The loneliness of the dying

The Health Ombudsman in the UK, Ann Abraham, recently published a report documenting the ways in which some elderly patients over the age of 65 had been poorly treated in the NHS. These were some of the examples:

• Alzheimer’s sufferer Mrs J, 82, whose husband was denied the chance to be with her when she died at Ealing hospital in west London because he had been “forgotten” in a waiting room.

• Mrs R, a dementia patient, who was not given a bath or shower during 13 weeks at Southampton University Hospitals NHS trust. She was not helped to eat, despite being unable to feed herself, and suffered nine falls, only one of which was recorded in her notes.

• “Feisty and independent” Mrs H, who had lived alone until she was 88, was taken from Heartlands hospital in Birmingham to a care home in Tyneside but, when she arrived, was bruised, soaked in urine, dishevelled, and wearing someone else’s clothes, which were held up with large paper clips.

Abraham’s report prompted much hand-wringing on the part of the Royal College of Nursing,  government ministers and the press. The care services minister Paul Burstow saw the report as further proof that ‘modernisation’ of the NHS was needed, which presumably means the major ‘reforms’ that his own government is proposing. He added that ‘leadership’ was needed in the NHS to ‘drive out poor practice’, and mentioned a forthcoming initiative of the Health Quality Commission NHS regulator to carry out spot checks to identify malnutrition and dignity in older patients. Inspecting older patients for dignity is an interesting proposition.

The sociologist Norbert Elias lived till he was 93 and in one of his last works reflected upon the process of ageing and dying in his book The Loneliness of the Dying. Taking a broader view drawing on Elias could be helpful in thinking about what we might otherwise consider inexplicable instances of neglect and  leap to the usual conclusions that these are either one-offs, or simply require more regimes of inspection and target-setting.

The ageing process, Elias said, marks a pronounced shift in power relations between the young and the old, and is another example of the way in which our advanced control over nature has run ahead of our understanding of social relations at this particular juncture of history. Elias’ major work, The Civilising Process, turns on the idea of interdependency between people. We become more civilised, he argues, as more and more people become more dependent on each other more of the time. This is not a linear process, since sometimes it goes into reverse,  and nor are we in control of it. The blindly operating social processes often produce unexpected and uncomfortable consequences which we cannot explain. At the same time as becoming highly interdependent, we have a parallel and heightened sense of our own individuality, as though we were sealed off from the very people upon whom we have become interdependent.

Old age, he remarks accelerates the dependency of the old on those younger,  tipping power away from them and also increasing their sense of isolation. People will respond to this process in a variety of ways according to their personalities: ‘but it is useful to remember that some of the things old people do, in particular some of the strange things, have to do with their fear of losing power and independence and especially of losing control of themselves.‘  He remarks that although the young’s revulsion from and cruelty towards the old was probably much more marked in previous ages, it has by no means disappeared in contemporary society and is one of the manifestations of this changing power relationship.

The ageing process brings about a fundamental change  in a person’s position in society, and therefore in their relationships with other people, which we may be blind to because our understanding of the social lags behind our vast store of knowledge about the biological ageing process.  Our advanced ability to manipulate and control nature can lead us to ignore affective  social relationships. While physical and medical care may be excellent for older people, and  the ombudsman’s report gives glaring examples of where it is not, we have yet to find adequate ways of dealing with the shrinking of affective ties between older people and the broader networks in which they used to play a more active part.

Elias notes that despite enormous advances in biological sciences which have increased longevity and the quality of life in the later stages,  we are not able ultimately to control ageing and death, despite our recurring fantasy about immortality. We also have a tendency to defer to the natural,  somehow believing that Nature is benign and immutable and separate from the social. He thinks that  it may be that doctors note the way that the human body is taken over by the  powers of nature and simply assume that there is nothing they can do: they shrug and go on their way once the medical intervention has bumped up against its limits. What is missing in this engagement for Elias is familiarity with the special branch of knowledge which has to do with the bonds between people and the constraints and dependencies we create with each other, which have particular qualities and different stages of our lives. Elias is optimistic that this form of knowledge will one day be considered part of medical practice, and to a certain extent it already is, that we can become more knowledgeable about how,  in the ageing and dying process, relations with others take on a special importance:

‘Of course, it is not easy for people to witness this process of decay with equanimity. But perhaps people in this situation have a special need of other people. Signs that the bonds have not yet been severed, that those leaving the human circle are still valued within it, are especially important since they are now weak and perhaps only a shadow of what they were.

Our attitudes to dying are neither unalterable nor accidental, since they reflect the particular stage of social development which we have reached. Our increased life expectancy has made death seem like a much more remote prospect for many of us, where in previous times it would have been much more immediate and more publicly acknowledged.

Elias notes how the rationalised ways in which we currently treat the elderly and dying may work against our paying attention to  these affective bonds between us, our own fear of death, and our acknowledgement that we are engaged in relationships of power with others. In the advanced, scientifically based  medical treatment that we practice, contact with the people whose presence may be of utmost comfort to a person taking leave of life,  may be thought of as secondary or as an impediment to rational treatment, or perhaps an inconvenience to the routines of professionals. (At the same time as saying this  he is not starry-eyed that familial relationships are all positive ones: he realises that they may also  involve jealousy and contempt).  However, to have people present who are of emotional value to the dying person, and vice versa, means that the person takes leave of this life publicly and amongst people who continue to recognise each other. The dying may depart ‘unhygienically’  and inconveniently (as far as medical staff are concerned) if surrounded by people they care about, but they do not die alone.

If we take Elias seriously, then, treating patients with dignity involves much more than dealing with the individual attitudes of medical staff, or creating more inspection regimes. Nor will it be improved necessarily by more leadership, whatever the government minister understands by that. Treating older patients with dignity is not a discrete ‘problem’ to which there is a particular ‘solution’. Respect, dignity and humane treatment of each other involves our paying attention the contradictory, complex and sometimes paradoxical nature of our interdependencies, the need for mutual affirmation, and the way in which our relationships with each other give us a sense of meaning of living in the world.  It will concern understanding better our  changing relationships of power, particularly towards the end of our lives, and our need to belong. Being a highly trained  medical professional is not enough on its own to guarantee a high quality of care, if we take quality to mean more than just treatment. Sophisticated routines and procedures may be the very things that can contribute to  the loneliness of the dying.

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