Happy birthday, Cicely: welcome to your archive!

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To mark what would have been Cicely Saunders’ 98th birthday, I’m pleased to announce that the archives of this inspirational medical pioneer are now ready for consultation. The archive, housed at King’s College London, has recently been repackaged and catalogued thanks to a generous grant from the Wellcome Research Resources grant. The catalogue can be viewed here. I was tasked with cataloguing the papers and in the following post will give an overview of the work involved, challenges, and above all why the archives matter.

KCL Online Catalogue of Archives of Cicely Saunders

Online archive catalogue for the Dame Cicely Saunders’ collection

The project

The project began in January 2015, with a survey of the three accessions of Saunders’ papers deposited at King’s between 2006 and 2009. The main task was refining the existing box lists and working out an arrangement for the overall collection. The process was helped by the previous work undertaken in the King’s College London Archives and by the Hospice History project, supervised by Professor David Clark at the University of Sheffield in the 1990s. It transpired that a lot of the existing arrangement could be adapted and that the bulk of the work would be re-ordering and describing the records in greater detail, in line with international standards of archival description.

The process of cataloguing involves understanding the content of a record, describing types of documents reflecting the context in which the record was created. This task was greatly assisted by the abundant literature available on Dame Cicely Saunders and the hospice movement, notably from Professor David Clark and Dame Cicely’s biographer, Shirley du Boulay, as well as Saunders’ own prolific body of published and unpublished work. Some parts of the job were relatively straight-forward. The most time consuming part was cataloguing the copious correspondence files, over 60 archival boxes of material, often handwritten correspondence with colleagues, friends and members of the public. These required close reading in order to identify any sensitive issues that would restrict access to the record.

While cataloguing occupied the majority of my time, another important strand of my work was the necessary preservation work on the collection. The archive for the most part was well maintained, as you would expect from modern records. The main actions needed were basic conversation treatments such as removal of old packaging and repackaging into acid free enclosures. Additional work also included the repackaging of photographic material in polyester sleeves or bespoke slide boxes and wrapping of artefacts in acid free tissue (mainly awards but also more personal items, such as collected religious icons and souvenirs). This work could be at times laborious but also ended up being the most satisfying: seeing a collection transformed from anonymous standard removal boxes or a stack of tatty photo albums to a wall of uniform archival boxes with pristine printed labels, (there’s a reason why I’m an archivist…).

The final aspect of my role was to generate academic interest in the collection. This involved presenting papers and giving talks on the archive but also regular social media activity. My advocacy highpoint was the palliative care records workshop that was hosted at King’s in December 2015. The event felt like a fitting tribute to Cicely Saunders’ legacy, highlighting the need for the collective history of end of life care in the United Kingdom and it was an honour and delight to meet Christopher Saunders, Cicely’s younger brother, who graciously stepped in to give the opening lecture.

Challenges and highlights:

The main challenge that I faced during the project was acclimatizing to the sensitive nature of considerable number of the papers within the collection. Difficult subjects that they explored will not be new to those who are familiar with her work: death; bereavement; grief; suffering; loss; pain and the right to die, and it was hard not to be moved sometimes when coming across a particularly affecting letter, especially her own bereavements that fuelled her own work and spurred on the creation of St Christopher’s. Yet, even though some of the archives record moments of individual suffering and sadness, they also reflect many accounts of uplift, salvation, love and kindness and one cannot come away without having a great deal of admiration of Saunders, her staff and institutions involved in delivering end of life care.

The main highlight from the project was getting to know Cicely Saunders’ work through her papers. It is a unique position to be able to catalogue an individual’s papers and one does an awareness of that person’s character even if you only encounter them in writing. What I really enjoyed about the papers is how ferociously she fought for the things she cared about such as pain management, end of life care and opposition to euthanasia and how she was no shrinking violet when it came to fighting what she believed in. However, she could also be pragmatic and open-minded, notably when she performed a volte-face on diamorphine (heroin) in the late 1960s when clinical research recommended using orally taken morphine instead. Away from the archives, I enjoyed visiting St Christopher’s and meeting the staff and former colleagues of Saunders. It felt akin to a pilgrimage for me, having read so much about its history and I was pleasantly surprised how familiar I was already with the architecture and layout of the hospice.

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Palliative Care Records Workshop

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On 15th December 2015, King’s College London Archives hosted a workshop on palliative care records to mark the completion of the Cicely Saunders’ cataloguing project and to bring together hospice professionals, archivists and academics to learn more about the life and legacy of Cicely Saunders and to discuss the future of palliative care historical records in the UK.

We began the morning with an entertaining and revealing talk by Christopher Saunders on his sister’s life and work. He whisked through the biographical milestones of her life enlivened by examples of anecdotes and quotations from the great lady revealing her personal, humorous, side. He provided fresh insights into her life and career, including how her father was not best pleased that she dropped out of Oxford to train to be a nurse and that working at St Joseph’s Hospice had softened her religious convictions.

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St Thomas’ Hospital graduation photograph of Cicely Saunders on completion of a nursing degree, 1944 [courtesy of Christopher Saunders]

This was followed by a highly insightful talk by Dr Michelle Winslow about her oral history project for Macmillan Cancer collecting histories from the terminally ill across five separate sites, chiefly in North-East England. The study provided a different, and rewarding way that history could be used in hospices: as a potential palliative tool that helps both patient and family, whilst providing a rich historical resource for future scholarship. The project initial began in 2007 at the Sheffield Macmillan Unit of Palliative Care and since accumulated 650 interviews with 450 individuals. The interviews have been recently deposited at Sheffield University Archives who are developing a system that will provide web access to the interviews.

Our final speaker in the morning was Dr Jonathan Koffman who gave an impassioned talk on the legacy of Cicely Saunders. He focussed on centred on Cicely Saunders’ clinical achievements, and not least her publications. His close reading of these shows how far she has influenced our current understanding of hospice care, including interaction with chronically sick and dying patients, addressing changes in demography and improving access to such care by ethnic communities and by administering more effective and regular pain management to those in need. He memorably presented the ‘Swiss Army Knife of palliative care’ – referring to a toolkit of approaches, including talking with patients and asking them what they want, which produces remarkable results, including fewer hospitalisations, longer survival times (25%) and less aggressive treatment (see study on ‘Early palliative care for patients with metastatic non-small cell lung cancer’ by Jennifer S Temel et al, New England Journal of Medicine, 2010).

