“You matter because you are you”: the story of modern hospice care

Hospices don’t just provide medical care to people living with a terminal illness or life limiting condition. They span a range of other support too, like social, practical, emotional and spiritual. But it wasn’t always this way. The current model of hospice care developed in the 1960s, when a woman named Cicely Saunders established the first modern hospice. 

Almost 60 years later, hospices are needed more than ever before. As medical treatments improve, people are living for longer and with more complex health conditions. It’s essential that hospices continue to be available for them, so they can live well in the final months and weeks of their lives. As Hospice UK campaigns for sustainable funding to secure the future of hospice care, we’re taking a moment to look back on the past. 

Professor David Clark is a sociologist who knew Cicely personally and has had a special interest in chronicling her history and that of the wider hospice movement. He’s an authority on Cicely’s journey to modern hospice care, and how things have changed in recent years. He’s also written a play, ‘Cicely and David’, which explores the relationship that sparked the idea for the first modern hospice. 

Cicely Saunders: an unorthodox career

Cicely Saunders’ career path was rather unorthodox. Before founding the first modern hospice, she wore many different hats, each informing some aspect of her eventual vision. 

Professor Clark explains that Cicely started off studying the equivalent of a Politics, Philosophy and Economics degree at Oxford university. “But in the second year of her studies,” he tells us, “the Second World War broke out and, to her father's dismay, she decided to abandon her studies and train as a nurse - she wanted to get involved in the war effort”. 

Whilst Cicely enjoyed nursing, the physical demands of the role caused recurring back problems. As a result, she was forced to quit her job and return to her degree. But Cicely never lost the drive to do something that directly helped people. After graduating, she decided to become a medical social worker at St Thomas’ Hospital in London – a role where she could use her knowledge of both social science and nursing.

It was at St Thomas’ that she had her first real encounters with people living with serious illness, or who were dying. These early experiences prompted her to think about what these patients really needed. 

One patient in particular, David Tasma, was very influential in Cicely’s journey to modern hospice care. Tasma was a Polish migrant who was receiving treatment for an incurable cancer at St Thomas’. “[Cicely] immediately senses he’s going to need special support,” Professor Clark explains, “And she takes a particular interest in him.” 

Cicely and David

Professor Clark explains that David Tasma’s main problems weren’t physical, but psychological, spiritual and social: “He'd left Poland just before the war. He'd abandoned his family as he saw it. And he didn't know what had happened to them... he couldn't go back. He'd given up his Jewish faith, so he had all of this kind of existential pain.” 

Even as a novice social worker, Cicely began to understand that patients like David needed more than purely medical interventions. She would visit David regularly and they’d talk about the kind of place that might be better for someone like him to die. A place more suitable than the busy, noisy hospital ward he was on.

“It was in the course of those conversations that the idea of hospice came about in this modern sense,” Professor Clark explains, “that's when this phrase ‘I'll be a window in your home’ [came about], which was attributed to David Tasma. [He] was referencing this new home that she would be able to develop, and he left her some money to sort of kick start that process.”. 

Photo credit: Derek Bayes, St Christopher's

Discovering hospice care

After David died, Cicely continued as a social worker for years. And it was at St Thomas’ that a surgeon saw Cicely’s aptitude and interest in medicine. Encouraged by him to pursue further study, Cicely became a medical student at the age of 33. “This is what makes her a singular person,” Clark explains, “She's a nurse, a social worker, and a physician. And I like to say she was also a social scientist before that.”

After qualifying as a physician in the late 1950s, Cicely made a bold choice. Instead of following the tried and tested path into one of London’s teaching hospitals, she took a position at St Joseph’s Hospice in Hackney, one of the first hospices in the UK. Clark explains that this is where she really “learned the craft of end of life care”. 

St Joseph’s was a Catholic institution looked after by nuns. The sisters focused on the spiritual and emotional side of care, but lacked the scientific expertise to adequately meet medical needs So, Cicely secured a research grant to develop studies at the hospice focusing on pain management. Her research showed the potential of the sisters’ approach to care, but highlighted that it needed to be underpinned by science and research. 

In the early 1960s, after a few years working at St Joseph’s, Cicely started planning a hospice under her own leadership. This hospice would be different from hospices of the time. They were providing brilliant care, but stopped short of providing teaching and research. Cicely envisaged a modern hospice that would do all three. It would not only look after those who received care within its walls, but influence care more broadly. This was the beginning of the modern ‘hospice movement’.

Creating a Movement

Many think of Cicely Saunders as the founder of the modern ‘hospice movement’. But it’s a term which can be controversial. In some palliative care settings, people may prefer to think of themselves as part of an integrated, organised care service rather than a ‘movement’. Professor Clark acknowledges the problems with the term, but explains that he sees it as a ‘movement’ in the sense that modern hospice care started with Cicely and the like-minded people she gathered around her.

“It was a movement in that they shared information,” Professor Clark tells us, “They shared experiences, they helped each other in many different ways. And it came up - if not out of the grassroots - it certainly emerged not as a result of policy mandates.”

Before opening the first modern hospice, Cicely spent time sharing her vision and learning from others in the care community. She wrote publications about caring for terminally ill patients and received an OBE for her work in the field. She even travelled to America to give lectures, finding like-minded souls who believed in the new model she was proposing. 

