Speaker 1 (00:02):

Hello everyone. And welcome. This is ask a death doula. My name is Susan O’Brien today. We have a podcast interview with Darren Evans. Darren has been providing technical solutions to health and social care organizations for over 25 years, as well as leading a team that rolled out some of the very early, um, social prescribing projects. Now widely adopted internationally. He is passionate about using technology to make progressive societal change. He and his team now assists companies and individuals across various niche settings to utilize digital technology in their award-winning apps, journals, moments, and timelines. Okay, we gotta talk. We have a lot to talk about the, the time for the podcast is probably not enough, but it’s gonna be a great start. Welcome, Darren. Thank you for being here.

Speaker 2 (00:54):

Absolute pleasure, Suzanne. Wonderful to be here. Thank you very much.

Speaker 1 (00:57):

You’re welcome. So with your introduction, I think it’s important for us to all know that whether we like technology or not what’s happening is that it really can be, if we, if we use it, it can be such a wonderful tool and we have to move with change, right? And so sometimes people don’t like that, but I think the pandemic taught us that the gift of technology, the gift of being able to connect with people everywhere through technology, um, is so valuable and so comforting. So I love that you’re bringing technology into this space. Um, for me working with people, they’re not always tech savvy, we’re gonna kind of break it down and make it super easy for them, but I love what you’re offering because it’s two areas that are sorely missing in this whole spectrum of end of life and grief and bereavement. And if we can help to fill those spaces any which way we can and help people heal and have a better journey, that’s what we’re here to do. So welcome, Darren. Thank you so much for being

Speaker 2 (02:01):

Here. No, absolutely pleasure. And, and you’re absolutely right. Um, I think in terms of COVID it has made a complete shape shift in people’s minds, you know? Yeah.

Speaker 1 (02:10):

Um,

Speaker 2 (02:12):

We, as a <affirmative> we, as a concept were pre COVID, but, but um, I think what the pandemic has done is made everybody implicitly aware of their own mortality.

Speaker 1 (02:22):

Absolutely.

Speaker 2 (02:23):

Mm-hmm <affirmative>, it’s the one thing I think that’s come out of this in terms of the, the, you know, the social movement that is, you know, death doulas, um, they’re more now widely recognized in terms of that holistic approach. So no, I, I it’s, it’s, it’s actually pleasure to be here and I’m, I’m, I’m, I’m kind of really excited.

Speaker 1 (02:38):

Yeah. So thank you. So, um, most of my listeners know that my background is as a hospice nurse and as an oncology cancer nurse. So I have worked with so many, been so honored to work with so many patients and families, and I have to say that most aren’t going well, right. Because of, and, and what you just said is that COVID brought the awareness that wow, death will be a part of my journey at some point for all of us and the, and those, we love which before we were like pushing it away and we still are, but we like treat it as optional. And when it shows up, because a hundred percent, it’s gonna show up at some point when it shows up and you try and put things in order, then it just doesn’t go well. So there’s just so much to, um, the learning about this common experience that we have, but then I wanna just share the best news with people is that end of life can go very well, really well.

Speaker 1 (03:36):

It’s a hundred percent guaranteed, and there’s two things I identified, which is planning ahead. Okay. So two things made it 80 to 90% better planning ahead with advanced directives and thinking about what you’d want and not want, and part of what you do with like these different, uh, beautiful apps that we’ll talk about in a minute. And also knowing the basic understanding of what end of life is like to care for somebody, what it looks like the natural way that it is because that a hundred years ago, a grandmother used to hand down to a grandchild and the removal of it, in my opinion, has created this denial of death. It doesn’t happen, but also then when it shows up it’s a crisis and a train wreck, because we don’t even have the fundamentals, but when you have been part or honored to be with an end of life, that goes well.

Speaker 1 (04:23):

And, and, and some do, of course it is the most life changing experience. You’ll never live your life the same way in the best way, because it connects you to just this energetic bonding of love and of humanity and of compassion and presence. And, you know, the fact that we’ve removed that I think is one of our greatest teachers about how to live, um, is directly related to some of the chaos. So when I see the gaps as a, as a practitioner, when I can see who’s filling in the gaps or things that we can do in those areas, as you’re doing, um, I commend you and it’s very exciting to share what you’re doing. So that’s great.

