Do Healthy People Engage With Education About Death, Dying and Advance Care Planning? An Early Evaluation of the Omega Course.

Background: Death can be difficult to address personally, to discuss and to plan for. Since 2016 The Omega Course (Omega) has educated local people in Kenilworth, UK, about death and dying; broaching these issues and teaching communication skills whilst enabling social interaction. It aspires to produce practical outcomes with positive implications for end of life (EoL) planning and future neighbourhood care within the town. Aim: To investigate the impact of Omega on the attitudes and actions of participants. Method: Anonymous questionnaires, distributed by Qualtrics, or by post if preferred, were sent to 62 participants of Omega aged 22-94 two and a half years post course institution. Thematic analysis and inferential statistics were used. Results: 23 replies (37%) scored changes across 4 areas; barriers to discussion, ease discussing death, fears about death and future planning capability. All showed a significant beneficial change using a Paired Sample t-test (P< .01). Respondents noted common fears of death and dying, barriers to discussing the topic and planning for it. The course helped to allay fear, enabled discussion and encouraged planning for death and EoL. Respondents rated the course as 9.1/10 for achieving its aims. They appreciated discussing death and dying in a supportive environment and found the approach effective in developing their skills and changing attitudes. Conclusion: Omega has the potential to change attitudes towards death; promoting discussion, planning, and tackling misconceptions.

Comparison of informal caregiver and named nurse assessment of symptoms in elderly patients dying in hospital using the palliative outcome scale.

OBJECTIVES: A prospective study of symptom assessments made by a healthcare professional (HCP; named nurse) and an informal caregiver (ICG) compared with that of the patient with a terminal diagnosis. To look at the validity of HCP and ICG as proxies, which symptoms they can reliably assess, and to determine who is the better proxy between HCP and ICG. METHODS: A total of 50 triads of patient (>65 years) in the terminal phase, ICG and named nurse on medical wards of an acute general hospital. Assessments were made using the patient and caregiver versions of the palliative outcome scale (POS), all taken within a 24 h period. Agreement between patient-rated, ICG-rated and HCP-rated POS and POS for symptoms (POS-S) was measured using weighted-κ statistics. Demographic and clinical data on each group of participants were collected. RESULTS: ICG assessments have higher agreement with those of the patient than HCP. Better agreement in both groups was found for physical symptoms, and best agreement was for pain. The worst agreements were for psychological symptoms, such as anxiety and depression, and for satisfaction with information given. Psychological symptoms are overestimated by both ICG and HCP. CONCLUSIONS: ICGs are more reliable proxies than HCPs. A trend for overestimation of symptoms was found in both groups which may lead to undervaluation of the quality of life by proxy and overtreatment of symptoms. This highlights the need to always use the patient report when possible, and to be aware of the potential flaws in proxy assessment. Reasons for overestimation by proxies deserve further research.

PA14†The legacy of cancer: why a health promoting approach is so important in palliative care.

BACKGROUND: A diagnosis of cancer and anticipated death of a loved one has a significant impact on the whole family. Research has mainly focused on carers, with little emphasis on the wider, long-term implications. AIM: To explore the cancer beliefs of patients with advanced cancer and their relatives. The focus was on their lived experiences and how these affected their beliefs, attitudes and constructions of cancer risk. METHODS: 27 in-depth, semi-structured interviews were conducted with advanced breast, colorectal or lung cancer patients and their close relatives. Interviews were recorded and transcribed verbatim. Data was analysed using the constant comparison method. RESULTS: A core category of fear, helplessness and fatalism emerged from the data. Family history was the most salient cancer risk factor and a diagnosis of advanced cancer increased perceptions of vulnerability for first-degree relatives. For relatives, the uncertainty and chaotic loss of control that accompanied an advanced cancer diagnosis resulted in multiple levels of fear and intensely negative or fatalistic attitudes to cancer. In contrast, patients held less negative views of cancer. They described several means of regaining control, including the importance of leaving a legacy - the hope that their situation would have a positive impact on others in the future. CONCLUSION: Despite the prominence of 'prevention' in definitions of palliative care, services have evolved that are largely professional led and reactive. Adopting a health promoting approach based on empowerment is important, not just for improving care, but also increasing perceptions of control that may reduce negative cancer beliefs.

Information needs and prostate cancer: the development of a systematic means of identification.

OBJECTIVE: To design, from first principles, a valid and reliable scale for assessing the importance of specific items of information needed by patients with prostate cancer that would be straightforward to use in clinical settings, as despite its prevalence, there is little research focusing specifically on the information needs associated with prostate cancer. PATIENTS AND METHODS: Several stages of consultation and modification were used to inform the development of a scale which was then piloted on 96 patients with prostate cancer. Respondents were asked to rate the importance they placed on a range of prostate cancer-related topics of information, and the extent to which they felt these information needs had been met. The construct and content validity of the instrument were established and an exploratory factor analysis used to guide restructuring of the tool. Internal consistency/reliability was calculated using Cronbach's alpha. RESULTS: Using the scale showed that men with prostate cancer placed considerable importance on a broad range of information needs, most of which had been inadequately met. Age had a significant influence on the overall importance attributed to information, with younger patients having more need for information. The construct and content validity of the instrument were established. The factor analysis revealed four discrete factors which together explained > 68% of the variance, termed 'basics of prostate cancer care', 'disease management', 'physical well-being' and 'self-help'. Internal consistency/reliability was satisfactory (alpha = 0.91). CONCLUSIONS: The basis of a tool capable of ascertaining the information needs of patients with prostate cancer was developed; it may offer clinicians a valid means of ascertaining information preferences and hence potentially enhance the quality of service provided. Further research is now required to refine the tool and test the effect of its longitudinal use in clinical practice on patient satisfaction and outcome.