Fibrotic interstitial lung disease - palliative care needs: a World-Café qualitative study.

OBJECTIVES: The importance of palliative care in those with advanced fibrotic interstitial lung diseases (F-ILD) is recognised, but the palliative care requirements of patients and caregivers affected by F-ILD regardless of disease course are not established. We set out to explore this and identify optimal solutions in meeting the needs of a F-ILD population in Ireland. METHODS: Implementing a World-Café qualitative research approach, we captured insights evolving, iteratively in interactive small group discussions in response to six predefined topics on palliative care and planning for the future. Thirty-nine stakeholders participated in the World-Café including 12 patients, 13 caregivers, 9 healthcare professionals, 4 industry representatives and 1 representative of the clergy. RESULTS: Palliative care emerged as fundamental to the care and treatment of F-ILDs, regardless of disease progression. Unmet palliative care needs were identified as psychological and social support, disease education, inclusion of caregivers and practical/legal advice for disease progression and end-of-life planning. Participants identified diagnosis as a particularly distressing time for patients and families. They called for the introduction of palliative care discussions at this early-stage alongside improvements in integrated care, specifically increasing the involvement of primary care practitioners in referrals to palliative services. CONCLUSION: Patients and caregivers need discussions on palliative care associated with F-ILD to be included at the point of diagnosis. This approach may address persisting inadequacies in service provision previously identified over the course of the last decade in the UK, Ireland and European F-ILD patient charters.

An e-Delphi Study to Identify Priority Areas for Education on Advance Care Planning in COPD Management.

BACKGROUND: Individuals with COPD typically experience a gradual deterioration in health, with exacerbations and increased health-care utilization in the years before death. As such, adequate planning of future care is necessary. The objective of this research was to identify gaps in health-care professionals' knowledge related to advance care planning (ACP) for patients with COPD and to prioritize content of future educational interventions for health-care professionals accordingly. METHODS: A modified e-Delphi technique with 2 rounds of rating was used. After a literature review and expert consultation, a multidisciplinary panel developed 40 statements. Statements that did not achieve consensus in round 1 were re-presented in round 2, together with new statements developed after participant feedback. Health-care professionals with expertise in caring for people with COPD were asked to rate the importance of including each of the 40 topics in future educational interventions related to ACP and COPD by using a 5-point Likert scale. Average scores for each topic were calculated and expressed as percentages. Consensus on each topic was achieved if it obtained a score of ≥80%. RESULTS: Thirty-eight health-care professionals were invited to participate, of whom, 21 (55%) took part in both rounds. Consensus was achieved for 32 of 40 statements (80%) in round 1 and for 5 of 10 statements (50%) in round 2. All statements relating to "COPD and palliative care" and "legislation for ACP" achieved consensus after one round. CONCLUSIONS: This study uncovered specific topics that related to ACP and COPD that health-care professionals believe should be included in future educational interventions. In particular, there is a clear need for training that addresses the legal issues surrounding ACP, and information on the best timing and content of ACP discussions with patients with COPD. Such training may enable health-care professionals to incorporate ACP into routine COPD management and, ultimately, improve patient care.

Dying in acute hospitals: voices of bereaved relatives.

BACKGROUND: Internationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals. METHODS: Relatives of patients who died were invited to participate in a post-bereavement postal survey. An adapted version of VOICES (Views of Informal Carers - Evaluation of Services) questionnaire was used. VOICES MaJam has 36 closed questions and four open-ended questions. Data were gathered in three waves and analysed using SPSS and NVivo. 356 respondents completed the survey (46% response rate). RESULTS: The majority of respondents (87%: n = 303) rated the quality of care as outstanding, excellent or good during the last admission to hospital. The quality of care by nurses, doctors and other staff was highly rated. Overall, care needs were well met; however, findings identified areas of care which could be improved, including communication and the provision of emotional and spiritual support. In addition, relatives strongly endorsed the provision of EoLC in single occupancy rooms, the availability of family rooms on acute hospital wards and the provision of bereavement support. CONCLUSIONS: This research provides a powerful snapshot in time into what works well and what could be improved in EoLC in acute hospitals. Findings are reported under several themes, including the overall quality of care, meeting care needs, communication, the hospital environment and support for relatives. Results indicate that improvements can be made that build on existing good practice that will enhance the experience of care for dying persons and their relatives. The study adds insights in relation to relative's priorities for EoLC in acute hospitals and can advance care providers', policy makers' and educationalists' priorities for service improvement.

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.

Advance Care Planning Education Sessions During Pulmonary Rehabilitation in Ireland.

