Two reports that shaped the history of end of life care in the United Kingdom – by David Clark

The UK welfare state upon its creation in 1948  sought to vouchsafe care ‘from the cradle to the grave’, yet the early years of the National Health Service saw little attention to care at the end of life and focused instead on addressing the widespread acute and chronic health problems of a society grappling with post-war social and economic reconstruction. In the first two decades of its existence there is little evidence that the NHS offered any strategic or operational guidance on the care of the dying. Indeed, where such guidance did appear, it was usually from charitable and philanthropic sources. Two major reports prepared during the 1950s are particularly relevant in this context. They  provide evidence on the social conditions encountered by dying people in Britain in the 1950s and also sketch out the actual and potential organisation of terminal care services. Both emanated from outside the portals of the NHS. Yet they contributed to a modest shift in medical discourse on terminal care and paved the way for some important future developments.

Upon these two rather fragile edifices the ground breaking and deeply consequential work of Dr Cicely Saunders was established, from the appearance of her first publication on terminal care in 1958 to the opening of St Christopher’s Hospice a decade later [i].   Led by her efforts, a new way of thinking about terminal care began to emerge in the 1950s, which eventually had the power to consolidate into a strategy for action, initially at arm’s length from the NHS itself but eventually with wide ranging effect.

Birth of the welfare state and NHS

How and why concerns about the care of the dying came to develop in the first 20 years of the NHS remain poorly understood. in these years there were divided views within medicine about the legitimacy of care at the end of life as an area for specialisation. Older doctors clung to a paternalist viewpoint in which their primary role was that of the comprehending and sympathetic friend to the dying. The first waves of doctors trained wholly within the NHS however began to produce some who made the care of the dying an object of specialist clinical, research and teaching endeavour. Between these lay a not insubstantial body of medical opinion which lent at least some support to changes in the law on euthanasia. A further tension emerged in the debate about how much attention should be given to the dying elderly in general, as opposed to those, of any age, dying of cancer. Finally, a narrative appeared in which those who did champion the cause of terminal cancer care found themselves struggling in the face of a more deep-seated resistance to the notion that medical, religious and social care of the dying deserved any special recognition on the part of either practitioners or policy makers.

The social conditions of dying in 1950s Britain – two reports

Two major reports, compiled at the beginning and at the end of the decade, cast light on the social conditions of dying in Britain in the 1950s and also served as powerful rhetoric for change. The first of these was prepared by a joint committee of the Marie Curie Memorial and the Queen’s Institute of District Nursing, and was chaired by the surgeon Ronald Raven [ii]. The Marie Curie Memorial had been established in 1948 and held among its objects the promotion of welfare and relief for cancer patients. A joint committee of the Memorial and of the Queen’s Institute first met in 1950 with the purpose of investigating the needs of domiciliary cancer sufferers and its report was published two years later. The second report was prepared by Dr H L Glyn Hughes at the request of the Calouste Gulbenkian Foundation and was based on enquiries carried out between November 1957 and December 1958 [iii]. It contained a description of current provision for the care of the dying, together with recommendations for development.

Concerning patients with cancer nursed at home

The joint committee’s objective was to undertake a national survey of patients with cancer, living in their own homes and with special reference to their circumstances and needs. It adopted a method which involved sending questionnaires to district nurses across the country from February to August 1951, when 179 of the 193 local health authorities approached co-operated in the survey. In this way information about cancer patients being seen by the district nurse was obtained for 7,050 cases in England, Wales, Scotland and Northern Ireland. Nearly 70 per cent of the patients were aged 60 or over and more than 24 per cent were 75 years or over. It was amongst these older people that some of the gravest social problems were found. Patients were described in the following ways [iv]:

… illness very far advanced when friends called a doctor, and who lived in extreme squalor, resisting any attempt to wash or care for her.

… alone in a bed-sitting room, seldom visited by her married children, relying on the goodness of neighbours … receiving very little nourishment.

Or more graphically still:

… house was dirty as she was too ill to clean it, and her clothing filthy with neglect and discharge from the ulcer … gave food to her pets which she needed herself.

There were numerous examples of delays in seeking treatment or even of the refusal to be treated. A high proportion of patients were considered gravely ill at the time of the survey, and district nurses often believed they had been called in at too late a stage of the illness. More than half the patients were reported bedridden. The nurses also described the mental suffering of their patients:

He does not become depressed by the very acute pain, but becomes very despondent and loses faith in every possible way as he feels he is gradually worsening, and that no-one is taking any interest … [v]

The survey placed a strong emphasis upon the physical conditions in which the patients lived. In 28 per cent of cases the patient had only one living room; 10 per cent had only one or no bedroom; five per cent lacked adequate cooking or washing facilities; seven per cent lived alone; less than a half had hot running water; and 38 per cent had no accessible lavatory.

