The Voices that Shaped Us:
Modern Hospice in the Making
The work
The work
‘You matter because you are you’
One of the central beliefs at St Christopher’s has always been the importance of the individual – as a person, not just a patient.
Cicely Saunders championed better care for dying people by talking about her holistic idea of ‘total pain’ in which pain is not just physical but also psychological, social and spiritual.
‘Total pain’ gave staff an internal checklist to make sure they addressed all aspects of a patient’s suffering. But it was also a way of recognising that each patient is a unique person with their own experiences and relationships.
Responding to a person’s ‘total pain’ involves pain and symptom management, but also care and companionship, from sharing stories to organising birthday parties.
Saunders hoped that doctors, nurses, social workers and chaplains would work together at St Christopher’s in multidisciplinary teams, sharing expertise and meeting the needs of each patient.
‘Total pain’ is now a term recognised by hospice and palliative care professionals across the world.
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She spoke not only of the effect of the illness on the patient but on their family, their hopes, fears, career, FINANCES AND faith.
Dr Valerie Rowe, Former Registrar, St Christopher’s Hospice
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Quite quickly understanding that nursing could develop and be something that was really respected as a speciality I think. So actually, seeing how senior nurses operated, they had autonomy, that it wasn’t subservient, that everybody had respect for everybody’s profession. And I think that’s always attracted me that actually everybody has a contribution to that patient.
Anne Nash, Consultant Nurse, St Christopher’s Hospice
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Pretty well straight away I felt in ward rounds and discussing with doctors, everybody was very open to suggestions. This sense of non-hierarchical working which I always think is so powerful at St Christopher’s. The feeling that everybody mattered in the team. So, you could start to express opinions and views and wonder out loud if certain things could be done to enhance life more.
Jenny Taylor, Former Senior Physiotherapist, St Christopher’s Hospice
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I think the NHS has learned a lot from what Cicely stood for about the importance of the individual, that they’re not just a curiosity for a ward round.
David Praill, Former Chief Executive, Hospice UK
Ward life
Life on the wards in the early years of St Christopher’s was defined by giving patients time and attention.
St Christopher’s tried to be a home from home with a friendly, relaxed atmosphere and few limitations on visiting hours.
Staff and volunteers were encouraged to spend time with patients, listening to their stories and getting to know them, and talking openly about their social and spiritual worries as well as their medical issues.
Spiritual care and chaplaincy have always been important at St Christopher’s. Until the 1990s, daily Christian prayers were said on the ward and morning prayers were held in the chapel.
Life on the wards also included all the normal chatting, gossip and jokes – there was even a drinks trolley.
As expertise grew, we increasingly offered other services such as legal and financial advice, physiotherapy, arts therapies, and hairdressing.
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one time we had somebody from a large circus family and we had an elephant in the car park come and see him.
Laura Bechelet, Welfare Officer, St Christopher’s Hospice
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Other people would have their animals visiting, one time we had somebody from a large circus family and we had an elephant in the car park come and see him. In the nursery we used to have two large Burmese mountain dogs that pulled a little cart around the gardens and would take the kids for rides.
Laura Bechelet, Welfare Officer, St Christopher’s Hospice
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One of the patients that I met was a lady called Mrs Medhurst, I have a feeling she was one of the first people here, I’m not sure but I think she was. She was the one that I went up with the trolley and I said “A cup of tea?” and she said “Yes and I’ll have five grains of sugar”. And I looked her and I said “Oh my god how am I going to count five grains of sugar?”. The rest all burst out laughing and they said “she’s only pulling your leg”. And that was it, that was the friendships that I made and that rapport with the patients carried on and I thoroughly enjoyed it.
Mavis Bird, Former Auxiliary Nurse, St Christopher’s Hospice
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There was laughing, painting, somebody playing a piano. It was lively, it was the complete opposite of what I expected.
Elizabeth Kwesiga, Social Worker, St Christopher’s Hospice
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Certainly, the first big celebration was when Dr Saunders, as she was, invited the Queen to come for the 21st anniversary of the opening. So that was in the summer of 1988…I drilled my team that if they were going to wash their hair and have a clean uniform it was that day and not the day after and not the day before. I must have spent twice as long ironing my top and all our shoes were polished and we were all gleaming and it was just amazing. And of course, the buzz that the patients got, put them on a high for days. The fact that the Queen had stopped at their bed or with them in the day centre and they couldn’t quite get over it.
Betty O’Gorman, Former Superintendent Physiotherapist, St Christopher’s Hospice
Hospice beyond the walls
Staff at St Christopher’s pioneered the world’s first home-based hospice service in 1969.
A patient asked to be discharged, but when her pain couldn’t be managed, St Christopher’s had to reconsider what could be offered to patients who wanted to remain at home.
