Finding serenity in end-of-life care with Mireille Hayden

In this episode of Before You Go, we speak with Mireille Hayden, Health Psychologist and founder of Gentle Dusk, an organisation dedicated to improving emotional and psychological wellbeing in end-of-life care.

Mireille shares her remarkable journey into the bereavement sector, from her early work as an end-of-life care commissioner to founding Gentle Dusk in 2011, and how her experiences working across the NHS, hospices, and charities shaped her approach to compassionate care. She reflects on her work supporting healthcare professionals, including the development of training programmes and wellbeing practices designed to help staff cope with repeated exposure to death and dying.

In this deeply personal conversation, Mireille also opens up about her own lived experience of grief and uncertainty, and how it influenced the creation of practical end-of-life planning resources in partnership with the NHS and Memorial Woodland Trust. We explore the importance of emotional resilience in the sector, the need for better wellbeing support for staff, and why open conversations about death and dying remain essential in modern society.

This is a powerful discussion about compassion, humanity, and finding calm within some of life’s most difficult moments.

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Transcript

SPEAKER_02 0:05

Hi everybody and welcome to Before You Go. This is the podcast where we open up honest conversations about life, death, and everything in between. The conversations many of us know we should be having, but often don't quite know how to begin. Before we start, a quick thank you. Before you go is proudly supported by Westerly Group and produce in collaboration with Empika PR to help us bring these important stories to a wider audience. Today's guest is someone whose professional expertise and personal experience are deeply intertwined. I'm joined by Marie Herbert Hayden, health psychologist and founder of Gentle Dusk. Moray has worked in end-of-life care since 2005. She was the end-of-life care commissioner for North Central London before founding Gentle Dusk in 2011, a not-for-profit organisation dedicated to emotional and psychological health with specialist expertise in end-of-life care and grief. She has worked extensively with the NHS, hospices, charity, and care organizations, equipping professionals with the tools to improve end of life care and support their own well-being in the process. She also contributes to a number of national and international media outlooks, including BBC News, BBC Ideas, Sky News, and News Scientist. But what makes today's conversation especially powerful is how closely her personal and professional world collided. Moray, welcome to Before You Go. Thank you very much for joining us.

SPEAKER_00 1:19

Thank you for inviting me. It's really great that we can come here and open up those conversations more and more. Something that when I first started was not present at all, and that's gradually kind of coming to the fore and people are being more open, kind of inching forwards as we move on through the years.

SPEAKER_02 1:39

Thank you. That was where I was going to start. You've been in the end-of-life um sector for over 20 years. What first drew you into the space?

SPEAKER_00 1:48

Well, I I really always had an interest in end-of-life care and making things better for those um approaching terminal illnesses or death or dying or bereavement. So I was trained as a psychologist, and that's something I knew I wanted to be from finishing my A levels. I just knew that I wanted to have the tools and knowledge and skills to support others. And so when I finished my uh degree and my master's in in health psychology, um I kind of started my work in the NHS, and very quickly it was something that was so important to me. And a lot of people say, Oh, you know, that must be a really tough job, and and it's actually a really amazing job, and it's about making things better at the point where it's so difficult. So it can only be good to try and help people improve their situation, talk about it, open up conversations, alleviate pain, suffering. Something that we all go through, either personally, um in our own lives, that we're all gonna face death, and it's something we always go through because we love other people and we are close to other people, and we have to experience their end of life and be in that space, and it's a very emotionally difficult space to be in, and we can do a lot to help people and to support people, and we can do a lot to make things better at end of life. That's that was really there from my 20s, something that I just wanted to do, you know, make things better for that very, very difficult time. Um, and it was shortly followed by uh the untimely death of of my mother, and you know, everybody thinks, oh well, that that's why she went into the field, but it it it started in in my early 20s. I just had this passion to make things better.

SPEAKER_02 3:51

And that led you to working in, like I said in the introduction, the NHS, hospices and charities. So you've got a really broad perspective on what happens in this space. Um, what have those different perspectives taught you about how we approach death in the UK?

