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Publication Carer administration of as-needed subcutaneous medication for breakthrough symptoms in people dying at home: the CARiAD feasibility RCT(NIHR Journals Library, 2020-05-24) Poolman, Marlise; Roberts, Jessica; Wright, Stella; Hendry, Annie; Goulden, Nia; Holmes, Emily; Byrne, Anthony; Perkins, Paul; Hoare, Zoe; Nelson, Annmarie; Hiscock, Julia; Parkinson, Anne; Perkins, Paul; Parkinson, Anne; Medical and Dental; Nursing and Midwifery RegisteredBackground: Most people who are dying want to be cared for at home, but only half of them achieve this. The likelihood of a home death often depends on the availability of able and willing lay carers. When people who are dying are unable to take oral medication, injectable medication is used. When top-up medication is required, a health-care professional travels to the dying person's home, which may delay symptom relief. The administration of subcutaneous medication by lay carers, although not widespread UK practice, has proven to be key in achieving better symptom control for those dying at home in other countries. Objectives: To determine if carer administration of as-needed subcutaneous medication for common breakthrough symptoms in people dying at home is feasible and acceptable in the UK, and if it would be feasible to test this intervention in a future definitive randomised controlled trial. Design: We conducted a two-arm, parallel-group, individually randomised, open pilot trial of the intervention versus usual care, with a 1 : 1 allocation ratio, using convergent mixed methods. Setting: Home-based care without 24/7 paid care provision, in three UK sites. Participants: Participants were dyads of adult patients and carers: patients in the last weeks of their life who wished to die at home and lay carers who were willing to be trained to give subcutaneous medication. Strict risk assessment criteria needed to be met before approach, including known history of substance abuse or carer ability to be trained to competency. Intervention: Intervention-group carers received training by local nurses using a manualised training package. Main outcome measures: Quantitative data were collected at baseline and 6-8 weeks post bereavement and via carer diaries. Interviews with carers and health-care professionals explored attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The main outcomes of interest were feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. Results: In total, 40 out of 101 eligible dyads were recruited (39.6%), which met the feasibility criterion of recruiting > 30% of eligible dyads. The expected recruitment target (≈50 dyads) was not reached, as fewer than expected participants were identified. Although the overall retention rate was 55% (22/40), this was substantially unbalanced [30% (6/20) usual care and 80% (16/20) intervention]. The feasibility criterion of > 40% retention was, therefore, considered not met. A total of 12 carers (intervention, n = 10; usual care, n = 2) and 20 health-care professionals were interviewed. The intervention was considered acceptable, feasible and safe in the small study population. The context of the feasibility study was not ideal, as district nurses were seriously overstretched and unfamiliar with research methods. A disparity in readiness to consider the intervention was demonstrated between carers and health-care professionals. Findings showed that there were methodological and ethics issues pertaining to researching last days of life care. Conclusion: The success of a future definitive trial is uncertain because of equivocal results in the progression criteria, particularly poor recruitment overall and a low retention rate in the usual-care group. Future work regarding the intervention should include understanding the context of UK areas where this has been adopted, ascertaining wider public views and exploring health-care professional views on burden and risk in the NHS context. There should be consideration of the need for national policy and of the most appropriate quantitative outcome measures to use. This will help to ascertain if there are unanswered questions to be studied in a trial.Publication Nasal fentanyl alone plus buccal midazolam: an open-label, randomised, controlled feasibility study in the dying(BMJ Publishing Group, 2020-05-06) Perkins, Paul; Parkinson, Anne; Kwame Akyea, Ralph; Husbands, Emma; Perkins, Paul; Parkinson, Anne; Husbands, Emma; Medical and Dental; Nursing and Midwifery RegisteredIntroduction: Many patients want to stay at home to die. They invariably become unable to take oral medication during their terminal phase. Symptoms are usually controlled by subcutaneous medications. There have been no studies on nasal fentanyl (NF) or buccal midazolam (BM) to control symptoms in the dying. Objective: To establish how best to conduct a definitive, randomised controlled trial (RCT) to determine whether NF and BM administered by families, for patients dying at home, lead to faster and better symptom control and fewer community nursing visits