Recent Submissions

  • Mesothelioma palliative care needs: supporting patients and families with new research-based resources

    Darlison, Liz
    Background: Mesothelioma is a rare cancer without cure. Clinical guidelines recommend the timely provision of palliative/supportive care; however, a new study identified barriers to achieving this ambition. Objective: The study aimed to explore palliative care needs and the role of Mesothelioma Clinical Nurse Specialists (MCNSs); and to develop resources to address study findings. Methods: The mixed-methods study included a literature review, focus groups, interviews and surveys. Results: The study highlighted the important role of the MCNSs in palliative care and the need to: address disjointed care; improve support for families; and explain the benefits of palliative care for patients/families. A co-production approach developed an animation for patients/families to demystify palliative care and explain the benefits of early-stage engagement; and an infographic targeted at community and primary care professionals. Recommendations for community nursing practice are described.
  • Mechanical ventilation withdrawal in motor neuron disease: an evaluation of practice

    Wenzel, David (2020-05-21)
    Objectives: Clinicians report that withdrawal of mechanical ventilation in motor neuron disease is challenging. We report on the evaluation of the process and outcomes called for by the Association for Palliative Medicine of Great Britain and Ireland (APM) guidance. Methods: Excel analysis of a core data set, defined in the APM guidance, and thematic analysis of free-text comments, submitted by a UK clinician soon after withdrawal of mechanical ventilation in any care setting. Results: Thirty-seven professionals submitted 46 data sets from 4 patients with tracheostomy ventilation (TV) and 42 with non-invasive ventilation (NIV) in 35 months. These took place at home (43%), inpatient hospice (48%), hospital and care homes. Eighty-nine per cent received opioid and/or sedative medication at the initiation of withdrawal, majority of which were subcutaneous. A median of 2 doses (range 1-9) were used to manage symptoms before ventilation withdrawal. Subsequently 73% of patients required either none or one dose of medication. In addition to any background opioid, symptom management required a total parenteral morphine equivalent mean of 20.6 mg (range 0-60 mg) and midazolam mean of 25.8 mg (range 0-120 mg). The median time from first medication to removal of mechanical ventilation was 45 min. Patients with TV died within 30 min of withdrawal. The mode (14 of 42 patients) time to death after NIV withdrawal was 15 min, but ranged between <15 min and 54 hours. Conclusions: Individualised, proportionate, titrated opioid and sedative medications were used to provide good symptom management, and provided new insight into the substantial variability in what patients require to manage their symptoms and how long the process takes. Most patients required lower doses than in previous literature.
  • Non-invasive advanced respiratory support in end-of-life care and symptom management: systematic review

    Wenzel, David; Pepper, Coral (2022-10-13)
    Objectives: To narrate the canon of knowledge around symptom control at end of life for patients using, or having recently used, non-invasive advanced respiratory support (NARS) at end of life for respiratory failure. Methods: A systematic review forming a narrative synthesis from a wide range of sample papers from Medline, Embase, CINAHL, Emcare, Cochrane and OpenGrey databases. A secondary search of grey literature was also performed with hand searching reference lists and author citations. The review was undertaken using the ENTREQ checklist for quality. Results: In total, 22 studies were included in the synthesis and four themes were generated: NARS as a buoy (NARS can represent hope and relief from the symptoms of respiratory failure), NARS as an anchor (NARS brings significant treatment burden), Impact on Staff (uncertainty over the balance of benefit and burden as well as complex patient care drives distress among staff providing care) and the Process of Withdrawal (withdrawal of therapy felt to be futile exists as discrete event in patient care but is otherwise poorly defined). Conclusion: NARS represents a complex interplay of hope, symptom control, unnaturally prolonged death and treatment burden. The literature captures the breadth of these issues, but further, detailed, research is required in almost every aspect of practice around end-of-life care and NARS-especially how to manage symptoms at the end of life.
  • RealTalk evidence-based communication training resources: development of conversation analysis-based materials to support training in end-of-life-related health and social care conversations

    Faull, Christina (2022-08)
    Training to enhance healthcare practitioners' capabilities in engaging people in sensitive and end-of life-related conversations is in demand. However, evaluations have either not measured, or found very limited impact on actual practice and patient experience. Training effectiveness is improved when it is based on in-depth evidence, reflects the complexity of real-life interactions, and instils principles adaptable to everyday practice. A relatively new source of in-depth evidence and practice-relevant insights on healthcare interactions is conversation analytic research, a form of observational analysis of real-life interactions. However, conversation analytic research findings have largely been disseminated by and for scientists, rather than clinicians and trainers. We used conversation analytic evidence to develop resources for use by healthcare trainers. The aim was to increase training's evidence-base and authenticity. We further aimed to develop resources applicable to working with learners ranging from novices to advanced practitioners. Methods: Using an intervention development approach, we created online video-clips and supplementary written materials for professionals who deliver training, supervision, and support in healthcare communication for staff and students. The materials were reviewed by an advisory group comprising clinicians, lay consultees, educators, and researchers, and piloted by trainers in UK universities, NHS organisations and independent hospices. We refined materials based on their feedback. Results: The resulting 'RealTalk' resources focus on practices for communicating with patients and their companions about end-of-life and prognosis. Two core training modules were developed, each comprising several patient case studies featuring video-clips from real-life healthcare consultations. The clips featured practices that patients and experienced practitioners use in approaching end-of-life matters. The case studies also included evidence-based descriptions of observable practices and the principles underlying these, alongside transcripts and case synopses. Conclusions: RealTalk training resources aim to facilitate evidence-based, experiential and reflective learning, focusing on communication challenges, practices and principles for end-of-life-related interactions. The resources are designed for use by trainers for delivering all levels of training, from introductory to advanced, in both formal and informal training settings. Our development process may serve as a blueprint for the production of future evidence-based training resources based on conversation analytic research.
  • Withdrawal of assisted ventilation at the patient's request in MND: a retrospective exploration of the ethical and legal issues concerning relatives, nurses and allied health care professionals

