Better Palliative Care for people with a Dementia: Summary of InterdisciplinaryWorkshop Highlighting Current Gaps and Recommendations for Future Research

Background: Dementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such. People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so. Main body: An interdisciplinary workshop on "Palliative Care in Neurodegeneration, with a focus on Dementia", was held in Cork, Ireland, in May 2016. The key aim of this workshop was to discuss the evidence base for palliative care for people with dementia, to identify 'gaps' for clinical research, and to make recommendations for interdisciplinary research practice. To lead the discussion throughout the day a multidisciplinary panel of expert speakers were brought together, including both researchers and clinicians from across Ireland and the UK. Targeted invitations were sent to attendees ensuring all key stakeholders were present to contribute to discussions. In total, 49 experts representing 17 different academic and practice settings, attended. Key topics for discussion were pre-selected based on previously identified research priorities (e.g. James Lind Alliance) and stakeholder input. Key discussion topics included: i. Advance Care Planning for people with Dementia; ii. Personhood in End-of-life Dementia care; iii. Topics in the care of advanced dementia at home. These topics were used as a starting point, and the ethos of the workshop was that the attendees could stimulate discussion and debate in any relevant area, not just the key topics, summarised under iv. Other priorities. Conclusions: The care experienced by people with dementia and their families has the potential to be improved; palliative care frameworks may have much to offer in this endeavour. However, a solid evidence base is required to translate palliative care into practice in the context of dementia. This paper presents suggested research priorities as a starting point to build this evidence base. An interdisciplinary approach to research and priority setting is essential to develop actionable knowledge in this area

Improving primary palliative care in Scotland:lessons from a mixed methods study

BACKGROUND: Since 2012, all GP practices across Scotland have been supported to take a systematic approach to end-of-life care, by helping them to identify more patients for palliative care through a Palliative Care Directed Enhanced Service (DES). We aimed to understand the impact of this initiative. METHODS: Routine quantitative data from the 2012/13, and 2013/14 DES were collected from regional health boards, analysed and discussed. Qualitative data were collected from a sample of 2012/13 DES returns and analysed using Thematic Analysis. RESULTS: Data were received from 512 practices in nine Scottish Health boards for the 2012-13 DES and 638 practices in 11 Health boards for 2013-14. A sample of 90 of the returns for 2012-13 was selected for qualitative analysis. In 2012-13, 72 % of patients who died of cancer were listed on the palliative care register (PCR) before death while 27 % of patients who died as a result of non-malignant conditions were listed on the PCR. In 2013-14, cancer identification remained the same but identification of people dying with other long-term conditions had improved to 32.5 %. We identified several key issues needed to improve palliative care in the community. The need for training to identify patients with palliative care needs (particularly non-cancer); communication skills training; improvements in sharing information across the NHS; under-resource of and lack of coordination with district nurses; improvements in information technology; and tools for working with enlarged palliative care registers. CONCLUSIONS: The DES helped more patients with long-term conditions (LTC) receive generalist palliative care. Approaching generalist palliative care as anticipatory care could facilitate communication between GPs and patients/families and remove some barriers to early identification of palliative care needs. Improvement of information technology and use of identification tools like the SPICT™ may improve professionals’ communication with each other and help may make identification and management of patients easier. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12875-015-0391-x) contains supplementary material, which is available to authorized users

'Burden to others' as a public concern in advanced cancer:a comparative survey in seven European countries

Background: Europe faces an enormous public health challenge with aging populations and rising cancer incidence. Little is known about what concerns the public across European countries regarding cancer care towards the end of life. We aimed to compare the level of public concern with different symptoms and problems in advanced cancer across Europe and examine factors influencing this. Methods: Telephone survey with 9,344 individuals aged >= 16 in England, Flanders, Germany, Italy, Netherlands, Portugal and Spain. Participants were asked about nine symptoms and problems, imagining a situation of advanced cancer with less than one year to live. These were ranked and the three top concerns examined in detail. As 'burden to others' showed most variation within and between countries, we determined the relative influence of factors on this concern using GEE and logistic regression. Results: Overall response rate was 21%. Pain was the top concern in all countries, from 34% participants (Italy) to 49% (Flanders). Burden was second in England, Germany, Italy, Portugal, and Spain. Breathlessness was second in Flanders and the Netherlands. Concern with burden was independently associated with age (70+ years, OR 1.50; 95%CI 1.24-1.82), living alone (OR 0.82, 95%CI 0.73-0.93) and preferring quality rather than quantity of life (OR 1.43, 95%CI 1.14-1.80). Conclusions: When imagining a last year of life with cancer, the public is not only concerned about medical problems but also about being a burden. Public education about palliative care and symptom control is needed. Cancer care should include a routine assessment and management of social concerns, particularly for older patients with poor prognosis

Public preferences and priorities for end-of-life care in Kenya:a population-based street survey

