Grief Coach at HealthIMPACT
Emma Payne sat down with Sharp Index board members Shereese Maynard and Janae Sharp discuss Grief and technology at HealthIMPACT Live.
So many of us don't know how to support someone who has lost a friend. Emma Payne has been developing mobile technology her entire career, and decided to start Grief Coach.
You can learn more about her work at https://grief.coach/. Payne was asked to speak at a funeral, in front of people she hadn't seen in years. She hadn't seen them since her husband died by suicide, and she had wondered why for ten years. The entire visit, people said that when her husband died, they had no idea what they should say. She realized that the waiting without saying anything was a mistake. Payne had years of technology development experience, and started Grief Coach. Grief Coach is available worldwide, and thanks to a partnership with Sue Ryder, free in the UK.
HealthIMPACT Live is an event where decision makers in healthcare meet to discuss current ideas and solutions that work.
Transcript:
Janae Sharp 00:00
Hi I'm Janae. I'm the founder of the Sharp Index. And we are a nonprofit dedicated to improving clinician mental health. And I'd love if Sherrese and Emma, you could introduce yourselves and tell us more about who you are.
Shereese Maynard, MS MBA 00:26
I'll start because I can't wait to hear about Emma. Um, I am Shereese Maynard, and I am the founder of Asksherese.tech, the co founder of nostra data, medical and a new company that I'm launching, I don't know if I even told you Janae. It's called Fish data. And it's all around women's data in the Health Tech sex tech and fintech sectors. And I'm very excited about that. But I also, in my daily work, I get to work on both sides, I work on the health tech side. And I work on the side of medicine. So I get to see from both angles, how patients and doctors deal and interact with tech in different facets of healthcare, but also how physicians are trained, and how they deal with coming into the field, I call it from door to floor of dealing with them technology in their learning and how that impacts their journey. So that's who I am.
Emma Payne 01:23
And my name is Mr. Payne, and I'm the CEO and founder of a company called Grief Coach. And we are a text messaging platform that delivers ongoing expert, grief support to people after someone's died. And also to friends and family who want to help them might not be sure how.
Shereese Maynard, MS MBA 01:39
I'm just gonna let you know after this interview, I'm going to become obsessed, because I think that just the idea. I'm like, I feel like you guys need to have everybody in your database, because everybody will experience grief at some time. And I want to see how that works.
Janae Sharp 01:54
Yeah. I've been obsessed with you for years, so it's fine. I thought about this a lot, too, because some of the best advice I got when John died was that it's harder after everyone forgets. Like it's harder. And I think I spoke to you some during that time when it was like you're still in the midst of things, and people ask you what they can do. And you're like, good question like, I don't know. But uh..
Emma Payne 02:26
yeah, like that experience. And yes, you're right. That is the space you were in when we met, Janae. Like, that is what we do so beautifully. Because everyone has the same experience. Somewhere around two, three months, everyone's going back to their jobs in their normal life and the grieving person, maybe the shock has worn off enough. And the grief is even more like the pain is, is high, right? You're in acute grief. And everyone else has gone back to work, maybe you've been required to go back to work because guess what your company has no bereavement benefits or paid leave policy. And so we're sending these texts that sometimes I read them, and they just like, bring tears to my eyes, we work with people that focus on some that work with acute grief. And we're texting, not just you, when your husband has died, and you're at three months past the time, and everyone's vanished, we're texting you. But we're also texting the friends and family who probably do have people that want to help and they just don't know what to do. So we're telling them, we're telling them, hey, you know, tomorrow will be three months since John died, a lot of people will be going back to their regular lives. So this is a really good time for you to we'll reach out to Janae. Right and see if she wants to go for watch my morning. Just crack empathetic and practical and over time. And, and it's incredible how, you know, that's what people want. People want to help actually, we just don't know what to do. And if you ask the grieving person, what can I do to help they're like, I don't even know how to tie my shoes. It's putting more onus on the Griever. And we're trying to take it away. You don't have to do anything, just sign up, we'll send you stuff and we'll send stuff to your husband so that he knows better how to support you when your dad died.
