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To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race.
13 geographically dispersed Alzheimer’s Disease Centers across the United States.
431 racially diverse caregivers of persons with dementia.
Survey on “Care Planning for Individuals with Dementia.”
The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful.
Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.
Health care providers are on the forefront of delivering care and allocating resources during a disaster; however, very few are adequately trained to respond in these situations. Furthermore, there is a void in the literature regarding the specific care needs of patients with ventricular assist devices (VADs) in a disaster setting. This project aimed to develop an evidenced-based protocol to aid health care providers during the evacuation of patients with VADs during a disaster.
This is a qualitative study that used expert review, tabletop discussion, and a survey of health care professionals to develop and evaluate an evacuation protocol. The protocol was revised after each stage of review in order to reach a consensus document.
The project concluded with the finalization of a protocol which addresses evacuation and patient triage, and also includes an algorithm to determine which staff members should be evacuated with patients, transportation resources, evacuation documentation, and items patients need during evacuation. The protocol also addressed steps to be taken in the event that evacuation efforts fail and how to manage outpatient VAD patients seeking assistance.
This protocol provides guidance for the care of VAD patients in the event of a disaster and evacuation. Protocols such as this address difficult scenarios and should be created prior to a disaster to assist staff in making difficult decisions. These documents should be created using multi-disciplinary feedback via the consensus model as well as the Institute of Medicine (IOM; National Academy of Medicine; Washington, DC USA) “Crisis Standards of Care.”
DavisKJ, SuyamaJ, LinglerJ, BeachM. The Development of an Evacuation Protocol for Patients with Ventricular Assist Devices During a Disaster. Prehosp Disaster Med. 2017;32(3):333–338.
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