Many people often think of hospices when they think of dying. Our local hospices are amazing places, full of dedicated staff. Both of the buildings are well-designed, with plenty of outside space, a large proportion of private rooms, communal and private space , a calm atmosphere, and a very non-clinical feel. The main focus of the hospice is for patients to be at peace, and death is not a taboo subject there – in fact it is the concept of a good death which underpins much of the work that hospices do, although it is important to note that around half of patients who go to the hospice do not die – it is certainly not a ‘one-way ticket’ as one of my patients recently worried. Care is holistic, and the spiritual and psychological needs of patients and families are also tended to, often by brilliant volunteers. Nursing staff are skilled and autonomous, medical staff are usually open and honest. The focus is on care, communication and compassion. They have squirrels and ducks. It is where I would want to die if I had a terminal illness.
Less than a tenth of of people locally die in the hospice. Almost half of our population die in one of our two acute hospitals. This equates to around 1500 deaths per year – around 4 or 5 deaths every day across the two hospital sites. If we were doing 1500 cardiac catheters a year, or 1500 laparotomies or bronchoscopies, we would be pretty good at those things, wouldn’t we? We would consider ourselves a centre of excellence, no doubt. But dying in our hospitals – and many others – remains marginalised. It can be a wonderful thing, and hospital is undoubtedly the right place for some people to die. Sometimes I exhort the staff to ‘Be More Hospice’ and they respond in style. I have seen patients die peacefully, surrounded by family, music playing, a favourite blanket on the bed, staff knowing how to just be there, wonderful communication. But hospital death can also be an awkward inconvenience, an event covered with a veil of shame, almost – a clinical event, impersonal, undiscussed. We worry more about whether it was avoidable or preventable than whether it was peaceful. It can happen on the wrong ward, on the wrong day, at the wrong time. It can happen almost as an afterthought at the end of a ridiculous series of tests and treatment. It can happen almost entirely controlled by staff rather than patients or family, or indeed not controlled at all. ‘Can I touch him?’ a relative asked as someone was dying, as if her loved one were the property of the hospital. ‘I had no idea she would die’ said a relative of a frail and elderly patient, who missed the chance to visit for a final time.
And what of patients who die at home? The thought of dying in a familiar environment, drifting away surrounded by loved ones, is seductive. With advance planning, many people are able to die a peaceful death at home. But sometimes the reality can be different. It’s hard work caring for someone who is dying, and supporting families and carers – particularly out of hours or at weekends – to control symptoms can be very challenging. There are lots of amazing staff within the community doing great work to help patients to die at home, but sometimes a crisis cannot be dealt with quickly or adequately enough to avoid an admission to hospital and then everyone feels let down.
The answer, surely, is to integrate and collaborate. Not because those are nice, buzzy kind of words that look good in a strategy, but because it’s the only way to ensure good dying for the vast majority of the people we serve, not just the chosen few. That is what we are starting to do in my patch, and I feel grateful to have such amazing colleagues in all three areas – hospice, hospital and community.
Also – we need to remember, and be reminded, that looking after people who are dying is really, really important work. It’s not a luxury, or a nicety. It can’t just be left to kind and pleasant and helpful people’s goodwill. It needs investment, it needs valuing. ‘It’s nice that you have time for these little chats’ says my colleague – not realising that these ‘little chats’ mean reduced length of stay in hospital, fewer expensive scans, happier patients, less complex grief for the bereaved (and a real feeling of job satisfaction for me).
The egg cosy? Some time ago, after a particularly fraught afternoon on an overcrowded ward, dealing with a patient dying of lung cancer who was uncomfortable and angry, and whose family were angrier still, I went to visit a patient of mine who had been admitted to the hospice. She and her husband lay together in bed, looking out over the garden through the open French windows. We chatted for a while. She told me how amazing the hospice was, how I should come and work there, how I would fit in. (Her husband pointed out, astutely, that perhaps I was more use ‘behind enemy lines’ at the acute Trust) A volunteer came into the room, bringing supper. It was a boiled egg, with toast, all on proper china, with a cloth napkin and a little glass of water with some sweet peas in. It looked beautiful. And the egg was covered in a perfect knitted egg cosy. ‘If it’s not soft enough’ the volunteer said ‘let me know, and I’ll do you another one’.
I managed to wait until I got to my car before I burst into tears. I wasn’t quite sure who I was crying for – me, my patient at the hospice, my patient at the hospital, the volunteer – or what I was crying about. It had been a long day. But sometimes I think about that egg cosy, and the paradox that it presented to me – perfect care for some, or good enough care for all? And it spurs me on, on the bad days and on the good days, to keep doing what I do – the little chats with the big results, the soft (boiled) skills with the hard outcomes – it’s important. We all need to be, if not knitting metaphorical egg cosies, then at least trying to boil our patients a metaphorical egg.