SPEAKER_00 4:06

I'm got the fortunate experience of having been brought up in France and the French culture and having studied uh psychology in Germany. So I've got that European flavour. Um, and I must say we do a great job in the UK. We're really, really good at this, and this is thanks to um, you know, the whole hospice movement, which started in England and then spread across other countries. I think we are not perfect because we we still have this big taboo, but in terms of the healthcare settings, we certainly are very advanced in what we know about end-of-life care, what we know about advanced care planning, and I think England really has also led the way in in terms of what we call public awareness, so having more open conversations. And obviously, then we have the the the wonderful gift of Deaf Cafes, um, which my colleague John Underwood started, which kind of opened up conversations. We have um Dye Matters Week every May, which enables organisations close to end-of-life care to really go out and start opening up those conversations. And I can say that every different sector I have worked with, whether it be hospice care, whether it be the NHS, either in commissioning or or in service, I find the professionals are exceptional. They really care, they are such special people. Um, and we form a you know a kind of a community of professionals who want to make things better for end-of-life care. And I think you know, I've I've worked a little bit with some private sector funeral directors and and restoring more woodland burial ground, and I just feel like there's really um great care actually in looking after people, looking after the dying, looking after the dead, looking after their families. And obviously, we've got a long way to go, and we could be doing much better. I think part of that is culturally shifting, and and we are getting there in terms of opening up conversations a bit more, and in terms of facing our own end-of-life care, and in terms of all the tools that are out there to help us organize our affairs, organize our end of life care, organize our estate, organize our funerals so that we can kind of participate, contribute in advance, and be empowered to have the end-of-life care that we want, but also speak to our families more openly about the kind of care and end of life that we want and whatever we want after death.

SPEAKER_02 7:04

Thank you. So that those broad um experiences that you you were speaking of there. Uh, in 2011, they they brought you to found Gentle Dusk. Now, for those that are listening that maybe haven't heard of Gentle Dusk, uh what is it and how did it come about?

SPEAKER_00 7:21

Well, I had been working in the NHS, the um end-of-life care commissioning lead for North Central London for a number of years, and a lot of that work was working with hospices, working with GPs, working with hospitals to make to make to do better coordination of care, to, to, to have better communication, to have um uh better flow for for the patients. And there was one block all the time, which was nobody wants to talk about it. So here we are trying to make things better, and we know that when people talk about it and engage with end-of-life care in advance, we know that has got better outcomes for the people who are approaching end of life care and for all their loved ones and those close to them. So we know that if we engage in advance in those conversations, then we can make it better. So, but if nobody wants to talk about it, and then and some of the research from the King's Fund at the time were that GPs didn't want to broach the subject, and then the patient didn't want to broach broach the subject. So we had like this still mate, and um, I was very lucky to be successful in getting some funding from NHS England at the time to support the implementation of public awareness campaigns, so really um training volunteers and going out there and going into whatever communities we could, either you know, formal communities, churches, uh old age UK kind of groups, or any kind of group that that would be open and interested in it. And at the beginning it was very much about begging them to have us kind of have those conversations and also showing that yeah, that that those conversations are not depressing or sad or terrible or to be frightened and kind of you know kept at bay, but actually to to engage with them can be quite fun. So I got this funding to work across North Central London with a a trained team of volunteers that we developed a program for to go out there and kind of go forth and and talk about it in any kind of setting and every which way, either through the arts, through photo competitions, through events, through cafe gatherings, presentations about every single kind of subject that that you might want to engage with. It could be funerals, it could be wills, it could be uh end-of-life care, it could be bereavement, um, just bringing up um the subject. At the same time, uh that was uh in in 2011 uh when my mother had a very severe sudden stroke. And uh I knew that what I wanted to work on the most was engaging the public with with the with the subject and opening up conversations. Conversations that I had found very difficult to open up with my mum. You know, I do have a memory of saying to her, Oh, so you know, what's gonna happen when you die? And her response was, Oh, what are you after my money? You know, and it was all very lighthearted, but that was the end of the conversation, you know. We never had it. And obviously, we never expected her to have, you know, she was perfectly healthy, so for her to have a sudden severe stroke that that rendered her with no capacity, and we had not had those discussions, and she was end-of-life care. It I mean, she was end of life care for two years. I remember getting calls every few months, right? This is the end, and and and you go up and you get yourself ready and and and then um and then she was okay again. You know, you can say goodbye a number of times before the final goodbye happens, but that really first of all it reminded me that life is short, and I was very uh enthusiastic about this work, and possibly less enthusiastic about some of the more very dry commissioning work that I was involved with, and so uh I took the opportunity to to leave the NHS at that point and to set up Gentle Dusk with the idea of supporting public conversations, supporting professionals to be more comfortable with talking about death and dying and bereavement, so that you know they could be that joining up, that meeting of and that engagement around the conversation. So, yes, that was 15 years ago that I I I started Gentle Dusk and and I haven't had a day off since I feel like it was you know it was a comfortable place to be to be in the NHS and to have a career and have a pension, and it was quite scary to jump off the cliff. And uh I think you know, with a lot of passion and enthusiasm and drive and experience and some great colleagues around me in the NHS and in other sectors to kind of support the work. It's been an amazing journey. Um, and I'd love to look back at all the data, but we we were training, you know, hundreds of professionals every year in end-of-life care conversations, and we were um with the help of our future matters of volunteers, the Gentle Dust Volunteers, we we were seeing four to five hundred people every every year and starting the conversation and telling them how to plan for better end-of-life care and for um better bereavement for those that they're left behind.