Speaker 2 (05:00):

I, I, I’m a veteran and there’s a, there’s an acronym that we use, uh, or I used in, in the forces, um, and, and is used widely, widely called the five PS. And that is prior planning, prevents poor performance. Yeah. And I think that can equally be applied to end of life and death care, because if you don’t plan

Speaker 1 (05:19):

Yeah,

Speaker 2 (05:20):

Nine times outta 10, it’s gonna be horrific. Whereas pre-planning sort of prevents that. And, uh, and people know where they stand and, and, and, um, it can be a pleasant and en enlightening end of life. I think.

Speaker 1 (05:31):

Absolutely. Absolutely. So with this planning, it’s so important that people understand that if we don’t plan it. So there’s several positives about planning is that it falls on your family to try and make these decisions, which is so unfair. And they usually don’t agree. I’ve only had two families out of a thousand that ever agreed. And they, they, they’re already having the emotional trauma of that. You have your end of life, but now they’re like, well, does mom wanna be ventilated or doesn’t she wanna be ventilated? And you know, of course the fear of death, like our, our stuff comes in. So the biggest gift that we could give our families is to choose for ourselves and tell them why we’re choosing so that at the time all they have to do is support our wishes, not have that. And then of course, it makes it, chances are you’re gonna get what you want.

Speaker 1 (06:20):

If you’ve made it clear what you want. And then there’s also a beautiful subconscious thing that I believe is that when we empower people to choose their wishes, before we get there somewhere inside of me, it makes me say, oh, one day, this is not gonna be the way it is now. I’m gonna make sure that I am doing every day, the way that I want. So when I know that one day, the journey won’t be here, it makes me look at my days, very different, cuz as we know with COVID, it can show up at any time and I just wanna highlight one thing and then I’m gonna let you take it over about what we do with legacy is that, you know, death is the number one fear in the world. And I have to tell you that working with so many people, I don’t think it, I was wondering what that fear is.

Speaker 1 (07:05):

Tell me exactly. And I think I’m gonna do a big, um, pull on this. What is the fear of death? And some people would say, well, I don’t wanna be in pain and I don’t want people to forget about me, but I don’t think those were the top. Number one. What I do feel from people is that we’re living with the unaware that we think this is gonna go on forever. And we know that in the back of our minds, I wanna climb that mountain. I wanna write that book. I wanna make that amends and we don’t get to it cuz we’re like, ah, another day, another day. And when the day came for most of my patients that actually got a time limit, I think they were like, oh my gosh, it’s over. And I didn’t do what I wanted to do. And that was the intense regret. I want people to hear that, cuz I don’t want us to fall into that cuz that awareness can do so many beautiful things.

Speaker 2 (07:54):

Yeah, no I, again, I agree Suzanne. I think that, and the fear of the unknown, you know, that, that subconscious level of not being here potentially. Um, I think it’s a mixture combination of things depending on who you are, but um, yeah, if that’s a split second, isn’t it ultimately

Speaker 1 (08:09):

It’s a split second, but here’s the thing that I share. And this is important for again, when we, we think about what is your purpose here right in life when I’ve worked with so many people for so long in cancer and in hospice and I’ve seen the truth about end of life and how natural and beautiful and spiritual and Beau and comforting and all of that. Uh, I have to share that with people because yeah, because like you said, it’s the unknown, but there is a lot known. We just don’t know it in the general public. And when people will talk about, and again, I’m not telling you what you need to believe, but I want you to know that these things happen over and over people talking about I’m going home, this spiritual home people talking about seeing their mother who has been deceased for 30 years. People talking about seeing angels, you know, whether you believe it or not, when you are, um, part of that, you will hold that into your heart forever. So there’s, you know, death is having a rebirth and I’m glad that it is cuz we’ve been dying for thousands of years. It’s time to bring it back and with all the technology that we can enter into this next phase, we can have it go that much better. So let’s talk about,

Speaker 2 (09:15):

Yeah, I think it’s interesting, isn’t it? Cuz ultimately everybody involved mm-hmm <affirmative> um, within the community, I like to call it community because uh, it, it is.

Speaker 1 (09:24):

Yeah.

