Throughout the summer of 2012, Chrissie Giles spent time at the day hospice at Princess Alice Hospice, Esher, running a creative writing group. In a series of posts accompanying our exhibition Death: A self-portrait, she reflects on her experiences there and showcases some of the writing produced by group members.
“You want to hear stories of my life?” one woman asked. “Most of them are X-rated.”
It wasn’t the first thing I was expecting to hear when I walked into the day hospice, but then, what did I expect? If I’d ever been in a hospice before I didn’t remember – and it doesn’t seem like the kind of thing you’d forget.
I’d come to the Princess Alice Hospice in Esher to discuss setting up a creative writing group. Two things in particular stick in my mind from that first visit: how warm it was inside and that everyone greeted each other by name.
The plan was to work with a group from the day hospice. This part of Princess Alice Hospice opens four days a week and gives day patients the chance to come in and socialise, relax, get creative and have some complementary therapy. The nurses see each patient to make sure their symptoms are under control. Chaplaincy and social work staff offer spiritual, psychological and emotional support. More than once someone snuck into the writing group a little late, blaming a conversation about a walking frame or shower seat, or shiny-handed and fragrant from a massage.
We met for an hour once a week, with a couple of unscheduled breaks, over the summer of 2012. In a series of blog posts following this one, I’ve recorded some of the more memorable experiences of my time in the day hospice. Unless stated otherwise, names have not been changed, as requested by the group members.
“We’re all dying, but unlike the people here, we don’t have a stick in the sand.” Dr Craig Gannon, Deputy Medical Director
It’s striking when you spend time with people living with a life-limiting (terminal) illness how fluid ‘normal’ is. Things get turned on their head, and patients, their families and friends find themselves regularly reappraising who they are, what do they do, and how they fit. At the hospice, I constantly found myself wondering how I’d cope in a similar situation.
Most of us live with what is essentially a functional denial of death, allowing us to exist with the knowledge that no one lives forever while ignoring the fact that death will happen to us and everyone we love.
Given a diagnosis of a disease that will prrobably end your life, everything changes. One carer said, on hearing her husband’s cancer diagnosis, “It’s the end of life as we know it”. In those few seconds, life is immediately, permanently and often terribly different, and you have no choice but to live with a ‘new normal’.
Days and weeks become punctuated with hospital appointments: chemo, radiotherapy, physiotherapy, nutrition, counselling; visits from the district nurse and community nurse; trips to the pharmacy. Everyday tasks can become exhausting. The things you do for pleasure may be more difficult or even impossible now. Can you still drive? Can you still work? Can you be left alone for extended periods of time? How do you relate to your loved ones now? How do you relate to yourself?
“It’s not just preparing you to die – that’s part of it – but also about preparing for the best.” Dr Craig Gannon, Deputy Medical Director
Hospices provide holistic, palliative care for patients and their families. There is no consensus on a precise definition, but ‘holistic’ is taken to mean an approach that treats the patient as a whole person. Aspects of hospice care therefore include the control of symptoms and pain, psychological, social and spiritual care, help to stay independent, complementary therapies, financial advice, and bereavement support. ‘Palliative’ refers to an approach that aims to prevent and relieve suffering, in this context, towards the end of life.
There are 28 beds at Princess Alice Hospice. These are used to provide terminal care – that is, up until a person dies. People are admitted for other reasons, too: for help with controlling their symptoms, rehabilitation (such as physiotherapy or occupational therapy), respite care (to give them and their carers a break) and psychosocial crisis (or “scoop and rescue”, as one member of staff neatly phrased it), when a patient needs to be moved out of their home situation urgently because of – for example – family issues.
Some 80 per cent of the patients served by the hospice have cancer. The remaining patients have other chronic conditions, including degenerative neurological disorders like motor neurone disease, Parkinson’s disease and dementia.
Hospice support is not restricted to those who are thought to have only months or weeks to live. Day hospice, hospice-at-home and specialist community nurses support patients and families following diagnosis. The community Princess Alice Nurses care for over 800 patients at any one time, offering specialist care management, symptom control, practical advice and emotional support, seven days a week.
“We’re looking after living patients, so we want them to do more living,” says Dr Craig Gannon, Deputy Medical Director at Princess Alice Hospice.
In other words, hospices are more than places to die.
“If we stop listening to people, then we’re doomed.” Andrew Knight, Director of In-patient Services, Quality and Evaluation
Hospices in the UK care for 250 000 people every year. Those helped by them have one woman in particular to thank: Cicely Saunders, founder of the modern hospice movement. Saunders qualified as a nurse, then a medical social worker and then a doctor. She worked closely with patients suffering terminal illnesses and built up a new philosophy around caring for the dying.
She pioneered research into the use of opioids to treat cancer pain, something that was not widespread at the time, partly because of fears of triggering addiction and euphoria in patients.
She emphasised the importance of treating the patient as a whole person. She urged doctors to work in a team to support patients and their families to the end of life and beyond, to bring relief and provide support. She founded the first modern hospice, St Christopher’s, in London in 1967, where she died in 2005.
“Cicely Saunders would thump the table about listening to the patient and how keeping them at the centre means you can’t go wrong,” says Andrew Knight, Director of In-patient Services, Quality and Evaluation at Princess Alice Hospice, “but we need to remember this. As we’ve grown up as a speciality we’ve become more professional; we sometimes forget to listen to what the patient wants to tell us.”
Patients want and expect to give feedback, he says, and to see that if they had comments, they could get things changed. “We’ve introduced SKIPP – a new patient outcome tool – to see how patients are, how they were, has hospice made a difference? People tell you things that are really humbling.”
“Everyone has the same feelings about their disease. Everyone thinks about their parents and feels sorry for their children.” Day hospice writing group member
From the first writing group, it was clear that frustration plays a massive part in the lives of people given terminal diagnoses. Frustration at loved ones’ avoidance of conversations that the patients want and need to have with them, frustration at having to live with a failing body, and frustration at the bureaucracy of medicine – the appointment that clashes with a holiday, travelling by public transport for over an hour for a lung function test that takes just five minutes.
On top of this, the annoyances, obligations and worries that drain energy from all of us are still present. One woman has damp in her flat, which her landlord is not attending to. Another worries about her relationship with her estranged son. Another has not seen her grandchildren since before Christmas.
Sometimes it’s only when a person mentions their decision to stop having chemo, or their worries about whether to be buried or cremated, that you remember where you are.
Across the day room, there’s a cluster of laughing. “What’s the joke?” someone asks. “Her toe’s itching,” says Margaret, cocking her head in her neighbour’s direction. We look at her neighbour, who’s nodding in an exasperated way – her leg is amputated below the knee.
The hospice didn’t feel like a sad place. Terrible, traumatising, painful things happen there, but there’s something comforting about knowing that if these things have to happen anywhere, they will do so in a place that not only anticipates them, but also exists – at least in part – precisely because of them.
And while I may not have got to hear any X-rated stories in the end, the candid and open spirit of that woman’s response was typical of every member of the group. No matter what was happening to them, each person listened, wrote and shared something with everyone else there. I am humbled by the humour, energy and time these people put into the hour we spent together every week, especially when you realise that they are living lives in which those things may be in very short supply.
Chrissie Giles is a senior editor at the Wellcome Trust. We would like to thank staff, volunteers, patients and families for their openness and support. See more information on Princess Alice Hospiceand hospice care in the UK. Thanks also to Gillie Bolton for her advice and her invaluable book, Write Yourself (Jessica Kingsley Publishers). For more on Dame Cicely Saunders, see the St Christopher’s site. Our exhibition ‘Death: A Self-portrait‘ is open until 24 February 2013.