than standard breakthrough medication by healthcare professionals. Methods: This open-label mixed-method feasibility RCT compared the efficacy of NF and BM by family members to standard breakthrough medication by nurses for the terminally ill in a specialist palliative care unit. Partway through the study, a third observational arm was introduced where BM alone was used. The primary outcomes were whether recruitment and randomisation were possible, assessment of withdrawal and drop-out, and whether the methods were acceptable and appropriate. Results: Administration of NF and BM was acceptable to patients and families. Both were well tolerated. We were unable to obtain quality of life data consistently but did get time period data for dose-controlled symptoms. Conclusions: Study participation in a hospice population of the dying was acceptable. The results will help guide future community study planning.Publication 18 Retrospective audit to assess for differences between patients dying of Covid-19 vs patients dying of other causes(BMJ Publishing Group, 2021-03-17) Creed, Jennifer; Tredgett, Kate; Alim, Lina; Gaze, Holly; Qamar, Sombul; Creed, Jennifer; Tredgett, Kate; Alim, Lina; Gaze, Holly; Qamar, Sombul; Medical and DentalBackground Specialist palliative care is essential in caring for patients dying of Covid-19. Facing this new disease, it is essential we develop an understanding of this patient population and how best to manage their end of life. We wanted to assess if there are any significant differences between patients dying of Covid-19 versus those dying of other causes. Methods We compared the patients who died of Covid-19 in April 2020, with patients who died in April 2020 and April 2019 without Covid-19 who were known to the specialist palliative care team at a district general hospital. We collected the data by retrospective case note review. Results Total of 39 patients; 12 patients in the Covid-positive group, 15 in the Non-Covid-2020 group and 12 in the Non-Covid-2019 group. There were 25 males distributed across the groups, with a comparable median age across the groups. Malignancy was less common in the Covid-positive group but co-morbidities including cardio-vascular disease and type two diabetes were more common. Patients who were Covid-positive; had a shorter window of palliative care team involvement, a lower AKPS at point of referral and were more likely to be in the dying phase of illness. Symptoms of breathlessness were more likely in the Covid-positive group, but they were less likely to have pain. Agitation was present across all groups. The median doses of morphine and midazolam were very similar across all groups and for all groups these treatments were recorded as being effective. Conclusion The palliative care team were referred patients with Covid-19 at a later stage in their illness. The symptom burden and medication requirements at the end of life were however similar across all groups. It is helpful to be aware of these findings so that we can care for patients dying of Covid-19 effectively.Publication 1402 Dedicated administrative support improves children and young people’s advance care planning documentation(BMJ Publishing Group, 2022-11-24) Homfray, Gareth; Sellers, Isabel; McAuley, Charlotte; Homfray, Gareth; Sellers, Isabel; McAuley, Charlotte; Medical and DentalNo abstract availablePublication Malignant pleural effusions: the patient experience(BMJ Publishing Group, 2021-03-11) Jones, Rachel; Steer, Henry; Preston, Nancy; Perkins, Paul; Jones, Rachel; Steer, Henry; Perkins, Paul; Medical and DentalNo abstract availablePublication Nasal fentanyl and buccal midazolam carer administration 'as needed' for breakthrough symptom control in a specialist palliative care unit: a nested qualitative study(BMJ Publishing Group, 2021-03-25) Perkins, Paul; Parkinson, Anne; Taylor, Vanessa; Husbands, Emma; Perkins, Paul; Parkinson, Anne; Husbands, Emma; Medical and DentalIntroduction: When people are dying and unable to take oral medication, injectable medication is commonly used, usually administered by healthcare professionals. There may be delays to symptom relief due to travel to the person's home. In a randomised controlled trial (RCT) previously reported, nasal fentanyl (NF) or buccal midazolam (BM) were administered by lay carers in a hospice. Objective: (1) To report experiences of lay carers who administered NF and BM for symptom control and (2) To use feedback to develop guidance informing a future definitive RCT to determine whether NF and BM administered by lay carers can lead to timely, improved symptom control for people dying at home and fewer 'emergency' community nursing visits than standard breakthrough medication administered by healthcare professionals. Material and methods: Semistructured interviews with lay carers who gave trial medication were conducted. Interview data were analysed using a stage by stage method to code and categorise transcripts. Findings: The six themes were: (1) Participation-lay carers welcomed the opportunity to administer medication; (2) Ease of