Speaker 2 (09:24):

We’re not afraid of the word death. In fact, it’s interesting because I find part of our job is normalizing the conversation.

Speaker 1 (09:31):

Absolutely.

Speaker 2 (09:32):

So that the general public are kind of more, it’s easier to talk about. Um,

Speaker 1 (09:37):

Of course

Speaker 2 (09:38):

That’s the challenge

Speaker 1 (09:39):

And again, it’s the attachment to the word. So, you know, and people will say, oh, you said death, doula and it’s and it’s so interesting. It’s a word and it’s the association. So when we can now put a new association to that, I hope by the end of this journey for me, that we can say death as easy as we say life, because they are not, not exclusive of one another. They mean the same thing.

Speaker 2 (10:01):

Hundred percent.

Speaker 1 (10:02):

Yeah. Yeah. So let’s talk about your beautiful work. First. I want to ask you how you started this particular phase of your work you’re offering that you’re giving. Um, I know you have two apps that specifically moments and timelines that I do wanna talk about cause I wanna associate legacy and how important life reviews are to a positive end of life. And so I, I first wanna, how did you come up with the idea, um, what, you know, fueled that part of you and then we’re gonna explain what you are offering.

Speaker 2 (10:36):

Yeah, sure. So I, I, you mentioned at answer, I work, I’ve worked in health and social care, um, providing technology for 25 years, that’s kind of across the sector are more generic really in terms of provider management, um, nothing really to do with end of life and nothing to do with end user systems or applications either. Okay. But a little over two and a half years ago, um, my, my wife and my sister-in-law were primary carers for my mother-in-law who had a very aggressive form of Louie body dementia. And it was, it was a Tory time. We were, we were caring for a at home and um, uh, towards the end of life we had an element of respite mm-hmm <affirmative> um, I think three weeks was assigned to, to, to have mom in a, in, in a care home scenario. And it was in that time that she died.

Speaker 2 (11:28):

Mm-hmm <affirmative> that what, um, it, it was, it was, it was, it was, it was awful. It was very, very aggressive form of Lou body dementia. So it was very quick as well. And in some respects you, you might say that, you know, we’re thankful for that in some respect, but anyway, um, it’s cut a long story short after the, uh, funeral, you know, you go through family possessions as you do. And, and um, we were looking through a family photo album. It was just after the funeral and my son who was 11 at the time, just coming nearly, almost 12 said who who’s this who’s that to my wife mm-hmm <affirmative> and she didn’t have the answers. And then we asked my sister-in-law and then her brother and nobody had the answers.

Speaker 1 (12:14):

Right?

Speaker 2 (12:15):

Yeah. And with it, that family history is now gone.

Speaker 1 (12:19):

Yeah.

Speaker 2 (12:19):

We can’t get it back either. Um, right. She lost her dad some years ago and my son then turned around to me and said, dad, you work in technology can’t you do something that will benefit other people who find themselves in a similar predicament words to that effect anyway, rightly coming on 12. And that was the light bulb moment. Yeah. And I started chatting to people, um, right across the sector and realized actually that there are lots of clinical systems out there working in, in, you know, for providers, as I mentioned, technology solutions, but nothing really, that was person-centered for the individual. Mm. And we realized very quickly, and this was new to me, the notion of memory boxes mm-hmm <affirmative> of where people write letters, birthday cards and things like that for, for future events that, that they otherwise wouldn’t be able to celebrate.

Speaker 1 (13:10):

Yes.

Speaker 2 (13:10):

And that was the starting point of after cloud. That’s what we decided to do is create a digital memory box for you seeing hospice and palliative care,

Speaker 1 (13:19):

How beautiful, what, what awareness from the young ones. And I tell you, you know, our children are so intuitive and smart and if we listen to them more, we really need to pay more attention. Um, so that’s just wonderful that he, uh, planted that seed and prompted that it’s really significant how we’ve lost the not only legacy of families, but even just the storytelling in general. Um, I love when I’m like taking long rides with my, my parents or my mom, because that’s like the time that I get the most information, cuz you’re almost like in this. Right. And like, all we have to do is talk. So I ask her about her grandma and there’s things that I don’t know. So, so I love that. That’s really wonderful. Um, for me, I wanna just share my part of legacy and life reviews in a positive, good death.