Janae Sharp 04:06
Yeah, I think that can be really, it can be really isolating. And I've thought about that. More recently, even in terms of like, people are going through all these all these stressful events on stressful events, and it's isolating, like, an even when you're trying to find support, like it doesn't exist. Even let's assume you have all the money in the world. You know, let's assume the current healthcare environment where nurses are, you know, nurses are like everybody's quitting. And sometimes you're like, Well, I get it, you know? Yeah, I'm curious about what what you've seen, like, how are things like, what is the state of people that you've seen?
Emma Payne 04:59
Yeah. So our Clients are often healthcare providers versus people who are required to birth 13 months of bereavement support. Every single one of them is understaffed. Every single one of them has less people than they need, particularly in the Social Work bereavement care space, right? Everyone's exhausted we we sold to like a hospital in Nevada, two weeks later, the bereavement coordinators husband died, like 57% of working age, Americans are grieving a recent loss, at least, we have a 19% increase in mortality from 2019 to 2020, which is like a spike we haven't seen in 100 years. So the feeling that you have, which is like everyone's struggling, is not just a feeling it's fact. That's what's happening. But we don't have the systems, the bereavement benefits, the policies, the support mechanisms to support the even the previous volume, neverminded the new volume, right, like everyone's struggling, and you can't, like you said, Janae, like, let's assume that you live in a city where there are therapists, and you can afford that you under bucks an hour, even then you can't find someone you're going to have a six month wait, if you're lucky. And that's and that's assuming that you don't have the barriers that most of us have. And grief disproportionately impacts the populations that can't access that support anyway. Like, it's it's, that is what we see it all day, every day. And that is why I think that we have the feedback that we do from the subscribers themselves that people getting texts. People say like, oh, Emma, the work must be really depressing, working in grief and like, nope. All day, every day, we have people sending us like hearts and thumbs up. And thank you so much. And this is really helpful. And oh, my husband made a reservation at my dad's favorite restaurant and Lola, like, the gratitude from people when they are getting when someone is listening to them, and giving them some useful support is so high. And that's why because it's hard to get help you feel isolated. So you're just happy, like someone's sending you stuff that's useful. Right?
Janae Sharp 07:06
Right. That's, that's useful. I'm interested in what you said about how it disproportionately impacts populations that don't have access. What does that mean? Well, I mean, I believe it and I know,
Emma Payne 07:21
you know, I don't have the data in front of me, but it's something like, you know, a black 10 year old child is, you know, three times more likely to have lost a parent and the more rural populations, we get really interesting response to that some people in rural populations because they can't, there's more deaths, less support groups, right. So the populations, both geographically and demographically that are statistically more likely to experience loss earlier in their lives. And then what are the repercussions of that? Unsupported grief over time, are also less likely to live in a place or have the bank balance that allows them to get support. But again, even if they could, even if they're that population, the waitlist and shortages of trained professionals right now we're making it impossible anyway.
Shereese Maynard, MS MBA 08:15
And even more than that, it's strange, this particular conversation I had last night in a group, when we were talking completely about access. And they were, you know, I always say that I kind of get in trouble for this question. Because I tend to be more honest about it, it's like you can stick stick access on every corner. And that does not mean that people can actually engage in it in a way that helps them because when you look at these marginalized populations, not only if even if you get across the threshold that they can have access towards that they can afford to pay for it. They don't trust it. So they're not likely to engage with certain things if they just see a pop up clinic in their neighborhood. And that type of thing is like, I don't know, these people. And historically, we've been treated bad by these systems. So they don't seek out the help. And, again, if we're talking about the innovations in this space, and some certainly innovation like you're providing, it allows people to engage in a way that they don't have to be all the time face to face with someone they may not trust. But it allows them to engage in a way that's comfortable and safe for them, which is the most important thing. If I need to reach out for something. I might not go into that behavioral health office, but I might call somebody, I might text somebody and say, Hey, I'm feeling a little down today. Can you help me through this or you know, I'm hanging by a thread here and that type of thing. People are more like I find, if they don't trust the system, they will engage in other ways just to keep themselves afloat. You know,
Emma Payne 09:53
