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‘Total Pain’ Theory: Cicely Saunders and the rise of the hospice movement

Dying and the Dead module

This post continues our series from students on ‘Death, Dying and the Dead’, an MA history module at the University of Leeds. This post, by Ben Wright, focuses on the the impact that Dame Cicely Saunders had on end of life care in Britain and globally.

Image of Cicely Saunders.

Dame Cicely Saunders (1918-2005)

When seeking to examine the history of palliative care in the UK over the course of the twentieth century, there is a key architect and figurehead that cannot be overlooked. Dame Cicely Saunders (1918-2005) is widely acknowledged as the central pioneering force behind the creation of the modern hospice movement – those spaces where the terminally ill could receive sensitive nursing and where they could be allowed to die with dignity.

Dame Saunders accomplished so much that cannot be done justice to here, so instead there is focus on a single but central element of her work: a commitment to the advancement of effective pain control. By the early 1960s, after experiences working with terminally ill cancer patients first as a nurse and then as a social worker had led her to retrain once again as a physician, Dame Saunders presented a new interpretive framework for understanding pain to have a discrete physical, psychological, social and spiritual composition. It was a concept that would come to be termed ‘total pain’ theory, and it was revolutionary at a time when western medical practice normally gauged the severity of pain by the somatic injury that caused it. Dame Saunders recognised that the skill to detect and isolate with precision the causes of a patient’s pain symptoms permitted the formulation of enhanced remedial action, usually in the form of analgesics. This would become a critical element of hospice care, for once pain is under control and a patient is not as distracted by it, both care-giver and patient can place greater emphasis instead on improvements to quality-of-life, so the theory goes.

As the hospice movement began to progress, Dame Cicely lectured widely on the subject, writing countless medical papers and contributing to a great number of books. In 1983, Saunders appeared on Thames Television, interviewed by Judith Chalmers about the importance of palliative care for those who are seriously ill. For the historical record the interview has much to offer. It complements the already sizeable catalogue of written material on how the hospice movement came to be established, providing an oral account directly from the progenitor. We get a good sense here of Dame Saunders’ personality and her skill as a parabolic communicator. Often biographical accounts will make reference to her charisma and leadership, intangible qualities that can be difficult to convey via written sources, but they are evident in this conversation.

It is also a helpful resource in understanding first how Dame Saunders came to regard better pain control as the critical missing ingredient of end-of-life care, and second what she did about it. Common practice at the time had been to inform the family of a terminal prognosis, but not the patient. Dame Saunders felt that instead much mental anguish in a patient could be alleviated through information sharing and through clear and open communication about their condition. There is also detail here about her approach to the use of analgesics. Dame Saunders was a strong advocate for the use of opiates, particularly heroin, in small doses and from an early stage after prognosis. It is clear that by this point in her career, Dame Saunders is relaxed and well versed in rebuffing public concerns about their addictive nature.

The second source selected here to understand her life is a portrait of Dame Saunders, which was painted by Polish émigré Marian Bohusz-Szyszko (1901-1995) in the early 1970s. It hangs at St Christopher’s Hospice. In 1963, Bohusz-Szyszko held an exhibition at the Drian Gallery in London at which the then Dr Saunders saw his painting Christ Calming the Waters and, having immediately recognised its synergy with the philosophy behind her work, purchased it with a view to future installation at the hospice. Dame Saunders felt confident that this was evidence of celestial intervention. In a letter to the artist the very next day, she wrote:

The message of your picture is so fundamental to what we are going to try and do, that I am certain that it was no mere chance that made me attracted by your pictures, and drew me to the gallery, the last evening before it closed.

After the purchase they maintained contact and became very close. Bohusz-Szyszko was appointed ‘artist in residence’ at the hospice after it opened in 1967, with at one stage more than eighty paintings on display. Dame Saunders came to regard Bohusz-Szyszko's paintings as an integral part of ‘total pain’ theory - for the easing of social and spiritual pain in particular. The source is one way in which the important link between palliative care and art can be summarised. When a patient’s pain is reduced, what should they do with their valuable time and energy? Today, it is common for artworks created by users to be displayed in hospice environments, and they can have a unifying effect, offering, as curator Douglas Hall put it ‘a continuum of interest throughout the building, in which patients, their visitors, and the staff are all enveloped.’

Modern palliative care nurses have other models beyond ‘total pain’ theory to select from when deciding how to approach the care of the dying, Katherine Kolcaba’s ‘comfort’ theory for example or Wasserman’s ‘respectful death’ model. But all such models place a high value on dignity, respect and the wishes of the person who is ill, and all acknowledge, to some degree or other, that a holistic balance of body, mind, and spirit is the appropriate pathway to the relief of discomfort. In 2014 the World Health Organisation declared palliative care to be a human right. That standard is undoubtedly attributable to Dame Saunders’ work on pain management, and illustrative of why the ‘total pain’ theory is the most important and innovative concept to emerge in the field of palliative care.

Further Reading
Dobson, J. (2017). Dame Cicely Saunders – an inspirational nursing theorist. Cancer Nursing
Practice, 16(7), 31–34.
Saunders, C (2005) Watch with Me: Inspiration for a life in hospice care. Lancaster:
Observatory Publications.