‘In this world nothing can be said to be certain, except death and taxes.’ (Benjamin Franklin).
‘Dying’ is only a short word, but brings with it a huge emotional response. I have worked in cancer care for many years, and it’s often the first thought that springs to people’s minds on hearing a cancer diagnosis – and the last thing discussed.
You may also find that you can’t bring yourself to talk about your fears – or your family and friends brush aside your worries, with the ‘got to think positive’ mantra. Sometimes, it becomes so ingrained, the whole ‘brush the subject of dying’ under the carpet – that if or when it becomes a real possibility – the communication doors are firmly shut. We hear from many online visitors, who facing the possibility of their own, or a loved one nearing end of life, don’t know what to say – and are in turmoil about what may lie ahead.
I was interested to learn that the ‘Dying Matters’ organisation hold an awareness week, every May. This is an initiative to get people to talk about death more openly, and to help prepare for a ‘good death’ whenever that time comes. Reading and talking about it isn’t maudlin, and won’t hasten anything on – but may help demystify the process a little. The Dying matters website has, for example, a useful page on Talking about death and dying’, which helps think of ways to open the subject, and test the waters.
My elderly father discussed death as openly he did about snooker results, the price of electricity, and the virtues of getting his grass cut before it rains. He’d gone through various funeral hymn choices, and stipulated that the ancient family ‘Reliant Robin’ was parked outside the church with balloons tied on it. He was old, and prepared.
Somehow it feels different, when cancer enters the mix, as there can be fears about the process of dying, as well as the end result. These are things better aired, rather than bottled up, as you and those you care about may have questions and anxieties which need open discussion. You may be struggling with the fierce range of emotions you're experiencing...guilt, sadness, anger, scared, tearful - and these feelings can feel difficult to process.
Talking with your GP, specialist nurse, hospital team about the practicalities of managing the end of life, make sense. Health care professionals, particularly (but not exclusively) in primary care, are generally following the the National Gold Standard Framework, (GSF) which is ‘help doctors, nurses and care assistants provide the highest possible standard of care for all patients who may be in the last years of life’. On a practical level this means at the very least, that ‘GSF encourages doctors, nurses and care home staff to help families and carers too, so they can work together to avoid 'crises'. Better planning of patients' care means a last minute prescription panic or something more major can be averted’.
It’s not a perfect world, and there are circumstances where things go wrong, and care falls below standards. That’s why hospices, nursing homes, GP’s, and hospital staff endeavour to work together to make sure end of life care is given as much attention as new life and maternity care.
There are also other things need thinking about – practical money related issues, such as wills, power of attourney, ‘living wills’ and funeral wishes, etc are often easier discussed when it’s not a crisis time, and it’s quite handy to get a say in what happens. In truth, these are often best sorted out long before the hypothetical need to put anything into action. This way, the planning is done, and you or your loved one can get on with living.
If you’re a carer, you too may be facing big questions, and be fearful of the future. Managing the end stages of someone’s illness, can be emotionally and physically draining, and there may be difficult conversations you have. Talking to each other about what is happening, what it means for you as a couple, parent/child, may never have felt more important, yet difficult to do. I have listed some resources at the end of the blog, which may help the practical and emotional questions you may have.
Meanwhile, the psychological, and spiritual aspects of ‘dying’ can often be the thing that keeps people awake at night. Do find someone to talk to about these issues…whether it’s with a counsellor, a leader of any faith group/religion, your GP, specialist nurses, or a wise family member or friend. You’d also be very welcome to drop into any of our Maggie’s Centres, or join in our forum discussions here online. (During COVID-19 pandemic, you can call your nearest Maggie's centre, and ask to speak to someone, whilst our Centres are closed to visitors)
So, to round up my blog today, I’d like to ask what you think? Perhaps for many of you reading this, death is something you’ve thought about, as a distant concept – but with the treatments working, or behind you – it’s not a major concern at the moment. However, this is something we only do once, and each of us is unique, special and valued. There would have been a significant fuss made on our arrival here - so I think our departing should have similar, or even more importance, and care. I'm aware for some people reading this, it’s a subject that you do think about…especially if you’re living with a cancer which isn’t going to go away.
Thank you for reading this through – it was thought provoking to write, and may have been a difficult read....
Updated May 2020
Talking about death and dying - Dying Matters
Updated resources - Dying Matters
Finding out you are dying - Cancer Research UK
Living with a terminal illness - Marie Curie
The final days - Cancer Research UK
Living with dying - Healthtalk.org
Caring for someone with a terminal illness - Marie Curie
Information - Dying Matters