Her grit and remarkable vision framed the acceptance of palliative care in modern medicine, while her compassion shaped the way we understand and control pain. These achievements in Great Britain have since given rise to a global movement, but it faces a myriad of challenges ahead. How will the next chapter of its story read?Take a closer look →
In the 2015 Quality of Death Index we commissioned, the UK has consistently paved the way in developing palliative care standards. It topped a list of 80 countries owing to comprehensive national policies, the extensive integration of palliative care into its National Health Service and a strong hospice movement. But in light of these achievements and changing demographics, there is a consensus that the way forward lies in active community engagement, the de-medicalisation of care and an inclusive, radical approach to drive cross-disciplinary innovations in care.
To commemorate 50 years of the modern hospice movement, the Lien Foundation seeks to reaffirm the pioneering spirit of Dame Cicely Saunders by exploring the state of palliative care in the UK today and creatively inspire those taking steps in new frontiers. We extend our gratitude to partners who took time to be a part of this project.
The Lien Foundation is a Singapore philanthropic house noted for its model of radical philanthropy. It invests in innovative solutions, convenes strategic partnerships and catalyses action on social and environmental challenges. The Foundation seeks to foster exemplary early childhood education, excellence in eldercare and effective environmental sustainability in water and sanitation. In the sphere of eldercare, the Foundation enhances palliative care leadership and capacity in developing countries through the Lien Collaborative For Palliative Care with the Asia Pacific Hospice and Palliative Care Network. It commissioned the first-ever global Quality of Death Index in 2010 and 2015 and Life Before Death, an initiative to create greater awareness about end-of-life issues.
NESTLED at the heart of three valleys, Todmorden is a charming market town in West Yorkshire home to 16,000 people. It was once known for its vast cotton mills during the industrial revolution, which have given way to community vegetable plots dotted across town as part of an urban gardening movement. Signs that spell the word “KINDNESS” are placed in strategic parts of the town against its jaw-dropping scenery.
In the last few years, the town has made waves for another kind of community-led revolution.
Pushing Up Daisies (PUD) is a homegrown festival inspiring people to talk about death, dying and bereavement. Entirely volunteer-run with no government funding, it is a striking example of a compassionate community, where citizens lead the way in promoting wellbeing at the end of life.
The festival caught national attention after winning the national Dying Matters Awareness Initiative of the Year Award in 2016 for its sincere, fun ways of stirring conversation. This year, it featured over 70 free events like graveyard tours, a fancy dress competition, a gospel choir performance in a church with cosy blankets and even workshops that teach people how to cry.
From initial ideas over tea, its organisers sounded out a few other locals and soon enough, the whole town was buzzing with ideas and offering to contribute in any way possible. Although some of the sessions were deeply personal, people felt safe talking about their grief in public. Spin-off groups for communities like men, or those affected by suicide were set up so people could support each other throughout the year.
Mary Clear, 62, an activist, said: “When people are creating art together, it’s easier to talk because you’re side by side in an intimate group,” She is part of the formidable trio behind Pushing Up Daises along with counsellor Hannah Merriman, 40 and Sue Robinson, 57, a palliative care nurse. They met while training to be end-of-life companions – or death doulas – and found a ‘massive problem’ in how death, dying and bereavement were portrayed in British culture.
“The only realistic response we had was to create a space for conversations,” said Merriman. “We’d like all this stuff to be easier, kinder, more communal and not just in the hands of professionals.”
Volunteers are the heart and soul of Pushing Up Daisies. They come from all walks of life and are on hand to have conversations with anyone about death, dying and bereavement.
History is most meaningful when people can relate to it, so I offer graveyard walks to share stories and help others think about what’s going to happen to them at the end of life.
Raising public understanding about death, dying and bereavement is key for the UK’s National Council for Palliative Care (NCPC). In 2009, it set up the Dying Matters Coalition, which has since grown to some 32,000 members who organise programmes all year round. These events culminate annually in Dying Matters Awareness Week in May, an ‘unparalleled opportunity’ to place these issues on the national agenda.
Dying Matters also provides educational material including guides to host events, case studies, communications training for GPs, health and social professionals and school lesson plans for teachers and students.
Claire Henry, Director of Improvement and Transformation at Hospice UK, a national charity comprising of more than 220 hospices said: “As a society we are not very good at talking about death. We started to have that public conversation and now we want to translate it into action.”