Speaker 1 (14:10):

You know, when this is end of life shows up, it is so quick and everything’s going on. Right. And I, I think some of the most important things we’re doing obviously is symptom management, almost putting bandaids right on the moment somebody’s pain, somebody’s nausea. It’s, it’s just going so quickly. Um, one of the key components, if there is time is what I call in my stabilization phase is to do a life review for patients, ask them about their life, let them go back because that is so incredibly healing for them to do. It’s almost just this, you know, highlighted review of yeah. Their whole journey. And then at that point, there’s things that stop on and say, wow, that was, you know, a moment of joy or really something that I created or did that really was significant of value has a ripple effect. And then there’s moments also that people have pain or trauma.

Speaker 1 (15:07):

And if those areas have not been processed, closed, dealt with, you know, regrets, forgiveness, all of that is a huge place. And this is a great opportunity end of life. Cuz if it’s gonna happen, it’s gonna happen here. Now I will share this, that the people who’ve had that opportunity to do it. And the reason why they wouldn’t is because of the quickness of the end of life. We get a lot of people on transition phase is that the people who’ve been able to have an opportunity to do a life review and end access forgiveness and make sense of things, say goodbye, their end of life, their actual end of life have been the most beautiful I’ve ever seen. Mm-hmm <affirmative> so this is a very significant place. And of course we talked about planning ahead. So the more we can do this and also my gosh, I would love to share things that people probably wouldn’t know or, or not think of to share about me. So if I do it myself, um, how, how fun can that be? Yeah,

Speaker 2 (16:06):

So, so, so what we did is in, in, in the PI we wanted a pilot to, to sort of make sure that a, the app worked and we sort of built it on best practice really. So we, we utilized the app in real world environments in hospice and palliative care. Um, and what we did was we enabled them to, um, create content based on four key types of content. And that is letters, images, video, and audio, and all of those things combined. Yeah.

Speaker 2 (16:37):

Um, all in one moment. So they can use multiple different content types to create those really valuable, meaningful moments or things that they remember or things that they want to celebrate into the future. But one of the things that came out of the pilot and this is really in some respects where we look at legacy is a lot of people, um, within hospice said, we, this is great, fantastic. We love the tool, but we want, we want to see a chronological account of our life story with these moments. So, so from the beater came timelines because we thought, well, actually this is gonna be a something that’s available for everybody to make use of in the here and now you don’t necessarily have to be approaching end of life. Um, this is looking at your life events and your life story to create that legacy, um, utilizing those same multimedia channels. So again, letters, audio, video, um, and, um, and all of those things combined. Yeah.

Speaker 1 (17:39):

I really, I really love this, Darren. It’s like having your own highlight reel to the movie of your life.

Speaker 2 (17:44):

Yeah. Yeah. Oh, I love that.

Speaker 1 (17:47):

<laugh> yeah. And it, and

Speaker 2 (17:48):

It’s all you write that down.

Speaker 1 (17:51):

It’s also important that we have that say, and again, when we, the first thing we talk about in doula givers training is give back control to the person. So somebody is at end of life and they feel that again. I mean, you know, telling somebody they have a life limiting a time limit on that life that they have makes everyone sort of go into a shutdown and withdrawal a loss of control feeling. We want to use techniques of giving back control. They have every choice, right. That they can make except for safety. So we have to make sure they’re safe, but this is extremely important to allow people, even though they are bodies declining, this is their journey. We are here to support them and guide them. You direct me, what can I do for you? I feel like the same thing in your timelines is that I get to choose what the highlight reels are. You know what I mean? This is, this is extremely important. So, and also I think it’s just a lot of fun to even, you know, think in terms of that. So, uh, Bravo, and I think we wanna highlight what you just said is that this is not just for end of life people. In fact, the time to do it is like the whole journey.

