The intricacy of interactions: qualitative exploration of preferences and perceptions of advance care planning among healthcare professionals, patients and those close to them.

Objectives: Advance care planning (ACP) is a way of documenting preferences in case of a change or decline in health via verbal discussion and may include a written document. ACP relates not only to treatment preferences but to all aspects of future care such as place of death, plans for dependents and spiritual beliefs. Research has shown that ACP can have a positive impact but needs further understanding to enhance communication and increase uptake. This article focusses on the importance and intricacy of interactions and why a preference-based approach may be beneficial for the future. Methods: This article reports two separate, but related, pieces of qualitative research. First, focus groups to evaluate perspectives of healthcare professionals (HCPs) following their attendance at a North Wales ACP training workshop. The second study comprised interviews exploring the views of patients, those close to them and HCPs regarding ACP. Results: ACP interactions are complex and intricate. There is an association with end of life rather than changes in health among patients and HCPs often view discussions as akin to 'breaking bad news'. Good communication between patients, loved ones and HCPs is essential to reduce distress and ensure preferences are understood. Trust between patients and HCPs is of high importance and often a patient will have a preferred HCP who they feel comfortable discussing ACP with. Conclusion: A preference-based approach to ACP has potential to widen participation in ACP, relieve anxiety and ease burden for patients and carers. Further research is needed to identify ways to increase inclusivity.

The juxtaposition of the natural and the medical perspectives in noisy breathing at the end of life.

BACKGROUND: Noisy breathing is common at the end of life. Management of noisy breathing aims to reduce the noise via repositioning the person, suctioning the person's airways and using antimuscarinic drugs. Dying people are generally thought not to be distressed by noisy breathing at the end of life, but the noise may distress others. There is doubt on whether antimuscarinic drugs are any more effective than a placebo for noisy breathing. However, antimuscarinics are still commonly administered to people at the end of life. AIM: To illuminate reasons behind decision making and noisy breathing at the end of life. METHODS: Semi-structured interviews and 'self-recorded brief accounts' with healthcare professionals. FINDINGS: Noisy breathing at the end of life is viewed as both a natural and a medical phenomenon. However, while most participants in the interviews thought that antimuscarinics were uneffective, the prescription and administration of antimuscarinics were embedded within professional culture. CONCLUSION: Managing noisy breathing is a complex issue that incorporates natural and medical viewpoints and has a long-standing culture of practice. Research should aim to determine best practice and reduce a person's distress at the end of life.

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.

Percutaneous cervical cordotomy for cancer-related pain: national data.

OBJECTIVES: Percutaneous cervical cordotomy (PCC) is an interventional ablative procedure in the armamentarium for cancer pain treatment, but there is limited evidence to support its use. This study aimed to assess the effectiveness and safety of PCC. METHODS: Analysis was undertaken of the first national (UK) prospective data repository of adult patients with cancer undergoing PCC for pain treatment. The relationship between pain and other outcomes before and after PCC was examined using appropriate statistical methods. RESULTS: Data on 159 patients' PCCs (performed from 1 January 2012 to 6 June 2017 in three centres) were assessed: median (IQR) age was 66 (58-71) years, 47 (30%) were female. Mesothelioma was the most common primary malignancy (57%). The median (IQR) time from cancer diagnosis to PCC assessment was 13.3 (6.2-23.2) months; PCC to follow-up was 9 (8-25) days; and survival after PCC was 1.3 (0.6-2.8) months. The mean (SD) for 'average pain' using a numerical rating scale was 6 (2) before PCC and 2 (2) at follow-up, and for 'worst pain' 9 (1) and 3 (3), respectively. The median (IQR) reduction in strong opioid dose at follow-up was 50% (34-50). With the exception of 'activity', all health-related quality of life scores (5-level version of EuroQol-5 Dimension) either improved or were stable after PCC. Six patients (4%) had PCC-related adverse events. CONCLUSIONS: PCC is an effective treatment for cancer pain; however, findings in this study suggest PCC referrals tended to be late in patients' disease trajectories. Further study into earlier treatment and seeking international consensus on PCC outcomes will further enhance opportunities to improve patient care.

Dying at home of cancer: whose needs are being met? The experience of family carers and healthcare professionals (a multiperspective qualitative study).

OBJECTIVES: Supporting patients to die in the place of their choosing is an important aspect of end of life care. Our study set out to answer the question: 'How does the home environment influence perceptions of quality of death, and the experience of caring for the dying at home, for family carers and healthcare professionals (HCPs)? METHODS: A qualitative approach, using multiperspective interviews with bereaved family carers (n=15) and a nominated HCP (n=13) ensured depth of insight gained into supporting a home death. The semistructured interviews were audio recorded, transcribed verbatim and analysed using Framework. RESULTS: We found that the home environment enabled normality, a sense of control and individualised care which family carers often perceived as contributing towards a good death. However, the home environment created challenges for both family carers and HCPs, due to the differing and at times conflicting needs of the dying person and their family carers. CONCLUSIONS: We have shed light on the complexity of balancing the demands and the satisfaction of caring for someone dying at home. The ability to manage these conflicting needs influenced whether carers perceived the home setting as the best place for the person to have received care in their last days of life.