use-lay carers found preparations easy to use; (3) How things could have been done differently-lay carers would have liked access to trial drugs at home; (4) Training-lay carers were happy with the training they received; (5) Timing-lay carers liked the immediacy of trial drugs and (6) Evaluation-assessing symptom intensity and drug efficacy. Conclusions: Participation was acceptable to patients and lay carers, and beneficial for symptom relief. The findings will inform planning for a future community-based study.Publication Behaviours of Patients Who Take Their Strong Opioids as Unmeasured ‘Sips’(Elsevier, 2022-02-02) Perkins, Paul; Parkinson, Anne; Hebdon, Rob; Akyea, Ralph; Perkins, Paul; Parkinson, Anne; Medical and Dental; Nursing and Midwifery RegisteredContext: Some patients take their strong opioid painkillers as unmeasured sips. Objectives: To investigate how and why patients take their medication in this way. Methods: Patient receiving specialist palliative care who take their strong opioid painkillers as unmeasured sips were recruited. Measurement was made of the mass of two sips per patient and qualitative interviews using a topic guide were conducted. Interview transcripts were thematically analyzed using a phenomenological approach. Results: Only two of 16 patients were taking within 20% of the correct dose of their breakthrough liquid strong analgesia. Many varied the dose depending on the severity of the pain episode. Convenience, confusion about the correct dose, and issues with spoons were the other main reasons for people choosing to sip. Conclusion: This is the first published study exploring the behavior of patients who take their strong analgesia as unmeasured sips. Knowing that patients who sip are likely to be taking an incorrect dose, and the reasons behind sipping may help clinicians to help these patients to manage their pain better.Publication Does acupressure help reduce nausea and vomiting in palliative care patients? A double blind randomised controlled trial(BMJ Publishing Group, 2022-04-11) Perkins, Paul; Parkinson, Anne; Parker, Rebecca; Blaken, Alison; Akyea, Ralph; Perkins, Paul; Parkinson, Anne; Parker, Rebecca; Medical and Dental; Nursing and Midwifery RegisteredIntroduction: Nausea and vomiting are common symptoms for patients with advanced cancer. While there is evidence for acupuncture point stimulation for treatment of these symptoms for patients having anticancer treatment, there is little for when they are not related to such treatment. Objective: To determine whether acupressure at the pericardium 6 site can help in the treatment of nausea and vomiting suffered by palliative care patients with advanced cancer. Materials and methods: Double blind randomised controlled trial-active versus placebo acupressure wristbands. In-patients with advanced cancer in two specialist palliative care units who fitted either or both of the following criteria were approached: Nausea that was at least moderate; Vomiting daily on average for the prior 3 days. Results: 57 patients were randomised to have either active or placebo acupressure wristbands. There was no difference in any of the outcome measures between the two groups: change from baseline number of vomits; Visual Analogue Scale for 'did acupressure wristbands help you to feel better?'; total number of as needed doses of antiemetic medication; need for escalation of antiemetics. Conclusions: In contrast to a previously published feasibility study, active acupressure wristbands were no better than placebo for specialist palliative care in-patients with advanced cancer and nausea and vomiting.Publication 180 Unconjugated oestrogen for treatment of haematuria in advanced bladder cancer, post radiotherapy; a case report(BMJ Publishing Group, 2025-03-18) Kennedy, Rory; Husbands, Emma; Kennedy, Rory; Husbands, Emma; Medical and DentalNo abstract availablePublication The carbon footprint of a hospice(BMJ Publishing Group, 2022-10-07) Dokal, Kitt; Morris, Mungo; Spooner, Rosie; Perkins, Paul; Morris, Mungo; Spooner, Rosie; Perkins, Paul; Medical and DentalObjectives Environmental sustainability is an important concern within the National Health Service. Compared with other specialties, there has been little research within palliative care. This study aims to calculate the carbon footprint of a specialist palliative care unit. Methods Resources grouped into medical, nonmedical, travel, energy and waste were collected for the year 2021 in a hospice in the South West of England. Following a top-down approach, the activity used for each resource was multiplied by an emissions factor to calculate the carbon footprint. Staff attitudes were also surveyed. Results The hospice carbon footprint was calculated as 420 tonnes kgCO2 e. Travel (35%) was the highest contributor to emissions followed by gas (33%) and non-medical supplies (17%). There were 95 responses to the staff survey (59% response rate) with strong enthusiasm towards sustainable practices. Conclusion This is the first study to estimate the carbon footprint of a specialist palliative care unit. Compared