Advance care planning for patients with chronic obstructive pulmonary disease on home non-invasive ventilation: A qualitative study exploring barriers, facilitators and patients' and healthcare professionals' recommendations.

BACKGROUND: Although home non-invasive ventilation for patients with chronic obstructive pulmonary disease and persisting hypercapnia prolongs time to hospital readmission and prognosis, they retain a poor long-term prognosis. Requiring non-invasive ventilation in this population should trigger advance care planning, yet only 50% of patients are engaged in such discussions. AIM: This study aimed to explore the barriers and facilitators to advance care planning for patients with chronic obstructive pulmonary disease on home non-invasive ventilation and generate recommendations for improving practice. STUDY DESIGN: A cross-sectional interview study took place with 10 patients with chronic obstructive pulmonary disease on home non-invasive ventilation and 12 North East Assisted Ventilation Service healthcare professionals from the North East of England. RESULTS: Three themes ('overlooked', 'disjointed care' and 'awareness and expertise') were identified. Patients with chronic obstructive pulmonary disease are a 'forgotten about' population, exacerbated by prejudice and unpredictable disease trajectories. Recognition as a distinct and underserved population may improve care and advance care planning. All participants recognised a lack of care continuity, including limited collaboration and communication between services, as a significant barrier to advanced care planning. Additionally, lacking understanding of the rationale and positive impacts of advance care planning, exacerbated by a lack of expertise in difficult conversations, was a barrier to advance care planning. CONCLUSIONS: Patients and healthcare professionals highlighted the need for individualised and ongoing advance care planning, particularly around prognosis and care preferences. Discussions should be initiated by familiar clinicians. Effective communication between services, clear agreements and protocols and upskilling healthcare professionals may ensure continuity of care.

Palliative care simulation for internal medicine trainees: development and pilot study.

OBJECTIVES: Shape of training has recognised that 'Managing End-of-Life and Applying Palliative Care Skills' is a key competency for internal medicine trainees. It provides the opportunity and challenge to improve palliative care training for generalist physicians. Simulation has been recognised internationally as a holistic teaching and assessment method. This study aimed to produce a palliative medicine simulation training package for internal medicine trainees for delivery by palliative medicine trainees providing the former opportunity to practice assessment and management of patients with life-limiting illness and the latter teaching and management opportunities. METHODS: A regional group of palliative medicine trainees were trained in simulation and debrief. Nominal and focus group techniques designed a simulation training package. Learning outcomes were mapped to the internal medicine curriculum descriptors. RESULTS: Palliative simulation for internal medicine trainees (PALL-SIM-IMT) is a training package meeting internal medicine trainees' curriculum requirements. Regional pilots have demonstrated feasibility for delivery by palliative medicine trainees and improvement in recipients' confidence in all curriculum descriptors. CONCLUSIONS: PALL-SIM-IMT can aid competency achievement for the provision of generalist palliative care by internal medicine trainees. It allows reciprocal development of palliative medicine trainees' leadership and teaching skills. National adoption and evaluation is ongoing.

Multicenter Evaluation of 434 Hospital Deaths From COVID-19: How Can We Improve End-of-Life Care During a Pandemic?

CONTEXT: The pandemic has substantially increased the workload of hospital palliative care providers, requiring them to be responsive and innovative despite limited information on the specific end of life care needs of patients with COVID-19. Multi-site data detailing clinical characteristics of patient deaths from large populations, managed by specialist and generalist palliative care providers are lacking. OBJECTIVES: To conduct a large multicenter study examining characteristics of COVID-19 hospital deaths and implications for care. METHODS: A multi-center retrospective evaluation examined 434 COVID-19 deaths in 5 hospital trusts over the period March 23, 2020 to May 10, 2020. RESULTS: Eighty three percent of patients were over 70%-32% were admitted from care homes. Diagnostic timing indicated over 90% of those who died contracted the virus in the community. Dying was recognized in over 90% of patients, with the possibility of dying being identified less than 48 hours from admission for a third. In over a quarter, death occurred less than 24 hours later. Patients who were recognized to be dying more than 72 hours prior to death are most likely to have access to medication for symptom control. CONCLUSION: This large multicenter study comprehensively describes COVID-19 deaths throughout the hospital setting. Clinicians are alert to and diagnose dying appropriately in most patients. Outcomes could be improved by advance care planning to establish preferences, including whether hospital admission is desirable, and alongside this, support the prompt use of anticipatory subcutaneous medications and syringe drivers if needed. Finally, rapid discharges and direct hospice admissions could better utilize hospice beds and improve care.

Inequalities in awareness and availability of bereavement services in North-East England.

