effect on patient outcomes and control of symptoms was uncertain. Home-based end-of-life care may slightly improve patient satisfaction at one-month follow-up, with little or no difference at six-month follow-up (2 trials; low-certainty evidence). The effect on caregivers (2 trials; very low-certainty evidence), staff (1 trial; very low-certainty evidence) and health service costs was uncertain (2 trials, very low-certainty evidence). The evidence included in this review supports the use of home-based end-of-life care programmes for increasing the number of people who will die at home. Research that assesses the impact of home-based end-of-life care on caregivers and admissions to hospital would be a useful addition to the evidence base, and might inform the delivery of these services.

BackgroundMany people are living for longer with advanced cancer because of improvements in cancer treatments. Fatigue is the most prevalent and burdensome symptom in this cohort of patients. Thus, many could benefit from any improvements in the management of fatigue. This research explored how fatigue was talked about in advanced cancer care, how oncologists approached it and how patients dealt with it.MethodsA mixed methods design combining video-recordings, questionnaires and interviews was used. The study was divided into three parts: Part A, video-recorded observations of palliative oncology visits; Part B, interviews with patients with fatigue; and Part C, interviews with oncologists. Data from observations were analysed using content analysis and conversation analysis. Data from semistructured interviews were analysed using thematic analysis.ResultsIn Part A, 60 visits were recorded, and 37 patient participants reported fatigue. Talk connected with fatigue occurred in 82% of consultations and was often sequentially linked with discussions around goals of care and end of life issues. Resistance to treatment recommendations for fatigue was recurrently observed. In Part B, 22 patients were interviewed. The overarching theme ‘interconnectedness’ demonstrated how participants coped with fatigue through an array of interrelated strategies and influences. In Part C, nine oncologists were interviewed. The overarching theme ‘fatigue is perceived as different’ described how fatigue was challenging to assess and challenged the role of the oncologist.ConclusionsThe findings showed how fatigue is a complex phenomenon and how it can be integral to the decision-making surrounding palliative cancer treatments. For patients, fatigue is seen as an acceptable trade-off for the prolongation of life, and this was acutely observed when resistance to proposals to adjust cancer treatments occurred. Cancer clinicians may need to consistently reassure patients that alterations to palliative cancer treatments to lessen the burden of fatigue would not reduce survival.

Objectives: The aim of this study is to report the results of a second cycle audit of the use of subcutaneous levetiracetam (Keppra®) and an updated literature review of management of seizures in palliative care patients. Methods: A comprehensive literature review on the use of subcutaneous levetiracetam performed in 2016 was updated. A retrospective audit of the use of subcutaneous levetiracetam for inpatients at Sir Michael Sobell House Hospice during the period of 2019-2020 was performed. Ethical approval was not required and was therefore not sought. Results: We report an additional 66 cases identified through an updated literature review and our audit. Fourteen articles were identified from the literature review, reporting a total of 120 cases where subcutaneous levetiracetam was administered. We report 19 further cases of subcutaneous levetiracetam administration between April 2019 and April 2020. Doses ranged from 500 mg to 4000 mg daily. Doses above 2000 mg were administered using a T60 syringe driver. The oral-to-subcutaneous conversion ratio was 1:1 in all but one case where the dose had to be reduced to fit a T34 syringe driver, after which the T60s were purchased. Levetiracetam was not mixed with other medications, but administered alone using water as the diluent for injection. Where necessary, the dose was appropriately adjusted for renal function. No site reactions were reported. Conclusions: Combined analysis of the 139 cases of subcutaneous levetiracetam administration suggests that this treatment continues to have a role in management of seizures at the end of life. Clinical outcomes suggest that therapeutic levels may be achieved, although there are only very limited data available with a few cases worldwide to support this. Randomized controlled trials are urgently needed to establish the efficacy and tolerability of subcutaneous levetiracetam administration.