Impact of bedside ultrasound on care in specialist palliative care units: a qualitative study.

OBJECTIVES: 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.

The carbon footprint of a hospice.

OBJECTIVES: 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, non-medical, 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 kgCO2e. 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 footprint.

Behaviours of Patients Who Take Their Strong Opioids as Unmeasured 'Sips'.

CONTEXT: 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.

Does acupressure help reduce nausea and vomiting in palliative care patients? A double blind randomised controlled trial.

INTRODUCTION: 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.

Nasal fentanyl and buccal midazolam carer administration 'as needed' for breakthrough symptom control in a specialist palliative care unit: a nested qualitative study.

INTRODUCTION: 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.

Carer administration of as-needed subcutaneous medication for breakthrough symptoms in people dying at home: the CARiAD feasibility RCT.

BACKGROUND: 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. TRIAL REGISTRATION: Current Controlled Trials ISRCTN11211024. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 25. See the NIHR Journals Library website for further project information.

Most people in the UK would prefer to die at home, but only half of them achieve this. This usually depends on having able and willing lay carers (family or friends) to help look after them. Once swallowing is not possible, medicine is given continually under the skin (syringe driver). If common problems such as pain, vomiting or agitation break through, health-care professionals attend to give extra doses. The wait for a health-care professional to arrive can be distressing. In the UK, it is legal (but not routine) for lay carers to give needle-free subcutaneous injections themselves. We reworked an Australian carer education package for UK use. The best way to find out if this would work well is to do a randomised controlled trial. This is a test in which, at random, half of the people taking part receive 'usual care' and the other half receive the 'new care' or intervention. A pilot randomised controlled trial (a 'test' trial to see if a larger one is worth doing) was carried out to determine if lay carer injections were possible in the UK. We approached 90 dyads (a dying person and a key carer) and, of these, 40 were willing to take part and 22 completed the follow-up visit, so we could analyse their data. Of these 22 dyads, 16 were in the intervention group (lay carer injects) and six were in the control group (usual care). All carers were asked to keep a diary. Carers and health-care professionals were interviewed (qualitative study) and carer preferences were assessed. This new practice was safe, acceptable and welcomed. Carer confidence increased rapidly, symptom control was quicker and the interviews backed up these findings. Recruitment was low owing to overstretched health-care professionals. Only certain families were picked. Dyads in the usual-care group often wished they were in the intervention group. Carers found it difficult to complete some of the questionnaires that were used to measure the effect of the intervention. Therefore, uncertainty remains as to whether or not a full trial should proceed. Because the practice is already legal, some areas in the UK are already undertaking it. We plan to study what makes this practice possible or less possible to achieve.

Nasal fentanyl alone plus buccal midazolam: an open-label, randomised, controlled feasibility study in the dying.

INTRODUCTION: 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. TRIAL REGISTRATION NUMBER: NCT02009306.

CARer-ADministration of as-needed subcutaneous medication for breakthrough symptoms in homebased dying patients (CARiAD): study protocol for a UK-based open randomised pilot trial.

BACKGROUND: While the majority of seriously ill people wish to die at home, only half achieve this. The likelihood of someone dying at home often depends on the availability of able and willing lay carers to support them. Dying people are usually unable to take oral medication. When top-up symptom relief medication is required, a clinician travels to the home to administer injectable medication, with attendant delays. The administration of subcutaneous injections by lay carers, though not widespread practice in the UK, has proven key in achieving home deaths in other countries. Our aim is to determine if carer-administration of as-needed subcutaneous medication for four frequent breakthrough symptoms (pain, nausea, restlessness and noisy breathing) in home-based dying patients is feasible and acceptable in the UK. METHODS: This paper describes a randomised pilot trial across three UK sites, with an embedded qualitative study. Dyads of adult patients/carers are eligible, where patients are in the last weeks of life and wish to die at home, and lay carers who are willing to be trained to give subcutaneous medication. Dyads who do not meet strict risk assessment criteria (including known history of substance abuse or carer ability to be trained to competency) will not be approached. Carers in the intervention arm will receive a manualised training package delivered by their local nursing team. Dyads in the control arm will receive usual care. The main outcomes of interest are feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures. Interviews with carers and healthcare professionals will explore attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The study has obtained full ethical approval. DISCUSSION: This study will rehearse the procedures and logistics which will be undertaken in a future definitive randomised controlled trial and will inform the design of such a study. Findings will illuminate methodological and ethical issues pertaining to researching last days of life care. The study is funded by the National Institute for Health Research (Health Technology Assessment [HTA] project 15/10/37). TRIAL REGISTRATION: ISRCTN, ISRCTN 11211024 . Registered on 27 September 2016.

