Awareness and decision making at end of life

By: Christine Valentine (University of Bath)

My desire to contribute in some way to raising awareness of and improving decision-making and support for those who are dying at the end of life with reduced agency is both academic and personal.

Having had the privilege of interviewing a large number of bereaved people and studying the way they made sense of the death of someone close I have always been struck by how this included retrospectively constructing dying trajectories that were designed to affirm the deceased person’s agency or that the dying belonged to/was characteristic of that person. Arguably, this attributing of ownership of dying seemed to be almost more important than whether or not the person suffered in enabling the bereaved person to find a way of living with the loss. In other words it confirmed Cicely Saunders’ assertion that the way someone dies has a profound and lasting effect on the grief of those left behind. It is of course a two way process in that it also depends on the way those left behind are able to make sense of that dying.

However, though our powers of meaning making may be considerable, this does not negate the impact of social context, including predominant discourses. While the notion of taking charge of one’s dying may appear to resonate with neoliberal individualism and the emphasis on personal choice and self-responsibility, what the people I interviewed were actually talking about was much more subtle, nuanced and profoundly relational. In other words, agency in dying was dependent on the understanding, involvement and support of others, family, friends and professional carers.

An important part of this support, particularly in cases of older people dying with reduced agency, is being able to pick up on and respond to those gestures that reflect the dying person’s uniqueness or ‘personhood’,  in spite of the impact of, for example, dementia. This is what I learned from interviewing bereaved people, as well as being something I experienced more personally last year over a period of 4 months when my mother was dying from dementia. It was only then that I really understood that being preoccupied with preserving the dying person’s uniqueness, and therefore their dignity, was down to the context in which that person died. Today that context is an increasingly complex, multi-agency one in which the needs of both the dying person and the family may frequently become subordinated to the ‘system’.

By the ‘system’ I am referring to what I experienced when my mother was dying, which involved feeling at the mercy of disparate services, that is, having different agendas and individual practitioners sending mixed and contradictory messages about whether the intention was to help my mother die or, remarkably, given the seriousness of her condition, get better. Indeed, it is only relatively recently that I heard on the radio that dementia had now been defined as a life threatening condition.

Also, in budget cuts, the way my mother’s dying was managed was inevitably influenced by economic considerations. While we knew that this was the case as well as that Mum was dying, it was still confusing and difficult not to get caught up in wishful thinking that perhaps we were mistaken and she would ‘pull through’ (for example, with the OT insisting that my 89 year old, bed-bound mother be lifted into a wheelchair and sent along to an exercise class). Indeed, it was only the GP who seemed to have grasped that dementia was actually killing her, while everyone else seemed to be trying to build Mum up in order to justify sending her home in spite of her clearly being at risk. Indeed, she died sooner than we had anticipated, in hospital, after being rushed in for the third time in the few weeks since being sent home.

Though I am inevitably cutting a long story short, it is one that has made me more aware of the complexities and challenges involved in end of life decision-making in relation to frail elderly people with reduced agency. However I believe that the importance of that decision making cannot be emphasised enough, both for the dying and for those left behind who will be affected by it, often for years to come.

As Glennys Howarth asserted 17 years ago in an article that challenges assumptions that dying in old age is ‘natural’ and therefore ‘easier’,  “People of all ages need to be helped out of life just as they should be helped into it – with sensitivity, care and support” (Howarth, 1998:688).

Howarth, G. (1998) ‘Just live for today’. Living, caring, ageing and dying, Ageing and Society, 18, 673-689