In the second section of the workshop, we listened to a pre-recorded presentation by Professor David Clark. Professor Clark originally intended to deliver his talk in person but was required to be in Edinburgh for the launch of a Scottish Government report on palliative care. He described his involvement with the papers of Cicely Saunders which started in the mid-1990s as part of the then Hospice History Project, which forms the core of the King’s College London collection. He then reviewed his own publications on Cicely Saunders and reflected on the potential for further study on the subject. The video can be viewed here.

This was followed by a very short presentation by me on the collection and cataloguing project and a guided tour in the Archive’s reading room of collection highlights. The tour provided at first hand a sense of the breadth of the collection at King’s spanning Dame Cicely’s early career as a Lady Almoner at St Thomas’ Hospital, through to the establishment of St Christopher’s Hospice and her role within the international hospice movement.

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Slide from roundtable discussion presentation. Presentation can be downloaded below:

C_S_Workshop roundtable discussion paper

There next followed a roundtable discussion focusing on the records that remain to be preserved, and how best this is to be done. I gave a short presentation outlining hospice archive holdings listed within the United Kingdom and the challenges that hospices face in developing their collections. Many of the issues raised were encapsulated in the findings of the report, Charity Archives in 21st Century by Michael McMurray (Royal Voluntary Services, 2014) which identified organisational and personnel change, limited resources and lack of awareness of charities and the archive sector as reasons for the lack of development in such archival collections. However, the discussion ended with a note of optimism with participants’ enthusiastic commitment to engage with their collections and history. It was interesting to learn that Martin House Children’s Hospice had been developing their own archives over the last three years and that Hospices UK could distribute advice to its member organisations on archival practice and training. The final word must go to Christopher Saunders who was encouraged by what he heard but felt the need for ‘dynamic leadership’ to ensure that the history of palliative care is maintained for posterity.

Christmas at St Christopher’s

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Christmas at St Christopher’s Hospice was a special and poignant time of year for patients, their families and staff at the hospice. The hospice aimed to make the time as homely as possible, organising festivities, Christmas dinner and an annual Christmas Eve carol concert. In 1971, the American Journal of Nursing featured Christmas at the hospice in their article, ‘Christmas at St Christopher’s’, in their December 1971 edition.

The article was commissioned the previous year by the editor, Mrs J M Storr, based on a set of photographs that St Christopher’s Hospice photographer, Derek Bayes, produced in December 1970. The photographs showed images of patients experiencing Christmas on the ward; children from the St Christopher’s Hospice playgroup in Nativity dress visiting patients; carol concerts and Christmas pudding preparation in the hospice kitchen.

DCS_IstAcc_Contact_Prints_006

The article incorporated some of the images of the photoshoot and a watercolour image of two children running to a Christmas tree designed by a St Christopher’s Hospice patient and quotes from staff and patients as to what the atmosphere was like in the hospice at Christmas. It was followed by an article on St Christopher’s Hospice outpatient service by Barbara McNulty, sister in charge of the outpatient clinic, which began in 1969 and provided one of the first home care services within the United Kingdom.

 

I would personally like to thank all the people who have helped me during the past year especially the staff of St Christopher’s Hospice. I’m pleased to say that the cataloguing project has been extended until the end of January 2016 to allow the completion of the online catalogue, repackaging of the collection and further promote this fascinating collection. I wish you all a merry Christmas and a happy 2016.

Seasons greetings,

Chris Olver

Cataloguing Archivist

 

 

St. Christopher’s Hospice: A Space for Dying

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By Dr Avnita Amin

Dr Avnita Amin, was a visiting researcher to the archives who accessed the Saunders collection earlier this year for her MPhil dissertation on the architectural design of St Christopher’s Hospice. She kindly agreed to write a shortened piece relating to her research for the blog.   

 

The place of death remains a significant aspect of the process of dying and centres around the home, hospital and hospice. Dame Cicely Saunders (1918-2005) was widely recognised as the founder of the modern Hospice Movement after she instigated the building of St. Christopher’s Hospice in Sydenham, South East London.[1] She argued that hospice is a philosophy – a philosophy which “continue[s] to be concerned both with the sophisticated science of our treatments and with the art of our caring, bringing competence alongside compassion.”[2] It has been asserted that Saunders did not fully consider how the philosophy of hospice care she pioneered was underpinned by spatial practices[3] – yet an examination of the archival material reveals that, in fact, the geographical site and design of  St. Christopher’s – the first modern hospice –  was at the forefront of her mind. St. Christopher’s Hospice was designed to provide a physical space within which, for Saunders, a care based on love and devotion – with its historical religious underpinnings – could be combined with the most up-to-date medical advances in treatment. St. Christopher’s was to be a hybrid, specifically “planned as somewhere between a hospital and a home.”[4] St. Christopher’s was designed to continue the religious tradition of care and compassion whilst also providing facilities for up-to-date medical care and research. It was a unique building that created three main places – community, home and clinical.