    Faull, Christina (2022)
    Background There is little literature focusing on the issues relatives and health professionals encounter when withdrawing assisted ventilation at the request of a patient with MND/ALS. Aim To explore with relatives, nurses and allied health professionals the ethical and legal issues that they had encountered in the withdrawal of ventilation at the request of a patient with MND/ALS. Method A retrospective qualitative interview study with 17 family members and 26 professionals. Data was analysed thematically and compared with results from a previous study with doctors. Results The events surrounding ventilation withdrawal were extraordinarily memorable for both HCPs and family members with clear recall of explicit details, even from years previously. The events had had a profound and lasting effect due to the emotional intensity of the experiences. Withdrawal of ventilation posed legal, ethical and moral challenges for relatives and health are professionals. Relatives looked to health care professionals for knowledge, guidance and reassurance on these issues, worried about how the withdrawal would be perceived by others, and found professional ignorance and disagreement distressing. Many health care professionals lacked theoretical knowledge and confidence on the legal and ethical considerations of withdrawal and struggled morally knowing the outcome of the withdrawal would be death. Health care professionals also worried about the perception of others of their involvement, which in turn influenced their practice. There was a lack of consistency in understanding across professions, and professionals often felt uncomfortable and anxious Conclusions Legal, ethical and practical guidance is needed and open discussion of the ethical challenges as well as education and support for health care professionals and relatives would improve the experience of all involved.
  • Outbreak of SARS-CoV-2 at a hospice: terminated after the implementation of enhanced aerosol infection control measures

    Feathers, Luke; Bird, Paul; Holmes, Christopher; Tang, Julian (2022)
    Outbreaks of COVID-19 in hospices for palliative care patients pose a unique and difficult situation. Staff, relatives and patients may be possible sources and recipients of infection. We present an outbreak of COVID-19 in a hospice setting, during the UK's first pandemic wave. During the outbreak period, 26 patients and 30 staff tested SARS-CoV-2 positive by laboratory-based RT-PCR testing. Most infected staff exhibited some mild, non-specific symptoms so affected staff members may not have voluntarily self-isolated or had themselves tested on this basis. Similarly, for infected patients, most became symptomatic and were then isolated. Additional, enhanced aerosol infection control measures were implemented, including opening of all windows where available; universal masking for all staff, including in non-clinical areas and taking breaks separately; screening for asymptomatic infection among staff and patients, with appropriate isolation (at home for staff) if infected; performing a ventilation survey of the hospice facility. After these measures were instigated, the numbers of COVID-19 cases decreased to zero over the following three weeks. This outbreak study demonstrated that an accurate understanding of the routes of infection for a new pathogen, as well as the nature of symptomatic versus asymptomatic infection and transmission, is crucial for controlling its spread.
  • Understanding the experiences of end of life care for patients with mesothelioma from the perspective of bereaved family caregivers in the UK: a qualitative analysis

    Darlison, Liz (2022)
    Objectives: Mesothelioma is a rare, progressive cancer with a short trajectory from diagnosis to the end of life. This study explores the experiences of palliative and end of life care for patients with mesothelioma from the perspective of bereaved family caregivers. Methods: A qualitative, descriptive approach was adopted comprising face-to-face, semi-structured interviews with bereaved caregivers of patients with mesothelioma in the UK. An inductive, thematic analysis was conducted using the 'Framework' approach. Results: Nine bereaved caregivers participated. Four themes emerged: understanding what lies ahead; carer support; care co-ordination; managing after death: practicalities, inquests and abandonment. Caregivers need to understand what lies ahead in order to emotionally and practically prepare themselves for supporting the patient at the end of life. Information and support needs of caregivers were often distinct from those of patients, including the importance of information about the coroner's involvement. The importance of care co-ordination was emphasised, with caregivers valuing on-going relationships and a named individual taking responsibility for co-ordinating the patients care. Feelings of abandonment arose when there was no contact with healthcare professionals following the death of the patient. Conclusions: Greater opportunity for open, one-to-one communication between family caregivers and healthcare professionals is vital to enable the caregiver to prepare for what lies ahead at the end of life and prevent feelings of abandonment after the death of the patient. Improved care co-ordination and partnership working are essential for supporting both patient and caregiver at the end of life.