Living Well, Dying Well. a Research Programme to Support Living Until the End

Inclusion Criteria patients: * The patient is aware that recovering from his/her disease is unlikely, to be assessed by the attending physician * The attending physician would not be surprised if the patient were to die within 6 months * If the physician is uncertain about the surprise question, the patient is eligible if presenting with at least one SPICT indicator: General SPICT indicators: * Unplanned hospital admission * Performance status is poor or deteriorating, with limited reversibility (eg stays in bed or in a chair for more than half the day) * Depends on others for care due to increasing physical and/or mental health problems; person's carer needs more help and support * Progressive weight loss; remains underweight; low muscle mass * Persistent symptoms despite optimal treatment of underlying condition(s) * Person (or family) asks for palliative care; chooses to reduce, stop or not have treatment; or wishes to focus on quality of life Disease-specific SPICT indicators: Cancer: * Functional ability deteriorating due to progressive cancer * Too frail for cancer treatment or treatment is for symptom control Neurological disease: * Progressive deterioration in physical and/or cognitive function despite optimal therapy * Speech problems with increasing difficulty communicating and/or progressive difficulty with swallowing * Recurrent aspiration pneumonia; breathless or respiratory failure * Persistent paralysis after stroke with significant loss of function and ongoing disability Heart/vascular disease: * Heart failure or extensive, untreatable coronary artery disease; with breathlessness or chest pain at rest or on minimal effort * Severe, inoperable peripheral vascular disease Respiratory disease: * Severe, chronic lung disease; with breathlessness at rest or on minimal effort between exacerbations * Persistent hypoxia needing long term oxygen therapy * Has needed ventilation for respiratory failure or ventilation is contraindicated Kidney disease: * Stage 4 or 5 chronic kidney disease (eGFR \< 30ml/min) with deteriorating health * Kidney failure complicating other life limiting conditions or treatments * Stopping or not starting dialysis Liver disease: * Cirrhosis with one or more complications in the past year: diuretic resistant ascites; hepatic encephalopathy; hepatorenal syndrome; bacterial peritonitis; or recurrent variceal bleeds * Liver transplant is not possible Dementia/ frailty: * Unable to dress, walk or eat without help * Eating and drinking less, difficulty with swallowing * Urinary and faecal incontinence * Not able to communicate by speaking; little social interaction * Frequent falls; fractured femur * Recurrent febrile episodes or infections, aspiration pneumonia Other conditions: o Deteriorating and at risk of dying with other conditions or complications that are not reversible; any treatment available will have a poor outcome Exclusion Criteria patients: * The patient is incapable of filling in a questionnaire in the country's main language or in English (patients may be supported by relatives when filling in the questionnaire) * The patient is incapable of providing informed consent to participate in the study, to be assessed by the attending physician Inclusion Criteria relatives: * Family, friend or other close relative of the patient * 18 years or older * The relative is aware that it is unlikely that that patient will recover from his/her disease Exclusion Criteria relatives: * The relative is incapable of filling in a questionnaire in the country's main language or in English * The relative is incapable of providing informed consent to participate in the study