GIVEN the choice, most of us would opt to die at home, or in a hospice. Only eight per cent of people expressly want to die in hospital, but statistics show that 54.8 per cent actually do — a figure that indicates not only the importance of end-of-life hospital care, but also the need for a conversation about the many issues surrounding death and dying.
The Revd Ian Dewar is full-time chaplain to the University Hospitals of Morecambe Bay Hospitals NHS Foundation Trust (UHMBT), where care for the dying and bereaved has been deemed outstanding by the Care Quality Commission (CQC). The Trust was rated inadequate in 2014, but inspectors have now rated it as “Good” overall, with “Outstanding” for end-of-life care.
Their report highlighted the combined efforts of the bereavement team, chaplaincy, and specialist palliative-care team to promote compassionate care. The introduction of Death Cafés — informal gatherings where people can talk comfortably over tea and cake about death and dying (Feature, 24 October 2014) — came in for high praise, especially in relation to how the cafés are helping hospital staff to communicate better with patients and relatives at the end of life.
The concept is based on the Café Mortel movement in Switzerland, and the first Death Café in Britain was set up by Jon Underwood in 2011. Feeling that people had lost control of one of the most significant events they would ever have to face, he wanted to raise awareness, and help people make the most of their finite lives. The movement spread, and some Death Cafés now use the Church of England’s pioneering GraveTalk material: 52 question cards that groups can use to start a conversation.
Death Cafés do just what it says on the tin, Mr Dewar says. A hospice chaplain for eight years before taking up his present post three years ago, he acknowledges that talking about death can be much easier in the hospice context, since the ethos of a hospital is to make people better.
“In a hospice, you have time. In an acute setting, it is very often either a meeting when people have just been delivered the bad news, or the call-out at the point where the bad news is reaching its conclusion,” he says. “In the first instance, sitting round the bed with the person, and family members, it’s OK to say: ‘I think the key question to keep in mind is: what will give you the best quality of life?’ People appreciate honesty and directness, if delivered sensitively.
“What you mustn’t do is bring out clichés and metaphors. Often the look on the face, or the words they use, will give you the clue you want. I try to open up the space and ask whether they’d like me to pray with the person; or, if the person is conscious, I might pray not an end-of-life prayer, but a prayer that they have the strength to face what lies before them.”
Older people can be resilient and honest about facing death, he says. “My gran had three jars on the mantelpiece: food money, rent money, and funeral money.” But death is a topic spoken about less and less in modern life. “In the Death Café, we’re trying to open the conversation. The way our psyche is at the moment, we have to break through the cultural barrier before we can do that.”
Death Cafés were trialled at Morecambe in early 2016, and were the main focus of the Trust’s Dying Matters week in May that year. By the end of 2016, they had also been extended to staff training and community groups.
Mr Dewar has held a Death Café with sixth-formers in a school; the GraveTalk material was used to promote conversations about death, dying, and funerals. The responses were profound, Mr Dewar says. “One boy said: ‘I’m thinking of joining the Army, and wonder whether I can actually [bring myself to] kill someone. I’m going to have to work all this out.’ Another commented: “You don’t often get the chance to talk about something, and not feel you have to give an answer at the end.”
Public engagement is a key lesson for end-of-life care, Mr Dewar suggests. “The difficulty when talking to patients is that it is mostly done in a professional context, and led by a professional; this is, by and large, unavoidable. But it presents a problem: how do you know what people think? How can you gauge what the ‘average’ non-clinical professional and the ‘average’ clinical professional may genuinely think, or feel, about death?”
Lisa Wynne, a ward manager at the Royal Lancaster Infirmary — one of the three hospitals in the Morecambe Bay Trust — recently attended a Death Café for staff. She described it as “a very positive experience”, and one in which all her staff would be urged to take part. “People talked about death experiences, both personal and professional, and how things had been. It really helped to clarify things, and we got on to some big questions.”
She praised the chaplaincy team for being easy to work with and “never judgemental about anything”. “We only get one chance to get this right. We don’t want to get it wrong.”
One of the things that came up in the Café conversations was the Trust’s use of the dragonfly “dignity in death” symbol, which the CQC inspectors also singled out for commendation. The symbol is used in the patient’s bed space as death approaches. Carole Palmer, a bereavement specialist nurse at Furness General Hospital, says: “Talking about death and dying is really difficult for people, including people in hospitals. We’re determined to make this important time as bearable as possible for patients and their families.
“We place the symbol on the door or the curtain of the room where the patient is reaching the end of their life, and that alerts our staff — not just the doctors and nurses, but the porters, the cleaners, the newspaper man — that the family of that patient need some privacy, and some extra sensitivity and compassion.” Non-clinical staff know to speak with clinical staff before they enter the room.
The symbol’s use extends to the canvas bags used for the patient’s possessions, so that staff know that those collecting the property have recently been bereaved. Bereavement staff send out forget-me-not seeds to family members after the death of a loved one; relatives are sent a condolence letter by the bereavement service a few weeks after a death; and the chaplaincy holds remembrance services every three months for the bereaved.
Failures apart, the Trust had always had good, caring staff, in Mr Dewar’s view, but a change of leadership and style in the past few years led to a genuine drive to create space for people to come up with new ideas, Mr Dewar said. “There have been lots of honest questions about the place, and I think that just changed the atmosphere.” All this has enabled the teams to open conversations about other aspects of death and dying.
He suggests that the normalisation of conversation about death, and the Death Café culture, could even begin to shape health-care in general. “It can point to a different way of engagement. Traditionally, health care has been the answer to a problem: ‘You have an infection, here are some antibiotics.’ But the demands on the NHS require fresh thinking.” The Trust is currently considering holding an experimental health-festival, with the emphasis on the lost art of living well.
There is a challenge in all this for the Churches, he reflects. How well do they do death? Are people in churches encouraged to engage with this aspect of life? “If not, surely this is a strange omission from an organisation whose very existence is based on death with a hope in resurrection,” he says.
He suggests that, if the Church could engage in conversation with people about death and dying, it could then engage in conversation about funeral planning. This could ensure that the faith of a lifelong churchgoer — prevented from attending in his or her final years by ill-health and decline, who died in hospital and whose family did not go to church — would be recognised in a full Christian funeral rite.