I think that's why we have these is one of the reasons, people tell us, this is one of the reasons that we are used as much as we are. It is non invasive, it is texts, and we are used to using texts for personal things. Right now, about 9% of our subscribers globally are men, and 90% are women. And that number has actually been inching up a bit from like 6% 7,8,9. Now we're at about 9%. We have been doing a ton of research this year and looking at our data in different ways. And what we've now found is that, although they are a small percentage, they love it the most. And I think it's back to the populations, certain, lets us guys in this case, are less likely to go out and get support if they're grieving. And they might be less trusting of a certain, you know, whatever pop up clinic, or they don't want to sit in a support group, but they don't want to share with strangers or whatever. But they'll take text. And they love it even more than are like, average baseline because it's what they're getting. It's all they're getting often, right. They're not talking to their friends, they're not going through support groups, they're not reading a book, they're getting this thing, it's easy. They can sort of trust the sources, because it's a bunch of expertise. It's not one person telling them what to do or what to feel. It's a range of opinions and thoughts that they can draw on over time. I went had a dinner like two weeks ago, with one of our subscribers, which was a cool experience. A guy my age probably like 50 ish, I would guess. And he was like, received a subscription as a gift when his dad died, and he thought this is kindof goofy. Like who wants texts? I don't need any help. He has now bought more gift subscriptions for other people than any single one of our subscribers. And he buys it all for guys. And they're all having the same response. Like at first they think I don't I need this. But then yeah, you do. It's it can be crippling when someone dies, and there's no one to talk to about it and you don't trust other things that you might go to. But text is accessible and easy. And it's personalized, right? It has your actual dad's name in it and your name in it. And it knows we know what the cause of death was. So we can speak to the suicide if it was a suicide. If you were a caregiver, for many years before the death will speak to the caregiver experience and the relief that you might experience. And that's normal, too. It's like that normalizing personal support that we all want when we're struggling.
Janae Sharp 12:18
Right. You should share with everyone how you got into that space, like
Emma Payne 12:24
just might have started. Yeah, not sure. So my friend died in 2015, at the end of 2015. And he had asked me to speak at his funeral, which I agreed to do. But it was a very, very daunting proposition because he was the best friend and also second cousin of my husband who had died a decade prior by suicide. So essentially, what I agreed to do was fly across the country. And stand in front of a couple 100 people, many of whom I had not heard from when when Barry died. So it was a scary thing to do. And I did it. And in the end, I come to think of that as like, the biggest gift ever from my friend because I spent 72 hours from the moment I sat in my pew to the pub night with people saying, oh my goodness, you're Barry's widow, I'm sorry. Sorry, I didn't reach out. I didn't know what to say. I didn't know anyone who had died before. Then so much time passed, and I felt guilty. And I got on my plane ride home. I'm like, this is the stupidest. I spent 10 years not hearing from people and inventing all kinds of reasons why that may be in today. You know, you probably have some of that experience to like with a suicide death. Especially I was like, invent the reasons why I'm not hearing from people.
Janae Sharp 13:45
But I didn't I was just like, they just can't handle it. Okay, like, okay, like, or it hurt more than anything. It. It felt like, it made me understand better why he died. Because he had reached out for help to people. And I was like, people act like there is all this help, but we don't know how to help people. We don't know how to deal with death. Like, no, you die alone. Like, and when they go through death like these people were not there for him. Like even if they also mean like, that's what it felt like. It felt like wow,
Emma Payne 14:23
it is such an isolate as the experience of being in deep pain. And not being able to find a way to talk about it with someone who will listen to you is hard and that and you're right. And that way there are similar things. So that's why like, Oh, my plane ride home from the funeral. I'm like, This is insane. I've spent 20 years building like, like mobile and tech solutions to help people in all kinds of different situations. There's got to be something for grief. Like, can't we just text expertise of the Griever and tech, some date reminders so the people that love them, period?
Janae Sharp 14:53
Yeah, so maybe I didn't approach it the same way where I made up excuses. I was just like, Well
Emma Payne 14:59
yeah, probably how to help her I was more like, oh my god, you think I'm a murderer? Yeah,
Janae Sharp 15:04
I was like, Yeah, well,
Shereese Maynard, MS MBA 15:07
I think that people don't know what to do, or they don't know. Because the other thing is, like I always say Life Walks In. So those people who were there for you like at the funeral right after, they do have to get back to their normal day ADLs activities of daily living, right. So when it comes to the first, I always think and I say this from, like I said, because of my own experiences, like, you don't know if what you're saying to them is a bad reminder of something you don't know if it'll be triggering for them. So you don't know what should be doing. But also, it makes you in a way also feel helpless. And then that the time factor comes in. So you're like, oh, I should have said that before. But now it's been so like, they're gonna think it's not genuine that type, all those things were us, we typed. But really, they are in the only way.