Percutaneous venting gastrostomy/gastrojejunostomy for malignant bowel obstruction: a qualitative study.

OBJECTIVE: Malignant bowel obstruction (MBO) is a complication of advanced malignancy and is associated with a short prognosis. MBO can infrequently be reversed by surgery or stenting. The focus of treatment is usually symptomatic management, of which percutaneous venting gastrostomy/gastrojejunostomy (PVG) is one consideration. There is little data considering the impact of PVG on quality of life; we therefore aimed to explore this. METHODS: We identified patients with a PVG inserted for MBO and those who consented to participate were interviewed. The interviews were audio recorded, transcribed and analysed using Framework. Alongside patient interviews, a data collection tool was designed and used to record patient demographics and medical information, enabling us to contextualise individual patients' experiences. RESULTS: 11 patients were interviewed and 10 patients' data were analysed (1 patient withdrew). No patients regretted having a PVG and many benefitted symptomatically and psychosocially. Challenges encountered included practical issues, pain and PVG tube complications. CONCLUSIONS: The analysis provided a detailed insight into the impact of PVG insertion and demonstrated that each patient's experience is shaped by a complex interplay of individual factors, thereby highlighting the need to improve referral criteria and individualise patient selection. Other service improvements include enhancing information provision for patients and training for healthcare professionals, thus aiming to mitigate the challenges experienced. Our study is the first in-depth exploration of patients' experiences of PVG at a tertiary cancer centre. Ensuring that the insights from this study are fed back to guide future service provision is critical in enhancing future patient experiences.

Do published patient decision aids for end-of-life care address patients' decision-making needs? A systematic review and critical appraisal.

BACKGROUND: Many decisions are made by patients in their last months of life, creating complex decision-making needs for these individuals. Identifying whether currently existing patient decision aids address the full range of these patient decision-making needs will better inform end-of-life decision support in clinical practice. AIMS AND DESIGN: This systematic review aimed to (a) identify the range of patients' decision-making needs and (b) assess the extent to which patient decision aids address these needs. DATA SOURCES: MEDLINE, PsycINFO and CINAHL electronic literature databases were searched (January 1990-January 2017), supplemented by hand-searching strategies. Eligible literature reported patient decision-making needs throughout end-of-life decision-making or were evaluations of patient decision aids. Identified decision aid content was mapped onto and assessed against all patient decision-making needs that were deemed 'addressable'. RESULTS: Twenty-two studies described patient needs, and seven end-of-life patient decision aids were identified. Patient needs were categorised, resulting in 48 'addressable' needs. Mapping needs to patient decision aid content showed that 17 patient needs were insufficiently addressed by current patient decision aids. The most substantial gaps included inconsistent acknowledgement, elicitation and documentation of how patient needs varied individually for the level of information provided, the extent patients wanted to participate in decision-making, and the extent they wanted their families and associated healthcare professionals to participate. CONCLUSION: Patient decision-making needs are broad and varied. Currently developed patient decision aids are insufficiently addressing patient decision-making needs. Improving future end-of-life patient decision aid content through five key suggestions could improve patient-focused decision-making support at the end of life.

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.

Cordotomy in mesothelioma-related pain: a systematic review.

BACKGROUND: Cordotomy can be effective in relieving pain for patients with mesothelioma, but the evidence to support continued provision is limited. This review forms part of the Invasive Neurodestructive Procedures in Cancer Pain pilot study: The role of cordotomy in mesothelioma-related pain in the UK. AIM/DESIGN: We report on the results of the first comprehensive systematic review of the use of cordotomy in mesothelioma-related pain, with specific reference to effectiveness in relieving pain and safety. The review was conducted according to guidelines reported in the NHS Centre for Reviews and Dissemination and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for systematic reviews and meta-analyses. DATA SOURCES: 14 databases from inception to March 2012 were searched, with no limitations on language or publication type. RESULTS: Nine studies met the inclusion criteria, all of which were case series of percutaneous cervical cordotomy (PCC) involving 160 patients. All studies demonstrated good pain relief in the majority of patients. Initial post-procedure measurements showed the greatest reduction in pain. Some side effects (headache, mirror pain, motor weakness) occurred relatively frequently but were mostly transient. Respiratory dysfunction post-PCC was rare. No deaths were directly ascribed to cordotomy. CONCLUSIONS: The available evidence is significantly limited in quantity and quality. Although it seems to suggest that cordotomy might be safe and effective in this setting, more reliable evidence is needed to aid decision making on continued provision. A national registry for cordotomy would be a valuable first step in this process.