The Need for a New Space

Since the nineteenth-century, hospitals were built to be highly functional and efficient spaces, allowing for classification of disease and the role of the bed changed from being a private place to one of increasingly professionalised investigation. This ‘clinical gaze’[5] required an increase in levels of hygiene, lighting and observation rather than the traditional notions of rest and comfort and resulted in the concomitant loss of patient dignity, privacy and individual status. The popular ‘Nightingale’ wards – long, open spaces with thirty beds arranged up and down the room became a standard ward layout of the late nineteenth century and continued to influence hospital design into the twentieth century. [6]  Surveys were conducted across different hospitals to provide recommendations on design and layout of the hospital. Increased single-rooms and bathroom facilities were recommended, to facilitate some patient privacy but in the most part, to reduce infection rates, increase flexibility and efficiency of bed space utilisation, “albeit at the expense of nursing ease of patient supervision.”[7] In addition, clean and dirty spaces could be better separated and treatment areas could be completely removed from bed areas. Modernist hospital architecture sought to symbolise the modern medicine being practised within the building and focus was on clean lines and natural light through large windows. Hospital design could now offer medicine “an overwhelming improvement in efficiency”[8] and with the growing social and economic demands on the National Health Service, these large, efficient structures that concentrated specialist care to encourage greater throughput of patients, was welcomed.  Smaller hospitals were closed down or moved to sites closer to the powerhouse teaching hospitals, which would serve “the whole country rather than just the area they were in.”[9] By the late 1950s and early 1960s, hospitals stood as powerful symbols of the curative powers of modern medicine, built to enhance efficiency and, arguably, resulted in the loss of patient dignity and person-centred care. Despite the goals of the new hospital buildings, continued use of older buildings led to provision of subpar care, in spite of skilled nursing. The buildings themselves were too outdated to fulfil the aims of the modern hospital.

Since the late nineteenth-century and  early twentieth-century, hospitals also became spaces for the ‘medicalisation of death.’ Death had traditionally occurred in one’s home, surrounded by family and was a public affair. The sick who would previously have been too unwell to have treatment could now be treated in hospital with new technology and modern medicines that had the ability to treat a wider variety of diseases. Yet this enhanced the view that death in the hospital was a ‘failure’ of medicine. Patients were moved to a private, hidden, space and as death drew near, the medical team would remove itself for there was ‘nothing more to be done.’[10] As hospital planning texts of the 1950s indicate, there was little attention paid to providing specific spaces for the dying and if these were needed, ought to be positioned furthest from the nurses’ station and main ward, to avoid disturbing or depressing other patients.[11] With further technological advances in medicine came a belief that almost all disease could be cured and the dying became incorporated into this ethos of prolonging life.[12] Yet medicine is, arguably, not just an applied health science in the general pursuit of cure but also a moral enterprise and one which values the individual. The conflict between cure and care came to a fore in the 1950s with voices of discontent on care of the dying appearing in leading medical journals.[13] A new solution was needed – and Saunders’ identified the purpose-built hospice as the answer.

The Denmark Hill Site

Saunders_Denmark Hill

Fig. 1: Site plan for proposed hospice at Denmark Hill, 1962

“Whatever the type of space, it is through this engagement with, or being engaged by, particular spaces that their status shifts, they are transformed from mere physical areas into places through being endowed with meaning and significance.” (my italics)[14]

In describing her design for St. Christopher’s, Saunders weaved in observation and personal experience together with the envisaged functions of specific areas as well as the atmosphere she wished to create. By comparing the design description to actual experiences of the final spaces a clearer picture emerges of how successful the design of St. Christopher’s was in creating places of meaning for patients, relatives and others. Arguably, one of the most important aspects was the site and what has not been described before is that Saunders was actually offered a plot of land at Denmark Hill, initially planned for hospital development by King’s College Hospital, London. This site was acquired in 1904 and the new King’s College Hospital was opened in 1913. It joined the National Health Service in 1948, managed by a Board of Governors. During the 1960s, nearby Camberwell Hospitals were consolidated onto the Denmark Hill Site and a new Dental School and maternity block were added.[15]The cheaper site with its ability to share other financial burdens – such as kitchen costs – with the main hospital may have provided a shorter building time and less financial difficulties. Saunders contemplated the site and even had plans drawn up for the design. The site, however, was smaller than Saunders intended, and the close proximity to the Hospital would not have allowed for expansion. Saunders was adamant that the Hospice be outside the National Health Service, as it was a “pioneer project” with a religious foundation and must be free to remain so. Saunders felt that being in the literal shadow of the Hospital would only limit the flexibility and freedom which she envisioned for the Hospice. She herself recognised the need for physical distance from the local hospital, whilst still maintaining contact with it for teaching purposes and still appreciated the necessity of having contractual arrangements with the Health Service to ensure free care for the majority of patients.[16] Had Saunders accepted this site, her vision of a Hospice may have evolved quite differently. Building on the Denmark Hill site meant compromising on the size of the buildings and would have decreased the numbers of patients the hospice could care for and pushed treatment spaces, such as physiotherapy and occupational therapy, into underground spaces. It is interesting to note that at this time, whilst the new modernist approach of ‘form reflecting function’ was forming the basis for new hospitals within the National Health Service, restrictions of finance, the multiplicity of needs and limited physical space in urban areas led to continual setbacks in design, planning and building. [17] Saunders’ active choice to build the Hospice outside the bureaucracy and constrictions of the National Health Service allowed for a flexibility in design and building which were important in creating the philosophy of hospice care that evolved from St. Christopher’s and which, had the Hospice been built within the structure of the Health Service, would arguably have evolved differently.[18]

During her time at St. Joseph’s Hospice, Saunders worked in the new, purpose-built wing, designed by Peter Smith, architect at Stewart, Hendry and Smith. Opened in 1957, it supplied seventy-five beds to use for the terminally ill, freeing up the older buildings to house those with chronic conditions. It was during construction that Saunders and Smith met and when she began to plan St. Christopher’s Hospice, she contacted him to design the building. The design of both Our Lady’s Wing at St. Joseph’s and St. Christopher’s Hospice reflected a new architectural style of modernism which rejected excessive ornamentation but rather followed the idea that ‘form follows function’, resulting in designs that were intended to be harmonious with their intended purpose. Characteristics of this style were straight lines, geometric forms, metalwork and extensive use of glass and cantilevered elements, such as the indoor ‘balcony’ at St. Christopher’s. [19]

With an emphasis on comfort and homeliness, one may have expected Saunders to have leaned towards a more residential design for St. Christopher’s but her choice in architect Peter Smith’s plans for a modernist building arguably suited her vision to create a “new English Hospice” that combined an atmosphere of home with modern equipment and a new attitude and medical treatment method for pain relief.[20]