with other specialties, palliative care has relatively low greenhouse gas emissions. Identifying sources of carbon equivalent production can be a first step into developing interventions to reduce this use. Our carbon footprint study will be used by the Hospice Sustainability Group to reduce our unit’s carbon footprintPublication Proactive advance care planning conversations in general practice: a quality improvement project(BMJ Publishing Group, 2024-07-08) Winnifrith, Tabitha; Millington-Sanders, Catherine; Husbands, Emma; Haros, Jane; Ballinger, Helen; Winnifrith, Tabitha; Husbands, Emma; Haros, Jane; Ballinger, Helen; Medical and Dental; Admin and Clerical; Nursing and Midwifery RegisteredAdvance care planning (ACP) is a process of discussion, reflection and communication, enabling planning for future medical treatment. Despite evidence of benefits of ACP to patients, families and the healthcare system, many die without an opportunity for such conversations, particularly those living with progressive non-malignant conditions. The Royal College of General Practitioners and Marie Curie Daffodil Standards launched in 2020 provide primary care with a structure for improving end-of-life care, including delivery of ACP. Proactive identification of patients is integral to the approach.We report on a quality improvement project which aimed to assess the take-up rate and acceptability in general practice of a timely and personalised ACP conversation using a 'What matters to you' (WMTY) framework, and to ensure that different diagnostic and demographic groups were included.Patients without previous ACP and potentially in the last year of life were offered an ACP conversation; a survey sought feedback.81% accepted the offer and in most cases, future care guidance was documented using the recognised format in Gloucestershire for recording ACP conversations, the Recommended Summary for Emergency Care and Treatment (ReSPECT) plan. Clinician and patient satisfaction was high.We concluded that an ACP discussion using a 'WMTY' format was highly acceptable to most. With recognised enablers in place and known barriers minimised, valuable personalised conversations occurred. Reframing the conversation to focus on how someone wants to live, while including their priorities for death, could alter how such conversations are perceived by clinicians and the public. It could remove negative associations (such as linking these conversations with an imminent death), which may increase motivation for all to initiate discussions.ACP conversations are evidenced best practice and could become routine in general practice with adjustments to practice processes and clinician education; the Daffodil Standards facilitate continued quality improvement.Publication Carer administration of as-needed subcutaneous medication for breakthrough symptoms in people dying at home: the CARiAD feasibility RCT(BMJ Publishing Group, 2025-06-12) Poolman, Marlise; Wright, Stella; Hendry, Annie; Goulden, Nia; Holmes, Emily; Byrne, Anthony; Perkins, Paul; Hoare, Zoe; Nelson, Annmarie; Hiscock, Julia; Hughes, Dyfrig; O'Connor, Julie; Foster, Betty; Reymond, Liz; Lewis, Penney; Wee, Bee; Roberts, Rossella; Parkinson, Anne; Roberts, Sian; Wilkinson, Clare; Perkins, Paul; Parkinson, Anne; Medical and Dental; Nursing and Midwifery RegisteredObjectives: To determine if carer administration of as-needed subcutaneous medication for common breakthrough symptoms in people dying at home is feasible and acceptable in the UK, and if it would be feasible to test this intervention in a future definitive randomised controlled trial. Design: We conducted a two-arm, parallel-group, individually randomised, open pilot trial of the intervention versus usual care, with a 1:1 allocation ratio, using convergent mixed methods. Setting: Home-based care without 24/7 paid care provision, in three UK sites. Participants: Participants were dyads of adult patients and carers: patients in the last weeks of their life who wished to die at home and lay carers who were willing to be trained to give subcutaneous medication. Strict risk assessment criteria needed to be met before the approach, including a known history of substance abuse or carer ability to be trained to competency. Intervention: Intervention-group carers received training by local nurses using a manualised training package. Primary outcome measures: Quantitative data were collected at baseline and 6-8 weeks post-bereavement and via carer diaries. Interviews with carers and healthcare professionals explored attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The main outcomes of interest were feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. Secondary outcome measures: The secondary outcome measure was time to symptom relief, calculated using data items from the carer diary, after the patient had died. Results: In total, 40 out of 101 eligible dyads were recruited (39.6%), which met the feasibility criterion of recruiting >30% of eligible dyads. The expected recruitment target (≈50 dyads) was not reached, as fewer than expected