Harnessing the power of community is the way forward to sustain such top-down efforts, according to Professor Allan Kellehear, a medical and public health sociologist at University of Bradford. Prof Kellehear says that it’s not the dying or the bereavement that affects people day-to-day, but the loneliness, anxiety and social isolation along the way. The good news? These are preventable.
He advocates for compassionate communities, where everyone – regardless of whether you’re a local grocer, librarian, neighbour, volunteer or a friend – can have a role to play in promoting health and wellbeing at the end of life. Such communities can take shape in many forms including those led by formal organisations like hospices, schools and workplaces or informal networks among individuals.
“Being able to broaden the remit of palliative care services and having community partnerships is the only way we can address the inequalities around access and quality of care in poor areas of the country and among marginalised groups,” he said.
For instance, Severn Hospice in Shrewsbury, a town in the West Midlands of England with a population of 72,000, mobilises volunteers across the county to befriend patients with long-term illnesses and prevent them from being socially isolated. Future Matters, a community-based solution based out of Islington in London, works through trained volunteers who have one-to-one appointments with members of the public to write out their advance care plans, chat about legal issues and discuss their attitudes to death and dying.
Then there are community groups like Murray Hall Community Trust, a health and wellbeing charity which started providing palliative supportive care more than 15 years ago in Sandwell, West Midlands. The borough, which has a population of about 300,000, is one of the poorest districts in England grappling with issues of unemployment, poverty, teenage pregnancy and low life expectancy.
Sandwell also has no inpatient hospice, so community groups take the lead to work alongside clinical support services to ensure a continuity of care.
Its chief executive officer, Manjula Patel, describes her work as helping vulnerable people make a come back into the community. It adopts an approach that includes raising awareness, increasing the capacity of other community groups to reduce isolation of older people and educating individuals at the end-of-life on utilising their social networks.
Her team has worked with more than 30 groups – including a gardening community and walking group – to improve their ability to provide support around death, dying and bereavement. “There’s a lot we can do in incorporating compassionate communities in existing services and encouraging service providers to extend their reach to the very end of life.”
The charity started a “Mickies’ Bickies and Brew” group at a local high school, where seniors who live alone meet over knitting, coffee and biscuits every Monday morning. Carol Annetts, 63, is the group’s volunteer coordinator and was motivated to come to the sessions because she was lonely. “Groups like these help the seniors a lot. They have something to leave the house for.”
Vera Round, 80, a Sandwell resident, has done crafts, made jewellery, discussed history with the school’s students and attended educational talks on topics like the safe usage of gas and electricity at home. “When you live alone you can do hours and hours and not speak to anyone.” she said. “We look forward to Monday mornings, we really do.”
Having someone call you on the phone or bring you a cup of tea might be the difference to your day.
In the lead up to this milestone moment, Dame Cicely and her collaborators spent a decade actively writing, teaching and advocating for hospice care ideas. In her lifetime, she wrote an estimated 234 papers says Professor David Clark, who has documented her life and work since 1995.
The National Health Service was created in 1948 with a mandate to provide cradle-to-grave services. However, in the tumultuous post-war years, there were many pressing issues – such as malnutrition and polio – and little attention to end-of-life care. Eventually, reports in the 1950s, which painted a grim social picture of the conditions encountered by dying people, paved the way for developing terminal care – and Dame Cicely’s work.
In 1947, she met and cared for David Tasma, a waiter from Poland who was dying of cancer. Their life-changing conversations helped her experience the need the dying have to be loved and understood. His death prompted her to become a doctor.
Dame Cicely then worked at St Joseph’s Hospice for seven years researching pain control. This was where she honed her clinical skills and approaches, writes Prof Clark, who leads the Glasgow End of Life Studies Group. “She combined the warmth and solicitude of the hospice with a new realism about the value of narcotic drugs and also listened carefully to patients to learn about their suffering.”
St Christopher’s would be the modern world’s first hospice linking expert pain and symptom control, compassionate care, educational and clinical research.
From her conversations with patients, Dame Cicely also came up with the idea of “total pain”, which is the suffering that encompasses all of an individual’s physical, psychological, social, spiritual and practical struggles. This was a major breakthrough where professionals needed to consider each of these aspects to control pain. Her view was that the patient and family was to be seen as a singular unit of care.
“It entered the fabric of daily life at the hospice, becoming a defining feature of its philosophy and approach,” said Prof Clark.
Key to the rise of palliative care was this growing recognition of suffering as a complex, multi-dimensional phenomenon, along with an increase in medical literature on the care of dying people and an emerging view of the importance of dying with dignity.
