INTERVIEW: In response to the challenges of the coronavirus we have updated our guide to Deathbed Etiquette to examine what is possible now. Read on for a conversation with three end-of-life care experts, who contributed to our original guide.
The practice of sitting by the bedside of a dying friend or relative and accompanying them during the last days and hours of their life isn’t as common as it once was. And many of us have lost the habit, indeed, the art of doing it at all, especially when death has become so medicalised. That’s partly why last year The Art of Dying Well produced what it called a guide to Deathbed Etiquette for use at this most sensitive of times.
But as we all know, circumstances have changed in recent weeks and that guide has been amended to take into account ways of accompanying our friends and relatives when the coronavirus pandemic is often preventing us from actually being physically present alongside them.
We discussed this huge change to how we approach accompanying dying loved ones with three people with specialist knowledge and experience of end of life care. Dr Lynn Bassett is a retired health care chaplain, and Dr Jo Elverson and Dr Amy Gadoud, are consultants in palliative medicine.
Q. Lynn, first of all, what’s the most important thing to take into account at the moment?
A. (Lynn Bassett) “I think three quite simple things; the dying person, yourself, and then looking out towards friends and family. And I think that’s what we probably summed up in the original Deathbed Etiquette’s key points that you’ll find on this website.
“So how can we be for them? Well, we need to be attentive to them, we need to be attentive to their needs. What they may want or not want. It’s very hard you know, are they are they conscious is the first question. If they are conscious they will have more needs than perhaps if they’re not. What can you do for them? What can you do if you’re sitting there by that bed? Let them sleep, because sleep is the most comfortable place they can be probably at this time. Maybe hold their hand – a little touch – if you think that’s right for them.”
Q. And of course Jo, this is where things have changed dramatically for the moment. Even closeness is extremely difficult. And touch next to impossible. How can you make up for that?
A. (Jo Elverson) “I think it is really difficult, and I think what we’re finding is all of the things that are important; the physical presence; the touch; the being there and witnessing what’s going on; are all much more limited, and we’re having to almost look at what’s really core about those things and how we can do it differently.
“Many places are supporting people to have maybe one or two visitors at the very end of life, and so we’re certainly looking at ways that we can do that safely and to support people, but it’s not quite the same.
“For example, they may be asked to stay for a shorter time or to wear protective clothes or a mask and things, or even to keep their distance when they’re in the room, and I think those things make it feel very unnatural and a strange situation to be in… and to be honest, not what people will have imagined for their end of life situation. And it is challenging, but what we are trying to think about is ways to help people to feel connected, even if they can’t be physically present, and that might be by using technology, making sure people have access to phones or tablets where they can actually see their loved ones.”
Q. Amy, is there any one thing you’d recommend in the present circumstances?
A. (Amy Gadoud) “I think the most important thing is that there is no rule, there’s no right or wrong way of doing things, and really just to be guided by the relationship you’ve always had with that person, and to do things that you always would, and so try – even though it’s such a difficult time – to maintain that relationship that you’ve always had.
“There’s two different scenarios, probably, to think about. One is, is someone dying at home? And in those situations, we can say that touch might well be appropriate, with the sort of safeguards of good hygiene and using appropriate equipment that you’ll be changing using. So, not to say no touch, but just to say it would be different.”
“But we also have the incredibly difficult scenario of people in hospital, where very difficult decisions have been made that visiting is not going to be possible in a lot of situations; and then we really are saying there’s no touch, or face-to-face contact.
Q. But I suppose Jo, the other nonverbal communication you can use when physical touch is impossible is eye contact?
A. (Jo Elverson) “Absolutely. And 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. So definitely eye contact; definitely familiar voices; familiar noises are helpful as well. And those are things – either with a mask, or over technology, over the internet – it’s possible to maintain eye contact, it’s possible to keep that conversation going, even if the person is too weak to respond.”
(Amy Gadoud) “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.
“But if people are dying of coronavirus – we’ve seen the pictures on TV – we know that they’re going to be in a crowded intensive care situation. They’re going to be surrounded by people with masks – faceless -you know. It’s an entire reversal of everything we’ve been hoping for in palliative care really all these years. And yet, it isn’t because, of course, the staff – the nurses and the doctors – are still those human people being there for that person in as much as they possibly can.”
Q. And as Lynn implied there Jo, now is the time to, as it were, put our trust in the kindness of strangers, the doctors, nurses and carers who’ll be there with our relatives when we can’t be?
A. (Jo Elverson) “I think the big thing is to feel free to talk to the staff to find out the best way to keep in touch, to get updates, and to hear what’s going on, so at least you’re not feeling completely out on a limb, with no idea what’s going on, and also, send messages in. 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.”
(Amy Gadoud) “The thing to remember is that the healthcare professionals in the hospital are never going to desert the dying, that is something that I can categorically say would not happen. So the contact would still be there, it might be a little bit different in that they might have to wear a face mask and the equipment you might have seen on the television, but they will be there, and the contact will be there.”
