My colleagues support people and those important to them to identify and discuss What Matters Most when approaching the end of life. These conversations enable our staff to put in place an advance care plan that emphasises compassion and dignity.
With Dying Matters Awareness Week and Dementia Action Week so close together, I think we can make important connections between end of life care and dementia care. It’s crucial to find out What Matters Most to people so that the End of Life experience for them and their families is as meaningful and respectful of their wishes as possible.
For most people, there is an instinctive aversion to confront ageing and mortality for fear discussing it could somehow hasten illness or death. Research consistently shows that most of us avoid discussing planning with family or friends, or execute Wills to govern our affairs or grant Lasting Powers of Attorney to enable people we trust to take crucial decisions, should circumstances impair our mental capacity. We postpone and defer, always thinking that there is plenty of time – but sadly, we only have a finite time on this earth and that is not always the case. Additionally, whilst continual medical advances are enabling people to live longer, it may not always be with quality or dignity.
Living with dementia, the loss of cognitive function which can progressively change a person’s life and capabilities, impacts upon a person’s emotions and relationships. Dementia diagnoses have been increasing and the disease is epitomised by a pervasive uncertainty resulting from an unknown future that continually challenges the person living with dementia and the important people in their life, often over an extended period.
When it comes to end-of-life planning it is not, and should not be, solely about death itself and the decisions governing a person’s final days. Instead, it should be about an approach that seeks to understand all aspects of a person’s wellbeing, care, and What Matters Most to them throughout their lifetime, no matter what age or stage of life. In the context of a dementia diagnosis, this is fundamental.
Assumptions about people’s intentions and priorities, against the backdrop of cognitive progressive decline, are often done under pressure, when the carer and family is under much emotional distress, and therefore adversely impact an individual and their quality of life. Unfortunately, the absence of end-of-life planning has forced too many people to confront painful issues during illness or grief when they feel most emotionally exposed thereby compounding their fears, concerns, and pressures upon them.
In a wider context, our challenge is always to support people in navigating the plethora of information and advice as well as to ensure we communicate with healthcare professionals involved to achieve a cohesive care planning that empowers people and those with dementia and their families to approach their later years with clarity, compassion, and confidence.
This challenge is at the core of Jewish Care’s ethos and values. It is vital for us to understand a person’s choices and preferences alongside their cultural values and to support them to feel heard and respected as well as to provide comfort to family and friends that can be so helpful in their bereavement.
Jewish Care is placing itself at the forefront of raising awareness and changing mindsets with the aspiration that, as a society, we can provide the community we support with the best care and support so that as they and their families and partners approach end of life, it can be as meaningful an experience as possible.