Consensus on quality indicators to assess the organisation of palliative cancer and dementia care applicable across national healthcare systems and selected by international experts

Abstract

BackgroundLarge numbers of vulnerable patients are in need of palliative cancer and dementia care. However, a wide gap exists between the knowledge of best practices in palliative care and their use in everyday clinical practice. As part of a European policy improvement program, quality indicators (QIs) have been developed to monitor and improve the organisation of palliative care for patients with cancer and those with dementia in various settings in different European countries.MethodA multidisciplinary, international panel of professionals participated in a modified RAND Delphi procedure to compose a set of palliative care QIs based on existing sets of QIs on the organisation of palliative care. Panellists participated in three written rounds, one feedback round and one meeting. The panel’s median votes were used to identify the final set of QIs.ResultsThe Delphi procedure resulted in 23 useful QIs. These QIs represent key elements of the organisation of good clinical practice, such as the availability of palliative care teams, the availability of special facilities to provide palliative care for patients and their relatives, and the presence of educational interventions for professionals. The final set also includes QIs that are related to the process of palliative care, such as documentation of pain and other symptoms, communication with patients in need of palliative care and their relatives, and end-of-life decisions.ConclusionInternational experts selected a set of 23 QIs for the organisation of palliative care. Although we particularly focused on the organisation of cancer and dementia palliative care, most QIs are generic and are applicable for other types of diseases as well.

Integrating palliative care in long-term care facilities across Europe (PACE): protocol of a cluster randomized controlled trial of the ‘PACE Steps to Success’ intervention in seven countries

“…5D-5 L (http://www.euroqol.org/) End-of-Life in Dementia Scales – Comfort Assessment while dying (EOLD-CAD) [23, 24] Quality of Dying in Long Term Care (QOD LTC) [28]Other measuresQuality of end-of-life care according to the relativesDeceased residentRelativeEnd-of-Life in Dementia Scales – Satisfaction with Care (EOLD-SWC) [23, 24]Quality of communication between relatives and physiciansDeceased residentRelativeFamily Perception of Physician-Family Communication (FPPFC) [29]Structural, facility level characteristics:Facility status, type, case-mix, size, averaged length of stay, staffing and level of personnelFacilitykey person managementProposal made by consortiumPalliative care policies of facilityFacilitykey person managementBased on Belgian survey [8]Structural quality indicators: Infrastructure, and access to palliative careFacilitykey person managementEU FP7 IMPACT Structural Quality Indicators for palliative care [30]Clinical and background characteristics:Comorbidities and cause of deathDeceased residentStaffGPBased on Belgian survey [8]Functional and cognitive statusDeceased residentStaffBedford Alzheimer Nursing Severity-Scale BANS-S [31]Clinical judgements on dementia and stage of dementiaDeceased residentGPStaffGlobal Deterioration Scale stage 7 (GDS) [32]Cognitive Performance Scale (CPS) [33]Age & gender of resident and relative, relationship to deceasedDeceased residentKey person managementRelativeProposal made by consortiumTiming of admission, place of death, socio-demographics, socio-economic status, religion/ethnicityDeceased residentKey person managementRelativeProposal made by consortiumAge & gender of staff, experience, level of education, palliative care trainingStaffStaffProposal made by the consortiumAge & gender of GP, experience, palliative care training)Deceased residentGPProposal made by the consortium…”

Strategies to implement evidence into practice to improve palliative care: recommendations of a nominal group approach with expert opinion leaders

“…Participants were divided by profession and field of interest to create two groups of similar size and with an equal balance of clinicians and researchers. All participants were aware of the results of the IMPACT project prior to the nominal group sessions, which were: a generic model of palliative care, [ 13 ] a set of quality indicators to evaluate the organisation of palliative care, [ 15 ] strategies to improve the organisation of palliative care, and an overview of barriers and facilitators of such improvement strategies [ 16 ]. At the start of the nominal group sessions, all participants were asked for their consent to participate.…”

Trajectories of care home residents during the last month of life: the case of France

“…Unless there are significant improvements in curing and caring for these disabilities, these trends should lead in future to increased demand for care home places. In view of this, and in line with international recommendations (van Riet Paap et al 2014), France needs to think about increasing specialised palliative care support for those in home care and care homes, and continuing in-service palliative care training for general practitioners and care home staff. Staff have to take ethical decisions in the course of their day-to-day practice, deciding whether or not to hospitalise someone, whether or not to limit or withdraw a treatment, choosing how to care for someone with dementia, etc .…”