How clinicians recognise people who are dying: An integrative review.

BACKGROUND: Timely recognition of dying is important for high quality end-of-life care however, little is known about how clinicians recognise dying. Late recognition is common and can lead to futile treatment that can prolong or increase suffering and prevent a change in the focus of care. AIM: To explore how clinicians caring for dying people recognise that they are in the last days or hours of life, as well as the factors that influence the recognition of dying. DESIGN: A systematically constructed integrative review of the literature. METHODS: Medline, Scopus, Cumulative Index to Nursing and Allied Health Literature, PsycInfo and Allied and Complementary Medicine were searched in July 2022. Papers were included if they were original research, discussed how clinicians recognise dying, available in English language and published in 2012 or later. A constant comparison approach was applied to the analysis and synthesis of the literature. RESULTS: 24 papers met the inclusion criteria. There were 3 main categories identified: 'Clues and signals' refers to prompts and signs that lead a clinician to believe a person is dying, incorporating the sub-categories 'knowing the patient over time', and 'intuition and experience'. 'Recognition by others' is where clinicians come to recognise someone is dying through others. This can be through a change in the context of care such as a tool or care plan or by communication with the team. 'Culture, system and practice' refers to the cultural beliefs of a setting that influences awareness of dying and denial of death as a possibility and avoidance of naming death and dying directly. System and practice of the setting also impact on recognition of dying. This involves work pace and intensity, shift systems and timing of senior reviews of patients. Uncertainty and its impact on recognition of dying are evident throughout the findings of this review. The seeking of certainty and the absence of the possibility of dying contributes to late recognition of dying. DISCUSSION: Recognition of dying is a complex process that occurs over time, involving a combination of intuition and gathering of information, that is influenced by contextual factors. A culture where dying is not openly acknowledged or even named explicitly contributes to late recognition of dying. A shared language and consistent terminology for explicitly naming dying are needed. Uncertainty is intrinsic to the recognition of dying and therefore a shift to recognising the possibility of dying rather than seeking certainty is needed. REGISTRATION: (PROSPERO) CRD42022360900. Registered September 2022.

A good death in the child with life shortening illness: A qualitative multiple-case study.

BACKGROUND: Understanding what makes a 'good death' in the child with life shortening illness is important, as it informs appropriate and effective end-of-life care. Above play, peer contact and opportunities for assent, prior literature review found meeting needs and managing control were critical. The influence of disease types, location of death and palliative care support remains unclear. AIM: Explore how a good death for children can occur in the real-world context and identify factors influencing it. DESIGN: A qualitative multiple-case study. The case was defined as family and professional caregivers of children who died, stratified across disease categories (cancer or non-cancer) and palliative care contact. Data collection included (1) interviews, (2) artefacts, (3) clinical notes. Framework Analysis facilitated in-depth within and cross-case analysis. SETTING/PARTICIPANTS: Singapore health-care context. Respondents included bereaved parents, health and social care providers from hospital, and a community palliative care service. RESULTS: Five cases were constituted, with eight parents and 14 professionals as respondents. Eight common themes were identified, sub-categorised under three domains and interpreted theoretically: (1) Antecedents: Letting go, Acknowledging the child, Closure (2) Determinants: Suffering, Control, Systems and processes (3) Attributes: Comfort, Dying not prolonged. These factors were consistent across all cases, regardless of individual diagnoses, place of care and palliative care access. CONCLUSIONS: Elements that universally influence a good death are revealed within an ecologically sound and holistic conceptual framework. The impact of attitudes among healthcare professionals, and service delivery at systems level highlighted in this study have immediate applications in practice and policy.

Exploring the experiences of living with Lewy body dementia: An integrative review.