SPEAKER_02 13:09

The work that you do is really, really vital in terms of supporting those professionals. Uh, you said it uh you said it a couple of times actually um in that response about um how GPs were resistant to talking about it. GPs were the example, and I think there were a few different um professionals you probably went as part of that. But the two so I guess this question's in two parts. Firstly, um, why was there such resistance um in 2011 to having those conversations, bearing in mind the contact you were having were people that would be given diagnosis and stuff every day, so would have to have some level of empathy in delivering that. And then the second part of the question is do you still experience it today? Do you still experience that resistance?

SPEAKER_00 13:48

I think we've we've progressed, but back in 2011, we were still in a place where death was kept very separate. We're part of a society that you know it's all about living 100 miles an hour and pushing back death. So we kind of avoid the subject, we think it's you know, depressing, taboo, you know, not to be engaged with and and and and too sad. I think in a way, COVID was an opening of everybody's mind as to well, death doesn't only happen when um you're very old and you've lived a full life. Death can happen at any moment. Uh, we couldn't get away from death during COVID, could we? There was, you know, it was on TV all the time, it was about number counting, it was, you know, it and it was everybody anybody, and that really I think opened up people's thinking a little bit more in terms of like, well, actually, it's something that happened to me. Um so it's very difficult to avoid it. And I think the more we talk about it, the more we kind of normalize the conversation, and the more we find it acceptable. I mean, I'm you know, I'm surrounded by people who are in end-of-life care, and usually people that come up to me want to talk about it. So I find I'm I'm in this bubble of like everybody's comfortable, but I I do experience a lot of people either facing end-of-life care or in grief who feel a lot of pain from other people not wanting to talk about it. And I don't think people don't want to talk about it. I think people are very uncomfortable about upsetting others. Um, I remember doing a training about bereavement, and and one woman came up to me and said, Oh, my best friend's husband's died and it's it's Christmas, and and I'm thinking about him, but I don't want to upset her by talking about him. And I simply said, You won't upset her about talking about him. You'll just be with her in the pain that she the pain is there, the pain of loss, of his absence. What you're doing by opening up the conversation is you're not leaving her alone with that sense. Um, we did run a number of uh bereavement walks at um Memoir Woodlands in in in Bristol, and a lot of the discussions were about invalidating people's experience and people's feelings. You know, I think that's what happens and that's what we need to be aware of. If you don't talk about death, dying, about your maybe your neighbour's end-of-life care and you know their wife very well, this kind of this very British stiff up stiff upper lip, you know, we must go on. Well, actually, we need to accept that life is sad, and it's okay to be sad, and it's actually good to be sad, and it's good to cry. You know, if you're if you're feeling sad and you're holding the tears and you're holding that sadness, that's when you become unwell, both emotionally and physically. So I think we really need to just become more comfortable with those uncomfortable emotions like sadness and anger and anxiety, and accept that that is part of life, and that when you're faced with your own death or the death of somebody you loved, then those feelings are gonna come in and they're gonna be strong, and not being open about them is gonna cause harm.