Saunders expanded on the basic design of Our Lady’s Wing and envisioned three terminal wards, a mixture of six and four-beds, providing a total of sixteen to twenty beds. In addition, there ought to be three single rooms to provide privacy and intimacy for those in the final stages of dying.[21] Saunders was even more specific – beds were to be placed sideways to maximise space and she emphasised the need for “a feeling of space on entering the ward.” A day room was important to encourage patient interaction, which should be “cosy”, perhaps with a fireplace. With her experience as a nurse Saunders was aware of the practical needs – cupboards along the passage would be useful and that the bathrooms needed to be bigger to “bring in beds”, as well as a shower. Emphasis was also on hygiene and cleanliness – hallmarks of modern medicine but also providing a direct contrast to the squalid conditions described in home death reports[22] – there was to be a sluice at each end of the ward for waste disposal. A nursing station which had a “good view” of all the patients was also necessary, but in contrast to the ‘clinical gaze’ in hospitals, Saunders was attempting to ensure that nursing needs could be easily identified and facilitated for all patients. This was again in contrast to the commonplace practice in hospitals of the dying being removed to ‘hidden’ corners of the ward.[23] Lighting was also considered[24]; practical needs dictated the use of fluorescent lighting in main areas, but attention was given to creating a more welcoming atmosphere – tungsten, which provided a warmer, incandescent light, was used for bedheads, in the Chapel and entrance hall.[25] Natural light filled the patient areas through the incorporation of a cantilevered space running the length of the building,  providing a “projecting day space to the wards, angled to catch the early sun”[26] – a modernist architectural twist to Saunders’ request for a balcony. For privacy, the ‘balcony’ spaces could be curtained off from the ward.  Figure 2 shows some of the curtained four-bed bays and single rooms coming off the enclosed balcony, whilst image 3 shows a four-bed bay. Note the bedside lamps, flowers on the table and the informal, mixed use of the light-filled space – a young visitor reads whilst a patient lies in her bed looking out of the windows. If this was the homely, comfortable environment that Saunders wished to create, then arguably, it was the building’s design that facilitated this.

nursing times_1

Fig. 2: Cantilevered Day Space, St Christopher’s Hospice, Sydenham (1967) in St Christopher’s Hospice. Nursing Times. 28th July 1967

 

 

nursing times_2

Fig. 3. Four-bed ward at St Christopher’s Hospice, Sydenham (1967) in St Christopher’s Hospice. Nursing Times. 28th July 1967.

As a building can allow one to shelter in space, it can also allow one to shelter in time.[27] In stark contrast to the bleak spaces of contemporary hospitals, St. Christopher’s provided “warmth and welcome” and above all, time in the form of beds “without invisible parking meters”.[28] In the article celebrating the opening of this new hospice, the subtitle is ‘Time to Die’ and it is the atmosphere of “leisurely time”; time to talk, carry out nursing tasks unhurriedly and time for the patient to exercise independence, that is emphasised.[29] Saunders wanted to alleviate the crisis of the last stages of life, for this to be a “time of real living, held in the context of the life that both reaches beyond and envelops the everyday world.”[30] The purpose-built hospice sought to change the experience of the time close to death – “distress, fear and loneliness will disappear” and a time that can be “so hard or so dreary” would be transformed into one of “peace, security and meaning, a sort of homecoming.”[31] Time was given for patients to explore their own feelings through various methods – talking to staff, the Chaplain and even through creative means, such as poetry.[32]

For Saunders, the importance of St. Christopher’s as both a spiritual and medical endeavour became solidified as she developed the design and plan of the hospice. In the brochure, a specific section is dedicated to emphasising the modern scientific medicine that will be practiced, and improved, at St. Christopher’s.[33] This brochure was used to raise funds and it argued that the coupling of medical with general care made St. Christopher’s a unique enterprise worthy of establishment. As outlined in The Need, research into pain and other symptoms specific to the terminally ill was to be an important aspect of the work conducted at St. Christopher’s Hospice. To this end, Saunders specifically incorporated a post-mortem room and wrote to the Borough Coroner to ascertain any special requirements he might have.[34] Understandably, the room was not an aspect publicised in the brochure or public appeals.[35] It was built out-of-sight, under the access road to the site. By including this room, Cicely provided the space to conduct evidence-based research – important for a fledgling medical field to gain acceptance and authority in its treatments from medical colleagues and others.[36] Symptom-specific post-mortem studies were conducted after gaining explicit permission from family members and the results provided new insight into the causes of pain in the dying. These studies showed that pain described by patients could be due to more than just the primary cancer – in contrast to what was widely believed – and that pain control should be based on careful assessment of pain to identify the most appropriate medical treatment, be it further surgery or medication.[37] This work was further explored by Dr. Robert Twycross[38] who conducted clinical research into pain at St. Christopher’s in the 1970s. The Hospice provided a ready subset of patients for clinical trials, whilst the high standards of the purpose-built facility– matching those of the National Health Service – arguably added credence to any data that was published from the Hospice.

Impact Beyond St. Christopher’s

Not only did St. Christopher’s influence the building of hospices across Britain but it became the model for the first hospice in the United States – see Figure 4.[39] Architect Lo-Yi Chan was chosen from a number of entrants to design the New Haven Hospice – he stood out because he wished to visit St. Christopher’s should he win the assignment. During his visit he spoke to patients at St. Christopher’s and witnessed first-hand the community and compassionate atmosphere that underpinned the hospice philosophy. He came away from St. Christopher’s wanting to create an “architecture of healing” to provide a “therapeutic environment based on the patient’s point of view” – just as Saunders had emphasised multiple times.

From the beginning, Saunders identified St. Christopher’s as a building which would provide a sense of comfort, specialised care and up-to-date medical treatment for the specific needs of the dying. By focusing on the design of St. Christopher’s in more detail than has been previously done, it is argued that the philosophy of hospice care that was developed in St. Christopher’s had a specific spatial underpinning. This was in no small part due to Saunders herself, who envisioned in great detail and with great accuracy the final building and its wards, the bed layout, the need for flexible spaces to encourage both interaction and privacy. Architect Peter Smith provided a modernist interpretation of her ideas, a notable example of being the cantilevered day space with curtains which could provide a walkway of open space, or separate wards and rooms for privacy. St. Christopher’s truly was a hybrid building between a home and hospital – it succeeded in providing a domestic environment to create a sense of community and individuality whilst also maintaining a strong association with  the tenets of research found in modern scientific medicine. The lasting impact of St. Christopher’s lies, not on its building design, which had minimal architectural value, but on the place created, the atmosphere it fostered and the sense of community. This was a community of the staff, linked with a community of the patients (who also provided support for each other) and spreading wider into the local neighbourhood – links with teaching hospitals to spread the hospice philosophy.