Emma Payne 16:03
We text people exactly that like think people think, Oh, I don't want to, you know, reach out, I don't want to upset them. They are already upset, right? So we can text the person and say, the person's upset. Unless you can recreate their love, why don't you share, you know, share a story about John then How funny was when the kids were born or whatever like, because people think that they have to somehow take the pain away. And so we give the supporters a clear understanding that you cannot, right? You know, if the person starts crying, when you're talking to them, consider that a gift that's healing, they're sharing, you don't need to feel bad that the person is crying to just give people that as these basic pieces of expertise. And something I just want to say that's really important, like, so that's nice, great, give people the expertise. But the thing is, this works. When we're grieving, we're increasing, we're very vulnerable, right? We're at increased risk for everything from anxiety, depression, substance use, sleep issues, hospital visits, illness, suicidal ideation and completions, like we're hugely at risk when we're grieving, nevermind, lost work, workplace accidents, and so on. If you get a bit of support and understanding in the way that we're delivering it, your chances of all of those outcomes reduces. It's so simple. Give people that little bit of comfort that it's okay to reach out and share a story about John. And you don't need to worry if Janae starts crying. And then this works. And then all of a sudden, we don't have all these like negative health care outcomes that are commonly associated with bereavement. Like sometimes I'm just like, the simplicity of it is what's incredible, right? Like, we're not waiting for the invention of a vaccine. Here we have the wisdom, deliver it to people in a way that is accessible, and that they will trust it. They'll, they'll take it.
Shereese Maynard, MS MBA 17:51
It's like I tried to convince them on the policy side and trying to convince on my clients when they talk to me about their policies on bereavement and that type of thing. I'm like, why don't you just offer it as part of your FMLA? Yep. Because the grief process is a part of your family, you. If you start a family and someone leaves that family, your family is in essence, dying, too. So that's part of the process. And so from a policy place, the whole bereavement issue, I think, should be a no brainer for people and if companies were able to offer a service like this as part of that package, that would be awesome. I would think, yeah, they can, they can slightly,
Emma Payne 18:35
we're happy. Often we have some employers that offered a brief of benefit piece so they can deliver to the employers. Right? Yeah, I mean, it's a no, it is a no brainer. And if you look
Shereese Maynard, MS MBA 18:46
at even some of the things that are going on now, nowadays in offices where people get offices Shut up or shut up, or schools, and they lose team members or people who they work with,
Janae Sharp 18:56
yeah, I was about to ask that, like how
Shereese Maynard, MS MBA 19:00
it should be a part of the makeup of the organization
Janae Sharp 19:05
Agree. Like, how does that work for healthcare, like when we just talked to a group that had lost a physician to suicide? And it's interesting to see. I mean, the same patterns when people come talk to me, it's the same conversation where they have this huge need to talk about it that hasn't been met. And it's been a little bit overwhelming during COVID. And now talking to people who are quitting healthcare, there's just so much to carry. And I wonder, that's why like, is it text going to cut it? Do you think let's like, I have some questions.
Emma Payne 19:50
Yeah, no, they're the so we have 54 relationships in the grief coach, that's actually 56 Because we just added twin brother and twin sister 56 relationships. That's kind of important, ranging from things like, you know, Husband, Daughter, blah, blah, but we also have patient. Right? caregiver, physician, we have text messages that are written specifically for clinicians that speak about all the loss that they see and how it is still, you know, you don't have to bring in human version of yourself, to work with others, all these things informed by people like way when Sato who's an amazing pediatric ICU nurse who focuses in clinicians in grief, people like Megan Devine, who has a whole series of clinicians and patients. So these things we're now delivering via text. And if people choose those relationships in the system, we send them that support in terms of well, text cut it, I've started to think about this. So there's a pyramid that people when it's sort of using a public health approach to bereavement, you know, 90% of the bottom 5%. At the top, we do an excellent job with those bottom two tiers. And then we're kind of triaging for an organization if an organization. So right now we're working with a very large charity in the UK called Sue Ryder. And they are now using us to deliver free grief support for everyone in the UK. And so, when people come in an incredible number 95% of the people that we survey, say this is really helping with my grief. And there are these people. But it also then lets us sort of like triage to the top the people that want more. And so then these large charities hospices can figure out where to put their precious hours of bereavement care that they actually have to deliver face to face. They're right, put the put your time where you need it. And then the bereavement coordinators themselves are so relieved, because all of a sudden, everyone can get something. And they can figure out where to spend their time, instead of going home every day realizing that they only reached out to, you know, four of the 800 people on their on their caseload.
