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.

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.

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.

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.

The experiences of patients with ascites secondary to cancer: a qualitative study.

BACKGROUND: Ascites secondary to cancer has a dramatic effect on all aspects of patients' lives. Healthcare professional surveys have shown that there is considerable variation in the management of ascites. AIM: To explore patients' experiences of living with ascites and its management. DESIGN: Qualitative research study using digitally recorded semi-structured interviews. SETTING/PARTICIPANTS: Twelve adult patients with ascites who, between them, had undergone 47 paracentesis procedures in hospitals and/or specialist palliative care units in Southern England. RESULTS: Symptoms were pain, discomfort and effects on appetite, digestion, breathing and mobility. All participants had experienced paracentesis in hospital or a specialist palliative care unit, and these experiences differed. They had views on what constituted a good procedure: setting, competence and pain control. They reported rapid improvement of symptoms after paracentesis. While some did not like the idea of a semi-permanent drain, those with them appreciated the convenience and not having to wait for repeated admissions or the recurrence of symptoms. The interval between ascitic taps was seen as a useful guide as to when a semi-permanent drain should be offered. Participants had mixed views on participation in a hypothetical randomised controlled trial of repeated ascitic taps versus semi-permanent drains. CONCLUSION: Patients' experiences of ascites management are variable and could be improved. These experiences can inform healthcare professionals. They have views on when semi-permanent drains should be offered and future research.

The role of specialist palliative care in managing patients with multimorbidity.

This case report describes a patient with multiple morbidity resulting from complicated type 2 diabetes, psoriatic arthritis and abdominal surgery. It highlights the importance of specialist palliative care services in meeting his complex holistic care needs. We acknowledge the growing number of patients living with multiple morbidity and the challenges this group can present. There is then a debate around when to involve specialist palliative care services in the management of multiple morbidity given that there is often an uncertain disease trajectory.

Droperidol for treatment of nausea and vomiting in palliative care patients.

BACKGROUND: Nausea and vomiting are common symptoms in patients with terminal illness and can be very unpleasant and distressing. There are several different types of antiemetic treatments which can be used to control these symptoms. Droperidol is an antipsychotic drug and has been used and studied as an antiemetic in the management of post-operative and chemotherapy nausea and vomiting. OBJECTIVES: To evaluate the efficacy and adverse events (both minor and serious) associated with the use of droperidol for the treatment of nausea and vomiting in palliative care patients. SEARCH STRATEGY: We searched electronic databases including CENTRAL, MEDLINE, EMBASE, CINAHL and AMED, using relevant search terms and synonyms. The basic search strategy was ("droperidol" OR "butyrophenone") AND ("nausea" OR "vomiting"), modified for each database. The search was updated on 2 December 2009. SELECTION CRITERIA: Randomised controlled trials (RCTs) of droperidol for the treatment of nausea or vomiting, or both, for adults receiving palliative care or suffering from an incurable progressive medical condition. DATA COLLECTION AND ANALYSIS: We judged the potential relevance of studies based on their titles and abstracts, and obtained studies which we anticipated might meet the inclusion criteria. We both read these to assess suitability for inclusion. Discrepancies were discussed to achieve consensus. MAIN RESULTS: The search strategy identified 1664 abstracts (and 827 duplicates) of which 23 studies were obtained in full as potentially meeting the inclusion criteria. On review of the full papers, no studies were identified which met the inclusion criteria, therefore, there were no included studies in this review. AUTHORS' CONCLUSIONS: There is insufficient evidence to advise on the use of droperidol for the management of nausea and vomiting in palliative care. Studies of antiemetics in palliative care settings are needed to identify which agents are most effective with a minimum of side effects.

Does the use of a handheld fan improve chronic dyspnea? A randomized, controlled, crossover trial.

CONTEXT: Dyspnea is a disabling distressing symptom that is common in advanced disease affecting millions of people worldwide. Current palliative strategies are partially effective in managing this symptom; facial cooling has been shown to reduce the sensation of breathlessness when induced in volunteers but has not been formally investigated in dyspnea associated with disease. OBJECTIVE: The objective of this study was to investigate whether a handheld fan reduces the sensation of breathlessness in such patients, enhancing palliative approaches. METHODS: The effectiveness of a handheld fan (blowing air across the nose and mouth) in reducing the sensation of breathlessness was assessed in patients with advanced disease. Fifty participants were randomized to use a handheld fan for five minutes directed to their face or leg first and then crossed over to the other treatment. The primary outcome measure was a decrease of greater than 1cm in breathlessness recorded on a 10 cm visual analog scale (VAS). RESULTS: There was a significant difference in the VAS scores between the two treatments, with a reduction in breathlessness when the fan was directed to the face (P=0.003). CONCLUSION: This study supports the hypothesis that a handheld fan directed to the face reduces the sensation of breathlessness. The fan was acceptable to participants: it is inexpensive, portable, enhances self-efficacy, and available internationally. It should be recommended as part of a palliative management strategy for reducing breathlessness associated with advanced disease.

Working with the Mental Capacity Act: findings from specialist palliative and neurological care settings.

Since October 2007 staff across health and social care services in England and Wales have been guided by the Mental Capacity Act (2005) in the provision of care for those who may lack capacity to make some decisions for themselves. This paper reports on the findings from a study with 26 staff members working in three palliative and three neurological care centres. Semistructured interviews were used to gain an understanding of their knowledge of the Mental Capacity Act, the issue of capacity itself and the documentation processes associated with the introduction of the Act and in line with advance care planning. Within this setting advance care planning is a key part of care provision and the mental capacity of service users is a regular issue. Findings show that staff generally had a good understanding of issues around capacity but felt unclear about some of the terminology related to the Mental Capacity Act, impacting on their confidence to discuss issues with service users and complete the documentation. Many felt the Act and its associated documentation had aided record-keeping in an area staff already delivered well in practice. Advance care planning in the context of the Mental Capacity Act is not as well embedded in practice as providers would like and consideration needs to be given to how and when staff should approach these issues with service users.

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

The aim of this qualitative study was to gain a better understanding of how nurses working on inpatient specialist palliative care units assess and manage breakthrough pain. Thematic analysis of semi-structured interviews with fifteen nurses from five different specialist palliative care units in the UK was undertaken. Themes identified have been broadly categorized into four main areas: defining breakthrough pain, assessing breakthrough pain, managing breakthrough pain, and attitudes/teamwork. Nurses had difficulty defining breakthrough pain as a distinct pain subtype and were often unable to differentiate it from poorly controlled background pain. This study highlights significant training needs and suggests that the theoretical work and recently published consensus recommendations around breakthrough pain now need to be translated into day-to-day clinical practice.