OBJECTIVES: National guidance recommends equality in access to bereavement services; despite this, awareness and availability appears inconsistent. The aim of this study was to explore availability and accessibility of bereavement services across the North-East of England and to highlight issues potentially applicable across the UK, at a time of unprecedented need due to the impact of COVID-19. METHODS: Phase 1: an eight item, web-based survey was produced. A survey link was cascaded to all GP practices (General Practitioners) in the region. Phase 2: an email was sent to all services identified in phase 1, requesting details such as referral criteria and waiting times. RESULTS: All 392 GP practices in the region were invited to participate. The response rate was 22% (85/392). Twenty-one per cent (18/85) of respondents reported that they do not refer patients, comments included 'not aware of any services locally'. A total of 36 services were contacted with 72% responding with further information. Most bereavement specific support was reliant on charity-funded services including hospices, this sometimes required a pre-existing link with the hospice. Waiting times were up to 4 months. CONCLUSIONS: Although multiple different, usually charity-funded services were identified, awareness and accessibility were variable. This survey was conducted prior to the COVID-19 pandemic, where complex situations surrounding death is likely to impact on the usual grieving process and increase the need for bereavement support. Meanwhile, charities providing this support are under severe financial strain. There is an urgent need to bridge the gap between need and access to bereavement services.

A qualitative study of nursing staff experiences of delirium in the hospice setting.

BACKGROUND:: Delirium is a common condition occurring in 13-42% of people admitted to palliative care units and up to 88% of these patients are at the end of their lives. It is frequently unrecognised and distressing to all those affected-patients, families and health professionals. In addition, there is considerable uncertainty surrounding its trajectory and optimal management, both of which can be inconsistent. AIMS:: This study aims to explore the experience of nursing staff who are caring for patients with delirium in the hospice environment and understand any potential barriers to its management. METHODS:: Semistructured interviews using emotional touchpoints were conducted with 12 nurses and six healthcare assistants in three hospices in North East England. Data was analysed using interpretative phenomenological analysis. FINDINGS:: The results highlighted gaps in knowledge and understanding in the management of delirium. The results demonstrated delirium had significant emotional effects, which were associated with uncertainty in managing the condition and the impact of this uncertainty on the relationship between staff and patients. CONCLUSION:: This study highlights the emotional impact of caring for patients with delirium. Future work is needed to address the areas of uncertainty identified and ascertain how to best support nursing staff in these challenges.

Challenges in end-of-life dementia care.

Dementia is a chronic, progressive disease that is now much more widely recognised and treated. Patients with dementia may require palliative care when they reach the end stage of their illness, or they may have mild-moderate cognitive symptoms comorbid with a life-limiting illness. The variety of presentations necessitates a highly individual approach to care planning, and patients should be encouraged to set their own goals and contribute to advanced care planning where possible. Assessment and management of distressing symptoms at the end of life can be greatly helped by a detailed knowledge of the individuals' prior wishes, interdisciplinary communication and recognition of changes in presentation that may result from new symptoms, for example, onset of pain, nutritional deficits and infection. To navigate complexity at the end of life, open communication that involves patients and families in decisions, and is responsive to their needs is vital and can vastly improve subjective experiences. Complex ethical dilemmas may pervade both the illness of dementia and provision of palliative care; we consider how ethical issues (eg, providing care under restraint) influence complex decisions relating to resuscitation, artificial nutrition and treatment refusal in order to optimise quality of life.

Screening for delirium in specialist palliative care inpatient units: perceptions and outcomes.

OBJECTIVES: The UK National Institute for Health and Care Excellence (NICE) indicate that palliative care patients are at high risk of delirium and should be screened for it using the short confusion assessment method (short CAM). This study aimed to assess the perceptions of the short CAM for delirium screening amongst health-care workers in specialist palliative care inpatient units (SPCUs) and to investigate its use as a screening instrument. METHODS: Patients in 5 SPCUs in the North East of England were screened for delirium using the short CAM and a staff survey assessed the acceptability of the short-CAM in this setting. RESULTS: Of the 63 staff surveyed, 79.4% felt screening for delirium was important and 59.3% found the short CAM 'not at all' burdensome to complete. However, only 40.7% felt that the short-CAM often accurately reflected patients' conditions and none felt it always accurately reflected patients' condition. Of 298 patients screened, 20% screened positive on the short CAM. Malignant and intra-cerebral diseases were significant independent predictors of a positive screen. Hospice length of stay and in-hospice mortality were higher in those with a positive result (66.7%) than in those without (38.2%). CONCLUSIONS: Health professionals deem delirium screening to be important in SPCUs, but may not support routine use of the short CAM. This could reflect a limited perceived impact on care and lack of confidence in this tool to reflect a complex patient group.