So, can a building make a difference? For Saunders it was a necessary part of the hospice philosophy:

Yes, of course, a building can help…A good building can make a difference to the backs and feet of the staff and to the patients’ spirits. Beauty is very healing. It makes patients see that the creation to which they also belong is good – it can be trusted.[40]

 

Saunders_New Haven

Fig. 4: “Designing a better place to die”, New York, (1978): 43-49

 

References:

[1] Lewis, Medicine, 6-11; The term ‘modern’ has been applied to this particular hospice movement to discuss the worldwide changes to care of the dying and proliferation of hospices from the 1970s onwards. As far as the author can tell, this term was not instigated by Saunders herself, but rather applied retrospectively.

[2] Cicely Saunders, Dorothy H. Summers, and Neville Teller. Hospice: The Living Idea (London: Edward Arnold, 1981), p4.

[3] McGann, Production, p5.

[4] Cicely Saunders. “St. Christopher’s Hospice.” In Transcript of speech given at the completion of building work, London, 1966.  Box 7. Progress Reports: 1963-66. 1/2/10. King’s College London Archives.

[5] Foucault, Michel. The Birth of the Clinic (Abingdon: Routledge, 1973), xv.

[6] Thompson,J. and  Goldin,G, The Hospital: A Social and Architectural History (Yale: Yale University Press, 1975), 30

[7] Ibid, 29-31

[8] RIBA Joint Committee on the Orientation of Buildings, “The orientation of buildings” (London:RIBA, 1933), 3.; Hughes, “Matchbox”, 28.

[9] “The Cabinet Papers – Origins of the NHS,” last modified March 19, 2012, http://www.nationalarchives.gov.uk/cabinetpapers/alevelstudies/origins-nhs.htm.

[10] Philippe Aries, The Hour of Our Death: The Classic History of Western Attitudes Towards Death over the Last One Thousand Year, trans. H. Weaver (New York: Knopf, 1981), 560-571.

[11] McGann, Production, 19. Discussing “Charles, Butler and Addison Erdman. Hospital Planning (New York: F. W. Dodge corporation, 1946), 154”.

[12] Lewis, Medicine, 79.

[13] Lewis, Medicine, 124-125.

[14] Maddrell and Sidaway, Deathscapes, 3.

[15] “A history of King’s – King’s College Hospital NHS Foundation Trust,” last modified June 26, 2014 https://www.kch.nhs.uk/centenary/a-history-of-kings.

[16] Ibid., 3.

[17] Hughes, “Matchbox”, 21-51.

[18] Du Boulay 200-226. The hospice philosophy developed at St. Christopher’s spread across Britain, worldwide and resulted in the transfer of this philosophy of care of the dying to four new spaces – the inpatient hospice unit, the special terminal care ward in a hospital, home care and the hospital support team.

[19] Ken Worpole, Modern Hospice Design:, 7 and Verdeber Refuerzo, Innovations in Hospice Architecture, 29

[20] Smith, Peter. “A New English Hospice”. [Report ], Box 7. Progress reports: 1963-66. 1/2/10. London: King’s London Archives.

[21] Saunders, Hospice: The Living Idea, 45

[22] See cit 26

[23] See cit 27

[24] Saunders, Cicely. “Letter to Smith”. [Letter], Box 7. 1/2/4. London: King’s London Archives.Saunders wanted to have a “nice diffuse light”.

[25] Smith, P.A New English Hospice. and Hughes, “Matchbox”, 32. – The Hospice design eschewed the contemporary trend towards artificial light and mechanical ventilation in the newly-designed Health Service hospitals.

[26] Smith. A New English Hospice. 4

[27] Ken Worpole, Modern Hospice Design: The Architecture of Palliative Care (New York: Routledge, 2009), p264.

Worpole. Modern Hospice Design. Kindle Edition. Location 264.

[28] Cicely Saunders. “St. Christopher’s Hospice.” In Transcript of speech given at the completion of building work, London, 1966.  Box 7. Progress Reports: 1963-66. 1/2/10. King’s College London Archives.

[29] Cicely Saunders “St Christopher’s Hospice,” Nursing Times 28 July 1967: 1.

[30] Cicely Saunders. “St. Christopher’s Hospice.” In Transcript of speech given at the completion of building work, London, 1966.  Box 7. Progress Reports: 1963-66. 1/2/10. King’s College London Archives.

[31] Ibid.

[32] Sidney Reeman, “Declaration of Dependence,” in St. Christopher’s In Celebration: Twenty-one years at Britain’s first modern hospice, ed. Cicely Saunders (London: Hodder and Stoughton, 1988), 58-62..

[33] St. Christopher’s Hospice. “St. Christopher’s Hospice brochure”. Annual Reports 1/2/31. King’s College London Archives.

[34]Saunders, Cicely. “Letter to the Coroner’s Office”. [Letter], Box 7. 1/2/92. London: King’s College London Archives.

[35] St. Christopher’s Hospice. St. Christopher’s Hospice (brochure). 1966.

[36] Overy and Tansey, Palliative Medicine, 38-40. The medical field that arose out of the hospice movement is now known as Palliative Medicine.

[37] R. L. Carter, “The role of limited symptom-directed autopsies in terminal malignant disease,” Palliative medicine 1 (1987): 31-36.

[38] Clark, David, “The rise and demise of the ‘Brompton cocktail’,” in Opoids and pain relief: a historical perspective. Progress in Pain Research and Management, Vol. 25, ed. M. L. Meldrum, (Seattle: IASP Press), 85-98. Dr Robert Twycross joined St. Christopher’s as a Clinical Research Fellow in 1968.