AIM: Lewy body dementia is a common neurodegenerative dementia with unique challenges in managing day-to-day life. A more in-depth multifaceted picture of the Lewy body dementia lived experience will enable identification of best practice and future research direction. The review aim was to explore experiences of people living with Lewy body dementia and their family carers. DESIGN: Integrative review method informed by Whittemore and Knafl, supported by the information retrieval framework PALETTE. A convergent integrated approach enabled synthesis of key findings and theme identification. DATA SOURCES: Medline, CINAHL, PsycINFO, AMED, and ALOIS databases were systematically searched to find studies published between 1995 and 2020. REVIEW METHODS: Twenty-six articles from twenty studies were synthesized (from 1583 retrieved). Quality and relevance were appraised using the Mixed-Methods Appraisal Tool and Gough's 'Weight of Evidence' framework. Data management was supported by ATLAS.ti 8 and COVIDENCE software. RESULTS: Four themes were identified: living with an uncertain diagnosis and prognosis; fear of the now - worry for the future; living with behavioural and psychiatric symptoms; and maintaining a social and emotional life. People reported difficulty finding information and support around diagnosis, disease progression and managing complex symptoms. The result is increased caregiver burden, grief and stress and reduced quality of life. CONCLUSION: Delayed diagnosis and complex symptom burden means people are not getting the timely support and information they need to live and die well. Current evidence is largely quantitative, with a focus on family caregiver burden and unmet need. The challenge remains in how to capture a more holistic picture of the lived experience for people living with Lewy body dementia and those who care for them. IMPACT: This review highlighted current knowledge and identified gaps in exploring the lived experience for people with Lewy body dementia and their families.

Perceptions of a Good Death in Children with Life-Shortening Conditions: An Integrative Review.

Background: For children with life-shortening illness, achieving a "good death" can be a tacit goal. There is little understanding of how different stakeholders perceive what a "good death" might be. Objective: To review empirical literature to construct an understanding of a "good death" for children with life-shortening conditions. Design: An integrative review approach was followed. This involved searching across Embase, Web of Science, Medline, CINAHL, and PsycINFO (no date limits set), as well as identifying eligible studies tracking reference lists. Appraisal of shortlisted articles in full text was performed, followed by data extraction, synthesis, and interpretation. Results: Analysis of articles (n = 24) yielded a dynamic and layered narrative about a good death that revolved around three themes. (1) Level of needs: includes both practical support and aspirational goals such as "do everything." (2) The composite experience: whether positive or negative adds to produce a sense of suffering. (3) Control (preservation and letting go): moving from maintaining status quo to acceptance of the child's death, the experience of which also contributes to suffering. Framed using a health care system perspective, a concept map that interprets a good death in children with life-shortening conditions is represented. Conclusions: A single yet holistic understanding of a good death experienced in the "real world" is suggested. Pediatric health and social care providers, and even policy makers, can use this new understanding to conceive alternative approaches to enhance support to dying children and their families.

Are nurse-led chemotherapy clinics really nurse-led? An ethnographic study.

BACKGROUND: The number of patients requiring ambulatory chemotherapy is increasing year on year, creating problems with capacity in outpatient clinics and chemotherapy units. Although nurse-led chemotherapy clinics have been set up to address this, there is a lack of evaluation of their effectiveness. Despite a rapid expansion in the development of nursing roles and responsibilities in oncology, there is little understanding of the operational aspects of nurses' roles in nurse-led clinics. OBJECTIVES: To explore nurses' roles within nurse-led chemotherapy clinics. DESIGN: A focused ethnographic study of nurses' roles in nurse-led chemotherapy clinics, including semi-structured interviews with nurses. SETTINGS: Four chemotherapy units/cancer centres in the UK PARTICIPANTS: Purposive sampling was used to select four cancer centres/units in different geographical areas within the UK operating nurse-led chemotherapy clinics. Participants were 13 nurses working within nurse-led chemotherapy clinics at the chosen locations. METHODS: Non-participant observation of nurse-led chemotherapy clinics, semi-structured interviews with nurse participants, review of clinic protocols and associated documentation. RESULTS: 61 nurse-patient consultations were observed with 13 nurses; of these 13, interviews were conducted with 11 nurses. Despite similarities in clinical skills training and prescribing, there were great disparities between clinics run by chemotherapy nurses and those run by advanced nurse practitioners. This included the number of patients seen within each clinic, operational aspects, nurses' autonomy, scope of practice and clinical decision-making abilities. The differences highlighted four different levels of nurse-led chemotherapy clinics, based on nurses' autonomy and scope of clinical practice. However, this was heavily influenced by medical consultants. Several nurses perceived they were undertaking holistic assessments, however they were using medical models/consultation styles, indicating medicalization of nurses' roles. CONCLUSIONS: Four different levels of nurse-led chemotherapy clinics were identified, illustrating disparities in nurses' roles. Although clinics are run by nurses they are often controlled by medical consultants, which can reduce nurses' autonomy and negatively impact on patient care.