participants were identified. Although the overall retention rate was 55% (22/40), this was substantially unbalanced (30% (6/20) usual care and 80% (16/20) intervention). The feasibility criterion of >40% retention was, therefore, considered not met. A total of 12 carers (intervention, n=10; usual care, n=2) and 20 healthcare professionals were interviewed. The intervention was considered acceptable, feasible and safe in the small study population. The intervention group had a considerably shorter time to medication administration than the usual-care group (median time to administer medication in intervention=5 min, usual-care=105 min). Intervention group carers felt confident in administering medication. Healthcare professional support was sought by intervention group carers in 24 out of 147 (16.3%) medication administration entries. The context of the feasibility study was not ideal, as district nurses were overstretched, unfamiliar with research methods and possibly not in equipoise. A disparity in readiness to consider the intervention was demonstrated between carers, who were uniformly enthusiastic, and healthcare professionals who were not. Findings confirmed methodological and ethics issues pertaining to researching the last days of life care. Conclusion: The success of a future definitive trial is uncertain because of equivocal results in the progression criteria, particularly poor recruitment overall and a low retention rate in the usual-care group. Future work regarding the intervention should include understanding the context of UK areas where this has been adopted, ascertaining wider public views and exploring healthcare professional views on burden and risk in the NHS context. There should be consideration of the need for national policy and the most appropriate quantitative outcome measures to use. This will help to ascertain if there are unanswered questions to be studied in a trial.Publication Pathological emotionality in neurodegenerative conditions treated with dextromethorphan and quinidine: patients and carers impact(BMJ Publishing Group, 2024-11-15) Husbands, Emma; Husbands, Emma; Medical and DentalNo abstract availablePublication Impact of bedside ultrasound on care in specialist palliative care units: a qualitative study(BMJ Publishing Group, 2023-11-18) Moore, Steven; Stoneham, Bethany; Taylor, Vanessa; Perkins, Paul; Perkins, Paul; Medical and DentalObjectives: To explore the experiences of palliative care doctors regarding the clinical impact of ultrasound in specialist palliative care units (SPCUs). Methods: The study adopted a qualitative research design using semistructured interviews and a reflexivity journal. Six participants were recruited through purposive and snowball sampling. Findings were analysed using framework analysis. Results: Analysis used four predetermined themes: (1) practicalities, (2) clinical indications, (3) impact on patient care and service provision and (4) governance and training. Analysis identified a relationship between procedural confidence and use of ultrasound. Conclusions: Our study provides information for understanding the current use and limitations of ultrasound in SPCUs. Ultrasound leads to safer practice, especially when performing invasive procedures such as paracentesis. Development of standards around the use of, and training of staff undertaking ultrasound in specialist palliative care, are recommended.Publication 59 Experiences of CARE-PAC: a novel, dyadic digital remote monitoring system for patient and carer wellbeing(BMJ Publishing Group, 2024-02-02) Miller, Morven; Maguire, Roma; McCann, Lisa; Minton, Ollie; Seal, Matthew; Perkins, Paul; Parkinson, Anne; Sizer, Elaine; McKeown, Alistair; McCann, Nicola; Johnston, Helen; Tierney, Adele; Sheen, Linzi; Longford, Emma; Perkins, Paul; Parkinson, Anne; Sizer, Elaine; Medical and Dental; Nursing and Midwifery Registered; Additional Clinical ServicesNo abstract availablePublication Medical Management of Refractory Haematuria in Palliative Patients(Elsevier, 2024-07-29) Gardner, Jennifer; Husbands, Emma; Gardner, Jennifer; Husbands, Emma; Medical and DentalThe management of haematuria, in patients with a palliative diagnosis, refractory to standard measures presents a significant challenge for multidisciplinary teams. Our experiences with two cases led us to review the literature and highlighted the limited evidence base. We describe the cases here and propose options for medical approaches to management. We also report on successful use of a nonconjugated oestrogen which has a lower VTE risk compared to conjugated oestrogens. We aim to help support clinicians manage other palliative patients with this challenging symptom in future. Relevant references for this review were identified through searches of PubMed using the terms “haematuria,” “hematuria,” “palliative,” “antifibrinolytic,” “tranexamic acid,” “etamsylate” “glucocorticoid,” “oestrogen,” “estrogen,” “estradiol,” “somatostatin,” “thalidomide,” hyperbaric oxygen” and “intravesical hyaluronic acid.” Other references were suggested by the authors.