Home symptom management training programme: carer evaluation.

OBJECTIVES: Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If breakthrough symptoms are not treated in a timely manner, symptoms can escalate quickly causing increased suffering resulting in unwanted hospital transfers. Many carers report feeling motivated but uneducated for the task of medicine management, especially if it involves preparation and/or administration of subcutaneous medicines This study assesses the impact of an education and resource package, caring@home, on carers' confidence, knowledge, and skills in managing palliative symptoms at home using subcutaneous medicines. METHODS: Nurses trained volunteer carers on the use of the package. Carers were invited to complete a 10 min written evaluation survey and to consider consenting to a 30 min semistructure phone interview. RESULTS: Fifty carers returned surveys and 12 were interviewed. Most carers agreed or strongly agreed that the package provided them with the necessary knowledge, skills and confidence to safely and confidently manage breakthrough symptoms using subcutaneous medicines, further, they would recommend the package to others. Interview analysis revealed three main themes: (1) hesitation and motivation to adopt expanded carer role; (2) the importance of a layered approach to support; and (3) avoiding perceived unnecessary contact with nurses. CONCLUSION: The programme can be used by clinical services to empower carers to help enable a person to be cared for, and to die at home.

The COVID-19 Pandemic: Bereavement Experiences Between Hospital and Home Deaths in Palliative Care.

BACKGROUND: Australian COVID-19 public health measures reduced opportunities for people to communicate with healthcare professionals and be present at the death of family members/friends. AIM: To understand if pandemic-specific challenges and public health measures during the COVID-19 pandemic impacted end-of-life and bereavement experiences differently if the death, supported by palliative care, occurred in a hospital or at home. DESIGN: A cross-sectional online survey was completed by bereaved adults during 2020-2022. Analyses compared home and in-patient palliative care deaths and bereavement outcomes. Additional analyses compared health communication outcomes for those identified as persons responsible or next of kin. SETTING/PARTICIPANTS: Of 744 bereaved people; 69% (n = 514) had a death in hospital and 31% (n = 220) at home. RESULTS: The COVID-19 public health measures influenced people's decision to die at home. Compared to hospital deaths, the home death group had higher levels of grief severity and grief-related functional impairment. Only 37% of bereaved people received information about bereavement and support services. 38% of participants who were at least 12 months postdeath scored at a level suggestive of possible prolonged grief disorder. Levels of depression and anxiety between the two groups were not significantly different. CONCLUSIONS: These findings highlight the need for health services to recognize bereavement as fundamental to palliative and health care and provide pre- and post death grief and bereavement care to ensure supports are available particularly for those managing end-of-life at home, and that such supports are in place prior to as well as at the time of the death.

An evaluation of an online education programme to improve nurses' ability to support carers to use subcutaneous medicines.

BACKGROUND: Most Australians say they wish to die at home, but many are admitted to inpatient facilities for symptom management. Caring@home resources can be used to support informal carers to manage breakthrough symptoms safely using subcutaneous medicines. Nurses require education about how to teach informal carers to use these resources. AIM: To evaluate the effectiveness and relevance of an online education programme for registered nurses (RNs) about using the caring@home resources. METHODS: Nurses must complete an online survey prior to the commencement of the online education programme and again upon completion to assess their change in skills, knowledge, confidence and attitudes of the RNs. T-tests were conducted to compare average pre- and post-education scores. FINDINGS: The knowledge, skills and confidence of RNs to teach carers improved significantly following the completion of an education programme. There was a significant change in attitude, meaning that the perceived benefit of teaching informal carers to give subcutaneous medicines improved. All reported they would use the resources in their clinical practice. CONCLUSION: The online education programme is an effective and cost-efficient strategy to educate nurses to support informal carers to help manage breakthrough symptoms using subcutaneous medicines.

Hospital-service use in the last year of life by patients aged ⩾60 years who died of heart failure or cardiomyopathy: A retrospective linked data study.

BACKGROUND: Understanding patterns of health care use in the last year of life is critical in health services planning. AIM: To describe hospital-based service and palliative care use in hospital in the year preceding death for patients who died of heart failure or cardiomyopathy in Queensland from 2008 to 2018 and had at least one hospitalisation in the year preceding death. DESIGN: A retrospective data linkage study was conducted using administrative health data relating to hospitalisations, emergency department visits and deaths. PARTICIPANTS AND SETTING: Participants included were those aged ⩾60 years, had a hospitalisation in their last year of life and died of heart failure or cardiomyopathy in Queensland, Australia. RESULTS: Of the 4697 participants, there were 25,583 hospital admissions. Three quarters (n = 3420, 73%) of participants were aged ⩾80 years and over half died in hospital (n = 2886, 61%). The median number of hospital admissions in the last year of life was 3 (interquartile range [IQR] 2-5). The care type was recorded as 'acute' for 89% (n = 22,729) of hospital admissions, and few (n = 853, 3%) hospital admissions had a care type recorded as 'palliative.' Of the 4697 participants, 3458 had emergency department visit(s), presenting 10,330 times collectively. CONCLUSION: In this study, patients who died of heart failure or cardiomyopathy were predominantly aged ⩾80 years and over half died in hospital. These patients experienced repeat acute hospitalisations in the year preceding death. Improving timely access to palliative care services in the outpatient or community setting is needed for patients with heart failure.