Dame Cicely rode on the media’s growing fascination with St Christopher’s. Her sharp and charming personality shone through on TV interviews and spread awareness around the world of the enormous potential palliative care had to change the experience of death.
Her work inspired countless others like Dr Robert Twycross, who in 1971 was appointed as a Clinical Research Fellow at St Christopher’s Hospice, where he studied and simplified the treatment of pain. He is largely regarded as a pioneer of the hospice movement in the 1970s and helped palliative care gain acceptance in modern medicine.
Dr Balfour Mount, a Canadian surgeon who is considered the father of palliative care in North America and coined the term “palliative care”, visited St Christopher’s Hospice in 1973 at Dame Cicely’s invitation. He transplanted what he learnt and created a similar ward at the Royal Victoria Hospital in Montreal, which was a major breakthrough.
In an interview with Palliative Care McGill, Dr Mount described Dame Cicely as a one-person team who assembled a “galaxy of superstars” at St Christopher’s. Her concept of “total pain” is an enduring contribution, he said.
“She was a very strong leader, a clear thinker, discerning and had a good sense of humour,” said Dr Mount. “Her other remarkable advantage was that she started out as a nurse and then became a social worker and then, so that she could fulfill her dream, she went to medical school and became a physician. This gave her a broad experience with the whole person needs of both patient and family.”
For her, a hospice was much more than the care it delivered. It had a powerful civilising role within society.
WHEN Judea Bogle, 45, met Joy Kahumbu, 57, for the first time at a pub for drinks, she was pleasantly surprised it felt more like a catch up with a long lost friend. It had been a while since Boyle had a night out. The fashion illustrator has Multiple myeloma, a type of bone marrow cancer that causes bone pain or fractures.
Other times, they have painted, discussed art over coffee and celebrated birthdays together. Both women met at St Joseph’s Hospice where Bogle goes regularly for pain treatment and Kahumbu works as a project coordinator. They were paired through the hospice’s Compassionate Neighbours programme.
Described as a social movement, Compassionate Neighbours goes beyond traditional befriending schemes to match volunteers and people living with a long-term or terminal illness in East London and turn communities into more compassionate places. Since its pilot at St Joseph’s, the programme has received significant funding to replicate in hospices across London. Its goal: To create a city-wide network of volunteers.
Bogle describes it as a natural friendship because of their similar interests. The fact that both of them were lesbian meant Kahumbu was comfortable visiting her at home, where she lives with her partner. Prior to her illness, she was often out at parties and led a very sociable life. Losing six inches of height ate away her confidence.
“My illness made me extremely isolated and vulnerable,” she said. “Spending time with Joy is bringing some of the old me back.”
Volunteers – who are known as ‘neighbours’ – live in the same borough and come from culturally similar backgrounds. They undergo a programme that involves monthly practice development meetings and training in topics like dementia to prepare them for their roles.
During each training session, they role play to develop support among each other and learn topics like active listening and self-care to allay their fears working with vulnerable people. There are currently about 200 volunteers from all walks of life. The youngest is 24 while the oldest is 86 years old.
‘Neighbours’ then take these values out into the community by hosting events such as street parties and social events in sheltered housing venues. They talk to strangers on community and neighbourliness and refer individuals who would not normally approach the hospice to sign up for the programme.
Carly Attridge, Head of Volunteering, St Joseph’s Hospice said: "In a way, Compassionate Neighbours act as foot-soldiers for the modern palliative care movement as well as their local hospice."
Retiree Kathy Parker, 71, had a range of concerns, from whether she had to talk about religion to if she was required to physically assist and do heavy lifting. These concerns were addressed through group discussions. Now, most of her visits are spent simply watching the news together or reading the papers with the person she is partnered with.
“Until you knock on the person’s door, you have no idea how they’re feeling and what they want to do,” she said. Parker has also learnt over time to be more subtle in helping others make decisions. She said it is very important volunteers do not go with a superiority or saviour complex.
“This is not charity,” she said. “It’s about coming together to build a social structure everyone can be a part of.”
‘Hospes’, a latin word that relates to hospitality, or the idea of treating a stranger as a guest, is the root of the words “hospice” and “hospital”. But even though its has been 50 years since Dame Cicely Saunders pioneered the modern hospice care movement, both institutions are still struggling to fulfil their potential in caring for those at the end of life.
Care Quality Commission, an independent regulator of health and adult social care in England, found that over 90 per cent of hospices inspected have been rated as good or outstanding. However, minority groups, people with illnesses other than cancer and those living in poverty did not have the same access to quality end-of-life care as others.
