Breaking Down Silos: Consensus-Based Recommendations for Improved Content, Structure, and Accessibility of Advance Directives in Emergency and Out-of-Hospital Settings

Patients receiving palliative care often interact with a variety of health care providers across various settings. While patients may experience good care from these services, the connection between these can be disjointed as care providers may work siloed from each other. This is particularly true...

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Veröffentlicht in:Journal of palliative medicine 2020-03, Vol.23 (3), p.379-388
Hauptverfasser: Carter, Alix J E, Earle, Rebecca, Grégoire, Marie-Claude, MacConnell, Grace, MacDonald, Todd, Frager, Gerri
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container_end_page 388
container_issue 3
container_start_page 379
container_title Journal of palliative medicine
container_volume 23
creator Carter, Alix J E
Earle, Rebecca
Grégoire, Marie-Claude
MacConnell, Grace
MacDonald, Todd
Frager, Gerri
description Patients receiving palliative care often interact with a variety of health care providers across various settings. While patients may experience good care from these services, the connection between these can be disjointed as care providers may work siloed from each other. This is particularly true in out-of-hospital and hospital emergency settings, where providers have no prior knowledge of the patient, particularly their advanced directives (ADs) and goals of care. In the Emergency Department or when paramedics respond to the home, ADs are further challenged by issues of clarity of content, contextual relevance, and accessibility. (1) What content should be in AD for medical emergencies, and (2) what would ensure the AD is accessible in times of crisis? Phase 1 involved a review of existing AD and published literature to generate a list of candidate elements. Phase 2 presented these in an online survey using modified Delphi method to paramedics, emergency nurses, and physicians. During phase 3, a focus group with palliative and emergency care providers and information technology experts was held regarding current accessibility of AD and a vision for improvement. The detailed focus group notes were coded using inductive analysis. Fifty-five candidate elements were provided for the Delphi. After three rounds, 36 panelists achieved consensus on 46 elements. Participation was greater than 80% in all rounds. From the focus group on access, six themes emerged; (1) imprecise language, (2) mismatch of protocols, (3) lack of understanding by patients/families, (4) lack of AD, (5) difficulty accessing AD, and (6) opportunities: database, education. This project makes recommendations to improve palliative care in emergency or crisis situations and facilitate care consistent with patient's goals: (1) a consensus-based template for AD content; and (2) development of a centralized database. These findings served as the foundation for the "Paramedics Providing Palliative Care at Home" program.
doi_str_mv 10.1089/jpm.2019.0087
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title Breaking Down Silos: Consensus-Based Recommendations for Improved Content, Structure, and Accessibility of Advance Directives in Emergency and Out-of-Hospital Settings
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