The palliative care experience in Irish nursing homes during the COVID-19 pandemic: a survey of residents, family, and staff.

BACKGROUND: Nursing homes and other long-term care services account for a disparate share of COVID-19 cases and casualties worldwide. During COVID-19 there is a distinct need to preserve a holistic view of the wellbeing of residents of nursing homes, be mindful of their rights as citizens, and to be aware of protecting residents from infection. The delivery of health and social care throughout a pandemic must remain person-centred and adhere to a human rights-based approach. METHODS: This study aimed to capture nursing home residents, their families and staff's perspective of the nursing homes residents experience, approaches of staff and the nursing home environment. An online survey was distributed via stakeholder networks and online platforms across Ireland. This study was performed and reported in line with the Consensus-Based Checklist for Reporting of Survey Studies (CROSS). RESULTS: 25 residents, 42 family members and 51 staff completed the survey (n = 118). Across the domains measured all but one aspect scored above 50% (residents get up and go to bed when they want 41.5%) with the highest score of 89.1% scored for the nursing home is comfortable and well-kept. Results highlight evidence of positive experiences and endeavours to preserve social connections, residents were in a safe place cared for by staff who did their best in a difficult position and who went above and beyond their duty of care. However, some families reported poor communication, no internet connections, not enough phones or tablets, and that staff were busy and unable at times to assist residents who needed help using phones/tablets. CONCLUSION: This study highlights the importance of human rights and how they ought to inform and shape the advancement of public health advice and policy documents. Overall, nursing home residents, their families and staff reported favourably on the study measures. However, issues pertaining to communication are essential and there is a need to address issues such as the provision of accurate timely information, communication infrastructure and resources, and inconsistencies in communications. Of note is that while healthcare professionals have a duty to uphold the rights of nursing home residents, they themselves have human rights which must also be protected and supported.

Decision-making in palliative care: patient and family caregiver concordance and discordance-systematic review and narrative synthesis.

BACKGROUND: Decision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and function between patients and family caregivers in palliative care is not well understood. OBJECTIVES: To identify key factors and/or processes which underpin concordance and/or discordance between patients and family caregivers with respect to their preferences for and decisions about palliative care; and ascertain how patients and family caregivers manage discordance in decision-making in palliative care. METHODS: A systematic review and narrative synthesis of original studies published in full between January 2000 and June 2021 was conducted using the following databases: Embase; Medline; CINAHL; AMED; Web of Science; PsycINFO; PsycARTICLES; and Social Sciences Full Text. RESULTS: After full-text review, 39 studies were included in the synthesis. Studies focused primarily on end-of-life care and on patient and family caregiver preferences for patient care. We found that discordance between patients and family caregivers in palliative care can manifest in relational conflict and can result from a lack of awareness of and communication about each other's preferences for care. Patients' advancing illness and impending death together with open dialogue about future care including advance care planning can foster consensus between patients and family caregivers. CONCLUSIONS: Patients and family caregivers in palliative care can accommodate each other's preferences for care. Further research is needed to fully understand how patients and family caregivers move towards consensus in the context of advancing illness.

Effectiveness and cost-effectiveness of out-of-hours palliative care: a systematic review.

Background: Out-of-hours palliative care is a priority for patients, caregivers and policymakers. Approximately three quarters of the week occurs outside of typical working hours, and the need for support in care of serious and terminal illness during these times is commonplace. Evidence on relevant interventions is unclear. Aim: To review systematically the evidence on the effect of out-of-hours specialist or generalist palliative care for adults on patient and caregiver outcomes, and costs and cost-effectiveness. Methods: A systematic review of peer-reviewed and grey literature was conducted. We searched Embase, MEDLINE [Ovid], Cochrane Library, CINAHL, Allied and Complementary Medicine [Ovid], PsycINFO, Web of Science, Scopus, EconLit (Ovid), and grey literature published between 1 January 2000 and 12 th November 2019. Studies that comparatively evaluated the effect of out-of-hours specialist or generalist palliative care for adults on patient and caregiver outcomes, and on costs and cost-effectiveness were eligible, irrespective of design. Only English-language studies were eligible. Two reviewers independently examined the returned studies at each stage (title and abstract review, full-text review, and quality assessment). Results: We identified one eligible peer-reviewed study, judged as insufficient quality. Other sources returned no eligible material. The systematic review therefore included no studies. Conclusions: The importance of integrated, 24-hour care for people in line with a palliative care approach is not reflected in the literature, which lacks evidence on the effects of interventions provided outside typical working hours. Registration: PROSPERO CRD42018111041.

Advance care planning in COPD: guidance development for healthcare professionals.

OBJECTIVES: To examine current practices, attitudes and levels of confidence related to advance care planning (ACP) in patients with chronic obstructive pulmonary disease (COPD) among healthcare professionals working in Ireland. This will inform future clinical guidance development. METHODS: A cross-sectional survey of healthcare professionals. RESULTS: There were 143 participants (109 general practitioners, 25 nurses, 7 physiotherapists and 2 consultant physicians). The majority (82%, n=117) cared for patients with COPD weekly, but only 23% (n=33) had initiated ACP with a patient with COPD over the previous 6 months. Overall, 59% (n=85) answered ≥6 of 8 general knowledge questions correctly. Participants demonstrated positive attitudes towards ACP (mean score 3.6/5.0), but confidence levels were low (2.2/4.0). Most thought ACP was appropriate for patients with severe or very severe COPD (71%, n=101%, and 91%, n=130, respectively) but were unsure or felt that it was not appropriate for those with mild-moderate COPD. However, almost all participants (97%, n=139) stated that if a patient expressed a desire to have ACP discussions, they would comply. Topics most likely to be discussed related to diagnosis and treatment options. Death and end-of-life issues were rarely discussed. The death of a family member or friend and participation in support groups were identified as new 'triggers' for initiating ACP. CONCLUSIONS: Targeted education to improve general knowledge and confidence levels among healthcare professionals, together with initiatives to increase public awareness of ACP so that patients themselves might be more inclined to start the discussion, may help increase the uptake of ACP for this patient group.

Psychological and psychotherapeutic approaches for people with motor neuron disease: A qualitative study.

The aim of the study was to review current psychological and psychotherapeutic approaches for people with MND used by therapists in Ireland and to gain an insight into approaches used elsewhere. We used a qualitative study collecting data from eight therapists in Ireland and two therapists in the UK and Italy using semi-structured interviews and analysed the results using principles of grounded theory. Therapists' approaches included supporting the person in the 'here and now' by providing a 'fine focus' on what they can still do, re-affirming the person in their ability to have an active role in their life and supporting the person in exploring their emotions. The desired outcome was to provide the person with space to talk, express feelings and be able to self-direct. In conclusion, there is no consensus about a specific approach, due to the complexity of the disease and the variety of presentations. Different approaches may be required during disease progression. The findings indicate that therapists would benefit from having experience of MND, the limitations in mobility, communication and cognitive processing.