Table 1

Key activities of the Compassion Intervention

Component and activityPurposeWho is involvedContent
1: facilitation of an integrated, multidisciplinary approach to assessment, treatment and care: a) Individual holistic resident assessmentTo identify symptoms, areas of current unmet need, anticipated future needs and corresponding actions and goals.The ICL assesses eligible residents in conjunction with NH nurses and healthcare assistants. The process involves liaison with the resident and family about their perceived needs, issues and expectations regarding EOL care. The assessment involves observations and if possible, discussions with the resident. The assessment template focuses on observational measures to identify whether the resident is showing signs of comfort, discomfort, distress and/or pain.Assessment template:
•Dementia diagnosis and progression (Functional Assessment Staging Scale)
•Significant other medical conditions
•Life history, interests
•Important goals for care and well-being
•Needs or restrictions related to faith and/or culture
•EOL wishes (Did the resident document preferences when they had capacity? Are family carer preferences documented? Are resuscitation status and preferred place of death documented and reviewed?)
•Current medication (and recent changes)
•Level of meaningful communication and understanding
•Presence of pain or discomfort (Pain Assessment in Advanced Dementia Scale)
•Behavioural symptoms and sleep disturbance
•Psychological well-being, mood, anxiety or depression (Cornell Scale for Depression in Dementia)
•Mobility, falls risk, sitting balance and posture, contractures/tone
•Skin conditions, pressure sore risk (Waterlow Score)
•Continence, constipation/bowel problems, UTIs
•Eating and swallowing, oral care, weight loss, nutritional status
•Other problems—chest infections, breathlessness, fits, blackouts
•Recent change in condition
•Summary of unmet needs and anticipated/ future needs
•Action plan and goals.
1: facilitation of an integrated, multidisciplinary approach to assessment, treatment and care: b) Weekly core meetingsTo review, agree on and enact (including referrals), the individual holistic resident assessments.The core team includes those responsible for medical, nursing and social needs of residents  and may include: the clinician responsible for the resident’s medical needs (GP, geriatrician or old age psychiatrist), NH nursing staff responsible for the resident’s needs, and the ICL.Review of individual assessments including developing an action plan to address areas of unmet need, discussion of anticipated needs, an escalation plan for the most likely ‘what ifs’, review of medications and prescribing ‘just in case’ medications if appropriate and review of EOL wishes and resuscitation status to ensure these are clearly documented. A review date and whether the resident’s needs require discussion with the wider team will be decided.
1: facilitation of an integrated, multidisciplinary approach to assessment, treatment and care: c) Monthly wider team meetingsTo discuss (in person or via teleconference), complex cases and review care plans, consider significant events, critical incident analysis.The wider team will consist of the core team plus any local health and social care professionals and specialist services involved in the care of people with advanced dementia. This is likely to include general practice, care of the elderly, old age psychiatry, palliative care, social services and community services such as district nursing, speech and language therapy, dietetics, tissue viability, physiotherapy and occupational therapy. Composition will depend on local working practices and the availability of key personnel.The core team will present for discussion residents who have complex needs requiring specialist advice or those where actions agreed by the core team have not been successful at alleviating symptoms. The wider team will also consider learning or training needs that may become evident as a consequence of this shared working. The meetings will include discussion of critical incidents, deaths, hospital admissions, complaints or compliments, and significant events relating to the care of residents so that learning points can be identified.
2: Education, training and support for formal and informal carersTo establish and address the educational needs of staff members so that they can recognise and respond effectively to the needs of people with advanced dementia and to support family carers with increased confidence.ICL will work with the NH and wider team to identify and address education needs and will obtain agreement from the NH manager to run formal training sessions. The ICL will be supported by the wider team to undertake training and education. The target of training could include staff and family carers.EOL care for people with advanced dementia linking to core competencies outlined in reference 5454 including:
•Communication skills with residents with advanced dementia and family carers
•Assessment and care planning
•Symptom management to maintain comfort and well-being
•Advance care planning
•Knowledge and values, to understand advanced dementia and EOL care and when to refer to specialist services. To be sensitive to the needs of family carers and to foster respect, dignity and quality care.
  • EOL, end of life; GP, general practitioner; ICL, interdisciplinary care leader; NH, nursing home; UTI, urinary tract infection.