What are the views of hospital-based generalist palliative care professionals on what facilitates or hinders collaboration with in-patient specialist palliative care teams? A systematically constructed narrative synthesis.

BACKGROUND: Hospital-based specialist palliative care services are common, yet existing evidence of inpatient generalist providers' perceptions of collaborating with hospital-based specialist palliative care teams has never been systematically assessed. AIM: To assess the existing evidence of inpatient generalist palliative care providers' perceptions of what facilitates or hinders collaboration with hospital-based specialist palliative care teams. DESIGN: Narrative literature synthesis with systematically constructed search. DATA SOURCES: PsycINFO, PubMed, Web of Science, Cumulative Index of Nursing and Allied Health Literature and ProQuest Social Services databases were searched up to December 2014. Individual journal, citation and reference searching were also conducted. Papers with the views of generalist inpatient professional caregivers who utilised hospital-based specialist palliative care team services were included in the narrative synthesis. Hawker's criteria were used to assess the quality of the included studies. RESULTS: Studies included (n = 23) represented a variety of inpatient generalist palliative care professionals' experiences of collaborating with specialist palliative care. Effective collaboration is experienced by many generalist professionals. Five themes were identified as improving or decreasing effective collaboration: model of care (integrated vs linear), professional onus, expertise and trust, skill building versus deskilling and specialist palliative care operations. Collaboration is fostered when specialist palliative care teams practice proactive communication, role negotiation and shared problem-solving and recognise generalists' expertise. CONCLUSION: Fuller integration of specialist palliative care services, timely sharing of information and mutual respect increase generalists' perceptions of effective collaboration. Further research is needed regarding the experiences of non-physician and non-nursing professionals as their views were either not included or not explicitly reported.

Nevasic audio program for the prevention of chemotherapy induced nausea and vomiting: A feasibility study using a randomized controlled trial design.

PURPOSE: Pharmacological therapy is only partially effective in preventing or treating chemotherapy induced nausea and vomiting (CINV). Therefore, exploring the complementary role of non-pharmacological approaches used in addition to pharmacological agents is important. Nevasic uses specially constructed audio signals hypothesized to generate an antiemetic reaction. The aim of this study was to examine the feasibility of conducting a randomized controlled trial (RCT) to evaluate the effectiveness of Nevasic to control CINV. METHODS: A mixed methods design incorporating an RCT and focus group interviews. For the RCT, female breast cancer patients were randomized to receive either Nevasic plus usual care, music plus usual care, or usual care only. Data were analysed using descriptive statistics and linear mixed-effects models. Five focus group interviews were conducted to obtain participants' views regarding the acceptability of the interventions in the trial. RESULTS: 99 participants were recruited to the RCT and 15 participated in focus group interviews. Recruitment targets were achieved. Issues of Nevasic acceptability were highlighted as weaknesses of the program. This study did not detect any evidence for the effectiveness of Nevasic; however, the results showed statistically significant less use of anti-emetics (p = 0.003) and borderline non-significant improvement in quality of life (p = 0.06). CONCLUSIONS: Conducting a non-pharmacological intervention using such an audio program is feasible, although difficulties and limitations exist with its use. Further studies are required to investigate the effectiveness of Nevasic from perspectives such as anti-emetic use, as well as its overall effect on the levels of nausea and vomiting.