BACKGROUND: End-of-life care needs are great in Africa due to the burden of disease. This study aimed to explore public preferences and priorities for end-of-life care in Nairobi, Kenya. METHODS: Population-based street survey of Kenyans aged ≥18; researchers approached every 10th person, alternating men and women. Structured interviews investigated quality vs. quantity of life, care priorities, preferences for information, decision-making, place of death (most and least favourite) and focus of care in a hypothetical scenario of serious illness with <1 year to live. Descriptive analysis examined variations. RESULTS: 201 individuals were interviewed (100 women) representing 17 tribes (n = 90 44.8%, Kikuyu). 56.7% (n = 114) said they would always like to be told if they had limited time left. The majority (n = 121, 61.4%) preferred quality of life over quantity i.e. extending life (n = 47, 23.9%). Keeping a positive attitude and ensuring relatives/friends were not worried were prioritised above having pain/discomfort relieved. The three most concerning problems were pain (45.8%), family burden (34.8%) and personal psychological distress (29.8%). Home was both the most (51.1% n = 98) and least (23.7% n = 44) preferred place of death. CONCLUSION: This first population-based survey on preferences and priorities for end-of-life care in Africa revealed that psycho-social domains were of greatest importance to the public, but also identified variations that require further exploration. If citizens’ preferences and priorities are to be met, the development of end-of-life care services to deliver preferences in Kenya should ensure an holistic model of palliative care responsive to individual preferences across care settings including at home

Music Therapy Assessment Tool for Awareness in Disorders of Consciousness (MATADOC): reliability and validity of a measure to assess awareness in patients with disorders of consciousness

Background: Prolonged Disorders of Consciousness (PDOC) describes a population where a consciousness disorder has persisted for at least four weeks post injury but is still under investigation. Complex motor, sensory, communication, and cognitive impairments cause challenges with diagnosis, assessment, and intervention planning. Developing sensitive, reliable, and valid measures is a central concern. The auditory modality is the most sensitive for identifying awareness; however, the current standardized behavioral measures fail to provide adequate screening and measurement of auditory responsiveness. The Music Therapy Assessment Tool for Awareness in Disorders of Consciousness (MATADOC) is a recently standardized measure for assessment with PDOC; however, psychometric values for two of its subscales require examination. Objective: To determine the measurement characteristics and properties of the MATADOC subscales two and three. Methods: In a convenience sample of 21participants with PDOC, a prospective repeated measures study examined inter-rater reliability (IRR) and test-retest reliability (TRR) for both subscales and internal consistency of subscale two. Results: Overall, the items from the MATADOC subscales two and three demonstrated good agreement across and within assessors, with some variability on two identified items. Conclusions: The MATADOC is a standardized measure for assessment of auditory responsiveness in PDOC. Psychometric limitations for the two identified items may have resulted from variations in music therapist clinical experience and training, leading to variations in the administration and interpretation of PDOC patient responses to these two MATADOC assessment items. Although its psychometric properties could be improved, the MATADOC’s clinimetric properties make it a valuable assessment to guide clinical work for patients with PDOC

Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study.

Background Lesbian, gay, bisexual and/or trans (LGBT) people have higher risk of certain life-limiting illnesses and unmet needs in advanced illness and bereavement. ACCESSCare is the first national study to examine in depth the experiences of LGBT people facing advanced illness. Aim To explore health-care experiences of LGBT people facing advanced illness to elicit views regarding sharing identity (sexual orientation/gender history), accessing services, discrimination/exclusion and best-practice examples. Design Semi-structured in-depth qualitative interviews analysed using thematic analysis. Setting/participants In total, 40 LGBT people from across the United Kingdom facing advanced illness: cancer (n = 21), non-cancer (n = 16) and both a cancer and a non-cancer conditions (n = 3). Results In total, five main themes emerged: (1) person-centred care needs that may require additional/different consideration for LGBT people (including different social support structures and additional legal concerns), (2) service level or interactional (created in the consultation) barriers/stressors (including heteronormative assumptions and homophobic/transphobic behaviours), (3) invisible barriers/stressors (including the historical context of pathology/criminalisation, fears and experiences of discrimination) and (4) service level or interactional facilitators (including acknowledging and including partners in critical discussions). These all shape (5) individuals’ preferences for disclosing identity. Prior experiences of discrimination or violence, in response to disclosure, were carried into future care interactions and heightened with the frailty of advanced illness. Conclusion Despite recent legislative change, experiences of discrimination and exclusion in health care persist for LGBT people. Ten recommendations, for health-care professionals and services/institutions, are made from the data. These are simple, low cost and offer potential gains in access to, and outcomes of, care for LGBT people.</p

Optimal Cancer Care for Aboriginal and Torres Strait Islander People: A Shared Approach to System Level Change

PURPOSE: To improve cancer outcomes for Aboriginal and Torres Strait Islander people through the development and national endorsement of the first population-specific optimal care pathway (OCP) to guide the delivery of high-quality, culturally appropriate, and evidence-based cancer care. METHODS: An iterative methodology was undertaken over a 2-year period, and more than 70 organizations and individuals from diverse cultural, geographic, and sectorial backgrounds provided input. Cancer Australia reviewed experiences of care and the evidence base and undertook national public consultation with the indigenous health sector and community, health professionals, and professional colleges. Critical to the OCP development was the leadership of Aboriginal and Torres Strait Islander health experts and consumers. RESULTS: The OCP received unanimous endorsement by all federal, state, and territory health ministers. Key elements of the OCP include attention to the cultural appropriateness of the health care environment; improvement in cross-cultural communication; relationship building with local community; optimization of health literacy; recognition of men's and women's business; and the need to use culturally appropriate resources. The OCP can be used as a tool for health services and health professionals to identify gaps in current cancer services and to inform quality improvement initiatives across all aspects of the care pathway. CONCLUSION: The development of the OCP identified a number of areas that require prioritization. Ensuring culturally safe and accessible health services is essential to support early presentation and diagnosis. Multidisciplinary treatment planning and patient-centered care are required for all Aboriginal and Torres Strait Islander people, irrespective of location. Health planners and governments acknowledge the imperative for change and have expressed strong commitment to work with indigenous Australians to improve the accessibility, cultural appropriateness, and quality of cancer care