Family carer needs in advanced disease: systematic review of reviews.

BACKGROUND: Family carers are vital in the management and delivery of home-based palliative care. Decision-makers need to know what the most commonly expressed unmet needs of family carers are to target available support services. AIM: To identify the most commonly expressed needs of family carers of people with an advanced disease, assess the quality of current evidence, and set an agenda for future research and clinical practice. DESIGN: A systematic review of reviews, prospectively registered on PROSPERO. Study quality was assessed using the Joanna Briggs Institute critical appraisal checklist for systematic reviews and research syntheses. DATA SOURCES: MEDLINE, Embase, Emcare, PsycINFO, CINAHL, Informit and Cochrane Library were searched for reviews about the needs of carers looking after patients with advanced disease from 2010 to 2020. RESULTS: Findings from 21 reviews identified emotional support, disease-specific knowledge, carer role responsibilities, self-care and general practical support as the most commonly expressed needs expressed by family carers. Additionally, access to professional services, formal education opportunities and communication with health professionals were identified as caregivers' preferred ways of having these needs met. Extraction of carer-specific needs was challenging at times as results were often combined with patient results in reviews. CONCLUSION: Practical difficulties exist in effectively resourcing services to meet the needs of family carers. Information regarding the most commonly expressed needs shared by caregivers and their preferred delivery source can provide an opportunity to focus available support services to achieve the highest possible impact for carers of patients with advanced disease. PROSPERO REGISTRATION NUMBER: CRD42018088678.

Elements of Integrated Palliative Care in Chronic Heart Failure Across the Care Continuum: A Scoping Review.

BACKGROUND: Individuals with chronic heart failure experience high symptom burden, reduced quality of life and high health care utilisation. Although there is growing evidence that a palliative approach, provided concurrently with usual treatment improves outcomes, the method of integrating palliative care for individuals living with chronic heart failure across the care continuum remains elusive. AIM: To examine the key elements of integrated palliative care recommended for individuals living with chronic heart failure across the care continuum. DESIGN: Scoping review. DATA SOURCES: Databases searched were CINAHL, Ovid MEDLINE, Scopus and OpenGrey. Studies written in English and containing key strategic elements specific to chronic heart failure were included. Search terms relating to palliative care and chronic heart failure and the Joanna Briggs Institute methodology for scoping reviews was used. RESULTS: Seventy-nine (79) articles were selected that described key elements to integrate palliative care for individuals with chronic heart failure. This review identifies four levels of key strategic elements: 1) clinical; 2) professional; 3) organisational and 4) system-level integration. Implementing strategies across these elements facilitates integrated palliative care for individuals with chronic heart failure. CONCLUSIONS: Inter-sectorial collaborations across systems and the intersection of health and social services are essential to delivering integrated, person-centred palliative care. Further research focussing on patient and family needs at a system-level is needed. Research with strong theoretical underpinnings utilising implementation science methods are required to achieve and sustain complex behaviour change to translate key elements.

Palliative care in chronic heart failure: a theoretically guided, qualitative meta-synthesis of decision-making.

International clinical practice guidelines recommend that patients with chronic heart failure receive timely and high-quality palliative care. However, integrating palliative care is highly variable and dependent on decision-making and care models. This meta-synthesis aimed to examine health care professionals' decision-making processes and explore factors impacting decisions to refer or deliver palliative care in chronic heart failure. The electronic databases SCOPUS, CINAHL, and Medline were searched. Included studies were those that reported health care professionals' perceptions of palliative care in chronic heart failure through qualitative data collection, were written in English, and were peer-reviewed articles. Included articles were analysed using Thomas and Harden's approach. The dual-process theory was used and applied a priori to organise the findings. The perception of palliative care as a transition and active treatment failure fit within the intuitive system of thinking in the dual-process theory. The theme that overlapped into both intuitive and analytical systems of thinking was acquiring patient and illness information themes reflecting the analytical system of thinking were professional role and experience, pre-existing decision pathways, and balancing viewpoints. This meta-synthesis identified factors influencing the decision-making process in referring patients with chronic heart failure to palliative care. The findings from this review highlight the need for further development of decision-making tools or facilitate guidelines to assist health care professionals' shared decision-making to improve patient outcomes.