SPEAKER_02 17:31

I remember speaking to somebody about this topic um and the avoidance topic around you know, people didn't know what to say to them and when to say it because they felt as though the if they weren't to use the right sort of language, if it wasn't gonna be sensitive enough, etc., then actually they might end up upsetting them. So therefore they just didn't say anything. Um, and actually um his view was that what they probably didn't realize is that maybe just maybe they wanted someone else to open up the conversation about their loved one because that might have been their only opportunity to really talk about them that day. Um, and that is something that actually they really want us to do. I appreciate it's really tough because it's you know, people's behaviours, it changes in in grief, doesn't it? You know, and and people go, you know, different parts of the the process, you know, people go forwards and they go backwards, and it depends maybe on the day or um, you know, the season or an experience that perhaps they're seeing in front of them. It might even be a smell or something, you know, it could be anything that kind of maybe prompts them to respond in a in a different way. But I think what I'm hearing from you there is about making sure that actually you do you do have those conversations, you do speak about it, um, because you said about you know that individual will realise you were there with them in that pain that moment, and that will that may bring them more comfort than actually saying the wrong word ever could. And so I think that's a really, a really powerful and poignant example. You mentioned in there about the pandemic, um, and it's speeding um a lot of the the in terms of the conversations that you were having in the comfort that colleagues, your colleagues were having with people because they were having to do it so regularly. You were delivering, I think, twice as many, as much support to people in uh professionals uh during the pandemic.

SPEAKER_00 19:10

Yeah.

SPEAKER_02 19:11

And at the same time, uh, if you don't don't mind me mentioning, your father had passed, your daughter was really unwell, and your husband was also diagnosed with leukemia. You mentioned about holding, you mentioned about holding a lot of emotion, and that is an extraordinary amount for any one person to hold. How how did that period change you and and how did that impact your your outlook on the work you do?

