Author: Dr Karen Harrison Dening, Dementia UK
Date of publication: December 2020
Keywords: Advance Care Planning
I first became conscious of the concept of planning ahead for the end-of-life in the early 1990’s when I became a community psychiatric nurse supporting families affected by dementia. Over my six years as a community psychiatric nurse I was involved with several people with dementia and their family carers who went on to write down their wishes for care as their future unfolded with dementia. This was at a time when ‘advance care planning’ was not the language used but more that of a ‘living will’. During this time, we were in the midst of the HIV and AIDS crisis and to the fore of this was the Terrance Higgins Trust, an international charity, who were instrumental in developing one of the first Living Will’s which was probably one of the first advance care planning templates for end-of-life situations for this population. In the media we witnessed the pain and distress brought about by people with AIDS talking about the knowledge that they were dying and how they wanted to have some control over their deaths and how to support their loved ones to understand their last wishes.
There were several families affected by dementia that have a very strong place in my memory of those years and they were those where I worked closely with them to support their thinking and of planning the care they would wish for in the future as their dementia unfolded and progressed. The majority of those that wished to explore this wanted to have a written plan in case they needed to inform others, such as their wider families, GPs, or hospital staff, should they need care. I contacted the Terrance Higgins Trust and sought permission to use their living will template with the families I was working with. They were extremely generous and provided me with a whole pack of blank documents. Computers and the internet were far into the future at this stage so each of the families used their ‘hard copy’ of their living will to pencil in their thoughts. We would take several sessions to talk through each section, after which they would change the pencil markings for pen and ink; such was the value they placed on the process and the document.
What was of equal value was for them to engage in such a process required me to provide information and advice about what their future might hold; this was an area that was little touched on in those days as, working in secondary mental health services, we did not care for people with dementia at the end-of-life. I suppose these days we might talk with the family about the prognosis as the dementia progresses and what the symptom burden may be should a person live into the advanced stages of the condition. On reflection, I think I must have been quite brave as few mental health clinicians at that time acknowledged dementia was a life-limiting condition or that end-of-life care was the remit of secondary mental health services. I had one couple on my caseload where the wife had a diagnosis of dementia which was in its moderate stages. Her husband was her main carer as they had no children or close family members for him to rely on for support. The carer was also very frail and had several chronic and debilitating illnesses. As can be quite typical of older male carers, they often take on the sole responsibility of caring for their wives and find it difficult to allow care services to undertake what they feel, is their job. He had refused all offers of external care for his wife. However, he also found it very difficult to accept the diagnosis of dementia and felt that there must be something that could be done. As a nurse I was very familiar in working with families in negotiating their day to day plans for care. I acknowledged with him that we would take things at their pace and work with them to plan how they might think about both of their future needs. He was quite pleased that I was not there to tell him what do but that I would be guided by and work with their wishes. He had not experienced this sense of control before which he found more palatable than a professional coming in and telling them what they thought was the solution. It became clear that no-one had explained at the point of diagnosis what dementia was and what they might expect as the condition progressed. After we had started having these conversations, I introduced the notion of planning ahead and in documenting wishes and preferences for future care. It evolved that his main concern was that his wife would outlive him, given his poor health, and was concerned about who would care for her if he was not around. We tried to engage his wife in the conversations and planning ahead but she had no insight into her condition and was content in her day to day life, having no realisation of her diagnosis or what the future might hold. She lived in the moment, which is very common in people with dementia. So, the plan was very much based upon what he felt her wishes may have been if she were able to express them herself.
As with this couple, I would often work with families over several sessions to help them to consider their wishes and preferences for end-of-life. After some time, I decided that I would develop my own advance care plan and document my own wishes and preferences for palliative and end-of-life care. My sons, who were in their early teenage years at the time, did not want to even contemplate life without me but understood that this document was there should the need arise. As time has gone on, I have updated it, adapted it and added things as they emerge or evidence changes. These early experiences of advance care planning were a very real driver for the research focus of my PhD studies to better understand how we can ensure people with dementia and their family carers have a voice in their advance care planning and end of life. As professionals working with families affected by dementia, we need to always be conscious that the process, especially from the perspective of the person with the diagnosis of dementia, is as inclusive as possible. It was practice back then that clinicians would often turn to the family member in negotiating care plans which may leave us uncertain as to how closely this reflects those of the person with dementia. We now recognise that we should offer advance care planning as soon after diagnosis as possible, to maximise on the capacity of the person diagnosed with dementia to fully engage.
My own advance care plan was driven by an emotional response to these early professional experiences which then also led to my research interests in this field. The question I ask to my fellow researchers in the field of advance care planning is; how many of you have your own plan? How many of you have walked this walk yourselves? It is essential that if we are to talk the talk and walk the walk we need to have considered our own advance care plan to have as good an understanding as possible of what we are asking of participants.
Meet the Author: Dr Karen Harrison Dening, Dementia UK
Karen has over 40 years’ experience in nursing, most of those being in dementia care in a variety of settings and contexts. She currently works for Dementia UK and Admiral Nursing as Head of Research and Publications. She gained her PhD at University College London focusing on advance care planning and end of life care in dementia. She has several honorary academic positions at UK universities. Through her role at Dementia UK she is a collaborator, co-applicant, and expert advisor to several NIHR, Alzheimer’s Society and ESRC research studies. As well as her academic work she served on several national guidelines committees with the National Institute for Health and Care Excellence (NICE), such as, the original dementia guideline and its recent refresh. Her research interests are dementia care, case management, carer resilience, palliative and end of life care and advance care planning.