Assessing inclusion in end-of-life care services

diagram depicting the ways decisions are made based on varying factors - religion, culture, medical knowledge, past experiences, quality of life and family.

Problem space

When working on a palliative care project about training carers, I was keen to try to ensure further health inequities were not replicated. This project, Palliate, is further documented in this portfolio piece. Palliative care, like all areas of healthcare, has health inequities. Through my role at the Helix Centre, I was interested in understanding more about these inequities and was also interested in how culture, death and health care interact. Throughout this project, I touched on some areas of inclusion but it was just cracking the surface.

My role

I delivered this project as a designer at the Helix Centre, a design and innovation lab in Imperial College London. In this project, I led:

  • Design
  • User research
  • Product management
Helix logo

01: The digital divide

In the Palliate project, we were creating a digital intervention to help carers record medications that they were giving; yet, early on, it was clear to me that a digital solution would not work for everyone. To make it inclusive and to not increase the digital divide, we would always need to offer both the original paper and digital version. 

Therefore, throughout the process, I would continuously iterate between the paper and digital versions. This ensured that the insights discovered from testing could apply to both. Over time, the paper version greatly improved as well with a layout that better utilised the space. 

Initial paper version in landscape:

The landscape version of the paper diary for carers to record symptom and medication information.

This paper version was a landscape orientation. When carers filled it out, lot of the space was not being used well as some text was overflowing, while other areas were quite blank.

Flexible digital version:

A screenshot of a menu of options with many links. The first is to read instructions, the second is to add information for pain symptoms and medications. The next is for nausea symptom and medications. It says all the steps have not been started yet.
This digital layout was created to make the process more flexible. By re-arranging the content in a new way that hadn’t been done before, I was then able to re-think the paper version and organise it similarly.

Updated paper version in portrait:

The iterated paper version that is now in portrait mode and the categories are better organised.

Now the paper version is in portrait orientation and uses a similar information architecture to the digital version. Through working in two modes, both were continuously updated and allowed a new way forward. 

02: Mapping exclusion

A few members of my team and I were interested in doing some accessibility testing and thinking about how and who our service was excluding. I was not sure how this work would be received by the rest of the team, so I organised an exclusion workshop to try to understand their interest and also learn from any of their experiences as well. 

I created a Miro board with the service process from start to finish along the x axis. I then added some examples of excluded groups on the y axis. I wanted the excluded groups to be specific, as often accessibility is lumped together and is regarded generically. 

Although this exercise was to built an understanding of the team’s attitudes towards inclusive work, I was aware that there were some problems with this approach if we took this forward as evidence which were:

  • this mapping exercise was based on assumptions, rather than data 
  • assumptions can also be based on harmful stereotypes 
  • we may be missing a lot of unknowns

The workshop was generally successful and exposed barriers within the service. It also helped identify what needs to be tested for the digital prototype versus the whole process of giving a medication.

A map of stickie notes where the x axis shows the different areas of the service. The y axis are different excluded groups.

After the workshop, I pitched some ideas to a senior leader in how to move forward; however, they were not keen to work on this yet. Their view was that the intervention may change a lot as we start trialing it with more people and we should wait to do accessibility work then. Although, I do not necessarily agree with this, I did not have a lot of power to change this decision. Instead, I continued to work on the project that is detailed next. 

03: End of life care for Muslim communities

Given the feedback from the senior leader about accessibility, I was keen to find another excluded group that we could begin to work with at a wider context that was less focused on the app. I began doing secondary research and came across the Muslim Council of Britain's report on Elderly and End of Life Care for Muslims in the UK. Through this research, I found that Muslim families often care for family members at home towards end of life due to cultural values and fear of stigma from health institutions. They also want more support. This seemed like a good fit for the work we were doing in community palliative care and a potential area to explore.

From this, I then collaborated with a colleague further. We conducted extensive secondary research on palliative care for Muslim communities. We prioritised Muslim organisations and Muslim-led research within this process.

Secondary research report:

Project proposal

After this secondary research, we successfully received internal funding for participatory design workshops. We met with subject matter experts to get feedback on our proposal and learn more from their experience. From there, we planned on creating activities with community leaders and then talking to people from the community.

04: Decision and sense-making diagrams

When doing research on religion, I came across a webinar that spoke about the conflicts families face when clinical advice does not match religious values. I began thinking about how people make a decision with end of life and the many factors that could be involved while processing.

A diagram that shows how decisions are made. The inner circle says decision. It has a larger circle encompassing it that say sense making. Arrows are joining from 6 circles outside into sense making. These are factors of how decisions are made like cultural values, past experiences, family, quality of life, medical advice and religion or beliefs. The diagram is discussed more in the text.

As a decision is made, there are many factors to consider. In this diagram, I try to depict what may play a role.

In the centre is the decision. The outer circle is then the sense making process - where all the factors lead to then make that final decision. Outside of this circle are 6 areas that I could think of in what may play a role. These are:

  1. Medical advice and risks: If there is a medical diagnosis, there may be decisions that are impacted by medical knowledge. There is an expectation that medical advice should take a weight in evaluating a decision.
  2. Religion or beliefs: Depending on the person's religious or spiritual beliefs, they may have certain needs or priorities.
  3. Quality of life: What people want or need before they die. This could be an unfulfilled wish or something they want to have throughout the rest of their life.
  4. Past experiences: Their own experiences or hearing someone else's can shape the decision they want to make now. For example, if they had a traumatic event from medical institutions, they may not be as trusting.
  5. Culture: Cultural values surrounding death. This can include the impact to discussing it. Cultural values can also include how decisions are made - is it based on an individual or a collective?
  6. Family: Family dynamics or needs may change how decisions are made. The person at the end of life may be a caregiver themselves.

In this base diagram, each section is also of equal size, but that also may not be the case as not all of these things are weighed equally.

Adapted diagram (work in progress)

I then adapted the diagram to take into account how each factor may not be of equal weighting. I created this diagram based on a tragic carer story documented in the Elderly and End of Life Care for Muslims in the UK report. In summary, someone's Mum did not want to have palliative chemotherapy because of her religious values, yet the medical service then discharged them and would not give more medical support. The family still wanted support, just not palliative chemotherapy. Within the report, their story is well documented and gives a rich insight into the challenges they faced. Here I depicted it within a digram, but of course this is only an estimate based on what was written in the report and could be further refined by speaking to someone with lived experience.

diagram depicting the ways decisions are made based on varying factors - religion, culture, medical knowledge, past experiences, quality of life and family.