P15.03 * CARER PERCEPTIONS OF THE END OF LIFE PHASE IN MALIGNANT GLIOMA IN SOUTH EAST SCOTLAND

Abstract

INTRODUCTION: Little is known about Health-Related Quality of Life of glioma patients during the end-of-life-phase of care. During this time, patients may experience a number of neurological and cognitive deficits, changes in personality, epilepsy, side-effects of medication, fatigue and depression. To explore this, carer perceptions of the level of disability and quality of care in the end of life phase of patients with high grade glioma were explored at 3 months and 1 week before the death of the patient. METHODS: A retrospective descriptive study of General Practitioners (GP) and relatives of deceased patients diagnosed between 2008 and 2009 was carried out in South East Scotland. Questionnaires relating to symptoms, quality of life, health care provision, place of care, patient's wishes and end-of-life care were sent to GPs and relatives following the death. Patient demographics and tumour details were extracted from case records where available. RESULTS: 110 relatives were sent questionnaires 52 (46%) relatives responded. Relatives stated that at 3 months headache was the most reported symptom (56%), followed by seizures (40%) and hemiparesis (29%), whereas at 1 week prior to death, fatigue was the most common symptom (71%), followed by nausea/vomiting (63%) and confusion (42%). Eighty percent of patients used a stick, or were wheelchair or bedbound at 3 months whereas, 90% were confined to their bed and 94% required assistance 1 week prior to death Approximately 1 in five patients had seizures at least weekly at 3 months and also in the last week of life. Main issues that affected dignity of death included communication problems (50%) cognitive issues (44%) or inability to care for themselves. Sixty two percent of relatives felt that symptoms were treated effectively. Most relatives felt they had enough information provided by the health care professionals (86%), that they were involved in decision making (92%), and agreed with the decisions made (84.5%). Further, only 14% were dissatisfied with their role as caregiver at the end of life, but more than half felt there was insufficient psychological support for them. Thirty seven percent of patients had a living will and in the last week the majority of patients did not have capacity. Overall, 20 (38%) patients died in hospice; 17 (33%) died at home; 12 (23%) died in hospital; 2(4%) died in a nursing home and 1(2%) died elsewhere. CONCLUSIONS: Most relatives were satisfied with both their role as caregiver, and the involvement in decision making about the patient's care. Advanced care planning needs to be encouraged early in the disease process. Relatives felt that there was scope for better symptom control and there was insufficient psychological support for themselves.