Enhancing Home-Based Palliative Emergency Management: A Quality Improvement Project Using a Modified Experience-Based Co-Design Approach

Identification of Stakeholders

Stakeholders identified¹⁰ for this project include the following:

Primary Stakeholders	Secondary Stakeholders
Patients Families of patients Palliative home carers Palliative nursing staff Palliative medical staff Administrative staff	Other medical and allied medical practitioners Emergency services Medical funders

Cause and Effect Diagram

Toolkit Adaption

Toolkit Component	Changes
Included
Welcome and explanatory booklet	Some general language changes were suggested to the welcome booklet. Language changes were made for clarity, or to moderate expectations. Additional details on medication were incorporated, including: Common misconceptions, Directions for use, Onset of action Region-specific sections of the booklet were removed. Section on advance care planning was removed Section entitled, “The Difficult Stuff” was altered significantly. Content was added to explain what to expect after a person has died
Script	Title of the prescription was revised to Emergency Medicine Script Space for an ICD 10 code was added for medical funding purposes Generic substitution was allowed Fentanyl patch prescribed was changed to a widely available generic that is commonly funded by medical funders An additional strong opiate was scripted for breakthrough pain as an alternative for the buccal fentanyl tablet Metoclopramide was included as an alternative to the ondansetron orodispersible tablets Microenemas were replaced with widely available suppositories Emergency items should be made easily distinguished from day-to-day meds by the pharmacy
Emergency room letter	General language changes were made for clarity Letter was revised to be less than one page Advance care planning only addresses a do not resuscitate directive Preferred place of death was included Contact details of the team were omitted
Standard medicine plan	Unchanged
Containing folder	Folder title changed to Ambulance and Emergency Folder – For Emergency Care Providers
Solution Unclear
Fridge magnet for emergency contacts	The fridge magnet was felt to be useful to identify a patient with palliative intent and to direct emergency care providers to the emergency toolkit. It was not clear where or how it should be done.
Excluded
Emergency drug stickers	The participants felt the emergency stickers were an optional extra. These are difficult to make available to virtual patients and expensive to produce It was suggested that the emergency items could be made understandable with a felt-tip pen
Advance care plan	A comprehensive advance care plan was removed from the standard emergency toolkit as this was felt to be too complicated for the emergency space

Acknowledgements

The author extends his thanks to all patients, families, and clinicians who have given their time to make this project possible.

References:

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3. Hospice Palliative Care Association of South Africa. Hospice Palliative Care Association of South Africa Clinical Guidelines: HPCA; 2012.

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8. The Health Foundation. Quality improvement made simple 2021 [Cited: 9th January 2023, Available from: www.health.org.uk/publications/quality-improvement-made-simple.]

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10. The Point of Care Foundation. EBCD: Experience-based co-design toolkit [cited 2023 9th January]. Cited: Available from: https://www.pointofcarefoundation.org.uk/resource/experience-based-co-design-ebcd-toolkit/.]