[39] Kron, J, “Designing a better place to die,” New York, (1978) : 43-49

[40] Kron, J. “Designing a better place to die,” New York, (1978) : 49

StoryMap: Cicely Saunders’ USA tour, 1963

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We are pleased to announce the release of our interactive map of Cicely Saunders’ US tour in 1963. The map, using the free tool StoryMapJS, was created by our archives intern Kai Chun Tang, who worked on the project from March to July 2015. The USA tour was chosen because of its historical significance in the development of the international hospice movement and the rich documentary resources available, including reports, diary entries and correspondence from the trip.

The map provides a visual tool to frame archival material held within the Dame Cicely Saunders collection at King’s College London Archives. The map and Saunders’ US correspondence together highlight significant visits that influenced her understanding of care for the terminally ill, and pin-point initial meetings with colleagues and supporters who would become important figures both within the US and internationally, notably Florence Wald and Herman Fiefel.

Screenshot of StoryMap_CMS_USA_Tour

Why StoryMap:

When we were planning this project we considered using other potential platforms to demonstrate new ways of communicating and visualising archives. The other final candidates we considered were the interactive timeline platform, Chronozoom and the open graph software, Gelphi. The reason for choosing StoryMap suited the type of narrative that we wanted to present as the focus was more on the destinations in the tour rather than duration. The Gelphi project was planned to work in tandem with the story map work but unfortunately the software uploader was not compatible with our internal computer system and would have mapped correspondence network diffusion based on the extensive foreign correspondence in the collection. Whilst frustrating it does highlight one of the issues involved in these projects. While these sites are relatively easy to use they require a decent level of computer literacy and this work was certainly made easier by the expertise of our intern, Kai, who was studying for a Masters in Digital Humanities at the time.

 

Screenshot of StoryMap_CMS_USA_Tour_003

 

What was the significance of the US tour?

The US tour was Cicely Saunders’ first major international tour abroad and was the beginning of her close association with the US hospice movement. Taking in New York, Yale, Boston, Washington, Los Angeles and San Francisco, she visited at least 12 different hospitals of varying types and networked with Florence and Henry Wald, Dr Herman Feifel and many health care professionals. The tour was beneficial to all parties: for Saunders, it provided her with a wealth of new ideas, access to large network of related health care professions and reinforced her own convictions; whilst for those she met, it provided a catalyst for bringing together and inspiring people to push for better care for the dying and chronically ill.

Oral History Society Annual Conference 2015: Oral Histories of Science, Technology and Medicine, 10-11 July 2015

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This year I attended the Oral History Society annual conference held at Royal Holloway University on 10-11 June 2015. The theme of this year’s conference was ‘Oral Histories of Science, Technology and Medicine’. The conference seemed a perfect opportunity to learn more about curating oral history collections and learning about current research and users, especially as there is a variety of oral history material held within the medicine and science collections at King’s College London Archives. My aim for attending the conference was to see the current research being undertaken in oral history and what role archives and archivists were taking in providing access to these historical resources. The next two days were a refreshing and stimulating experience on how current research is increasingly conscious of the need to incorporate archival practices and how digital technology is driving improved access to collections which both academic historians and archivists are having to adapt to.

View of Royal Holloway University, University of London

The first session that I attended on the Friday morning was the ‘Archiving Oral History: Clinic’ run by Rob Perks and Mary Stewart of the British Library Sound Archives. This was a new feature to the conference that gave the first indication how archives were being actively promoted by the society. The presenters gave an overview of the workflow procedures that the Sound Archive used for processing oral history collections; from record creation to long term preservation and cataloguing guidelines. The following discussions conveyed numerous helpful practical suggestions for individual projects, in particular focusing on the legal and ethical implications of interviews and how to address potentially libellous recording. It was also interesting to see how transcript software, such as Dragon Transcription, had improved and was capable of deciphering 90% of some oral history recordings.

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The panel discussions reflected the diverse methodologies used in current oral history research. The sessions raised the issues of the constructed nature of memory; conflict between experience and historical narrative and the role of emotion within personal histories. I was particularly interested in the session on ‘Patients and Practitioners’ where Cheryl Ware, Macquarie University and Catriona Gilmour Hamilton, Oxford Brookes University discussed their research on interviewing HIV/AIDS and cancer patients respectively. Both talks discussed the ‘survivor narrative’ and how it was composed and shaped by societal narratives, it was particularly interesting how they highlighted the importance of emotion and performance in breaking with the imposed rationale on their experience of treatment.

The highlight of the conference was hearing Professor Doug Boyd’s plenary lecture ‘Play, Record, Pause: how technology is changing the practice and purpose of oral history’. He described how digital technologies were transforming the way we access oral histories and creating a global audience for them through harnessing web-based open source systems to facilitate searching. The example of the OHMS (Oral History Metadata Synchronizer) developed at The Louie B. Nunn Center for Oral History at the University of Kentucky Libraries, was remarkable as it showed how intelligent use of indexing could allow thousands of oral history recorded interviews to be made both available and accessible to researchers. He noted however, that increased access and exposure of collections does increase risk of digital content being manipulated and copyright infringed by malicious users through re-editing of recordings. Yet, this did not dilute the main messages of the need for engagement with the ‘adolescent’ digital world in order to combat obsolescence of both archive material and the profession.

 

The main reflection that I took away from the conference was the heartening news that the importance of record keeping in the oral history community was particularly strong notably in terms of long term preservation, copyright and sensitivity issues and securing a suitable repository for new material. The challenge set for archivists is being able to store, catalogue and provide access to this digital material. More time and cost effective practices will be needed, to be adapted such as keyword indexing rather than full transcription, and out-sourcing of indexing to remote volunteers.  The project to transcribe the papers of Jeremy Bentham is an interesting case study.