Janae Sharp 22:02
Yeah, we've talked about that somehow. Technology can be a good way to help identify who, who needs more support. In sharp indexes our work, we also found that the worst the people who were the worst off, did not want to engage. And I wondered if you have like, do you measure where people are at? Like? I've wondered if Tech's would lower that barrier, honestly, because it's not like I have to tell Shereese I'm struggling, which is a hard conversation to have, especially as like a clinician, like a physician is not going to tell people that like have you found that like our
Emma Payne 22:49
we do get some so we do so my subscriber support team are all trained mental health professionals, because we do get some crisis in bounce, right? Maybe, you know, out of a few 1000 out of out of 1000 new subscribers, maybe 10 of them
Janae Sharp 23:05
That's a lot, by the way.
Emma Payne 23:08
That's just not small number. Yeah. So back to this sort of, yeah, yeah, just model. I mean, a hospice. So like, let's use hospice with the Western Reserve. So this is a large hospice that we work with. In Ohio, they see about 6000 deaths a year, that like a 12 person bereavement team whose job it is to support people and grief doesn't just last for a year, so and then they're being asked now to reach out and do community support. So it's not even hospice families. It's okay, there's been a school shooting, or there's a school suicide and we need you to go out into the school because hospices have this 12 person bereavement team, we can imagine how maxed those people are. And people don't go into practice. It's terrible. So, and you don't go into bereavement for no reason, you're probably there because you actually really care about this work. But then you cannot meet demand. You cannot. It's impossible. And so this idea that we can make sure everyone gets something and that text will seem, I mean, I'm not making up the 95% that's all of our surveys. That's the lowest response. That's the lowest percentage of people who have said these texts helped me with my grief. So it's at least a way to figure out where to put those 12 people's hours. Right every day. You know? It's,
Janae Sharp 24:30
is it mostly for acute? Like, let's say you have someone who, like a healthcare worker will use a health care worker who has lost someone you know, or who has lost a patient and they just kept working. You know, maybe they are still not recovered from the trauma of COVID
Emma Payne 24:52
Oh my gosh, I ‘ve got to send you some of our caregiver like our clinician texts because there's some of my favorites that are so beautiful in the way that they speak to people who actually spend their days in these spaces. I'll send you some as examples. But yeah, so we have a cute, for sure. But we also have, like we work with hope Adelman, I don't know if you're familiar with her work, but she's very well known author. And her latest book is called this, she writes about the long arc of grief after the after grief. So that's for people who are at least three years out from the loss. So the texts change depending how far you are from the death, and also how far you are from when you signed up. So we have people coming in from a death that was in like the 80s. And this is just like an accessible way for them to get some support that they didn't get back then. And for sure, the experience of having lost so many patients, and not knowing where to put those with those feelings. So the timeline doesn't matter. Coming anytime. Let's get to how do we get it out there to everybody? You know, that's the question exists, and it's working. So how do we get it out? How do we put it in people's hands?
Janae Sharp 26:06
That's a good point. Because there's a huge gap in healthcare, like there's a gap. With engagement. There's a gap with getting things going like the health tech sales cycle is notoriously discouraging. It's very just as hard. What do you think Shereese? Maybe you know about that.
Shereese Maynard, MS MBA 26:28
The sales side a little discouraging might be too strong a word?
