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