Q. Amy, the original guide to Deathbed Etiquette mentioned saying the simple, but profound things like – I love you, thank you, sorry – I suppose in the new circumstances, how these things are said is changing as well?
A. (Amy Gadoud) “They can be said in in different ways. So if someone’s awake and is able to – when someone’s really poorly at the end of life we find that technology can be more difficult – but earlier on, if you can say things on the phone, or with video technology or whatever… it’s not the same, but that can help, and staff can certainly help facilitate conversations.
“Then the other thing is, is that quite often when someone’s dying, these deep and meaningful conversations don’t always happen in the way that may be represented on the television or whatever, and quite often it’s something that’s said in our hearts really to the other person… we might not say it out loud, but we can still say it in our hearts, and know that they say the same thing back, as it doesn’t always need to be spoken out loud and in a conversation, or in a face-to-face way.”
Q. And both Deathbed Etiquette guides, the original, and the COVID-19 update, say look after yourself, eat well, sleep, exercise, take care of yourself. That’s a very charitable touch Lynn.
A. (Lynn Bassett) “It is charitable, but it’s also common sense. It’s the first rule of first aid isn’t it, keep yourself out of danger, because if you become endangered, you’re not going to be good to anybody.”
Q. And there’s your mental as well as physical health to take care of too. And Jo, the message there is don’t feel guilty if you can’t do all you’d like.
A. (Jo Elverson) “Absolutely. It’s so important to not feel that this is your fault, not feel that you should be breaking the rules or doing anything differently. This is the situation we’re in, and it is absolutely fine to acknowledge that it’s sad, that it’s not what we wanted, but we have to make the best of it, and the really important thing is to stay safe. And I think some of that is maybe thinking – what would your loved one be saying to you if they were able to – and recognizing that actually they would probably be more concerned for your well-being than they are for their own, and actually, if that means you staying at home and staying safe, that’s is probably what they would want for you.”
(Amy Gadoud) “And I think most of us who have been bereaved will have felt guilty at some time about something we’ve not done, or could have done better. And often, I think it’s unfounded, but it’s a symptom of grief, if only. So it’s not so much guarding against it, as acknowledging that that’s what’s going on, and hearing it and then saying, well, actually, do you know if somebody else said that to me what would I say? I’d say you did your very best, now just put that one down and stop worrying about it.”
Q. And it’s just occurred to me that when we’re talking about harnessing video technology and such like to be present when we’re not, the epitome of virtual communication for believers at least, is prayer, remembering loved ones and indeed, being with them in the silence of your heart.
A. (Lynn Bassett) “I think I like what you’re suggesting, which is that prayer is a way of linking yourself with God, or with whoever you choose to pray to, and with somebody else that you love. And I think that is possible, and I’m sure there are examples of that across the world. You know, we hear of twins dying, and the other twin knowing immediately, that sort of thing. So, yes, I mean, maybe if prayer is your way of managing and coping, then to pray and to include your loved one in that prayer can be very powerful.”
Q. And Jo might there be comparable resources people with no religious faith can draw on?
A. (Jo Elverson) “So many things that people find helpful in these situations. For some, it’s finding things to be thankful for. For others, it’s actually seeing things that will help distract them from their situation to take their mind off it, and that might be through focusing on nature or art or poetry.
“There is strength and there is spirituality in everybody, whether they have faith or not. And I think helping people to tap into that is a really key part of supporting everybody in this difficult time.”
Q. And as you said at the beginning, Amy, many of the normal conventions no longer apply. Might we these days have to postpone, defer the ways, we physically accompany someone at the end of life?
A. (Amy Gadoud) “Yes, certainly after someone has died, there are restrictions on funerals and things at the moment. And certainly postponing so as to have something afterwards, would be would be very appropriate.”
Q. Postponing things, Jo, doing them, but not necessarily in the accepted order we’ve been used to?
A. (Jo Elverson) “Yes, I think that’s a very key thing, because as well as not being able to visit somebody who’s dying, the other thing that normally happens at the end of life is that families come back together or friends come and visit from afar, and everyone gathers in one place for this end of lifetime, and that’s obviously not possible at the moment. But it doesn’t have to be at the moment that somebody is dying, that those things happen, getting people together when we are able to, having that time to share the memories, to celebrate the good things and to cry together and to mourn together is absolutely important. And I think we’re all going to be discovering how crucial that is when this is all over.”
(Lynn Bassett) “I think we know in grief counselling that you don’t go back to normal, especially if you’ve lost someone. Maybe if you’ve been seriously ill in ITU, you don’t go back to how you were – you go forward to a new kind of normal which takes in what you’ve experienced. The Archbishop of Canterbury spoke very powerfully in the week about how out of all this must surely come some good, some recognition of our common responsibilities and needs.
“I don’t think society is going to go… I pray that it is not going to go back to normal… that it was, but to something better.”
Read the new guide to Deathbed Etiquette in response to the challenges posed by the coronavirus.