PURPOSE: This study aimed to investigate the practice of advance care planning (ACP) education within pulmonary rehabilitation programs (PRPs) in Ireland. METHODS: All 27 PRPs in the Republic of Ireland were surveyed between May and September 2015, eliciting detailed quantitative and qualitative information about ACP education delivery. Data were analyzed using SPSS statistical software and content analysis. RESULTS: Twenty-two PRPs (82%) took part in the survey, with 86% (n = 19) of these being delivered in a hospital setting. Forty-five percent (n = 10) included ACP education of at least 20-min duration (n = 5) or as part of another session (n = 5). ACP topics discussed differed significantly across PRP sites. Sessions were delivered by respiratory nurses, physiotherapists, physicians, or palliative care physicians. Of the 12 sites currently not providing ACP education, almost half (n = 5) indicated a willingness to include this in the near future. Respondents identified enablers and barriers to ACP education, as well as staff education and service delivery gaps. CONCLUSIONS: Results demonstrate an overwhelmingly positive attitude toward ACP education. There is a need for ACP-specific education for all staff members involved in PRPs. Practical guidance on how to deliver this patient education component needs to be developed.

Voices that matter: end-of-life care in two acute hospitals from the perspective of bereaved relatives.

BACKGROUND: End-of-life care (EoLC) is an experience that touches the lives of everyone. Dying in an acute hospital is a common occurrence in developed countries across the world. Previous studies have shown that there is wide variation in EoLC and at times is experienced as being of poor quality. Assessing and measuring the quality of care provided is a key component of all healthcare systems. This paper reports on the qualitative analysis of open-ended free text questions that were asked as part of a post-bereavement survey conducted in two adult acute hospitals in Ireland. METHODS: This was a quantitative descriptive post-bereavement postal survey, gathering data retrospectively from relatives or friends of patients who died, utilising an adapted version of the VOICES (Views of Informal Carers - Evaluation of Services) questionnaire. VOICES MaJam has 29 core questions, seven questions requesting personal demographic information and four open-ended questions gathering descriptive data about the care experience during the patient's last admission to hospital. A total of 356 valid questionnaires were returned. Qualitative data were managed, coded and analysed with NVivo 10, using a template analysis framework approach. RESULTS: Three quarters (75%: n = 268) responded to at least one of the open-ended questions. Several key themes emerged, indicating areas that require particular attention in EoLC. Two themes relate to how care needs are met and how the hospital environment has a critical influence on EoLC experiences. The remaining three themes relate more to the interpersonal context including whether patients are treated with dignity and respect, the psychological, emotional and spiritual needs of patients and their family members and communication. CONCLUSIONS: Acute hospitals need to ensure that patients and their relatives receive high quality EoLC. Seeking the views of bereaved relatives should be considered by all hospitals and healthcare settings to ascertain the quality of care at end of life. This study contributes to our understanding and knowledge of what good EoLC looks like and where care can be improved, thus enabling hospitals to direct and inform quality improvement.

The potential of palliative care for patients with respiratory diseases.

Based on the demonstrated effectiveness of palliative care in the alleviation of symptoms and enhancement of life quality, it is important to incorporate palliative care early in the respiratory disease trajectory. Quality palliative care addresses eight domains that are all patient and family centred. Palliative care interventions in respiratory conditions include management of symptoms such as dyspnoea, cough, haemoptysis, sputum production, fatigue and respiratory secretion management, especially as the end-of-life nears. A practical checklist of activities based on the domains of palliative care can assist clinicians to integrate palliative care into their practice. Clinical management of patients receiving palliative care requires consideration of human factors and related organisational characteristics that involve cultural, educational and motivational aspects of the patient/family and clinicians. EDUCATIONAL AIMS: To explain the basic domains of palliative care applicable to chronic respiratory diseases.To review palliative care interventions for patients with chronic respiratory diseases.To outline a checklist for clinicians to use in practice, based on the domains of palliative care.To propose recommendations for clinical management of patients receiving palliative care for chronic respiratory diseases.

Early discharge care with ongoing follow-up support may reduce hospital readmissions in COPD.

BACKGROUND: Early discharge care and self-management education, although effective in the management of chronic obstructive pulmonary disease (COPD), do not typically reduce hospital re-admission rates for exacerbations of the disease. We hypothesized that a respiratory outreach programme that comprises early discharge care followed by continued rapid-access out-patient support would reduce the need for hospital readmission in these patients. METHODS: Two hundred and forty-six patients, acutely admitted with exacerbations of COPD, were recruited to the respiratory outreach programme that included early discharge care, follow-up education, telephone support and rapid future access to respiratory out-patient clinics. Sixty of these patients received self-management education also. Emergency department presentations and admission rates were compared at six and 12 months after, compared to prior to, participation in the programme for the same patient cohort. RESULTS: The frequency of both emergency department presentations and hospital admissions was significantly reduced after participation in the programme. CONCLUSIONS: Provision of a respiratory outreach service that includes early discharge care, followed by education, telephone support and ongoing rapid access to out-patient clinics is associated with reduced readmission rates in COPD patients.