Home care meant that patients like her could stay in their own homes rather than coming to live in the hospice. It also cost around 75% less than in-patient care, meaning that many more people could be helped.
GP Mary Baines and nurse Barbara McNulty were tasked with establishing the service alongside local district nurses and GPs.
Initially, homecare was offered within a ten-mile radius of St Christopher’s. However, sometimes a nurse would break the rules and visit patients further afield. Once the service was established, each home care team helped around 80 patients at a time.
St Christopher’s new service was influential and home care is now the most common form of hospice care globally.
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a significant minority we cared for at home and it was exhausting, but I loved it.
Rosemary Burch, Former Clinical Nurse Specialist, St Christopher’s Hospice
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Home care actually started in 1969. A woman in her forties with breast cancer and bone secondaries and a great deal of pain from that, came into St Christopher’s for pain control. We controlled her pain quite well using a moderate dose of diamorphine, which was the pain killer we then used. Her pain was well controlled and she surprised everybody but amazed Cicely by saying something like this ‘I’m enormously grateful to St Christopher’s for everything they’ve done to help me and control my pain and I like here, but I’d actually rather be at home.’
Cicely was amazed at that, she had not really envisaged people much at home and she thought this lovely place she had built would be better than any home. But anyway, this woman was determined to go home, so I rang up and discussed her situation with the GP and drugs she was on and gave her supplies to last her ten days or so, waved her goodbye and off she went home. A week later we had a distressed phone call from her husband saying his wife was in agony, could she please come back straight away. It was then we realised what had happened, only then. The GP had gone around and was horrified by the dose of pain killer she was on, thought that we were turning his patient into an addict which was widely believed then and that he would not prescribe this dangerous drug…. It’s not a happy story because she lost her nerve, she never wanted to go home again, she stayed in St Christopher’s until she died here. And it was that episode that made Cicely say we must start homecare now.
Dr Mary Baines, Former Consultant, St Christopher’s Hospice
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Thinking back, it was that privilege of being in somebody’s home and being invited in and being trusted in that way and building up those relationships over time.
Anna Butt, Clinical Nurse Specialist, St Christopher’s Hospice
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The homecare was something that was at the heart of the hospice.
Mavis Bird, Former Auxiliary Nurse, St Christopher’s Hospice
Caring for the family
Family and friends are very important in the care of someone who is dying, and providing support to them is part of hospice care.
Consultant psychiatrist Dr Colin Murray Parkes was an expert in grief and bereavement having worked with families after the Aberfan disaster in 1966.
He used his role to establish a bereavement service. The service provided contact with loved-ones, and debriefing meetings for staff after each patient’s death, along with basic psychiatry training for nurses.
Staff were initially wary that a bereavement service might upset patients. In 1960s Britain, bereaved friends and relatives were expected to hide their grief and carry on with normal life.
However, the service was a success, partly because it recognised that dying not only affects someone with a terminal illness but also those close to them.
Bereavement services are now common and in 1999 St Christopher’s pioneered a dedicated children’s bereavement service, Candle.
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Mum died in the middle of the night … It’s horrible but to me where you want to be when that happens is the hospice.
Jane Murphy, Family Member & Volunteer
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It wasn’t unusual to phone up to make an appointment with somebody and the relative would say ‘you’re not to say where you’re from, not to talk about death’.
Anna Butt, Clinical Nurse Specialist, St Christopher’s Hospice
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I’d made it clear to Cicely when I first discussed the hospice with her, that I would like to use it as a test bed in which I could try out some of the implications of my research. I needed somewhere I could set up a model bereavement service. I was quite surprised when in the early days of St Christopher’s, we never had time to do it, or other people didn’t think it was a good thing to do. It would upset people, they were afraid that if we started talking to people about their bereavement, they might start crying. There was this sort of resistance to it. Cicely dealt with it by not dealing with it. She could have overridden the people who were objecting, she chose not to and it took two suicides to change. The first one was a patient, he had been referred from another hospital and threw himself out of an upstairs window within an hour of admission. He hadn’t even seen a doctor. And when I went later in the week, everybody wanted to talk about it.
DR Colin Murray Parkes, Former Consultant Psychiatrist, St Christopher’s Hospice
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If you’re working here you just have a whole different perspective on nursing, care of the dying, care of the family – I think that was the thing I loved, to see how the family were included and sort of brought on in their understanding of what was happening.
Anne Conway, Former Staff Nurse, St Christopher’s Hospice
‘It was a lighthouse’
By the 1980s, visitors came from around the world to witness the St Christopher’s approach and to study at the education centre.
We pioneered multi-professional teaching with expertise shared from across the hospice. This included nursing, medicine, social work and chaplaincy, as well as the importance of attending to unglamorous symptoms like constipation or bedsores.