'Was it worth it?' Intrathecal analgesia for cancer pain: A qualitative study exploring the views of family carers.

BACKGROUND: Intrathecal drug delivery is known to reduce pain in patients where conventional systemic analgesia has been ineffective or intolerable. However, there is little information regarding the effects of intrathecal drug delivery on quality of life and function in those with advanced, incurable cancer. AIM: Retrospective exploration of the views of bereaved carers regarding the physical and psychosocial effects of external tunnelled intrathecal drug delivery in patients with advanced incurable cancer. DESIGN: Thematic analysis of qualitative interviews with carers of deceased individuals who received percutaneous external tunnelled intrathecal drug delivery as part of their pain management, within two UK centres. SETTING: A total of 11 carers were recruited from two UK Palliative Care centres. Family carers of adult patients who had received external tunnelled intrathecal drug delivery analgesia for cancer pain and had died between 6 and 48 months prior to contact were included. Carer relatives who were considered likely to be too vulnerable or who had lodged a complaint about treatment within the recruiting department or who had been treated directly by the interviewer were excluded. RESULTS: In total, 11 interviews took place. The emerging themes were (1) making the decision to have the intrathecal - relatives described desperate situations with severe pain and/or sedation, meaning that the individual would try anything; (2) timing and knowing they were having the best - an increased access to pain and palliative care services, meant carers felt everything possible was being done, making the situation more bearable; (3) was it worth it? - the success of the external tunnelled intrathecal drug delivery was judged on its ability to enable the individual to be themselves through their final illness. Side effects were often considered acceptable, if the external tunnelled intrathecal drug delivery enabled improvements in quality of life. CONCLUSION: Carers perceived external tunnelled intrathecal drug delivery as most valuable when it improved quality of life towards the end of life, by reducing pain and side effects of conventional systemic analgesia to enable individuals 'to be themselves'. Under these circumstances, the carers judged significant side effects to be acceptable.

Managing an intentional overdose in a hospice.

This case report describes a patient admitted unconscious to a hospice following an intentional overdose of oxycodone. She had previously declined conventional medical treatment for cancer and had made an advance decision stating that she wished to avoid hospital admission and refusing life-prolonging treatment. This case illustrates the practical and ethical challenges of managing an intentional overdose in a palliative care setting.

What influences palliative care nurses in their choice to engage in or decline clinical supervision?

BACKGROUND: Clinical supervision (CS) has been around since the early 1990s in the UK and has been endorsed by government and professional bodies. Levels of engagement range from 18% to 85%. AIM: To investigate what influences palliative care nurses in their choice to engage in or decline clinical supervision. METHOD: A qualitative study was undertaken in an inpatient hospice in England and employed two focus groups to compare the views of participants and non-participants in CS. Data were audio recorded and transcribed verbatim by the researchers and analysed using systematic text condensation. FINDINGS: Palliative care nurses all used informal team support for 'in the moment' support. Some engaged in formal CS to reflect 'on action' and to challenge practice. Nurses reported a lack of clarity regarding CS but, once this was overcome and engagement with CS was established, it led to changes in practice, identification of training needs and team building. The option of choice between group and individual supervision was found to be important. Group supervision led to enhanced understanding of group members which also led to team building, individual sessions were useful for individual issues. Protected time was essential for staff to be able to engage in CS. Staff who worked in larger teams reported higher levels of engagement, whereas a small team reported less need due to more informal team support. CONCLUSION: These findings are positive as they illuminate the importance of choice for support. Nurses need to be aware of their options for support and ultimately how this support affects the care they provide. The Palliative Care Nurse's Model of Support was developed, which shows the effects of each choice and how this may lead to team-building.

Patient experience of non-malignant ascites and its treatment: a qualitative study.

BACKGROUND: Ascites is an accumulation of serous fluid in the abdominal cavity. It can be caused by both malignant and non-malignant conditions and produces distressing symptoms. There have been no qualitative studies looking at the experiences of patients with non-malignant ascites. AIMS: To explore the experiences of patients living with non-malignant ascites and its management. Also, to explore the views of these patients about services available to them. METHOD: Phenomenological qualitative research study using digitally recorded semi-structured interviews. SETTING AND PARTICIPANTS: Six adult patients with non-malignant ascites who were receiving paracentesis to manage their symptoms in an acute hospital day unit. RESULTS: Participants experienced a wide variety of physical symptoms. They discussed how the ascites impacted on their social lives. They had views on diuretics, low sodium diet and paracentesis as methods of symptom management. Participants' confidence in staff performing paracentesis was a common finding, particularly as ultrasound was rarely used. While only some were suitable for liver transplant, all discussed their future care needs. CONCLUSION: Participants' experiences of non-malignant ascites are that it has a considerable effect on their quality of life. Patients like the system of day case admission for drainage, but question whether this is sustainable. Advanced practitioners can successfully provide a paracentesis service for these patients in hospitals and potentially this is transferable to hospices. Patients seemed happy to consider the option of semi-permanent drains and pumps as methods of managing ascites.