SPEAKER_00 19:32

I think it's it it's it's really brought up that specific issue about being open about our life difficulties, whether whether it's grief or whether um whatever we're facing and those uncomfortable emotions, it's really important to not put not push them away. I think what it really did was that I was uh it kind of brought up a new passion in me, which is to support professionals in end-of-life care and palliative care, because there has to be an awareness and an acknowledgement about how demanding it is. Whether you're a funeral director, a palliative care nurse, a healthcare assistant, it necessitates having compassion and a lot of compassion and being witnessed to pain and suffering from the people who are going through end-of-life care and their families. And that demands quite a lot out of us. At the same time, for me, I was I was you know, we were so busy in COVID and um it we we wouldn't do anything less than respond to the need that was there, which is you know, double the amount of of caseload. And I I don't know any party of care professional who's not absolutely dedicated to their families, and what we can do often is actually forget our needs and and kind of uh try try and keep on going. Um it was really useful in a way for me professionally now because I I support those professionals, um, and I had to dig deep into finding ways of coping. And when you're doing double the amount of work that that work is emotionally quite demanding, that depletes you. When at home you are faced with challenges, which which we all are. I mean, I was just given a huge series of unfortunate events, and every one of those I just tried to cope with, and I wasn't coping because when you're doing that much work at work, that it's depleting you, and then you come home and you've got a child who's very unwell, and you're in grief from. Using losing your father and your partner's diagnosed with leukemia, it's you know, I felt like an octopus with all my tentacles being like ripped apart, and I was just gonna split, and I completely burnt out. And since that moment, I've done a lot of work and a lot of research, and I've been supported by some grants to do more looking at how do we support professionals who work in this field so that they can cope with the amount of emotional difficulty that they have to go through, which now is even greater because we have challenging home lives, a challenging kind of geopolitical world out there that we struggle with. So that experience forced me to go back to my psychology training and go back to the techniques and look at all the evidence base around professionals, and we know that actually a lot of professionals who work in these fields have burnout, have anxiety, have depression, and that's a hard pill for me to even say out loud because at the same time it is such a rewarding job and it brings you so much value, and I think that's why we we do it, you know, even when possibly it's it's you know we need to take breaks. Um, and in in that that crisis point which which I was at, um, I had to kind of look at techniques that would be enabling me to survive. And I was literally in survival mode or or not survival. I was you know on the border of burnout, and it was how was I gonna get myself out of there? And I was very lucky to get a grant to to to study all the techniques that could be helpful, and I practiced them. I was, you know, um doing a science of well-being course at Yale, I was I was doing uh acceptance commitment therapy um in Denver. I was kind of soaking up everything I could so that I could be coping with everything that was coming to me. I think I think when times get really difficult, it's it's a human condition to say, well, I don't want to deal with it. I don't want it, I just want it to finish. I want a nice life. I want everything on the outside to be nice and comfortable because it, you know, maybe in five years it will be better, maybe you know, maybe something will change and it will be better. But I think it's very important to change things now and develop practices that really help us with everyday life. So I've developed the Serenity program, which is for palliative care professionals or any professional that that works in the field, but it's actually useful for any person who's really you know pulled in every direction and really challenged emotionally, which you know, so many, so many of us are, um, to to you know learn techniques that you can practice every day, like mindfulness, meditation, better meditation, which is a meditation for love and compassion, to really like kind of dig deep and and and find that space to still be present for um for others, whether it be clients or family or or whoever's got the need, and also some psychological, scientifically proven techniques to process trauma. Um people who work in death, dying, and bereavement have a lot of emotional challenges, if they want to call it like that. You know, you could call it emotional trauma trauma. Um, maybe they have more than others because they go to work, and as uh amazing and valuable and positive as that experience is, it's also really challenging. So we need to get better at looking after ourselves, understanding our emotional world, developing emotional and psychological health. I've got this vision that you know how we look back at the pre-Victorian times, they you know they didn't have baths and they didn't brush teeth, and you wouldn't think of that. Like if we told our children of war, they didn't have baths, they didn't even know they had to be clean and they didn't know. I hope that you know in 15-20 years' time we'll be in that space where our children will be saying, Gosh, did you know they didn't know about emotional health and they didn't know the practices to kind of like you know support your mind and support your emotions? Um that that that's that's my goal, and it it's particularly important to those who work in the field of of deaf, dying, and bereavement, and also to those who face end-of-life care for themselves or or for or or for someone close to them. It's like that is emotionally challenging. How do you how do you process that? If you keep it away and you know, I'm coping, I'm coping, and and kind of don't go to those difficult spaces, it's really not healthy and it can cause long-term emotional and physical health problems. If you do go there, you also need to know how to manage that kind of emotional challenge, that upheaval, that trauma. Losing somebody you love is trauma. Working with people who are dying can involve a lot of emotional challenge or trauma, and people get burnt out. Carers of their loved ones get burnt out, professionals get burnt out. So there is a lot to do around acknowledging that situation and teaching people the practices to to kind of have better emotional and psychological health, and validating people's feelings, and validating the whole gamut of feelings from you know, joy, relief, happiness to depression, anxiety, they're all feelings, and it's okay to have them.

SPEAKER_02 28:06

So I you touched on a few bits there as well in terms of life, death, and serenity at work. I think you've also got two guides in conjunction with the NHS and the Memorial Woodland Trust, haven't you? You've got the guide to end of life planning and when someone dies. And I just wanted to ask you um, why do you think resources like that are so important right now?

