Care of the caregiver: Transitions at the end of life.

Abstract

152 Background: Transitions of care can be particularly stressful on cancer patients and caregivers when goals of care are changing, especially at the time when active specialty care shifts to hospice. There are common caregiver issues at the end of life for the brain tumor patient as for any cancer patient however there are a subset of challenging problems unique to the disease. One of the goals of the UCSF caregiver program is to provide information on effective care at home and at the end of life to the caregiver when faced with a family member with a progressive, life threatening brain tumor. Methods: The caregiver program at UCSF sought to overcome the major caregiver challenges of the brain tumor patient at the end of life in two ways. First, caregivers of patients at the terminal phase in the illness trajectory were proactively contacted by a member of the caregiver team to offer informational and emotional support around end-of-life issues. The team also makes contact with the hospice agency in order to provide information about specifics regarding symptoms, family dynamics, or any relevant history. Second, in collaboration with the palliative care service, a palliative care and end of life handbook for brain tumor patients was planned. Results: Since June 2013, 70 caregivers of patients have been identified as “high risk” for distress because of disease progression or transition to hospice care. In addition to providing support to the caregiver at the end of life, the palliative care handbook was produced and distributed. The handbook provided general information on the role of hospice, advance care planning, and bereavement and more importantly incorporates specific sections that highlight the unique challenges regarding neurological symptoms that include cognitive and behavioral changes, language difficulties, corticosteroid use and the inability of oral intake that can significantly affect anti-seizure medication administration. Conclusions: Additional focus to ease transitions for caregivers of brain tumor patients at end of life is needed. Future projects involve creating a handbook to provide resources to hospice professionals caring for brain tumor patients that will highlight common symptoms expected, (ie. seizures) and options for management.