Re-designing End of Life Care: Beyond a form

The HELIX Centre is exploring the area of End of Life Care and seeking ways in which design can play a part in providing better care and more choice when it comes to death.

This is the first of a series of weeknotes, which follow our progress over a 6-week design sprint. See our introductory post for a little context, just in case you missed it.

Weeknote 2 (1–5 February)

During this week we began to pin-point some of the specific challenges that emerged in the design of an emergency care form, and importantly the context of its use. Our primary objective is enabling the easy completion of the form and creation of a larger End of Life plan, primarily in a clinical setting. We feel the planning will expand into other settings, but have given ourselves this focus for now. We have highlighted:

Understanding how clinicians would use it

• How the formation of information (i.e. blank boxes to be filled in, freeform vs. tick boxes) would it fit into their existing workflow, as an easy-to-use document
• How conversations would be conducted around the completion of the form (i.e. including prompts or guidance on the form itself)

Patients and their family/carers understanding what it means

• What kind of language would be used in the form (i.e. would wording be clinical or more accessible)
• Signposting key elements of the form for use by patients (i.e. location of other supporting documents)

Increasing acceptably of use by clinicians

• Clear, well-designed information that can be trusted from a clinical point of view

Unambiguous decision making about emergency treatments

• Documentation of decisions should be readable and clear, without contradictory notes or appendices

Accountability

• Any form needs to be valid from a medical/legal point of view

Beyond the challenges of the form itself, and how it would be used, we began to appreciate the complexity involved in the context of its use. Specifically:

Locations of use

• There is a general assumption that any form should be completed upon admission to hospital, but what is expected when the patient or family takes the form with them? Where would it be located off-site?

Ownership by patient

• What ownership could be transferred to the patient when the form is completed — would they be able to adapt elements of the form if they change their mind?
• Would it be desirable to customise the form for different audiences, to appear more everyday and normal?

Knowing it is the most recent version

• A paper-based form limits the ease with which you can update the form with any new information, requiring a new form for any amendment.
• Would a date and signature be sufficient to ensure the validity of information?

Patient identification

• Potentially sensitive information about resuscitation decisions could represent privacy issues for patients. How identifiable would the form need to be to the individual?
• How would paramedics be able to verify the identity of a patient with an accompanying form?

We also started to identify problem areas in the user journeys that demonstrate some of these challenges. One assumption is that the patient will keep a version of the form on them when they are discharged from hospital or leave the GP surgery. This assumes that the patient — indeed all patients — will have a place they can store and retrieve the document in an emergency.

We continued to work on these user journeys to identify key pain points that we could explore further. Around this time, we attended a seminar assembled by the Resuscitation Council working group, to discuss their plans with London CCGs and other members, and see how their own ECTP form was being developed.

It was really helpful to hear about additional pressure points and problem areas that such potential new form would present in reality, with feedback from attendees with a range of experience and perspectives. It was also encouraging to hear an emphasis on a focused and unified approach to emergency treatment planning.

Understanding the challenges outlined in the seminar, we wanted to make sure that for our own work, we would conduct further interviews with key stakeholders to understand these individual needs better, and dive deeper into the issues around the design of a new emergency care plan.