Dying, facing our deaths and those near us, is something we all must do. Some of the greatest philosophers have concurred that to live is to prepare for death.
Yet we live in a death-phobic culture which – largely due to the digital environment – is incredibly fast, distracting, bright and shiny and ‘full of life’. In relatively recent history people accepted death as a normal part of life, inevitably to be faced with sadness and mourning but never as a sudden shock as if some malignant miracle had occurred.
With so many of us in the rich countries living longer than ever, longevitiy for the majority bringing with it pain and suffering, dementia and deadly diseases, how do we prepare for death? Do we expect the incredible medical advances and technology to keep us going for ever? Is that our goal – to squeeze as many years and days out of life as we can? Has technology in this as many other other cases further removed use from nature and being a human rather than a machine?
In any case, what, if anything, can ‘digital health do to address the truth of our mortality? Lots of big questions here but as you and I will die we need to think of our own deaths. As a society, the birth rate is falling quickly at the same time as the older population is greatly increasing. Who will look after the old, who will pay for that care?
Perhaps we need to understand that technology has little part in our dying, apart from its role as a tool to alleviate pain and enable diagnoses. Certainly, there is a small number of enthusiastic scientists who believe that in this century that not only all disease but death itself will be defeated. We’ll look at these claims in later posts but for us here and now, dying is the truth of our lives.
With luck, and perhaps some forethought, we will have a ‘good death’, one that is peaceful and pain -free. The stark evidence, however, suggests that the majority, especially the poor, may face death unprepared, bewildered, frightened. Some – about 5% of the population – will receive palliative care; most will die in busy hospital wards or nursing homes.
To end on a bright note, here is Dr Kathryn Mannix who has 40 years experience as a consultant palliative care physician. She’s written a lovely book called With the End in Mind. There has been a growth in recent times of interest in death: academically it’s called thanatology. In most UK cities there are ‘death cafes’ where ordinary folk meet to talk about dying – not only people with a terminal diagnosis but anybody who believes that one day they will die.
We will all die as unique individuals, in different circumstances. Some will die suddenly but most of us will die more slowly (in fact, from the age approximately of 21 we are all in the process of dying). Digital technology can provide huge swathes of data about populations but the individual alone is a unique human being, and part of that unique being is unique dying. As laypeople we may be able to ease and support someone’s dying: most of us can’t. We are frightened and adrift in the face of death. Some of us will demand of doctors futile medical treatment. Doctors and nurses themselves, in addition to their expertise, don’t always have the time and, especially, the understanding to help the dying. At this important point of a person’s life what is needed most of all is kindness. Kindness is also the most important part of living, something we forget in the full flood of youth and health.
In the area of digital health we should never forget that it is but a series of technical tools, perhaps as sharp as a scalpel, that in no way is as essential as the human touch. ‘Health’ comes from the word ‘whole’ and our whole being is our unique full personhood with all the fears and joys, memories and loves, body and soul. We should always put people before data, and before people we should put the unique individual human person.
The Machine Zone 