The Centre for the Art of Dying Well at St Mary's University in Twickenham has launched a new "deathbed etiquette" for Covid-19, described as "a different approach to 'being present' with a dying person".
The centre launched its original guide to deathbed etiquette, aimed at helping people support a loved one as they die, last November. The centre draws on the experiences of hospital chaplains, palliative care consultants, nurses, friends and relatives for drafting its guides.
But now, with the "final goodbye" to a loved one transformed because of the highly-infectious nature of coronavirus, being physically present at the bedside of someone you love as they are dying is either not possible, or different from how it was before the pandemic, the Art of Dying Well says.
So the centre has produced new guidance especially for this time of the virus.
Dr Amy Gadoud, working on the frontline as a consultant at Trinity Hospice and Blackpool Teaching Hospitals, said: “I think that's the bombshell that we've all been hit by in this coronavirus crisis. If people are dying of some other disease at this time, it's possible that one relative may be allowed into the hospital or care home. It's possible. It's also possible you may not.”
The aim of the new guidance is to help families and friends feel close to a loved one, even if they are apart or together in a different way.
Dr Gadoud said: “Healthcare professionals are never going to desert the dying.” She said that contact will always be there, but it might be a little different.
If someone is dying at home, touch may be possible in a different way, “with the sort of safeguards of good hygiene and using appropriate equipment,” she added.
During this difficult time she adds “there is no rule, there's no right or wrong way of doing things.” It’s best to be “guided by the relationship that you've always had with (your loved one) and to do things that you always would.”
At Dr Jo Elverson’s hospice of St Oswald’s, Newcastle and in many other places of care, patients can have a visitor even if dying of Covid-19, although they will be asked to wear personal protective equipment.
Dr Elverson said: "For many of our patients the difficulty is that visitors may be unable to come in because they live in another part of the country, have to stay at home because they themselves have Covid-19 symptoms, or may be in a vulnerable group where they have been advised that the risk is too great.
"Guidance and public messaging about visiting is changing all the time. I also think everywhere is interpreting the guidance differently across the country.”
Dr Elverson said that when visitors are allowed, “they may be asked to stay for a shorter time or to wear protective clothes and a mask, or even to keep their distance when they're in the room.”
And for those who cannot be physically present, the team at her hospice are trying to “make sure people have access to phones or tablets where they can actually see their loved ones.”
Dr Elverson said she encourages relatives to talk to staff and to find out the best way to keep in touch and to send in messages. “You can always write a message, send a text, send an email or something, or ask the staff to pass on messages of love. I know that certainly everyone that I've spoken to, would be more than happy to be that messenger, and to try and convey that care and that love, that you want to pass on to your loved one.”
When touch is not possible, eye contact is extremely important. Dr Elverson said: “I think there’s something about the eye contact, there's something about just being physically present. We quite often say to people just keep talking, even if their loved one is asleep or doesn't seem to be strong enough to listen to them, actually having the sound of their voice in the background is really helpful.”
Retired hospital and hospice chaplain Dr Lynn Bassett says the new guidance had three basic concerns: the dying person, the person needing the guidance, and then looking out towards friends and family.”
Deathbed Etiquette for COVID-19:
– Do what you can to help you feel close to your loved one even if you are apart.
– Think about what your loved one would think and say. They will not want you to worry.
– Communicating virtually may be an option.
– What can I say? Speak from the heart.
– Trust in the good care of the doctors and nurses. They are there for your loved one and for you.
– Take care of yourself. It is important that you keep well.
– Draw on your inner strength. Do what is helpful to you.
– Don’t let feelings of guilt take over. Accept your feelings and let them pass. Think of the good advice you might give to someone else and then take it yourself.
– Keep up with family, friends and those who will lift your spirits.