Re-designing End of Life Care: Visible Processes
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.
Week 1: 25–29 January
During our first week, we analysed the key elements of the DNACPR form, and the Resuscitation Council’s proposed ECTP form, as a good indicator of how many professionals are keen to develop new future planning.
Taking a fresh perspective on what emergency planning should do, we understood that any new emergency treatment plan should serve multiple functions. Firstly, it would be used by clinicians to record patients’ care preferences. Secondly, it would be kept by patients as a record of their future care. In an emergency, the form would need to clearly communicate patients’ preferences to ambulance crews. The plan could also be used as evidence for the review of cases to make sure that procedure was followed. Any new plan and form needs to hold these roles very clearly and visibly if it is to work.
Timo Arnall talks about ‘visibility’ in his thesis, “Making Visible” remarking,
…visibility is the way in which objects indicate the mappings between intended actions and actual operations, the way in which objects distinguish between themselves, and the ways in which the effects of operations are displayed.
The lack of visibility in his examples are busy and incoherent TV controllers or other button-riddled gadgets. In this case we can mean the form itself. This concept is useful when considering a DNACPR form: overburdened with boxes, text and colour, the form runs the risk of having no visible structure that can be quickly accessed and trusted, particularly in an emergency situation, where there is no room for ambiguity, particularly when there is a series of handwritten notes describing specific decisions.
We are currently considering the layers that make up this form, which we can define as being:
- Questions and their corresponding answer formats, which we call “Q&A”.
- The relationship between the questions in the form, which we call “Flow”.
- Physical layout of the form, be it paper or electronic, which we call “Layout”.
- Workflow and activity surrounding the form, which we call “Process”.
In week 1, we focussed on process. Matt mapped the physical journey of the form, and we are also building some basic user journeys. The aim here is to understand the limits of the form as the carrier of messages and information. We have an incredibly limited, fixed space (2 sides of an A4 page) to cover a lot of information and record of care, so we are also looking to expand the communications into other areas. This additional communication material could provide information on the purpose of the form to clinicians and the public.
Atop these mapping exercises, we’ve been identifying the best practices for creating a document that will transform the experience for the patient, and support healthcare workers to record accurate information about present and future care decisions.
One promising approach would be to use the PET (Persuasion, Emotion and Trust) theory. These are principles that would be used to encourage or discourage a user’s behaviour during a process; encourage any emotional response during a process, such as achievement, empathy or surprise; and would be used to establish confidence during a process, such as security or credibility.
Trust is such an important element of this process, and we are currently looking at ways in which trust could be implanted into something as inherently transient as an A4 document. We’ll look at this idea further into our sprint, amongst others as we uncover them.
Closing our first week, we were beginning to appreciate the complex web of people involved, across the various care settings. We will spend the majority of our sprint speaking to those people, to understand the unique challenges they all have when it comes to emergency care and treatment plans.