Many visitors subsequently established services elsewhere, such as Florence Wald who founded the first hospice service outside the UK in 1974 in Connecticut, USA. Others, like Canadian doctor Balfour Mount, developed the field of palliative care by using hospice approaches within existing hospitals and healthcare systems.
By 1981, there were 58 in-patient hospice services and 32 homecare teams in the UK. Today services exist in over 115 different countries globally.
In 2001 St Christopher’s was awarded the prestigious Hilton Humanitarian Prize for changing medical and social attitudes towards dying people. It was presented to Cicely Saunders by Kofi Annan, Secretary General of the United Nations.
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St Christopher’s was important in a way that is much bigger than the service it runs in South East London. It was a lighthouse, people came from around the world.
David Praill, Former Chief Executive, Hospice UK
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I think the fact that St Christopher’s exists is like a lighthouse for many of us who work in this field. It provides us with a sense of safety, a sense of guidance, the sense that we are all part of St Christopher’s, we all belong in a sense. And the ethical and the moral guidance that St Christopher’s provided about how to well care for patients, I think remains quite fresh. The systems have changed, the complexity of care in the acute care environment and so on is different, but if I had to tell you the principles I employ for the care of the patients in a very sophisticated tertiary environment today are 100% a direct derivation from what St Christopher’s and Dame Cicely was teaching us.
I have a copy of a series of recommendations that Dame Cicely wrote on an airplane on the way to north America to give some talks about constipation. It’s kind of a funny little paragraph but the idea is she was emphasising constipation as an enormous value, almost as a moral value. You have to pay attention to the bowels because people feel miserable if you don’t pay attention to something such as the bowels. So, I have it in our work room area for everybody, for the new generations of fellows and residents to see.
Dr Eduardo Bruera, Palliative Care Consultant, USA
Killing the Brompton Cocktail
From the beginning, St Christopher’s began building an evidence base for hospice care through a programme of cutting-edge research and teaching.
The hospice was established outside the NHS so had greater freedom to experiment and innovate. For example, in the 1970s, researcher Dr Robert Twycross conducted trials of cancer pain medication.
Previously, terminal cancer patients were often given the ‘Brompton Cocktail’, a mixture of drugs containing morphine, syrup, gin, cannabis and cocaine.Twycross’ research proved morphine could be given as pain relief on its own without worrying that patients would become addicted.
From 1973, St Christopher’s established a formal education programme to disseminate research like Twycross’ alongside other aspects of good care. Unusually for the period, doctors and nurses often learnt alongside each other.
The pioneering research and education at St Christopher’s eventually led to the foundation of many more hospices and to palliative care becoming a medical specialty in 1987.
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in a sense we killed the Brompton cocktail. We said that morphine is ok, making it much easier in those countries where it was hard to get morphine because of the concerns about addiction.
Dr Robert Twycross, Former Clinical Research Fellow, St Christopher’s Hospice
In and of the community
St Christopher’s is more than bricks and mortar. It is part of a diverse community of people who benefit from it, contribute to it and support it.
Volunteering and fundraising have been key to this from the beginning, from securing funds for our building in the 1960s, to activities today like fun runs, lotteries and open days.
In 1986 the first St Christopher’s charity shop opened in West Wickham, taking us out on to the high street. We now have 22 shops, raising over £1m annually for essential hospice services.
Other services also rely on volunteers, including Caritas House, our day centre in Orpington. Volunteers often offer their time because family or friends have been cared for at St Christopher’s.
In 2009, the Anniversary Centre opened as a community space and café. Here families, friends, patients, volunteers and community members could spend time together. The Anniversary Centre also acts as a hub for a number of activities, from day-care services to creative and complementary therapies.
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one of the joys of it has been to open it up to all sorts of volunteers.
Aida Shoush, Welfare Officer, St Christopher’s Hospice
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I would have been about 16, 17, and the hospice had volunteers that came in. I was a young volunteer and I used to come on Sundays and I would be with a patient who needed a visitor or who needed someone to read to them or comb their hair. Whatever they wanted, it was about spending time with someone who was alone.
Annette Douglas, Former Volunteer
People would come to the Day Centre for example and have a day of activity: creative therapies, see the hairdresser, relaxation, a lovely lunch and talking to people, social workers, counselling. And then as part of their sessions we might say do you want to come and look at physiotherapy? Some would come along and just happen to notice it and say that looks really interesting, some would be referred very specifically. But always when they came through, we would then work on helping mobility and strength, function, balance that side of things. And then we would encourage family members, if they were around, to perhaps come and sit with us.
Jenny Taylor, Former Senior Physiotherapist, St Christopher’s Hospice
Also in this section:
The Voices that Shaped Us
Our exhibition tells the story of St Christopher’s Hospice using interviews with many of the people who have shaped our history