The report concluded with a series of recommendations, including the need for more residential and convalescent homes; the importance of better information for cancer sufferers; and greater provision of night nursing, home helps, and equipment. Some patients, the report indicated, were unaware of the provisions of the National Health Service Act or of their eligibility with the National Assistance Board. The Marie Curie Memorial was galvanised into action and within a year of the report’s publication it had begun opening homes for terminally ill cancer patients. In 1958 this was further extended by the provision of a night nursing service; and by the early 1960s 24 authorities in the provinces and fifteen London district nursing areas were being served by over 200 Marie Curie nurses [vi]. There is no evidence however of any systematic response to the report from elsewhere within the public health and welfare system.

Peace at the Last

The second report was prepared by Brigadier H L Glyn Hughes, a former army doctor – he had been the first allied medical officer to enter the Belsen concentration camp at the end of world war two.. Like the joint committee, Glyn Hughes gave considerable attention to the social conditions of the terminally ill, but his report was more wide-ranging in character and devoted greater prominence to matters of policy and service organisation[vii]. His focus was upon the terminal care of those with an expectation of life of no greater than twelve months, and particularly upon the very last stages of life. He began by highlighting the fact that, whilst numerous enquiries and reports existed on the medical and social problems of the aged and the chronic sick, none had given adequate attention to the problem of terminal care. A particular aspect of his enquiry was therefore concerned with ‘the extent to which the Welfare State has made adequate provision to deal with this problem both now and in the future’ [viii]. Against the background of the Joint Cancer Survey Committee’s findings, Glyn Hughes was concerned with the unanswered question of where and by whom the elderly terminally ill would be cared for.

The Glyn Hughes survey sought information from every Medical Officer of Health in the United Kingdom; in addition the senior administrative medical officers, who were responsible for the hospital services throughout the regional hospital boards, provided a range of statistical data on the use of hospitals for terminal care. Many voluntary organisations, religious orders and other groups were also consulted and 300 site visits were made. The National Council of Social Service provided information on 150 of its local councils. Finally, a survey of over 600 family doctors was conducted.

The report showed that two-fifths of all deaths in 1956 occurred in NHS hospitals, with under a half of all deaths taking place in the home. Almost 46,000 cancer deaths (approximately one third of the total) took place at home and it was considered that many of these would have required continuous medical and nursing care. Similar needs were thought to be in evidence amongst some of the 121,000 who died at home from diseases of the circulatory system. Overall Glyn Hughes estimated that some 270,000 people in need of ‘skilled terminal care’ died each year outside of NHS hospitals.

The conclusions to the report were prescient and acknowledged that ‘for a long time to come there will remain a need to make use of accommodation outside the National Health Service, both in voluntary and profit-making establishments’[ix]. By the former he referred to homes for the dying run by charitable organisations and religious orders, of which (as we have seen) only a small number existed. By the latter he made reference to the much larger number of nursing homes. Neither in his view could be given a clean bill of health. In the homes for the dying, although ‘love and devotion’ were in evidence from the staff, there were poor staff-patient ratios, a paucity of fully trained nurses, austerity, a lack of comfort and an air of financial constraint. Among the nursing homes a large proportion were deemed ‘quite unsuited to provide the terminal care of patients who, in their last stages, require the most skilled nursing attention; in fact in many of them the conditions are bad, in some cases amounting to actual neglect when measured by standards that can reasonably be expected’ [ix].

Whilst dying at home was seen as the preferred alternative for most patients, Glyn Hughes stressed the importance of calculating the total number of inpatient beds which would be needed for terminal care. He was eager to stress the value of special terminal care beds within the curtilage of hospitals for the acute sick. At the same time he considered that the independent homes for the dying should develop closer links with hospital services in order to reduce their isolation. The review quickly had a wider impact and some major medical journals now began to take an interest. A review of the report in The Lancet declaimed:

We must attack the problem on every side: hospital services must be improved and extended, staff in residential homes increased, and voluntary as well as profit-making institutions helped in return for an approved standard of care.[x]

At the same time the review recognised some of the impediments to this – the limits to hospital expansion, the inadequate supply of trained district nurses, and the lack of home helps. The Lancet did however endorse Glyn Hughes’ radical suggestion that payment be made to women for the full-time care of their dependent relatives.

Book ends

Like book-ends at the start and finish of the decade the reports of the joint committee and of Glyn Hughes highlighted the deficiencies of terminal care in the welfare state of Britain in the 1950s. The joint national cancer survey committee had drawn attention to the abject social and economic conditions of many elderly people suffering with advanced cancer. Glyn Hughes had revealed the absence of a serious policy commitment to terminal care provision; indeed his recommendations highlighted the need for voluntary and for-profit organisations to work in conjunction with the NHS to achieve the necessary results.