SPEAKER_00 28:25

I think we know that it's difficult when you approach end-of-life care. We know both for you as a as a patient and and for for your family, it's bewildering for your mind and it's bewildering for your emotions. And putting end-of-life care plans in place can help you with that. If you know, if you're ready and comfortable to do that, and it can make things better for your family. We know that end-of-life care planning improves bereavement in your close ones, so but you know, that information needs to go out there, so we need to share that information with all those who are approaching end-of-life care and their families. And it's the same thing with what to do when someone dies. There are there is a lot of paperwork, and in writing the book, I had I had meetings with funeral directors, I I I had meetings with the palette of care teams, I had meetings with celebrants, with you know, trying to set out as plainly and clearly as possible what the process was was really difficult. And here I am, a palative care um, you know, uh professional who's been working in the field. And I'm not in grief currently, so my brain is functioning at its best. So, what is it like for people who are in grief and who are in a difficult place? So the the booklets were really a way of helping people, and we've had an amazing amount of feedback from those either in grief or those approaching end of life about how you know how helpful it is to have all the information in one spot and it's clear and and it's laid out in a way that's the feedback I have had, which is touching for me, it was that it was sensitively written, and that's really touching because I obviously wrote it when my partner was diagnosed with leukemia, so I was writing it for him, and that changed the way I I spoke, and and people can can feel that through through the booklets. So it's important to give as much support as possible to those who are faced with death, dying, and bereavement, and the booklets are are part of doing that.

SPEAKER_02 30:41

Thank you for that, Murray. I really appreciate that. Um, but so we are approaching the end, and before we go, we always like to do a little quick fire section with our guests. So it's the first thing that comes to your mind a quick uh fire responses. So, one word you wish people were less afraid of when it comes to death.

SPEAKER_00 30:59

Death. Just use death, don't use pass away. Yeah, you know, all the euphemisms. There's about 200 of them in the English language. Just use death. It's hard and it's difficult to hit, but but it but it it is it kind of it is what it is.

unknown 31:16

Yeah.

SPEAKER_01 31:16

Yeah, I completely agree, completely agree.

SPEAKER_00 31:19

One word that describes healthy grief, allowing yourself to feel the discomfort and the pain, whilst allowing yourself to engage in activities that give you a rest from grief, and that can be laughter.

SPEAKER_02 31:35

A conversation about death that everyone should have before it's too late.

SPEAKER_00 31:38

I love you. That is a conversation to have before death to all your close ones. That is gonna be what your legacy is the love you've had for others and expressing it and for your close ones to hear it and to remember it for the rest of their lives.

SPEAKER_02 31:56

Something professionals in this sector need to hear more often.

SPEAKER_00 31:58

You're doing an absolutely amazing job, and we're grateful for what you do. Self-care is not just a word, it really needs to be done, and it needs to be acknowledged that you need time to look after yourself and you need to dedicate some resources, some time, some space for your well-being. It's only when we're in the best place that we can offer the best compassion to others.

SPEAKER_02 32:25

And finally, one sentence you hope people will carry with them after listening today.

SPEAKER_00 32:30

I would say accept every single emotion that you feel. There are no bad emotions. There are no emotions to avoid. Allow yourself to feel them and let's be open to listening to others' challenging emotions.

SPEAKER_02 32:46

Moray, thank you so much for for joining us in your openness and honesty and transparency around it. It's a it is a topic I to be honest with you, I we could we could talk about all day. There's so much power in it. Um, but we really, really appreciate your your time. Um if you would like to learn more about uh Moray's work or access the free end of life guy uh guys that we mentioned during the podcast, you can visit www.gentledusk.org.uk and follow gentle dusk across LinkedIn and other social platforms. If this episode resonated with you, please do share it with someone who might benefit from hearing it. Before you go, it's proudly supported by Wesley Group and produced in collaboration with Employee PR. And until next time, keep having the conversations that matter. Thank you. Bye bye.

SPEAKER_00 33:30

Thank you.