Barriers faced by these groups included a lack of awareness of options available, poor communication between health professionals and patients and the stigma of planning for one’s final days. Those from learning-disabled and minority communities further experienced cultural and language barriers, which exacerbated the emotional stress faced by their families.
In another report released in 2016 where Care Quality Commission rated 176 hospitals, it found that more than four in 10 hospitals offer poor care for the dying. Only eight hospitals were rated outstanding.
Dying without Dignity, a report published by the Parliamentary and Health Service Ombudsman in 2015, observed poor end-of-life care in hospitals with the potential to improve the experience for about 355,000 people. It highlighted that staff were not recognising that people were close to death and not responding to their needs, poor symptom control which resulted in people watching their loved ones die in pain or agitation and poor communication between caregivers and healthcare professionals.
Dr Ros Taylor, formerly of Hospice UK and Dr Sharon Chadwick of the Hospice of St Francis and West Hertfordshire Hospitals NHS Trust wrote in an editorial that “society remains anxious about death, convinced of immortality and has developed huge expectations about the power of doctors and unlimited medicine.”
They recommend hospitals to learn from hospices, encourage stronger partnerships between palliative care and elderly teams and to tap on volunteer resources to improve the experience in hospitals for families and caregivers.
For example, “Hospice Friendly Hospitals” a programme by the Irish Hospice Foundation currently in its 10th year, seeks to ensure end-of-life care is central to the everyday business of hospitals. It coordinates networks for hospital staff to promote improvements, develops educational resources and advocates for investment in palliative services in hospitals and across the country.
Kings Volunteers is a volunteering scheme at King’s College Hospital that boasts 1,700 volunteers across its three main hospital sites who undertake a variety of roles to complement staff. It has even expanded into the community through initiatives like ‘Hospital to Home’, where volunteers help patients settle in at home after being hospitalised for a long time.
The authors wrote: “Palliative care in hospitals needs to transform not only with new models but new attitudes. Conversations are critical to opening up possibilities for the future.”
Ian Dewar, Site Chaplain at the Royal Lancaster Infirmary, who has a background in palliative care, wants medics to rethink what death and dying mean to them. Since 2016, he has led #MyLastOrders, a series of death cafes in local coffee shops. Over 300 healthcare workers including doctors, nurses, palliative care professionals and volunteers, have joined the talks.
“The reason we don’t talk is that we make everything professional,” he said. “There must be emotional issues our doctors and nurses have and I just wanted to create space for them.”
Society remains anxious about death, convinced of immortality and has developed huge expectations about the power of doctors and unlimited medicine
THERE is a buzz in the air as the crowd trickles in at The Royal Society of Medicine in London, where close to 300 palliative care professionals are gathered to discuss radical change needed to map out the future of dying.
The morning’s guest speaker, Dr B.J. Miller, an Assistant Professor of Clinical Medicine at the University of California, San Francisco Medical Centre, shares his vision of empathic palliative care in the face of evolving challenges in the field. Dr Miller’s 2015 TED talk “What really matters at the end of life” was one of that year’s most viewed talks, where he drew on his own experience as a physician and triple amputee to pioneer new models of palliative care.
We’re never going to train enough doctors to do the work,”
He urged the audience to look at dying not just as a medical event but as a universally shared life experience. The onus was on them to constantly think creatively and analyse their actions so they don’t fall into a ritual of the everyday.
Another enormous piece of the future, he said, lies in public engagement where palliative care opens its doors to other fields. It needs a civic orientation, one where communities take pride in issues of ageing and dying, to thrive.
“We’re never going to train enough doctors to do the work,” he said. “We need lawyers, philosophers, architects and different minds coming together to shine some light on the subject.”
Ivor Williams, a Senior Design Associate at Helix Centre, observes “a strange ownership” that the medical world has over death. Helix Centre is a multi-disciplinary design studio based inside St Mary’s Hospital in London. The studio designs innovative solutions like an online advance care planning platform based on input from patients and clinicians.
“Death includes many interconnecting disciplines,” he said. “Understanding the needs of people through design can balance the clinical with the psychological, philosophical and religious and figure a way out.”
Despite being ranked best in the world in the 2015 Quality of Death Index for its strong national policies, integration of palliative care within its National Healthcare System and strength of the hospice sector, more must be done so hospices don’t remain heaven for the few.
Former palliative care nurse Hermione Elliot set up Living Well Dying Well, an organisation to train non-medical professionals to be “death doulas” or companions with the dying. She passionately believes that as sophisticated palliative care is in the UK, there is just as much value in slowing things down.