Speaker 2 (18:59):

It really is, is fascinating. One of the, um, it’s, it’s interesting because one of the hospices that we supported, uh, one of the early hospices was a, a children’s community based hospice. Mm-hmm <affirmative> so a hospice for children receiving palliative care in the community mm-hmm <affirmative> and the chief exec of this particular hospice, um, his wife gave birth during the pilot. So he started to track. Yeah. I mean, I think that’s probably the earliest point that we’ve got is the birth date and, and of course that’s what starts the timeline, but that child will have a chronological, chronological account of their life story for life. Yeah. Um, one thing I will say is, is I rightly or wrongly, I utilize my mum, uh, who is 82, almost as a Guinea pig for the pilot. And I’ve had the most meaningful, valid conversations with my mum yeah.

Speaker 2 (19:55):

Than that I’ve than I’ve ever had ever before. And the things that I’ve learned through that experience, just, just having those conversations. Yeah. Uh, have been immeasurable value for me and cathartic also for my mum and, and they, and you’re right. They aren’t always, um, the best things in life. Uh, she lost her son. So my, my elder brother at, uh, I was four at the time and he was run over in a car accident seven. Mm. Um, I can’t, I can, I can’t even begin to fathom what she must have gone through during that period, but that was a pivotal moment in her life. That sh that is now on her timeline. Yeah. Um, in remembrance to him, I guess.

Speaker 1 (20:38):

Yes.

Speaker 2 (20:38):

Um, so, so yeah, really meaningful conversations that come out it as well.

Speaker 1 (20:43):

You know, I always love a win, win, win situation. And it sounds like this is, this is that because, um, you’re right. It’s like, it allows us to enter this space almost through a side door of benefits, you know, Hey, I’m doing your highlight reel. Let’s talk about it. But there’s so much that can come up. That can be clear. That can be healed. That can just be for you to understand as a child, you know, as a child of, of a situation, just there’s lots there, which I think is wonderful. Um, I wanna talk about memorials because this is another space that I feel like you can fill for people. And I wanna share from my work, how they’re not going well. So if we don’t prepare for end of life and we think it’s optional, when it shows up it’s a crisis, people are in fight or flight, the person’s dying.

Speaker 1 (21:31):

They don’t know what to do next. They scramble to put together a service or Memorial again, that usually doesn’t go well, because there’s just, it’s so quick, there’s so much trauma going on. And then, you know, what does that look like? So for me, I’m very, um, tapped into the whole journey of end of life, especially for my caregivers. Mm-hmm <affirmative>. So when they have complicated grief and bereavement, which much of this leads to when that person dies, they’re in go mode again, they’re like, okay, what do we do now? We’ve gotta get the flowers and put the thing together. Where is there time to just stop and be present with this, you know, physical loss of their loved one. And to start that healing process it’s not there. And so it co it complicates this tremendously. And usually not, not that I’m a money person, but I, I hear from people they spend way too much money.

Speaker 1 (22:24):

Um, usually because they, they don’t know what to do, and it’s just very confusing. And then when COVID hit, it changed the game again, because people were not able to have in person as they had been doing services and memorials. And this is what I wanna share is that, you know, during COVID times, look, we work with end of life. And there was never obviously a, a greater need for doula givers. At that time, people were like, well, we can’t go in the houses. What do we do? We just have to wait. I was like, no, no, no people need us. They’re calling us. We had tele doulas started. Yeah. But also, right. And which was incredibly effective. And it’s amazing how effective this is. So then our online Memorial services, putting them on, it’s amazing how beautiful they were and beneficial. They were because people can join from anywhere in the world.

Speaker 1 (23:10):

They can join from the comfort of their own home. And again, when you’re doing things like your apps, doing it ahead of time and having it again, if I, I would love to have my own say in my Memorial, you know, what I wanna highlight having that piece done takes so much of the pressure again and stress off that moment. So, so this is a big part of this whole spectrum of end of life. And again, what I call a good death is from start to finish and again, really, you know, supporting the person. So can you share with us about that aspect of the work that you do and what’s been going on with that? Cause I love it.

Speaker 2 (23:47):

Yeah. It’s a really fascinating area. We, so when you publish a timeline with within after, so it’s after kind of timelines, um, we also produce a QR code and the QR code effectively gives access to your timeline. So it can be shared with family. It can be, um, put onto, you know, Memorial literature, if you so wish in for church, you know, presence. Um, but the, but the key thing is with more and more people now being as opposed to buried, mm-hmm, <affirmative>, uh, it’s becoming almost normalized than there are lots of different ways of doing that as well. Yes. Um, the QR code can be placed pretty much anywhere that has a significant meaning for you as an individual. And then that can be read by future generations or anybody that you want, you know, who may be, it can be anywhere. I think that’s the beauty of it. So it’s a, it’s a personalized Memorial of you and your life story that can be accessed via mobile phone, um, or a tablet of course, anywhere in the world.

