Re-designing End of Life Care
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.
In the UK, 50% of people die in hospitals whereas only 2% would choose to. Furthermore, at the end of life, hospitals are often an inappropriate place to be, as they are primarily focused on recovery.
We live in a ‘death denying’ culture where we do not talk about or plan our End of Life choices, meaning that we can end up suffering futile resuscitation attempts or protracted stays in ICU. Since the removal of the Liverpool Care Pathway, our clinicians are lacking specific guidance in providing End of Life Care.
Our work began in the Autumn of 2015. We established a first objective to understand where design could be used to improve End of Life Care in a clinical setting. Through our initial research, we identified a number of key problems.
Firstly, that clinicians found it difficult to use the Do Not Attempt CPR (DNACPR) forms that every critical patient must have completed, and that discussions around preferences for DNACPR were hard to instigate. This was especially true for Junior doctors, who have very little or no training in End of Life Care.
Our previous work with the Leadership Alliance for the Care of Dying People aimed to improve the identification of patients that may be entering the last stage of life by clinicians, and to empower them to take steps to begin end of life care for their patients. We found that palliative care teams working in the hospital felt patients were often referred to them too late for meaningful interventions. ‘Begin the process early’ was a repeated goal for many clinicians and staff.
We understood that more than simply completing the form itself, it was the conversations this sparked that clinicians found difficult. The stark nature of the DNACPR form ignores the sensitivity and complexity of the context that surrounds the form’s completion. It lacks any of the substance or holistic qualities featured in Advance Care Plans or Living Wills, such as religious or spiritual considerations.
Recognising these failings of the DNACPR, a working group was set up in February 2015, led by the Resuscitation Council and including members from the BMA, Royal Colleges, GMC, CQC, various medical Councils and other organisations
…to work collaboratively and build on major work already undertaken to develop a national form to record anticipatory decisions about CPR and other life-sustaining treatment, and to guide decision-making in an emergency situation in which the person lacks capacity.
Health professionals (including representatives of doctors, nurses and paramedics) together with representatives of patients and members of the public have been working together closely over the last 12 months to develop a new system to record choices about treatments that people would want to be offered if they become severely or critically ill and treatments that they would not want or that would not help them.
The working group aims to develop a national form that is easy to recognise, and that records anticipatory decisions about CPR, as well as other aspects of a person’s care or treatment should they become unwell. This new form is called the Emergency Care Treatment Plan (ECTP). The proposed ECTP is currently out for public consultation — you can read more about it here.
The team at the HELIX Centre has valuable experience in redesigning NHS documentation. One of our designers, Matt Harrison redesigned the Imperial College Trust prescription chart. You can read more about it here.
We have just come to the end of a short six-week design sprint to scope good practice in form and information design, and ideate some prototypes around re-designing the DNACPR form and planning process. The subsequent posts follow our progress over those six weeks. Through consultations with various stakeholders — namely primary, secondary and community care — our aim was to create a new form and plan prototype that could be developed further in time. The HELIX Centre, uniquely positioned within a busy central London hospital, has access to specialists and clinical environments, enabling us to quickly identify the various needs of each group affected by a redesign.
Stay tuned for the next post, and please drop us an email (hello@helixcentre.com) if you have any questions or comments.