“We’re incredibly fortunate in this country when there are places around the world with no palliative care”, she said. “But we have handed death over to health professionals and funeral directors, so people are less capable practically and emotionally to know what to do when somebody is dying.”
Rapid ageing is expected to cause a massive 42 per cent surge in the annual need for palliative care in the UK by 2040, according to research by the Cicely Saunders Institute.
In 2015, the National Palliative and End of Life Care partnership published a national framework of ambitions and resources to improve the state of care. These address the over-medicalisation of dying and share know-hows to guide individuals and organisations towards achieving ambitions like coordinated care and a helpful community.
Dr Heather Richardson, Joint CEO of St Christopher’s Hospice says palliative care professionals must go back to the heart of what people want. “If we can work to that agenda then we start to have care that’s coordinated, not around what the system thinks they should be receiving.”
In light of the hospice movement’s 50th anniversary, Claire Henry, Director of Improvement and Transformation, Hospice UK, says practitioners must build upon the massive changes in the system over the last five decades.
In the near future, projects that embrace technology and partnerships like The Gold Line, a 24/7 hotline manned by nurses in Yorkshire to coordinate services for patients and Project ECHO, a knowledge-sharing network that relies on video-conferencing, will pave the way forward.
Others like St Catherine’s Hospice’s integrated heart failure-palliative care service, run by a team that includes cardiologists and consultant palliative physicians, supports people with advanced conditions other than cancer. Interdisciplinary approaches like rehabilitative palliative care will allow people who are frail and living with chronic illnesses to self-manage and live as independently as possible in a cost-effective way.
“We need to be really creative about how we work together,” said Henry. “So we can have all the support we need when it’s our time to die.”
What are some of the projects across the UK that suggest the future of end-of-life care?
Going beyond traditional befriending schemes, this social movement by St Joseph’s Hospice trains volunteers to be advocates of the hospice, with the aim of turning communities into more compassionate places to live and die in.
Drawing on the expertise of hospice professionals, this first-of-its-kind web seminar programme by Hospice UK offers resources to help leaders in hospices and their teams build resilience and flourish in stressful times.
A joint collaboration between Imperial College London and the Royal College of Art where a multi-disciplinary team is placed on the frontline of healthcare inside a hospital. It focusses on design methods to prototype solutions. The team has spun out a startup called Digital Care Planning to deliver transformational care plans for people with life-limiting illnesses and is designing the ‘hospice of the future’.
A coordination service by St Christopher’s Hospice to help patients with advanced illness or frailty remain at home as they receive care through 24-hour telephone advice from community staff nurses, who take on the roles of key workers. This rapid response helps prevent hospital admissions. Bromley has one of the highest number of older people in London and faces a unique challenge in meeting the end-of-life needs of its ageing population. The project will continue to work with geriatricians to explore rehabilitative and mental health services.
Originally developed as a way of ‘democratising medical knowledge’ and improving access to palliative care delivery in rural areas, Project ECHO successfully piloted through Northern Ireland Hospice and is set to scale up across UK. It involves the use of videoconferencing technology led by specialist teams who train primary care clinicians to care for people with complex health conditions.
A palliative care outcomes measures resource pack for hospices and hospitals which includes training videos, scoring sheets and a guide to implement outcome measures into routine clinical practice. This helps them better communicate the positive difference they make for patients and families.
Doctors can monitor multiple patients from one remote setting and guide community nurses in the patient’s home through tablet computers and software.St Luke’s Hospice in Sheffield is the only British palliative care centre taking part in this pioneering international project aimed at providing cost-efficient and effective end-of-life care for patients in their own homes.
With more than a million Dementia friends and more than 10,000 trained ambassadors, Alzheimer’s Society’s Dementia Friends programme is the biggest ever initiative to transform the way the nation understands dementia. It is set to affect over a million people in the UK by 2025 and is a growing challenge for end-of-life care professionals due to its complications, as persons with dementia often are unable to communicate verbally.
A quality-improvement programme working with 10 acute Hospital Trusts across the UK to develop new areas of focus for improving end-of-life care in hospitals. It will build on enablers like advance care planning for a better care experience in hospitals.
Breathlessness is one of the most common symptoms affecting patients. It impairs their daily living and is a frequent cause of hospital admissions. This service involves outpatient clinic services to the Cicely Saunders Institute, access to respiratory and palliative care physicians, social workers and support material like a handheld fan.