Speaker 1 (24:49):

Um, I love that.

Speaker 2 (24:50):

So yeah, that’s that’s but

Speaker 1 (24:52):

Yeah, so like the mountains of Shama sitting around, you know, the river, we can go on that QR code and just, you know, go, go down that beautiful stream of celebrating our mom or legacy or thinking or, or whatever it is. It’s, it’s really beautiful. It’s really powerful. Um, but again, I’m seeing where the, this, and I hear from my families all the time where the major issues are and many of them are stuck in regret and this happened so quickly. We weren’t ready. I, I, nothing was prepared and they feel like they can’t move on from that. And that’s so upsetting, but, but I help them that they know that they can, but of course, if we can implement things beforehand. And so what I keep thinking in terms of what you’re talking about is not just, um, you know, really appealing to somebody. I wanna hear your story. Not that it’s a Memorial, not, but like for my mom, like she’s 83, she has some interesting stories as we all do in life to let her say, mom, here’s a tool. I want you to write your story. I want you to think about it. And then of course I can, you know, go and ask her questions about certain things. So it’s not just, and then of course it could be her celebration of life at the end, but she would really love that. Because again, it’s, it’s celebrating you

Speaker 2 (26:14):

It’s real time. The other thing I think is just to touch on your point about people that are unprepared or unplanned, or maybe going through grief or bereavement of some description, mm-hmm <affirmative>, you can apply a timeline retrospectively. So what we’re finding actually is that for grief support,

Speaker 1 (26:31):

Oh, I like that

Speaker 2 (26:32):

It’s there as a pillar to, to sort of lean on. Yeah. Um, you can apply a retrospective timeline, uh, and obviously publish it and then that <inaudible>, it again, can be somewhere that’s that’s meaningful.

Speaker 1 (26:45):

So, you know, what’s so fascinating about that is in our grief guide for doula givers, it’s the reprocessing and reframing that has been a huge tool in helping people go back and reframe that grief. And you’re saying we can not only do that, but we can put it in the timeline.

Speaker 2 (26:59):

Absolutely. Woo.

Speaker 1 (27:01):

I love it. Very <laugh> really good. Well, Darren, I mean, this is just really beautiful work and I thank you for, you know, bringing this into the world. I, I think it’s so exciting and I think there’s going to be so many people that are interested in taking advantage of this wonderful tool that you have. Can you tell our listeners where they can find you and get more information and get your apps?

Speaker 2 (27:25):

Yeah, absolutely. So, um, the, the website is, uh, after cloud dot code at UK. So all one word after cloud, as it, as it says there dot code at UK, I think similarly they might be able to approach it through doula givers. Yes.

Speaker 1 (27:39):

Yes. I think

Speaker 2 (27:39):

It’s,

Speaker 1 (27:40):

Um, we’ll, we’ll have the links for them as well.

Speaker 2 (27:42):

Yeah. Perfect. So, so, um, I’m on LinkedIn, we’re on Facebook, we’re on all various social channels, uh, after cloud moments and timelines and, um, yeah, we’re here to support and help. And also, you know, we’re really at the beginning of the journey and there’s lots more to come. Yeah. Um, various people have said to us, we’d love to see our timelines, uh, sort of put together a little bit like a genealogy site, you know, so we are looking at real time ancestral sort of genealogy. Um, other people have asked us to pull in their social media feeds, which again is a development we’re working on currently. So there’s lots of things happening.

Speaker 1 (28:17):

So exciting. Yeah. Well, thank you so much. I look forward to like just growing and seeing what you do and actually doing timelines and moments myself. So thank you so much, Darren. Everyone. Thank you for being here. This was an exciting episode. I, again, thank Darren Evans, our guest today, you can find all of his links below. My name is Suzanne O’Brien. I will see you in the next episode. Thanks everybody.