Both reports had alluded to a perceived underlying change in family values likely to have a bearing on the situation. Neither is categorical on the question of whether or not families had become less willing to look after their sick and dependent members, though Glyn Hughes reports that this was widely considered by GPs to be a consequence of the introduction of the National Health Service. Rather, a picture emerges of families struggling to balance a range of pressures and responsibilities. So the joint committee refers to the problems of relatives who have to earn their living during the day and who may suffer from fatigue and undue stress from night-sitting over a prolonged period[xi]. Meanwhile  Glyn Hughes, in a period when large sections of the population were moving to new towns and suburban estates, concluded that ‘with the much smaller family of today the provision of help by relatives will get less and the requirement of institutional care at the end will increase’[xii].

Coupled with mounting demographic evidence, the reports argued for terminal care to become a priority for the NHS. By 1951 more than ten per cent of the population was over 65 years, compared to less than five per cent in 1901. It was also an era which marked a shift from high mortality associated with infectious disease towards a greater awareness of chronic illness and the long-term effects of disabling conditions.

Impact

On their own, these reports were not sufficient to create a sea-change in policy. However, they did stimulate, and were in turn strengthened by, a growing clinical interest in questions of terminal care which served slowly to draw further attention to the needs of those in the final stages of life. As this interest manifested itself in published research and commentary, so it served to promote further the conditions which would allow more fundamental developments to take place. Slowly, ‘anecdote’ gave way to ‘evidence’ as an orienting theme. The provision of care to the dying still remained the primary concern of charitable organisations but by the early 1960s a new discourse of terminal care was emerging. It did so however against a background of policy neglect and clinical disinterest, which was slow to dissipate. The period 1948-67 displays some marked innovations in thinking and practice relating to terminal care, but also some important continuities with the past. It is this combination of innovation and tradition, oddly located within the fissures of the modern welfare state, which provided the conditions of possibility for later hospice and palliative care expansion in the United Kingdom.

David Clark

[i] Clark, D. (1998a). Originating a movement: Cicely Saunders and the development of St Christopher’s Hospice, 1957-67. Mortality 3(1), 43-63; Clark, D. (1998b). An annotated bibliography of the publications of Cicely Saunders – 1. 1958-67. Palliative Medicine, 12(3), 181-193.
[ii] Joint National Cancer Survey Committee  of the Marie Curie Memorial and the Queen’s  Institute  of District Nursing (1952). Report on a National Survey Concerning Patients with Cancer Nursed at Home. Chairman, Ronald Raven. London.
[iii] Glyn Hughes, H.L. (1960). Peace at the Last. A survey of terminal care in the United Kingdom. London: The Calouste Gulbenkian Foundation.
[iv] Joint National Cancer Survey Committee  of the Marie Curie Memorial and the Queen’s  Institute  of District Nursing (1952). Report on a National Survey Concerning Patients with Cancer Nursed at Home. Chairman, Ronald Raven. London, pp17-19.
[v] Joint National Cancer Survey Committee  of the Marie Curie Memorial and the Queen’s  Institute  of District Nursing (1952). Report on a National Survey Concerning Patients with Cancer Nursed at Home. Chairman, Ronald Raven. London, p25.
[vi] Gough-Thomas, J. (1962). Day and night nursing for cancer patients. District Nursing, November, 174-175.
[vii] Glyn Hughes, H.L. (1960). Peace at the Last. A survey of terminal care in the United Kingdom. London: The Calouste Gulbenkian Foundation, p 10.
[viii] Glyn Hughes, H.L. (1960). Peace at the Last. A survey of terminal care in the United Kingdom. London: The Calouste Gulbenkian Foundation, pp48-9.
[ix] Glyn Hughes, H.L. (1960). Peace at the Last. A survey of terminal care in the United Kingdom. London: The Calouste Gulbenkian Foundation, p24.
[x] Review of Glyn Hughes, H.L. (1960). Peace at the Last. A survey of terminal care in the United Kingdom. London: The Calouste Gulbenkian Foundation p.195
[xi]Joint National Cancer Survey Committee  of the Marie Curie Memorial and the Queen’s  Institute  of District Nursing (1952). Report on a National Survey Concerning Patients with Cancer Nursed at Home. Chairman, Ronald Raven. London, p31.
[xii] Glyn Hughes, H.L. (1960). Peace at the Last. A survey of terminal care in the United Kingdom. London: The Calouste Gulbenkian Foundation, p36.