by Ruth White, Chief Executive, Rowans Hospice
This year we celebrate 50 years of the ‘Modern Hospice Movement’, founded in 1967 alongside the creation of St. Christopher’s Hospice in London, by the late Dame Cicely Saunders. Having worked myself in Hospice care for most of my professional life and been influenced by this remarkable woman, I want to reflect on the fundamental change she inspired in how we care for the dying. But what have we achieved in that time? Have we moved forward at all?
The word ‘hospice’ dates back more than 2,000 years to when Hospices offered pilgrims and travellers a place of rest. It comes from the Latin ‘to host’ – a place of hospitality where the acts of giving and receiving are exchanged, which is core to the values and ethos of Hospice care. This concept took on a modern interpretation in 1967 with the founding of the ‘Modern Hospice Movement’.
As inspiration for this blog, I recently revisited the seminal 1984 biography of Dame Cicely Saunders, by Shirley du Boulay, written just two years before I became a nurse in one of the then 70 UK Hospices. There are now over 200 national Hospice services and thousands throughout the world; the majority of which have been developed by local people for their local communities who too have been inspired by Dame Cicely’s movement.
As John Winton, Bishop of Winchester writes in the foreword: “This is a story that simply had to be told… for here is someone who, almost single-handed, has tackled and overcome one of the greatest unspoken fears that haunts human beings today, the fear of a painful and humiliating death from an incurable disease”.
Changing the face of care for the dying
For Dame Cicely, maintaining hope was key to supporting people to have a good death, where the focus is on the achievements that a patient can still make in the face of a life-limiting illness; helping people to live well until they die. However, she started her professional life at a time when medical and technological advancements were celebrated, and death was seen as a failure. As a consequence those who were dying were notably less well attended to.
“Our work is to alter the character of this inevitable process so that it is not seen as a defeat of living but as a possible achievement in dying, an intensely individual achievement for the patient.” (Dame Cicely Saunders)
Dame Cicely started her professional life as a nurse, but following a back injury she took up the position of almoner (modern day social worker). Throughout this time she also volunteered at St. Luke’s Hospital, caring for the dying. Through her observations and discussions with patients she was the first to realise that pain medication must be given regularly; pre-empting pain before it returns so quality of life is maintained and suffering reduced. She also noted it needed to be increased slowly and as needed, so not to compromise mental alertness, suppress breathing, cause addiction or hasten death. However, in her voluntary role it was practically impossible to influence medical practice, and she realised that to make a difference she needed to train to be a doctor. So she did, driven by a determination that was underpinned by her Christian faith.
Dame Cicely placed equal emphasis on patient care, research and teaching, and her contribution towards the care of dying people became significant over the years, using her skills derived from vast experience to teach others. This included supporting clinicians to understand that pain and distress has many facets; physical, emotional, social and spiritual; describing this as ‘total pain’ and advocating the need to support the patient holistically.
Dame Cicely firmly believed that human beings are capable of dying with dignity and peace if feeling truly valued and cared for
Crucially she advocated the need to extend care beyond the patient, to family and friends throughout illness and into bereavement, which gave immense comfort to the patient who could see that those who were significant and important to them were being cared for. In turn this supported resilience, helping families to maintain their health and well-being and reducing stress related illness in the short and longer term. Dame Cicely firmly believed that human beings are capable of dying with dignity and peace if feeling truly valued and cared for.
“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.” (Dame Cicely)
Furthermore Dame Cicely advocated a multi-professional approach, drawing on expertise from a range of professionals to work together holistically to relieve distress. She quickly became renowned in her field, travelling widely throughout the world, training others and influencing medical practice; offering a message of hope to all who were ready to hear.
It was her love for life that enabled her to embrace death
Many who knew Dame Cicely said it was her love for life that enabled her to embrace death. This reflection has such personal resonance for me and maybe this is what sustains many of us who work in Hospice care, yet is also what makes it so difficult when our own lives are in turmoil. However from our own turmoil, we also find empathy as we embrace the inevitability of loss, grief and bereavement and stay alongside those who need our support. Dame Cicely’s strong Christian faith supported her resilience too, and even in today’s more secular society where faith may be less important, many of the core values she held still hold true for staff and volunteers today.
Challenging the misconceptions
When I started working in Hospice care in 1986, her philosophy was influential in developing my skills and understanding of Hospice care, however I also believed it was specifically for people with terminal cancer, as this was the only illness for which people were referred to the Hospice where I worked.
I hope today that Dame Cicely will be pleased to see that hospice care is proactively extended to those suffering with a range of life-limiting and progressive illnesses, both early on and later in diagnosis, with people referred on individual need as opposed to simply a diagnosis. Interestingly, on re-reading the biography I see no mention of Hospice care being for people with cancer, only a reference to funding being received from the Cancer Society. Perhaps this led modern hospices to initially care for those with cancer, or perhaps it was because Hospice care was never fully incorporated into mainstream NHS services, which lead to the development of Hospice charities instead. Maybe it was this that led Dame Cicely to turn her energy into raising funds to continue the work, including the building of an education and teaching establishment, after she retired.
Fifty years on, the desire to support those who are dying remains unchanged
Fifty years on, the desire to support those who are dying remains unchanged; the same ethos and philosophy underpin the care we provide; the care approach remains the same. We now have a plethora of different medications to support symptom management and an array of different therapies, yet the challenges we still face are those Dame Cicely saw 50 years ago.
We still need to ensure that everyone in the community has fair access to Hospice care, and that those who are dying aren’t marginalised as advancements in medicine and technology continue. Our training and education needs to support modern day physicians to take the time to understand the patient’s individual needs, their hopes and their goals, and to know when to refrain from futile treatments that could compromise quality of life for those with a terminal diagnosis.
We must continue to integrate Hospice care into mainstream health and social care
We still need to work to change the perception that Hospice care is something that happens in a dedicated building for a privileged few, and continue to integrate Hospice care into mainstream health and social care, eventually preparing whole communities to care, as was Dame Cicely’s ambition.
The further development and promotion of Hospice care is no longer dependant on buildings but on the communication of ideas and attitudes. The control of pain, alleviation of symptoms and support for the family can be practised anywhere; Hospice care must strive to meet the needs of the local community in its entirety and its diversity, and most importantly the wishes of each individual patient.
In my next blog, we’ll look at the exciting innovations happening today and what we can look forward to over the next 50 years to help us overcome the challenges we still face.
Dame Cicely Saunders’ life ended on 14th July 2005, as a patient in her beloved St. Christopher’s Hospice.
In a series of further blogs over the year, we will celebrate what has been achieved in the last 50 years, and what Rowans Hospice has achieved in its own 23 year history, focusing on Education, Research, Spiritual Care, Bereavement and of course of the delivery of Modern Hospice Care. Staff from the Hospice will be attending a number of anniversary conferences hosted by St Christopher’s Hospice over the year, centred around these 5 ‘areas’ of care.