As well as being a one-woman multidisciplinary team, Dame Cicely was an excellent teacher and mentor, guiding those we know today as worldwide leaders in hospice and palliative care.
She was also a prolific writer, publishing books, letters and academic journal articles, some of which are freely available online, while much of the rest is housed in an archive of materials – co-curated by Professor David Clark – at the Cicely Saunders Institute in London, or in the Library at St Christopher’s Hospice.
As well as containing the results of her research, through her academic writing we can trace a history of Dame Cicely’s working life. In her article, The evolution of palliative care, she outlines the evidence base that was the start of her early research on the final stage of life, mainly of cancer patients.
She goes on to chart her own growing interest in the care of people as they approach the end of their lives, how it led her to start her medical career in the 1950s at the age of 33, and further led to her work at St Joseph’s Hospice in Hackney, London.
Eventually this led to her founding of St Christopher’s Hospice, which was based on both medically skilled and compassionate care. Dame Cicely saw both elements – skill and care – as essential if the needs of patients are to be addressed comprehensively. This was the basis of her research on pain control and on the “total pain” of people with advanced disease.
She conducted this research using basic techniques – listening to patients, recording their experiences and analysing the results. Yet this work is the foundation of the modern hospice movement.
Towards the end of the article, Dame Cicely suggests a number of ideas for the future of hospice and palliative care, such as:
- further research on psychological issues
- addressing the discrepancy between wealthier and poorer nations in terms of access to palliative care; and
- the importance of changing attitudes to death and dying.
New ways of dealing with these challenges involve the management of change, but there is continuity in that they are ever-present issues that need to be addressed.
Dame Cicely’s last interview
The End of Life Studies Group at the University of Glasgow has published the last recorded interview with Dame Cicely, conducted four months before she died, by Professor David Clark, Director of Interdisciplinary Studies, and friend of Dame Cicely.
In her hospice room on Nuffield Ward at St Christopher’s, Dame Cicely told Prof Clark about the importance of dealing with physical pain, before one can address psychosocial factors. She described her own experience of pain and how this brought about her decision to stay on the ward after moving to St Christopher’s hospice for respite care.
She spoke about her own work and that of Dr Elizaberth Kubler-Ross in the United States as being complimentary, “like two blades of a pair of scissors, cutting the bonds of isolation and pain,” noting the necessity both of creating public awareness (which she saw as Dr Kubler-Ross’s speciality) and her own work in clinical research.
Asked about her time on the ward, Dame Cicely replied at the time of the interview: “I’m having lots of visitors and quite enjoying myself.”
The interview is also available as part of a Soundcloud playlist curated by the End of Life Studies group.
Works of love
To mark the tenth anniversary of Dame Cicely’s death, Prof Clark has written an article entitled: Works of love: Cicely Saunders and the hospice movement, published on the Open Democracy website.
In this article, Prof Clark provides an engaging history of Dame Cicely’s early and professional life, exploring the ways in which she challenged “the orientation of medicine to death at the time with all its taboos and silences” and noting that “in their place, she opened up a practical, personal, political and philosophical space for engaging with the care of the dying, and with death itself.”
He describes some of Dame Cicely’s revolutionary ideas, from a manifesto for good care of the dying, to the idea that pain must not only be relieved, but also prevented. He also mentions Dame Cicely’s concept of “total pain,” going beyond the physical to consider social, psychological and spiritual dimensions of pain, and her use of a multidisciplinary team to address this.
Dame Cicely Saunders “combined sound medicine with compassionate care,” opposing the standard response of “go home, there’s nothing more we can do,” through a paradigm of care which placed the patient at its centre, with the mantra: “you matter because you are you.”
Follow the Cicely Saunders page on the End of Life Studies blog for information, materials and blog posts about the life and work of Dame Cicely.