One of the effects of the COVID-19 pandemic is that collectively there will be more conversations about death and dying. They will be challenging conversations because even though death is part of the natural process of living, sadly many people will be facing death before their natural time and this will be very distressing.
Now more than ever it’s a good idea to have open, honest talks about what is important to us and those we love. Then, during these difficult times, we can hope for the best whilst we’ve planned for the worst.
Starting the conversation
- So how do you have these difficult conversations? They take all of us out of our comfort zone.
- How do you even bring up the subject of death? We do not want to add to the general level of panic, but we do want to help people to be in some way mentally prepared.
- How do we communicate with confidence and empathy?
- How do we communicate with openness, compassion and dignity?
Ideas about how to do this include
- Choosing a time when the person you want to talk to isn’t stressed or upset
- Can we talk? I know it’s not easy but I want to help.
- Don’t push it. If they don’t want to talk now – try again later, or another day
- What is your understanding of the current situation?
- Make sure you listen. Its easy to forget to listen when you’re starting a conversation that you are worried about having
- Have you thought about what you would like to happen if you become very ill?
- Make sure you offer reassurance and comfort. Talk about what YOU would want, make it about everyone, not just them.
Some things that might be useful to think about are
- If you become very ill – would you prefer to be cared for at home or go to hospital? (It’s important to gently explain that if someone goes to hospital they should be aware that for the time being they won’t be allowed any visitors)
- Would you feel more comfortable in a hospital environment with medical staff?
- Would you feel more comfortable at home with a family member or friend even if you get so ill that you may die?
- Before making the decision that you would rather stay at home, you or your family MUST contact your GP (think about the best way to do this – email may be the most effective) to discuss this decision with them and to find out what community care can be provided for you.
- Your family could contact your local Hospice, or local authority to find out more about what support is available in your community
- Its important to find out what community support is available in your area – these things are constantly changing, so its hard for us to give any definite advice here.
- Have you got a will? If so where is it? Make sure your family know where to find it
- If not, can you find someone to help you make one? It’s very easy to do… and will be a great help to your loved ones in future.
- Do you have a Lasting Power of Attorney for Finance or Health & Wellbeing? If so where do you keep the originals?
- Have you kept a log of passwords for your computer, social media, bank accounts etc? If so, jot them down on a piece of paper, and leave in an envelope with your will.
- Consider writing an Advance Decision to refuse treatment (also sometimes known as a Living Will, or an Advance Directive). Be clear about what you DON’T want to happen to you.
Take some time to talk about different choices you might need to make in the coronavirus outbreak. The services that are usually on offer may have changed.
It’s very difficult to generalise as each hospital and community will have variations in how they are having to operate and deal with things in real time. See what you or your loved ones can find online about current provision in your area.
These conversations may be the most important you have, don’t miss the opportunity and remember:
It’s important to hope for the best, having planned for the worst.
Don’t forget to consider the positives:
By planning ahead and having conversations now, should the worst happen, you will:
- Enable your family or loved ones to honour your specific needs and wishes
- Reduce your loved one’s stress and anxiety by having important information accessible and clear
- Reduce the time required to search for information and enable loved ones to sort out your affairs
- Enable loved ones to progress with arrangements freeing up their time to grieve
- Give your family peace of mind that they did the right thing
Small acts of kindness and friendship really matter
Before coronavirus came along, our work focused on providing support to the many patients who die alone in hospital. During the COVID-19 pandemic, the teams of Butterfly Volunteers are unable to support patients, and we feel anxious that patients and family will be alone at this time due to the lock down in hospitals.
We hope this information will help you manage your anxiety and understand what decisions you and your loved ones need to discuss. Please do contact us via our contact page if you would like us to address any other topics. We will do our best to provide as much clarity as we can within the constraints of the subject.
Our work is entirely supported by donations. Help us continue to provide support to patients at the end of life, and their families by donating now.
Thoughts from our Patrons
“We are living through unprecedented times in this modern era, which just a short while ago were unthinkable and the remedy unimaginable, a total lockdown of western European countries. As a result, these are confusing and worrying times. Our sentiments in this guidance are designed to help you navigate a range of issues that most of us find difficult to discuss. We hope you will find it of assistance”.
Dr Peter Carter
“It’s so important to have these conversations now, don’t put them off. Having them in a crisis is never good. If you have had a conversation revisit it in these unique and challenging times. Do it now and put your plans away in a box, then they are there if and when you need them.”
Anne Robson Trust and Princess Alexandra Hospital partnership launches a messaging service to enable families to contact their loved ones in hospital during the Covid-19 outbreak.
We were delighted to be announced as the winners of the Markel 3rd Sector Care, End of Life Care Award 2019. Please see details of our award here.
We are very lucky to work in partnership with the Princess Alexandra Hospital and the wonderfully literate Shahid Sardar, Associate Director of Patient Experience. He recently wrote this article in the Nursing Times.
Following a press release by the National Lottery announcing that ART has been awarded funding to support work across East Anglia – BBC Radio Norfolk invited ART Director, Liz Pryor, to speak about the charity on their Drive Time show on Friday 14th February.
They also spoke to Butterfly Volunteer Mary and heard about the impact of her role. Listen to the interview here.
The Anne Robson Trust has received £95,000 of National Lottery funding to support its work in providing one-to-one compassionate listening, comfort and companionship to people nearing the end of their life in hospital.
Liz Pryor, Founder of Anne Robson Trust, said:
“We are extremely excited to receive transformational funding from The National Lottery Community Fund. We are a small, but rapidly growing charity, and are keen to expand our work across the East of England and beyond. This funding allows us to engage an East of England Area Manager to oversee work, and provide much-needed support and guidance to the Butterfly Volunteer Coordinators we work with.”
Please see the National Lottery’s press release here.