The choice to be at the bedside of a dying loved one has been challenged by the infectious nature of the coronavirus (COVID-19). In response we have updated our guide to Deathbed Etiquette to provide advice and guidance during this difficult time.
Knowing that a loved one is dying has never been easy. We tend to feel helpless and unsure what to do. But now, in these unprecedented times of the coronavirus crisis, we are faced with the very real possibility that if we can be with our loved one as they are dying, it will be very different to how it was before the pandemic. The disease has already taken many things from us, but our humanity, our hope, our faith and our love will endure.
There are no rights or wrongs about the way we feel and react; no definitive map to navigate through the loss and pain. If these thoughts are helpful, use them; if not, trust your instincts.
Think of them. Some people might like to light a candle or say a prayer, look at photographs or listen to their favourite piece of music.
So often the concern of a dying person is not for themselves, but for those who are left behind. Remember, they may spend a lot of their day asleep. They will understand why you cannot be there. They will want you to keep yourself safe. They will want you to take care of your family, if you have one.
It may be possible to contact each other by phone or video link. So, try to ensure that your loved one has a phone or tablet with them. There may be other people, too, that it is important for them to call. But be prepared that, toward the end, they may be too poorly or too sleepy to speak. If it is in your culture, try to make eye contact and hold it. It may be a time for ‘no words’; just to take a moment in each other’s company.
Remember those important last words that you, and they, might like to say: ‘thank you, I’m sorry, I love you’. Reassure them that you will be ok. Remind them that they will always be with you, in your heart and in your memories. Tell them that they are free to let go – this ‘permission’ is often taken. Do not be afraid of silence. Speak to them in your heart and imagine them talking to you.
They are skilled professional and compassionate human beings. They will do everything then can to give their best for every person in their care. Know that you can ask the healthcare team about what is happening even though they are busy. They will be keen to do all they can to help.
In the bleakest of times our deepest beliefs can be shaken to the core. We may lose our sense of self and purpose. Try to remember the things that have helped you get through bad times before; you may find strength from your religion or spiritual practice, it might be in the words of a poem, an image or ‘losing yourself’ for a while in a book or a hobby. Be content to be still, to breathe and to allow your body, mind and spirit to restore you.
Eat, drink, take regular exercise. Sleep may be difficult but keeping to some sort of routine should help. Relaxation exercises, meditation and music can calm persistent thoughts and foster a sense of peace. Do something creative. Make room in each day for something that gives you joy.
Guilt – along with many other feelings – is a natural symptom of loss. Even when you have done everything you can, there will be something more that pricks your conscience. Hear it and then let it go. Think of the good advice you might give to someone else – and then take it yourself.
Picking up the phone may be the hardest thing to do, but family, friends, work colleagues and people in your local community may be finding it hard to know when and how to get in touch with you. So, make that phone call or connect via video-link. Be honest; tell them how you feel. Use social media, in so far as it is helpful, to keep in touch with your circle of friends far and near. Ask for professional help if you need it. Share with others who are in similar circumstances and accept with gratitude gestures of kindness and help.
Listen to a recording of our discussion on the need for an updated Deathbed Etiquette with Dr Jo Elverson, Dr Amy Gadoud (consultants in palliative medicine), and Dr Lynn Bassett, a retired healthcare chaplain, or read a transcription of our interview here.
A summary of the Art of Dying Well revised guide to Deathbed Etiquette is available here in PDF format.