Adaptive and personalised: the future of care planning
In September 2013, Being and Dying conducted a two week design sprint to identify the limitations and uncover problems with advance care planning offered by the NHS in England, and produce a ‘quick-and-dirty’ prototype in response.
It was our first project whilst under the leadership of Dan Hill at Fabrica in Italy. The team was made up of designers Ivor Williams, Jonathan Chomko and Fiona O’Leary. It was supported by Dr. Andreas Hiersche, a palliative medicine consultant at the Brighton and Sussex University Hospital NHS Trust. The project was the first implementation of a trans-disciplinary practice: a design team working alongside a clinician, to understand the needs of users and the wider health system, and bring their professional insight into an explorative design process.
Advance Care Plans are documents that record the wishes and priorities for people who are near the end of their life, either with a terminal illness or a life-limiting disease. It can include records of preferences and locations for care, along with personal priorities for specific treatments such as symptom control or emergency care. It is not necessarily limited to medical decisions, and can include more holistic considerations about social care.
We wanted to understand the problems that patients and care providers face when trying to complete these plans. We understood from Dr. Hiersche that the current documentation and planning at the time was too difficult to use, and fundamentally blocked many people from filling in and completing them. Other organisations supported this understanding: according to Age UK, only 5% of all ages report having a living will or advance care plan. Ranging from 1% of 18–34 year olds to just 12% of people over 75.
We would start by identifying key problem areas, isolate some of the most pressing issues and rapidly build a prototype that speculated towards a possible future for advance care planning. Ultimately, the aim of the sprint was to propose a contemporary tool that modernised a particularly cumbersome and complicated aspect of end of life care.
For the sake of productive speed during the sprint, we consciously avoided limiting ourselves to the current technological and institutional constraints of a NHS digital service. We also allowed some flexibility in our output in that it would not need to consider any legal qualifications (which are important when signing advance directives for care); that we would substitute existing, approved language and phrasing with our own to demonstrate new, possible alternatives; we would focus and outline a specific user journey based around preferences for care settings; and finally that our output would be purposefully illustrative and very much a test. We wanted to focus on the delivering a succinct, explorative taste rather than a fully-fleshed out experience. The project was as much an exercise in general working practices as it was a specific design brief. Given this freedom and light touch, we nevertheless felt important issues were uncovered, and can provide important insight today.
The experience of planning healthcare decisions around the end of your life, is difficult and rare. However, there are other experiences that are more common, but still present problems around decision-making. Designing a system that enables a user to make tricky personal decisions more easily, and even make the process enjoyable can be best demonstrated in some select consumer experiences. So when we began considering the experience of completing an advance care plan — something that requires an emotional investment as much as an investment of time — we felt that taking cues from online shopping services may offer a difference and perhaps beneficial perspectives on delivering a contemporary planning tool.
Revealing the problems
We de-constructed the existing tools to their basic functions: which is to record personal wishes, relay legal responsibility, and define preferences for care. These tools and documents offered by the NHS in England include:
- Advanced Care Plans
- Preferred Priorities for Care (described in both ‘Normal’ & ‘Easy Read’ versions)
- Guides for Future Care
- Guides for Health and Social Care Staff
- Guides for family, friends and carers
It must be noted that care planning varies greatly across care settings in the UK, without any formalised structure. The documents we used in our research came from Brighton and Sussex University Hospital NHS Trust. In discussions with Dr. Hiersche, the team identified some key problems areas and themes:
- The documents and plans were all paper-based, filled in by hand. Which meant they were hard to amend, and were often of a large pagination which resulted in bulky collections that would be cumbersome to move around with.
- Many of the documents lacked empathetic language and would often use cold and clinical tone of voice.
- It would be difficult to appreciate the consequences of some specific decisions relating to places of care or the availability of care in different settings, which could result in changing decisions later on when limitations were revealed.
- The process of completing could very easily be seen as daunting. The care plans featured very difficult, potentially life-altering questions followed by large blank spaces, which could be off-putting and difficult to complete without any guidance.
- Despite the accompanying guides, they would need going through with clinicians, carers or family. This meant the process would inevitably be time-consuming for care workers and clinicians, and could undermine the person’s autonomy for decision-making (if they were able to do so).
- There was no inherent personalisation to the process, with everyone completing the same elements regardless of personal situation, socio-economic background, or religion.
Over a number of days we experimented with different structures — ranging from patient stories and scenarios, to complex decision tree questionnaire formats — to settle on a concept that embodied a number of ideas.
After a few days, we settled on some key factors, and we felt that:
- Any Advance Care Plan (ACP) should be essentially be dynamic — it should be easily created and amended, and it would display the effects of decisions on any proposed care plans while you were making it. A digital tool will enable this easily.
- It should use more everyday, emotive language, to make the process relatable to the person, tailoring to a level they would find most comfortable (formal, informal, paternalistic, independent…)
- Importantly, the person creating the ACP can review and stop any time, and that no part of plan would need be filled, but would remain optional. This was to ensure that everyone would access and complete decisions to the level they were comfortable with.
- That the person would be able to view the entire plan *at a glance* to understand its scope and depth from a single point, but support micro/macro views that would enable them to zoom into specifics if they wanted clarification or detail on particular topics.
- Finally, that it could be used by those that would not be particularly experienced with technology. It should be clear and friendly-to-use.
We got to work and rapidly sketched some prototypes. The following previews show a possible user experience where a patient would be able to make small manageable decisions in a highly visible way. Each point would dynamically adapt considerations according to the previous decision. For example, choosing hospital care over hospice care would limit some particular life-saving treatments, but would support more personalised palliative care.
The continual assessment and review would support the user’s personal inclination to completing some or all of the plan. Significantly, the process would finish with a completed summary detailing — in an easy to understand way — their formative decisions made for their new, future plan.
Evaluating the prototype then, and now
Our advance care plan prototype served to quickly investigate a number of issues around the current offering of planning documents and platforms available in the UK, and put forward some fresh perspective and apply some design processes to a relatively unexplored area of healthcare. Putting aside the institutional, legal and technical challenges implicit in any digital product delivered to the NHS or associated health services, we understand that in 2016, there remains some key unresolved issues that we exposed in 2013.
Firstly, that planning does not deliver enough personalisation for individuals to make the process meaningful to them. Many emergency care plans remain clinical in their format and language, resulting in bureaucratic and sterile plans that offer little in the way of human empathy. Many are accused of being ‘designed by clinicians, for clinicians’.
Secondly, they remain stubbornly paper-based. The challenge remains how to build something worthy of contemporary society, but effectively deployable into the problematic IT systems of the NHS. Something that can be trusted by families and supported across the various care settings.
Thirdly, many of the poor experiences felt by families and carers with the treatment of their loved ones have come from the lack of coherent communication between care settings and clinicians. The importance of highlighting the process and consequences of care planning must not be overlooked. If families are able to feel confident in the decisions made in ACP’s, it would be a confident hope to reduce the types of experiences that lead to (what could be considered) bad deaths: unnecessary hospital admissions, futile & invasive treatments, or the ignoring of spiritual or religious needs for example. Advance Care Plan should be both a tool to record wishes, and act as a record for families to confidently make pre-agreed decisions once their loved one is unable to communicate. Communication between families and clinicians is key to any plan’s success.
In 2016, a number of organisations and groups are developing modern tools in this area. Both the HELIX Centre and Doteveryone are investigating end-of-life care and future planning, bringing these vital services into the 21st century. This project has been published in order to contribute to this larger movement, in hope of providing additional insight and perspective into a complex but wholly necessary endeavour.