 

To read more about the conference please read the following post on the noticeboard for Oral History in the UK: https://oralhistorynoticeboard.wordpress.com/2015/07/17/conference-write-up-oral-histories-of-science-technology-and-medicine/

 

‘Resurrecting the Concept of ‘Dying Well’: conference paper on Dame Cicely Saunders’s archives

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I recently gave a paper on Dame Cicely Saunders’s archives at the ‘When is Death?’ conference hosted by the University of Leicester. In this abridged version of the talk, I discuss her understanding of a ‘good death’ and how the archive provides evidence for her vision before investigating how the pro-euthanasia argument challenges this concept of death.

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In 1984, Dame Cicely Saunders wrote a short article for the Cambridge Review, entitled ‘Dying Well’, where she surveyed historical approaches to death. She noted the changes within her own professional lifetime for terminally ill patients, such as the focus of treatment changing from the curative to the palliative and supportive. There was a growing consensus for the need to deal with guilt, depression and family discord and that the patient should end their lives in a place that was safe and secure for them.

Some of the records in the collection to provide evidence as to how this developed. The main principles are:

1. Alleviating physical suffering through symptom control  – the practice of palliative care

2. Addressing the patients’ mental and spiritual suffering- the concept of ‘total pain’

3. Providing a safe and secure environment

1. Alleviating physical suffering through symptom control- the practice of palliative care

Saunders believed that appropriate pain management could reduce the severity of pain in most patients, in particular cancer patients.

Her early clinical work tackled what she saw as inadequate pain management in hospitals due to lack of knowledge of analgesics and the fear of addiction in patients.

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Saunders observed great improvement in pain relief through the regular use of opiates including diamorphine (heroin) whilst working in St Joseph’s.

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Image of a graph measuring St Joseph’s patients’ severity of pain when first admitted. Taken from MD Thesis c 1964

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With the establishment of St Christopher’s, and research grants provided by the Department of Health, Saunders and her colleagues were able to produce more sophisticated surveys on pain medication in particular through the work of research fellow, Dr Robert Twycross, who undertook detailed analyses of diamorphine, morphine and methadone in the management of cancer pain.

2. Addressing the patients’ mental and spiritual suffering- the conception of ‘total pain’

As Professor David Clark has noted, a striking feature of these [Saunders] papers is their articulation of the relationship between physical and mental suffering, seen in almost dialectical terms, each capable of influencing the other. This reaches full expression in the concept of ‘total pain’, which is taken to include physical symptoms, mental distress, social problems and emotional difficulties (Saunders, 1964a).

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The need to address the emotional distress and social issues of her patients is expressed within her early work. In her unsubmitted doctoral thesis for St Mary’s Hospital she considered issues of bereavement, grief of the patient and the experience of loneliness, often taking the unconventional approach of quoting from literary sources such as C S Lewis, Aleksandr Solzhenitsyn and George Bernanos.

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Diagram listing the physical, mental and spiritual pain symptoms that Saunders’ observed in St Joseph’s Hospice patients.

3.  Providing a safe and secure environment

The importance of providing security and a homely environment was one of the key principles of the hospice environment. Saunders had experienced such institutions not only through her work in previous homes for the dying run by religious orders but also from her visits to religious retreats. One of the key influences on clarifying her ideas of this environment was the influence of Dr Olive Wyon, a retired Cambridge theologian.

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Dr Wyon provided a summary of her underlying convictions for the new hospice which Saunders repeated verbatim in her paper, ‘The Modern Hospice’ in 1986:

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These convictions were made explicit in the first leaflet produced when St Christopher’s opened in 1967. Under the heading, ‘The Christian Foundation’, it states:

The special needs of the seriously ill patient and his family make the question of religious and philosophical belief a central issue. St Christopher’s aims to create an atmosphere in which anyone may be helped, with words or without words, to find his own meaning and way of handling his personal situation.
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PROMOTING THE ‘GOOD DEATH’:

This form of dying was promoted by Saunders within her publications, media performances and lecture tours. Along with providing clinical evidence for effective use of analgesics, she also often used the patient voice or story to illustrate her views. This often came in the form of a quotation but she also used stories, poems and artwork.

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In this 1971 article, ‘A Patient’s Response to Treatment’, Saunders used the images and stories from her patients to show the process of dying and above all, emphasize the individual journeys of the patients and their families.

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Case studies of patients were a powerful tool in talking about death and also showing its transformative powers. In this example, a BBC producer, Ramsey Short recorded a diary during his illness with an inoperable brain tumour. The diary was cited by Saunders in several publications and talks notably was including it in her biography. In the diary, Ramsey describes losing his vision, his speech and the gradual progression of his illness.

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EUTHANASIA:

One of the challenges towards Dame Cicely Saunders’s conception of a good death came from advocates of euthanasia.

She was staunchly opposed to legislation that encouraged euthanasia and spoke frequently against it as well as contributing to debates with the House of Lords and British Medical Association.

The archives reveal not only her published works but also her discussions with doctors and the public on these matters through her extensive correspondence.

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Within her correspondence files, there are number of examples of debates and discussion with pro-euthanasia supporters [including Jack Kavorkian, who created the ‘Suicide Machine’].

In this example, of a debate with a South African physician she again cites her clinical experience of being able to end physical suffering. She also raises the issue of patient choice:

If you make active euthanasia a right, it soon becomes a duty. The patient, knowing that he or she can die by choice, will soon feel it incumbent to relieve relatives of the ‘burden’ of looking after them. When that stage is reached you have removed the patient’s choice”.

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Yet, even some Medical Directors of Hospices saw the difficulties in maintaining this stance with regard to the chronically ill and severely brain damaged. These patients were not the ‘typical’ hospice patient and it was difficult to treat their pain accordingly. Whilst Saunders agreed with the problems of treating these patients she maintained ‘active intervention’ needed to be prevented at all costs.

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Yet above all her position was underpinned by her faith:

We are not in a position to know what a dying man may find of reconciliation and peace in last days” (1960)

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“Dadah” and palliative care in Malaysia, from the letters of Dame Cicely Saunders

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“I have met people in Japan, in New Zealand, in Australia, South Africa, Zimbabwe, Bermuda, all over the United States and all over Europe, who regard Cicely as their teacher, the person who originated all that they are doing”

Richard Lamerton, former Medical Director of St Joseph’s Hospice, London, p188, Cicely Saunders: The founder of the Modern Hospice Movement by Shirley du Boulay (originally published 1984, updated and revised in 2007 by Marianne Rankin)

The letters that Cicely received at reflected her reputation as the founder of the modern hospice movement and international expert for the terminally ill. She received a great number of letters from overseas, many of which were from medical professionals wanting to learn how to provide more effective pain management for their patients.

