One of my main reasons for training as a social worker was to help amplify the voices of people who were often overlooked or overshadowed. In the hospice world, sometimes our rush to make people ‘safe’ can mean that we forget that people functioned in their life for many years without our involvement, and that advanced illness does not remove someone’s right to take risks and make decisions we may not agree with. We can be so focused on striving to maximise this subjective concept of safety that we inadvertently minimise an individual’s autonomy and somehow diminish their personhood as a result. We may overlook patient happiness when striving to ensure safety.
The Mental Capacity Act 2005 (MCA) however, helps us to remember the fundamentals of an individual’s right to make decisions, including those decisions that we may think are unwise. It offers guidance and a structure to help service users and professionals to approach decision-making. It reminds the multi-professional team that decision-making and assessment is a process, not a one-off event, that we should assume someone has the ability to make decisions unless we have clear reason to doubt it. It also reminds us that service users and those who know them best must be actively involved in making decisions in the person’s best interest and guided by the least restrictive option. The MCA is an aspirational piece of legislation that I think, at best, truly helps to safeguard the most vulnerable in our society and prompts well-meaning but sometimes over-zealous professionals to pause and embody a person-centred approach.
As a legal geek, I have always kept up to date with legislative developments but nothing really prepared me for the trepidation and sense of great responsibility I felt as I completed my first Mental Capacity Assessment as a social work student. Signing my name to say I did not feel this person was able to make decisions about where they could live felt like a moment of real gravity. I have felt frustrated over the years that whilst I have attended very good MCA training it rarely features Palliative and End of Life cases.
It was this frustration which led me to suggest organising an MCA study day to my manager at St Christopher’s Hospice. I felt that opportunities to meet and chew over the complexities were always welcomed by myself and colleagues, but that these were often ad hoc, corridor conversations or rushed chats in the staff canteen – and like all savvy bosses, my manager delegated the task of organising the day to me!
So, almost a year in the planning, I am really excited that the team at St Christopher’s and I have been able to pull together leaders in the field such as Alex Ruck Keene, Steve Chamberlain and Professor Rob George to offer the chance for the particular challenges of capacity at end of life to be focused on. Maximising someone’s right to make their own decisions about their life does not stop when the end of life is approaching, but approaching the end of life does add a layer of complexity to an already ethically and practically complex area of practice. I hope that by having the chance to share our experiences, we can explore how we can best balance the rights of the individual, our sense of responsibility as professionals, and the key messages from case law to uphold this aspirational piece of legislation in our everyday work.
For more details of this essential day, visit St Christopher’s – Mental Capacity at the End of Life