If you’re anything like me, you probably spend a fair bit of time wondering where to go on holiday, where to have lunch or where to go for a nice walk. But do you ever consider where you want to die?
That’s not a question that ever troubled me until five years ago when, aged 40 and at the height of my career as a breast surgeon, I was given the devastating news that just like many of the patients I had operated on, I too had breast cancer. Worse still, three years after my initial diagnosis and treatment, the cancer came back in the scar tissue where my left breast had been.
Today, after more surgery and other treatments, I remain cancer-free – for now. But this close encounter forced me to confront that very issue: where do I want to die?
Ending my days at home is not an option. Despite the amazing care that can be given in your home, I couldn’t bear the thought of my husband, Dermot, 56, who’s also a surgeon, sleeping in the same room his wife died in.
You probably spend a fair bit of time wondering where to go on holiday, where to have lunch or where to go for a nice walk. But do you ever consider where you want to die, asks Liz O’Riordan
Visiting is allowed – but check first
Visiting friends or relatives on hospital wards has been prohibited throughout the Covid-19 pandemic to help prevent the spread of the virus.
However, some hospitals have recently started allowing one or two visitors on non-coronavirus wards, or for those who are terminally ill.
The Government says decisions are subject to ‘local discretion’ by individual NHS trusts, so check what the rules are before you arrive.
Most hospitals will allow one or two visitors to meet patients outdoors – in a courtyard, garden or outside the front of the building.
Visitors must wear a mask at all times and seek permission from the ward manager beforehand.
Social distancing must be maintained and anyone with coronavirus symptoms, such as a persistent new cough, fever or loss of taste or smell, must not visit.
There may be stricter rules for children, who are less able to socially distance, so check first.
My preferred choice was my local hospice, St Nicholas in Suffolk – a charitable organisation that specialises in end-of-life care.
However, when I looked into it, I discovered it has just 12 adult beds for a catchment area of almost 300,000 people. There is no guarantee of a bed, no matter how badly you might need one, and it relies heavily on public funding to stay open.
So, that leaves hospital – a prospect that, I will admit, scared me.
As a surgeon – now retired – I didn’t often see deaths in hospital, aside from being called to attend emergencies on wards in which, sadly, patients lost their lives. And these were traumatic events.
So I suppose, like many, I had negative preconceptions of what a hospital death would be like – cold and clinical. This, I have since discovered, doesn’t have to be the case.
With my doctor’s hat on, I began talking to colleagues – including Claire Henry MBE, a nurse who has worked in palliative and end-of-life care for many years – and reading reports. I knew what I wanted more than anything was to make my death feel personal to me. And this is entirely possible in hospital.
The truth is, when we are close to death, the actual place where we die isn’t all that important. It’s the creature comforts, the right kind of spiritual and emotional support and who we are with that matter. These are never easy things to think or talk about. But it is vital that we do. Because you can have as good a death in hospital as you would in a hospice or at home – if you plan and ask the right questions.
At some point, you may go into hospital with little prospect of leaving. I’ve made it clear to Dermot and my oncologists that, when this time comes, I want to know that ‘this is it’. Doctors may be focused on last-ditch treatments to help you live longer, and often struggle to find the right words. So you could, if you’re ready, ask them – ‘Am I sick enough to die?’ – as Kathryn Mannix suggests in her book, With The End In Mind (which, by the way, is essential reading).
If the answer is yes, you and your loved ones can start to prepare. Something else I think it’s important for everyone to know: if there’s something you want, to tell people – no matter how big or small. And if you’re caring for someone who’s dying, ask them: ‘What matters to you today?’ The answer could be anything from wanting to be pain-free to seeing a pet – which can be arranged in hospital courtyards.
Partly thanks to social distancing, many hospitals are now developing quiet garden spaces where patients can spend time with their loved ones and escape the hospital environment. Just being able to smell the flowers, or hear the birds sing, can ease the anxieties. If it was me, I would want to hear birdsong one more time.
If you are the patient, whenever these desires come to mind, tell someone. Or write them down on a piece of paper and hand it to those in charge of your care. In so many instances, people will find a way to make things happen.
Familiar or favourite smells and tastes can be very comforting for someone in their final days – a favourite perfume or aftershave, or a supply of tea or biscuits. One recent study found having an item of clothing that smells like our partner can improve sleep quality in hospital – probably providing a feeling of security at a time when people may be scared.
Breast surgeon Liz O’Riordan, pictured, admits she had negative preconceptions of what a hospital death would be like – cold and clinical. But she has since discovered, doesn’t have to be the case
During my last hospital stay for treatment two years ago, there was one item I couldn’t have coped without: my pillow. I brought in my pyjamas too – it made my little patch on the ward feel like home. Family photos placed beside the bed – just like they would be at home – or the scent you or your partner wears, can help. Some wards will even let you bring in your own duvet and cover. Whatever the home comfort that makes you feel safe, it’s always worth asking to have it with you. If food is important in your life, plan a favourite meal sooner rather than later, as you may become too poorly to eat it.
Relatives can bring in your favourite drinks and snacks, or ask the nurses if they can cook something for you to eat. Dermot once made semolina pudding for a patient who was dying. The same goes for alcohol. If you love a whisky before dinner, ask if your family can bring some in for you.
When someone reaches the end of their life, the most tender moments often happen while doing the most mundane tasks. Simply helping a sick loved one with their morning routine, or washing their hair, can provide a connection that many will cherish long after the person is gone. And this is possible, even in hospital. You won’t get in the way of nurses so long as you make it clear what you want to happen and with whom.
But, of course, even without Covid-19 restrictions, it’s not always possible for relatives to be beside you every second of the day. If that’s the case, and you want to stay in touch, ask nursing staff if they can help connect you via a smartphone or tablet. If video calls and mobile phones aren’t for you, there are other ways to stay connected.
The charity Anne Robson Trust, which provides support for terminally ill hospital patients, has a service where relatives can email a message or leave one on a voicemail machine. The message is printed off and delivered directly to the patient within hours. If there are small children or grandchildren in the family, have someone drop off or post their drawings.
The prospect of being alone is usually what puts people off dying in hospital. But trust me, with a little help it is possible to be alone without feeling at all lonely.
- For more information, visit annerobsontrust.org.uk or mariecurie.org.uk.