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In a series of letters written between 1980 and 1981, Dr D O’Connell, Mount Miriam Hospital Penang, Malaysia, requested Cicely’s help in lobbying the government for the use of diamorphine (heroin) within the hospital. The issue was both dangerous and politically contentious as the drug or “dadah” was banned by the Malaysian authorities, with a possible death penalty for those convicted of possession.

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The subsequent exchange provides an insight into Saunders’s determined advocacy of strong analgesics, in particular, diamorphine. However, it also reveals her pragmatism in seeking alternatives rather than fighting protracted political battles, for example noting the use of opium in the Indian hospice movement when they faced a similar prohibition.

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Dr O’Connell’s response not only reflected the legal obstacles encountered in providing palliative care, but also the significance of local cultures and customs. The hospital, founded by Franciscan nuns, was originally intended to be a home for the dying, but became instead a cancer treatment centre. This change was due to the enduring Chinese custom of dying in one’s own home and the belief that death elsewhere would result in the spirit of the deceased wandering the Earth.

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Short biography of Dame Cicely Saunders (1918-2005)

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Cicely Mary Strode Saunders was born on 22 June 1918 in Barnet, London, the eldest child of an affluent family. She was educated at Roedean School, Brighton, from the age of 10. As a shy, tall girl she struggled to fit in at first, and this, she later said, made her sympathetic to people who were outsiders. She was initially turned down by Oxford University, but after studying at a crammer began a Politics, Philosophy and Economics degree at St Anne’s College. With the advent of the Second World War, Cicely became uneasy about devoting her time to study, and left Oxford in 1940 to train as a nurse at St Thomas’ Hospital, London, qualifying in 1944.

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Cicely Saunders’ certificate of qualification as a registered nurse issued by the General Nursing Council for England and Wales, 1944.   

Cicely felt she had “come home” as a nurse and finally found a profession where she fitted in. However, it was not to last, as a severe back problem forced her to give up the career shortly after qualifying, and she returned to Oxford where she applied herself to training as a lady almoner, or medical social worker, and qualified in 1947. It was during this period of her life that she discovered her faith in God and said it was “as if a switch had flipped”.

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David Tasma, c 1940

It was shortly afterwards that Cicely would meet a dying man who would have a profound effect on her life. David Tasma, a Polish Jewish refugee, who had fled the Warsaw Ghetto, worked as a waiter and at the age of forty felt he had achieved little in life. He and Cicely developed an intense friendship during the weeks he spent in Archway Hospital. It was this experience, where the idea of developing a dedicated home for the dying first germinated and which she discussed with David. He left her £500, and the prophecy, “I’ll be a window in your home”.

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Lord Thurlow, first Chairman of St Christopher’s, and Cicely Saunders ceremonially begin the building work on 22 March 1965

Cicely was now determined to assist the dying and began volunteering at St Luke’s, home for the dying in Bayswater. It was here, at the age of thirty three, that she decided to train as a doctor following the advice of the surgeon, Mr Norman Barrett, who told her to read medicine as it was ‘the doctors who desert the dying’. She qualified in 1957 and soon after took over a dual role studying pain management of the terminally ill at St Mary’s Hospital, Paddington and assisting at St Joseph’s Hospice, Hackney, run by the Roman Catholic Sisters of Charity. Here she used her medical expertise and research findings to help the nuns improve their standard of care. She developed record-keeping methods on 1100 patients, introducing a punch-card system. Notably, she wrote six articles on care of the dying in Nursing Times in 1959: they generated huge interest and were favourably reviewed in the medical and popular press.

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Dr Cicely Saunders at St Christopher’s Hospice, c 1974

From 1959 onwards, Cicely began to lobby, fundraise and plan for the building of a modern hospice based on a commitment to clinical care, teaching and research. She lectured and toured in the United Kingdom and United States promoting her ideas and by 1966 had received over £400,000 to start building in Sydenham, South-East London. St Christopher’s Hospice was opened on 24 July 1967 with Cicely Saunders serving as the Medical Director, a position she held until 1985.

Whilst at St Christopher’s, she quickly expanded its services to include home care, promoted clinical studies of pain control, championed evaluation of the hospice’s work, and developed a centre for specialist education. She continued to lecture and published regularly, including Care of the Dying (1960), Living with Dying (1983) and Beyond the Horizon: a search for meaning in suffering (1990).

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Cicely and her husband, Marian Bohusz-Szyszko [image retrieved from St Christopher’s Hospice website]

In 1963, she met her future husband, Marian Bohusz-Szyszko (1901-1995), a Polish émigré painter, after seeing one of his paintings at a London gallery. When St Christopher’s opened he became the artist in residence and in 1980 they married, the same year she received her DBE. Cicely retired from her role as Medical Director in 1985 and became Chairman until 2000, when she took the role of President in order to dedicate more time to the establishment of Cicely Saunders International, a charity to promote care and treatment of all patients with progressive illness. Among her many awards and honours was the largest humanitarian award in the world, the Conrad N Hilton Prize of one million dollars, presented in 2001. She developed breast cancer in her final years and died peacefully on Thursday 14 July 2005 at St Christopher’s Hospice.

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Cicely Saunders receiving the Lambeth Doctorate in Medicine from the Archbishop of Canterbury, Donald Coggan, 1977

For a more detailed biographical account of her work please see Cicely Saunders: The founder of the Modern Hospice Movement by Shirley du Boulay (originally published 1984, updated and revised in 2007 by Marianne Rankin) or read her own reflections on her career in Watch With Me: Inspiration for a life in hospice care, published by Observatory Publications in 2005 and available to read online via the following link: http://endoflifestudies.academicblogs.co.uk/open-access-to-watch-with-me-by-cicely-saunders/