Hospice nurses' views on single nurse administration of controlled drugs.

BACKGROUND: The involvement of two nurses to dispense and administer controlled drugs is routine practice in most clinical areas despite there being no legal or evidence-based rationale. Indeed, evidence suggests this practice enhances neither safety nor care. Registered nurses at two hospices agreed to change practice to single nurse dispensing and administration of controlled drugs (SNAD). Participants' views on SNAD were evaluated before and after implementation. The aim of this study was to explore the views and experiences of nurses who had implemented SNAD and to identify the views and concerns of those who had not yet experienced SNAD. METHOD: Data was obtained through semi-structured interviews. RESULTS: Qualitative thematic analysis of interview transcripts identified three key themes: practice to enhance patient benefit and care; practice to enhance nursing care and satisfaction; and practice to enhance organisational safety. CONCLUSION: The findings have implications for the understanding of influences on medicines safety in clinical practice and for hospice policy makers.

How do nurses in specialist palliative care assess and manage breakthrough cancer pain? A multicentre study.

OBJECTIVE: To gain a better understanding of how registered nurses working in specialist palliative care assess and manage breakthrough cancer pain. METHODS: A mixed-methodology study was undertaken in two stages-this paper reports findings from stage two. Anonymous postal questionnaires, designed based on themes identified in interviews undertaken during stage one, were sent to trained nurses working in ten specialist palliative care services in England. RESULTS: A total of 104 questionnaires were returned. Respondents were experienced nurses mainly working in inpatient settings. Some 82% of the nurses wanted more training on the assessment of breakthrough cancer pain. Although there were inconsistencies around the use of terminology, pain management appeared to be good. CONCLUSION: The use of terminology in the field of breakthrough cancer pain remains variable. However, this does not appear to have a negative impact on patient management, which was broadly in line with recently published consensus recommendations. There is a desire for more education within this area of practice.

The experiences of patients undergoing blood transfusion in a day hospice.

AIM: To explore patients' views on living with anaemia and undergoing blood transfusions in a day hospice. METHODS: This was a qualitative study using semi-structured interviews. Ten patients who between them had received 90 transfusions were purposively sampled from the hospice day unit. The interviews were digitially recorded, transcribed anonymously, and the transcripts analysed using a phenomenological analysis framework. FINDINGS: Tiredness was the most common symptom of anaemia. Participants liked attending the day hospice instead of hospital for their transfusions owing to differences in transport, parking, waiting time, and space to ask questions. The majority had no concerns about hospice transfusion and would be happy to return for further treatment. CONCLUSIONS: Haematology patients can have a good experience when undergoing blood transfusion at a day hospice. Hospices should perhaps offer this procedure more widely.

Levomepromazine for nausea and vomiting in palliative care.

BACKGROUND: Nausea and vomiting are common, distressing symptoms for patients receiving palliative care. There are several agents which can be used to treat these symptoms. Levomepromazine is an antipsychotic drug which is commonly used to alleviate nausea and vomiting in palliative care settings. OBJECTIVES: To evaluate the efficacy of and adverse events (both minor and serious) associated with the use of levomepromazine for the treatment of nausea and vomiting in palliative care patients. SEARCH METHODS: We searched the electronic databases including CENTRAL, MEDLINE, and EMBASE using relevant search terms and synonyms in March 2013. SELECTION CRITERIA: Randomised controlled trials of levomepromazine for the treatment of nausea or vomiting, or both, for adults receiving palliative care. Studies where symptoms were thought to be due to pregnancy or surgery were excluded. DATA COLLECTION AND ANALYSIS: The potential relevance of studies was assessed based on titles and abstracts. Any study reports which appeared to meet the inclusion criteria were obtained for further assessment. All three authors read these papers to determine their suitability for inclusion and discussed discrepancies to achieve a consensus. MAIN RESULTS: The search strategy identified 421 abstracts from which eight studies were considered but all were excluded from the review. AUTHORS' CONCLUSIONS: No randomised controlled trials were identified examining the use of levomepromazine for nausea and vomiting in palliative care. Further studies of levomepromazine and other antiemetic agents are needed to provide better evidence for their use in this setting.