When Helping Hurts: Latrogenic Effects on the Patient-Caregiver Dyad (FR456)

Abstract

•Identify domains and screening tools to elicit self-perceived burden.•Describe correlations between medical treatment decisions, syndromes (e.g., ICU admission, feeding tube placement, delirium) and caregivers’ mental health.•Develop language for identifying and intervening in: 1) patients with self-perceived burden, 2) caregiver distress, and 3) the changing dyadic relationship. For many people with a serious illness, family members assume a caregiving role. While the caregiver role can strengthen relationships, it also poses challenges. This manifests as self-perceived burden for patients and caregiver burden. This talk will review both perspectives including the patient as a self-perceived burden and the toll of caregiving by examining the emotional impact of medical conditions and treatment decisions that have direct impact on caregiver coping and mental health. Patients’ self-perceived burden can result in guilt, depression, suicidality, and requests for hastening death. This talk will explore ways to elicit the patients’ experience including the use of burden scales. Use of these tools will foster language for providers to screen for self-perceived burden, caregiver burden and intervene with couples to meet the needs of both care receiver and caregiver. Furthermore, mental health of the caregivers can be complicated by additional iatrogenic factors including treatment decisions (e.g., ICU admission, LVAD) which have been shown to result in PTSD, complicated bereavement, and anxiety. Symptomatic states including anorexia, delirium, and behavior disturbances are also associated with greater caregiver distress. Our aim is to help palliative care teams have the foresight to consider the emotional burden of common treatment decisions and symptomatic states. While palliative care involvement has been shown to benefit patients’ mental health and coping, given the complex nature of the caregiving dyadic relationship, patient focused interventions are likely not enough. Using case examples, we will illustrate burden in patients, caregivers and couples. We will use Sli.do to engage audience and teach strategies and language to intervene effectively (including interventions that bolster “uplifting” effects of caregiving which has been shown to improve the coping of caregivers). Lastly we will increase awareness of the iatrogenic effects of conditions and decisions that affect couples coping with serious illness.