As Christmas approached in December 1965, Cicely Saunders could look back on a year of considerable achievement. After seven years, she had decided to leave St Joseph’s Hospice in Hackney, where she had learned in-depth the craft of caring for dying patients. She was now devoting the whole of her time to the planning of St Christopher’s Hospice, which would open in South London in 1967. Construction work at the new hospice had begun earlier in the year, support had been garnered from many quarters, and she was continuing to scour the world for ideas, insights and information that would support her thinking.
After such a busy year, it was perhaps no surprise that she went down with a ‘fearful cold’ which for several days kept her ‘penned up’ in her flat in central London. When an airmail parcel arrived from the United States she was there to receive it and opened it up immediately. Not some Christmas gift or pleasant token from a North American friend, the parcel in fact contained a shiny new book by the American sociologists Barney Glaser and Anselm Strauss. Cicely was delighted.
The book was called Awareness of Dying. It was based on intensive observation of the care of dying patients in six Californian hospitals over an extended period. An early sign that social scientists were becoming interested in the improvement of end of life care, it also introduced a new method to the social research lexicon – grounded theory. Awareness of Dying was to become a sociological classic, still being admired 50 years later.
In many ways this was a usual work to grab Cicely Saunders’ attention. She had gone to St Joseph’s as a newly qualified doctor to study pain management. But she had quickly broken out of the clinical literature alone and read widely in order to understand pain in all its facets and complexities. By such means she coined the term ‘total pain’ and demonstrated the many dimensions involved in understanding the suffering of the dying person.
She had met Anselm Strauss on a recent visit he had made to London. She was looking forward to the publication of the book and sensed it would have relevance to her own plans and thinking. So, tucked up in bed in Connaught Square, she read its 300 pages in a single day. She was immediately intrigued by its heavy emphasis on what Glaser and Strauss termed the ‘awareness contexts’ that surrounded the dying person, and where knowledge of the situation might be concealed from the patient, or restricted only to certain people.
Characteristically, and demonstrating her complete absorption in these issues at the time, she then dictated a letter to Strauss on the following morning, 9th December, setting out her reactions. It comprised three closely typed pages of detailed observation.
She disliked some of the terminology, particularly ‘terminality’, but also the use of ‘terminal patients’. She did not accept the notion of ‘pretence’ among patients who were close to death but who behaved otherwise. ‘I do not think it is necessarily a contradiction to live life as it were on two levels at once. Both can be true in a sense without necessarily contradicting each other as so often I think truth is something that does not entail reconciling two opposites but in holding them in some kind of tension so, as it were sparks fly between them’. This latter, a typically Saunders analogy.
Likewise she was disappointed to hear of the book’s poor assessment of the quality of pain management in the hospitals they had studied, but she liked everything said about families, and the remarks about encouraging patients to manage their own dying. She particularly warmed to the observations on the management of space and the idea of ‘drift routes’. Above all she praised the book’s analysis of ‘open awareness’ and the idea of enabling patients to manage their own dying. ‘I am more and more convinced that when we make any kind of a hand at doing this at all the great majority of patients will more than rise to the occasion. I am also convinced that there is a great deal that we can do and should be doing to make our management more compassionate and effective’.
She closed in a chatty way, saying how much she had enjoyed meeting Strauss and his wife when they had been in London. She told him how work at St Christopher’s was progressing. Finally, she asked him to make a visit there in due course: ‘to tell us what we are doing and what we ought to be doing better’.
One year later, Glaser and Strauss had a new book published: Time for Dying. Strauss wrote to Cicely Saunders saying a copy was on its ways to her and that she had been acknowledged in the preface. He added: ‘You may not agree to everything we have said about what I understand of your work from your writing and conversation, but praise God, you will not find it far off from your own understanding of it!’