I'm still me - frailty from the patient's perspective
I’m still me: a narrative for co-ordinated support for older people, was published in December by UCL Partners, National Voices and Age UK. The report describes what older people want from their lives and from the services that support them, and is based on the analysis of seventy-four interviews.
The main themes arising from the research were around independence, community interactions, decision making, care and support and terminology. The report asks health and social care services to reflect on whether their services support the ‘I statements’ outlined in the report, and calls for a national debate around how we define and manage frailty.
Over the past few years there has been an increasing focus on ‘frailty’ and its definition, measurement and management. The BGS’s guidance, Fit for Frailty (2014) recommends that “older people should be assessed for the possible presence of frailty during all encounters with health and social care professionals”. It acknowledges that frailty varies in severity and is not static but promotes the concept of frailty as a long-term condition. It highlights why this is important; to “help health and social care professionals to take action…and to start a pathway of care to address the issues contributing to frailty”.
However, it is interesting to view frailty from the patient’s perspective. Although there were mixed views on the terms ‘old’ and ‘elderly’ there was almost universal rejection among our interviewees when it came to seeing themselves as ‘frail’ or being associated with ‘frailty’. Whilst they recognised the constraints their health conditions sometimes placed on their lives, they did not want to be defined by these conditions. They wanted instead, to focus on living their lives. Independence remained one of the most important things to them and was not only about attending to basic activities of daily living but about 'doing what I want, when I want’.
The case study featured in the report illustrates this contradiction between the clinician’s perspective and the patient’s perspective. Ken was 100 and could have been described as frail by clinicians by virtue of his having a number of co-morbidities and because he required a walking stick. He was also close to the end of his life, passing away a few weeks after our interview. However, Ken vehemently denied that he was ‘frail’. He lived alone with domestic assistance, used an iPad and went to pilates classes. He described his health as “pretty good” and said that independence to him meant “doing things for others”.
In his book, Being Mortal, Atul Gewande (2014) asks whether through trying to medicalise old age, we have actually lost sight of the key issue of helping people to live well. There is no doubt that clinicians identify frailty with the best of intentions, and without having resort to such a label there is a risk that patients with frailty may ‘slip through the net’ and fail to receive the services that they require. Perhaps, the focus needs to be on identifying the ‘pre-frail’ to ensure that we are proactive in taking a preventative approach by helping them to maintain their independence for as long as possible.
But how do we identify people in a way that is acceptable to them? Is it the terminology, rather than the label, that is the problem? The term frailty was already in general usage before being adopted as a ‘diagnosis’. The Oxford dictionary gives the definition of frailty as “the condition of being weak and delicate”. Indeed many of the older people we spoke to felt that being described as ‘frail’ implied weakness. Perhaps we need to have a debate with the public about our intentions in using the term ‘frail’ and what it offers to the patient – in the same way that we have done with dementia, for example.
This report aims to generate discussion and debate. We need debate within the health and social care professions but we must also ensure that we engage older people themselves, the very people we are seeking to serve.
Join in the debate at #imstillme
is the Frailty Programme Manager at UCLPartners and is an occupational therapist by background
British Geriatrics Society (2014: Fit for Frailty. London: British Geriatrics Society, Age UK, RCP
Gawande A. (2014) Being Mortal: illness, medicine and what matters in the end. London: Wellcome Collection
Redding D., Gentry T., Shand J. & Stuart L (2014) I’m Still Me: a narrative for coordinated support for older people. London: UCLPartners, National Voices & Age UK.
www.oxforddictionaries.com Accessed on 16.01.15