Throughout this process she finalised her plans for what her new hospice would be and do. 

St Christopher's Hospice

Using all she had learned, and with the support of the local community, Cicely opened St Christopher’s Hospice in 1967. Like many hospices today, it had wards and a focus on patient care, as well as a specific teaching and research function. By the late 1960s Cicely was widely known and respected in the field of end of life care. Her reputation resulted in a lot of attention when St Christopher’s opened; the appetite to see this new form of hospice was so great that the first visits took place before any patients were even there.   

Cicely made another bold choice that would have a long-lasting impact on how hospices are run today. She chose to open the hospice as an independent charity, separate from the NHS. This would give her the freedom to explore and develop new methods of care outside the confines of existing healthcare policies. And these pioneering new techniques could then be fed back into the wider health care system.

Photo credit: Derek Bayes, St Christopher's

Clark says that the new hospice inspired many others working in care: “It was like a pebble dropping into a pond - the ripples went far and wide”. St Christopher’s had visitors coming from as far as America to learn from the new model Cicely was championing. And very quickly other hospices were established as independent charities. At first these were just across the UK, but soon other countries started to follow suit.

Professor Clark explains that at the time St Christopher’s was established, government policy around end of life care was practically non-existent: “Nobody at the time in the policy arena was saying, you know, ‘we need some kind of concerted effort to deal with the issues of caring for people at the end of life, and the large numbers of them that are going to be coming our way’.” Part of Cicely’s goal with St Christopher’s was to gain the ear of policymakers and integrate hospice and palliative care into health policy frameworks.

Professor Clark describes how Cicely and others in the early hospice movement had to fight in “a kind of battleground”. They struggled to convince doubtful clinicians that there was a better way of looking after people at the end of life than what was currently being offered. 

“The mantra of ‘there’s nothing more we can do for you’ was turned on its head by Cicely,” Professor Clark tells us. He explains that Cicely’s philosophy was instead, “there’s everything we can do for you, if we’re imaginative and we work at this”.

Photo credit: Mary McCartney Donald

The hospice sector: (nearly) 60 years of change

As you’d imagine, the hospice sector has seen change and developments in the years since its inception. Professor Clark explains that hospices soon realised that they needed to change their approach if they wanted to be listened to by policymakers, politicians and the media. This meant that the movement had to move on from the radical stance it held in its early years. Becoming more mainstream brought recognition to the hospices and their work - and helped palliative and end of life care practices become a part of day to day healthcare in the UK.

While hospices have succeeded in changing the landscape of care for people living with a life-limiting illness, they now face different issues. Today, many hospices are confronted by major financial challenges, in large part due to the way they are funded. And these troubles even began to creep in during the final years of Cicely’s life. Clark recalls Cicely reflecting on the issues hospices were beginning to face. She would often tell him that she’d had “the golden years, when everything was expanding”. Cicely’s ideas were new and exciting: in her later career she would often be “knocking on doors that were already ajar and finding a welcome audience”.

In the past few decades, hospices have begun to struggle with problems of scale and sustainability. The hospice sector has grown a lot since the 1960s, but the majority of hospices are still independent charities. This means that, on average, most hospices receive around one third of their funding from the state, and the rest of their costs must be subsidised by fundraising, grants and commercial ventures. It is becoming increasingly difficult to fund hospice services under this model, as running costs rise and the public have less disposable income to spare.

This, in turn, has a knock-on effect on the ability of hospices to provide their services. In recent months, financial pressures have started to reach breaking point, with some hospices having to close inpatient beds and make staff redundant. 

The future of hospice care

Nobody can see into the future, but its clear that financial sustainability is key to hospices' survival. Hospice UK is working with sector stakeholders to find solutions to the current funding crisis. We're urging the Government to meet with us to discuss these solutions and agree on a sustainable funding model that works for hospices across the UK.

But while we are primarily focused on ensuring that hospices in the UK can thrive, the wider hospice sector expands far beyond this country. Ruminating on the future of hospice care around the world, Professor Clark echoed a sentiment he has seen a lot on his travels: “We lose sight of Cicely at our peril. We must continue to nurture her ideas and her legacy”.

‘Cicely and David’: a play

During retirement, Professor Clark’s time has been occupied by writing and producing a play about Cicely Saunders. Its focal point is the relationship between Cicely and David Tasma – the patient at St Thomas’ Hospital who left her some money to start a new hospice. 

After dedicating considerable energy to exploring Cicely’s achievements, Professor Clark often thought that her life story would make a fantastic film. But the cost and time to produce one made it unfeasible. It is thanks to Professor Clark’s wife, who suggested that he could write a play instead, that ‘Cicely and David’ was born. 

Clark teamed up with Jo Hockley, who had worked with Cicely as a nurse at St Christopher’s, but also had experience working in theatre. Together they refined a script and prepared the play for entry to the 2022 Edinburgh Fringe festival. It was a big success at the festival and has since been showcased at palliative care conferences around the world. 

If you’re interested in watching 'Cicely and David’, you can catch a showing at our National Conference in November this year. And if you just can’t wait, you can request to view a recording  from Professor Clark directly. It’s a great way to get a small peek into the early days of modern hospice care, and learn how David Tasma helped to shape Cicely’s vision.

Header image credit: Derek Bayes, St Christopher's