Janae Sharp 26:31
I think it's really not
Shereese Maynard, MS MBA 26:32
I think inefficient I think the way we build around sales cycles is inefficient, I think. I think the way we use healthcare in this country, the way we set it up, the way we sell tech and all that kind of stuff, it's kind of counterintuitive to caring about people. It's like we always, we are always looking at the ROI. You know, I always say that one of the, when you're particularly a person like me, when we were the I have an MBA, so we have to wear that hat when we're dealing with healthcare organizations. And one of the conversations I get an often now is, you know, a decade little bit more than a decade ago, we were telling these organizations that they needed to start looking at data is an asset on their books. And there was people were laughing at us, like, what are we going to do with their data and all like, nowadays, we're trying to get them, you need to stop using it as like, you own it. It's like completely turn. So, um, when we look at the different solutions and stuff we're trying to sell in healthcare, it is not the environment of care. It doesn't like you know, one of the things I say often Janae might have heard me say it in a couple of speeches, like you can't pay people to care, what we're in Healthcare IT set up to do is to get others to bind to the idea of our solution. So when you look at grief, it's like, from a healthcare IT side, 100% people will look like, well, how do we package that up? You know? Grief isn't sexy.
Janae Sharp 28:20
Where's the margin? Where's the guy.
Emma Payne 28:22
And I also like, by definition, the patient has just died. So the healthcare system actually stops.
Shereese Maynard, MS MBA 28:28
That's what I'm saying. It's like, they're like, Oh, we're out of it. And that's why I always say that we need to look at the end of life is a continuation of the process, not the end of that process. Because support needs to happen around the whole process. And it's not that just the person dying, even if you look at like palliative care and that type of thing. It's affecting a lot of people, and those people have a wholeness to them that needs to be taken care of. So our approach is, um, our approach is more of a, I call it a one off approach, like, Okay, we're going to take care of this patient, so they no longer patient, and then everybody needs to go away, take their money and walk away, you know, but what it should be like is like, how can we perform a circle of care that were taking care of the patient and those who those who take care of the patient, so to speak. But we have completely, I believe failed at that, like we have more options now. But it's not something that we tried to scale, or that we've seen as a part of the whole, so to speak, because we now know, and we've known for some time that you can't separate mental and physical health, one feeds the other. So if someone's going through change, even someone who's going through their own channel where they know they're going to die, you know, right now I'm dealing with cancer myself. Every time I go to get my bloodwork done, I'm like praying, but I know one day that's not going to turn out so well for me. So it's like As the person is going through these changes, there should be some support that helps them and the people who care for them, like 100%, I tell my husband every month, you really need to see somebody about your anxiety around my situation, because it's like, I'm the sick one, but I spent all my time taking care of how he's responding to my sickness. You know, it's our little joke, but it is real, the people who will take care of the person are going through their own thing. So, you know, I think from a health IT perspective, we need to stop looking at people as this thing we have to sell to, and this thing we have to make money from instead of saying, hey, we need to take care of the whole person, and then the money will come because it's certainly well, if you are providing something that first of all is preventive, or that stabilizes, or that create takes care of the wholeness of a person, the world will beat a path to your door. You don't have to close off and say, Oh, no, we're only going to take care of you until you're dead. And then
Emma Payne 31:04
yeah, and right now. So we're in the midst of Link reproach caregiver, which are people after a diagnosis, particularly a terminal diagnosis so that we can be on the whole journey, right? And let's see what measures we can impact in terms of the quality of the death and how anxiety was measured towards those ends and having the interventions that were so on and then continue to support that caregiver. After the death right now, we're only after the death. So we're building out these two because you're totally right. It's a journey. Us. You don't if your wife is given a terminal diagnosis, you don't wait until she dies to start grieving.
Janae Sharp 31:41
Very. Okay, I have one question. Like, what's the best thing that you had from this experience of building Grief Coach?
Emma Payne 31:53
Oh, I have never. I've been lucky. There's lots of work that I've done over the years that I felt really good about, but never like this. This was the first. So it was the anniversary of various death in August. And it was the first every year the anniversary is like a real struggle for me and I just find it very, very difficult. This year, I went ziplining with my kids, and felt great. I was like, Oh my gosh, Grief Coach has freed me from my own grief in some way. Because I just feel like I'm being so helpful and so useful to so many people all day and every day as we see the feedback come in. So Grief Coach has has has somehow let me tie a bow around my own grief journey, which is pretty amazing.
Shereese Maynard, MS MBA 32:46
I would say that's how life gives back to us. It gives, and life must replace it
